Both of Us (In Spirit)

Celebrating his birthday

2011-06-12T09:54:00.003-05:00

Tomorrow will be JB's 36th birthday, and even though he is no longer here in the flesh I am hoping we all are able to have some pleasant memories of the times we spent with him. I am thinking about him now and remembering his last birthday. Ever since I first met and fell in love with JB, I recall that his birthday was not his favorite day of the year. In fact I mostly remember him feeling fairly unpleasant emotions most of that day. I would do my best to be sensitive to his feelings, but often times we ended up having a bit of a ruffle. Perhaps the idea of getting older and slowly having his youth slip away was tough to endure.

However last year was different. Together we made a choice to try to make an event out of his birthday weekend. JB was feeling pretty good in the month and weeks coming up to the day. Earlier in the year he had open heart and lung surgery to remove tumors growing there, and those wounds had healed well enough that he started practicing soccer and had been back at work steadily.

The plan was to make a big deal out of the day rather than dwell on the negative aspects of getting older. And in JB's mind it was a pretty big deal to make it to another birthday and surviving through all the treatments he endured the previous 3 years. That Saturday, June 12, we invited all sorts of friends to the house for the evening to celebrate JB. It was a great turn out, the weather was mostly cooperative too. There was good food and a fire on the back deck.

Sunday was arranged by several of JB's sisters. We arranged to meet in the NE park only a few blocks from the house. A potluck picnic provided the food and drinks and the family provided the warmth of conversation and engagement.

Earlier that Sunday morning, JB had fulfilled his wish to play soccer. He was visibly thrilled with the idea that he would be participating in an actual game. I recall him putting on all his soccer gear and running out of the house early that morning to get in the game such that he could later attend his birthday picnic party.

When he arrived at the park you could see he had enjoyed his time. He got roughed up a bit playing, but settled right into the family gathering. The afternoon wrapped up and we left the park. Finally a birthday weekend fitting for such a wonderful man. My love I wish you happy birthday.... I so wish you were here with me and all of us to share your day together with.

The new family members

2011-03-26T09:20:00.004-05:00

I found two sweet looking young cats to adopt this past week. I have been looking casually for a cat to keep me company. I have missed Tegan, my previous cat. She was such a sweet heart and good companion to both JB and me. It was not really possible to even entertain adopting a new family member since Tegan died last summer, had to focus more of my energy on the most important family member.

Now that the house has been very quiet and I find myself lacking anything to focus my attention on at home, I have been moved to adopt a cat...or two. So here I introduce the two new members of my family. Leela is a female tortise, about 7 months old. So far she is a bit reserved and somewhat shy. She will come on the bed and lay between my legs to fall asleep.

Adric is the name I am giving to the boy cat. He is also a 7 month old cat, a Russian blue. He is full of energy, bouncing from room to room and very affectionate.

I have them sequestered to the upstairs of the house, to get them adjusted to each other and their new environment. Also this will help keep control of the damage they might accidentally do with their playful behavior.

Thus far they are both getting along well together. Adric is a bit of a overwhelming presence, he loves to play and will try to get into a playful fight with Leela. She tends not to want much to do with this, will hiss at him and try to get away. Otherwise they do well together when they are both calm. Last night they spent the majority of the night sleeping together near me on the bed.

Beyond the news of my cat adoption, I would say that life remains in a state of flux. It seems like a skipping record to mention that it is difficult to take in each day on my own. Work goes well enough, I am very fortunate to continue to have a strong presence of friends and family to help me through. A good time was had last weekend at a gathering of friends to celebrate their acquisition of a new cat...games were played and pizza was enjoyed. I will be having my own cat-warming party soon too I expect.

One final note for his post...WINTER SUCKS! It was in the 50's last weekend, with certain signs of spring in the air (tulips in my yard were popping out of melting snow even). But on Wednesday here we got 7 inches of snow and since then bitter cold. It is 16 degrees this morning and I am so tired of winter. So everyone pray that spring makes it to Minnesota this year, it will make me happy.

Adjusting

2011-03-13T10:00:00.002-05:00

Well, it has been over a month now since we lost JB. I have been fortunate to have the support of friends and family as the time has passed. Nothing is easy about adjusting to the new reality that I am on my own again after 10 years of a wonderful and loving relationship.

The house certainly is a quiet place most of the time. The evenings I have to myself pass much more slowly than I would like. I have little to keep me occupied as I was so used to keeping up with the needs and desires of my partner. I realize that I now have this time to do what ever I want with, but most of the time I have been not taking much advantage of it. Knowing that I have this freedom is important, and giving myself the time to develop it into something useful is healthy. The weather does not help much. Spring has yet to show its face and the winter grip tends to keep people still shored up in their warm homes. I look forward to warmer days and the energy that injects into all of us, with optimism and desire to be with people outdoors again.

My work has been a stabilizing force, but even there I find some weeks more difficult to get through than others. I find it difficult sometimes to find it motivating or valuable, as I wonder what it all means relative to the life we could be living. In the absence of a loving partner it does fill a gap of time that I would surely be spending at home by myself, and my work mates are pleasant people to interact with.

I have slowly been sifting through the paperwork that needed to be dealt with. JB's death certificates arrived this week, delayed many weeks because no doctor had signed them originally. In retrospect, this passage of time has made dealing with the paperwork a bit easier. Thus far there have been no major problems, aside from the realization that gay couples are certainly in a secondary class of relationships. Everything that was in JB's possession needed to be specifically documented with a beneficiary, otherwise my status as his life partner was meaningless. I am not recognized by Social Security to obtain the token death benefit which is awarded any other married couple.

Marriage was something JB and I discussed occasionally, but we were comfortable with our relationship that the title was not a driving goal. However we did register as domestic partners with the city of Minneapolis and the University of Minnesota recognized our relationship. I have always felt that marriage between two men should be allowed in the civil court of law, to allow us the same rights all other married couples benefit from. I feel our government needs to treat us equally, and have been understanding if individual religious organizations refuse to give there blessing. I continues to amaze me that people believe that allowing the government to condone gay marriage in some way gives gay couples more rights and benefits. Learning first hand just one aspect of being in a relationship, the opposite is true. Gay couples have far fewer rights compared to all other married couples. In Minnesota alone, there are 515 statues that discriminate against gay couples and families compared to heterosexual ones.

It is hard to really write to what I have been feeling this past month. Nearly every morning has been difficult for moments, causing me tears of sadness realizing another morning begins in my life without JB. Memories will always be flashing into my mind about times we spend, good memories...and the memories of his last moments as he passed away in our home. Songs come on the radio that remind me of him, scenes in movies of loosing loved ones are more painful and spending time with loved ones reminds me that he is not there to share their warmth and friendship. I am not alone, as all of us have or will deal with the loss of someone especially close to them. And I am not wallowing in pity as I know that I still have a very fortunate life, the one I have lived and hopefully the one in my future.

So, I wait for time to pass and very much look forward to this deathly season to finally pass. How we as a culture have come to terms with getting through each winter amazes me. Winter is so harsh, and so long in Minnesota and death comes more easily for man and creature. That is why spring and summer are so cherished here. We have a greater appreciation for the bounty and life that will soon be blooming, and my appreciation will be much stronger as long as I continue to survive through the bitter season.

I have been searching more earnestly for a new family member, that would be a young cat. The last few weeks I have made trips to the humane society to see who I might rescue. The selection has been surprisingly shallow, it seems this is not the best time to find cats to adopt. However I have noticed the last time I visited there were more cats in need of homes. Part of me is also considering some exotic cat. I have always been very fond of the Bengal variety. I am thinking about going to a rescue center that might have some. The kittens are quite expensive however and with so many needing adoption I have a hard time justifying the indulgence. As soon as I find my new family member I will be sure to post some pictures of her on the blog.

Finally today I wish again to thank everyone who attended the Mass and the open house. Many, many thanks for the donations given towards the memorial. I will be making a donation to the Melanoma Research Foundation and many people made donations to other deserving organizations. Please forgive me if I was unable to thank you all individually, but know I am thinking and thanking you all.

Fitting weekend

2011-02-14T14:39:00.004-06:00

The weekend has passed after many tears, celebration, hugs, warmth, food, family and friends. It was a truly fitting weekend in the spirit of who JB was in the living world. I was fortunate to have my mom, aunt and uncle begin the weekend with me, arriving on Thursday evening. Friday morning we traveled to the northern fringe of the Twin Cities to attend a Mass with family and friends. The Mass was a solemn and moving occasion, with readings, songs and tributes. Two especially powerful messages were delivered. First by JB's boss and friend Dr. MJK. She spoke truth to the person that JB was, a moving eulogy to all in attendance and I am very thankful for her presence, wisdom and support. JB's brother-in-law Brant gave a second eulogy in which he recounted the memories of many of JB's family members, each heart felt and moving.

Saturday I opened the house for anyone that was able to visit and celebrate in the way that JB would have appreciated. I wish I could have taken count, as my estimate of 150 or more people may be far short of how many people walked through the door. They all brought food and memories. The food piled on the table in an avalanche of tasty goodness. From 2PM until later in the evening, the house was shoulder to shoulder with people from family to work mates to friends. So many hugs and an abundance of laughter. There were people representing almost every phase of JB's life. His family of course, friends from high school and college, colleagues from work, friends from MMF, soccer team mates, and current friends were all represented.

The evening wrapped up around 11PM and the house was cleaned up by the last guests and my mom, aunt and uncle. The energy was palpable and I think everyone felt JB's spirit. I have to thank everyone who put forth such amazing efforts to help make the open house so successful. I also thank everyone for the cards of support and there will certainly be a nice donation to the melanoma research foundation as a result of the memorials presented.

It is Monday now and a new week is underway. I am still having a difficult time dealing with the JB's loss. Mornings are especially difficult, perhaps because I am fully aware of the his loss and his absence to haunt me the whole day. I also vividly see his last moments with me, laying in his bed as I watched him take his last breath. I try to remember the last time we had an emotional conversation, since most of his remaining days he was deep in sleep or barely able to communicate effectively. It seems so unfair that he was taken from us, yet we all knew the day would come. Nothing that we experienced together these last few years has been able to prepare me fully for what will come now that he is gone.

My future is certainly not clear, but I believe in the goodness that comes from all of our shared friends and family to help me through...to help each other through. I look forward to maintaining and deepening these relationships as the days and years pass. Again, my heart and mind thanks all of you that have shared our lives together and I hope to continue to share my life with as many of you as possible.

Service details

2011-02-07T16:10:00.002-06:00

We have arranged some times and dates for the Mass and the gathering at the house in memory of John Brian Becker.

A Mass will be held at St. Joseph of the Lakes Catholic Church, 171 Elm Street, Lino Lakes, MN at 10:30 AM Friday February 11, 2011. Visitation will be one hour prior to the Mass at the church and following the Mass there will be a gathering for a light lunch.

On Saturday February 12, 2011 I am opening the house for friends and family to visit and share memories of JB. The open house will run from 2PM until 10PM to try to accommodate as many people as possible. Please feel free to e-mail me at patzlaffj@gmail.com to obtain details of the location of our home in NE Minneapolis.

An obituary will be in both the Minneapolis Star Tribune and the St. Paul Pioneer Press. We are requesting that any donations may be made in lieu of flowers. Donations may be made to the family to distribute to a memorial fund likely to be going to the family charity (Our Lady of Good Counsel Home) or a cancer research charity or of course any the donor requests.

Some tentative dates and times

2011-02-06T07:40:00.003-06:00

I have some rough times and dates for events this upcoming week.

A mass will be performed for JB's passing on Friday February 11. A gathering time in the morning somewhere around 9AM and the mass around 10AM. I apologize for not having the exact times, but some people are requesting more information to make arrangements for travel. The service will be held at JB's parent's church in Lino Lakes, a suburb in the northern part of the cities.

The following day (Saturday February 12) we are planning an open house. This will be held at our home, and I am thinking of a gathering that would perhaps go from 2PM to 10PM. I want there to be enough time for as many people to attend as possible, but it also might be daunting if there is too big of a window. I am working with family and friends to sharpen up the ideas for the gathering. Our home is in NE Mpls.

A few regrets

2011-02-06T07:18:00.004-06:00

The weekend has nearly passed by, somewhat slowly in terms of what I expect. Several visitors have come to the house, some bearing food and cake and others to share hugs. I have spent a lot of time online reading e-mail, tracking facebook and upkeeping the blog. Every time I read these comments I become intensely moved and emotional, I continue to be amazed by the degree JB touched people's lives.
This morning I again woke up early. I keep thinking after a busy day I will sleep well and feel fully refreshed in the morning. So far no luck. On the other hand I am thankful I do not feel crappy either, just somewhere in between. I usually start to stir in the AM and my mind gathers speed. This morning I was thinking of the many things that JB and I had discussed doing together, our plans and wishes.
My goal here is to write down a list of what I would call regrets. Things we wanted to do or places we wanted to go, but never got the chance. Mainly because our time was short, or his health was poor, but also because we simply put it off for another day. I am in a stable emotional place while doing this, not beating myself up or blaming myself because they were not done. I do this to create a memory I can return to year after year, and hopefully help remind myself to make the best efforts to do the things I want to do while I can.

Return to the Netherlands to visit friends and places
Travel to New Jersey, New York and Philadelphia for friends.
Spend time in New Orleans together.
Fly our kites on a nice windy day.
Attend another performance at the Guthrie theater.
Go to South America for our new adventure.
Remodel our upstairs bathroom.
Take a long bath together.
Canoe some lake or river together.

I will probably be adding to this list as more thoughts come to my head about things that JB and I wanted to do but ran out of time.

Epilogue

2011-02-04T07:17:00.006-06:00

This is hard. Sitting here at the computer this morning, reading e-mail letters and facebook threads has kept me in a nearly constant stream of tears. It is amazing how many people JB touched, a whole corner of the world is morning for him it seems.
First of all I want to thank everyone who has been there for us, been in our lives together, worked with us and heard our stories. I want to thank his family for accepting me and allowing me into their hearts. I want to thank his friends for making a spot for me in their circle. We all miss him so much so I hope we can all gather together in thoughts and prayers to keep his memory alive.
I will now try to tell you about what you want to know about, JB's final hours. This story begins Wednesday following that days post. During the day his mom, and sisters Barb and Dianne were keeping JB company. We decided it was time for the hospital bed, as JB was getting further weakened and we felt the bed would offer a more secure location for him to rest. The hospice network was good at one thing, getting us things ASAP. By mid afternoon the bed was installed. I left work several hours early and picked up a mattress pad to improve the quality of the bed. When I arrived home, Barb was here busy preparing the bed with freshly laundered sheets. Also the hospice home aide had arrived to give JB a bath. A very kind man who treated JB to a gentle sponge bath, shaving and lotion. The three of us transferred JB to the hospital bed and it is there he spent the last 18 hours of his life.
Barb made her way home about 5PM and I began my processing and plans for spending the evening caring for my love. Not much time passed, a few hours perhaps and our good friend Emma arrived at the door. Together we spent a quiet evening sharing few stories and some tea as we tended to JB. Emma caressed his forehead.
JB appeared to be somewhat restless much of the time we were sitting in the room with him. Not apparently in pain, but fidgeting a bit. His arm reaching to his brow and back to support his head, his legs swaying side to side occasionally. I postulated it may have been due to the unfamiliarity with the new hospital bed, that it would take a bit of time to get used to the feel.
8PM arrived and his nightly feeding of nutrition and supplement of medications was provided. Emma stayed a few hours or so before venturing out into the bitter night of cold. Back I went to the solitary vigil of my love. I turned off the main lights leaving a few dim ones to take the edge off the blackness. This night began like the many that had proceeded it. Shallow sleep at best to keep track of his status. Around 3AM JB's breathing had progressed to a disturbing condition. His lungs sounded like they were filling with fluid, as if he was gargling for his morning routine. This breathing was frightening to me. I called the hospice hotline and described the situation. The attending nurse asked if we had received a droplet bottle with atropine sulphate. Yes I said, and she told me to give him a few drops in his mouth to help break up the bronchial mucus. In addition I was instructed to administer more pain medication to prevent JB from experiencing discomfort from oxygen deprivation.
Surprisingly to me, this treatment provided JB with much improved breathing. The gasping and gargling had subsided and he appeared much more peacefully and comfortably breathing for the next several hours.
The light of day finally began to break. I stirred from bed at about 6-7AM to shower and gather the morning feeding for JB. I was not expecting anyone until 10AM or so, Brenda was scheduled to sit with JB Thursday. Also nurse Susan had called the night before requesting to visit, she was concerned about JB's condition when she heard we requested a hospital bed. On her voice message she informed me her visit would also be around 10AM.
I got a phone call from JB's sister Patty. She called to tell me she was taking the morning shift since one of Brenda's children was dealing with strept throat and needed to attend them with a doctors visit. She assured me she would make haste to arrive, and I told her I was not in a hurry, I had already called work telling them I would not come in until later since I desired to be there when the nurse arrived.
JB's feeding around 8AM was fairly routine. But shortly after his breathing again turned labored. Not nearly so gargely as a few hours before, but concerning. A few moments passed and he coughed what sounded to be productive but phlemy cough. I gave him a few more drops of the medication. The breathing became harder and harder for my love. I now was counting down the time when Patty and the nurse were to arrive. Part of me was wondering if I should call family to tell them...if you want to be with JB, you might consider coming now as I think the time is short. The other part bayed me patience and optimistically thoughts that it would be okay.
Patty made her way to the room, and I hugged her and told her I was so worried that JB was really fading away. The nurse would be here soon I said and we both sat with worried looks to each other and then loving and sad looks to JB. The breathing now was so shallow, with many pauses before a gasp. We heard the door open downstairs, nurse Susan was here. At the same time we heard JB's last breath. Footsteps sounded on the stairs, yet no sound of air entering or leaving JB's body. Susan stepped through the doorway and we were both touching JB, Patty his forehead and I his legs...trying to prompt him to breath. I said to Susan that he had just stopped breathing, only 30 seconds had passed but he was not attempting to take in more air. She assured me that this was the natural path to the end. We all stood there, waiting for another breath that never came.
That was the last moment I spend with my lover alive together in this world, this reality. This is so hard, that moment was so hard. I am sure it was equally hard for Susan and Patty as well. Death is the ultimate end for all of us, but damn it why so soon for this wonderful 35 year old man.
Painful, sorrow filled moments were shared between Patty and myself. I am happy someone from his family was there to witness his death. I know I am part of the family, but the story of his passing needs to be told from blood perspective as well.
We made the calls to family and some friends, news of death travels quickly. Somehow I made it to the computer to disseminate the news across the world via social media. Our blog got a quick post of his death and I announced it on Facebook. How curious, how rather cold, but how amazingly effective social media can be for spreading such important news.
Family gathered to see their boy, their brother, now drawing cold. How fucking fortunate I have been these last 10 months...to sit and feel the warmth be drained from the body of someone I cherished...first my father last March and now my partner of over 10 years(sorry for the swear word). Anyhow his Mom and Dad arrived quickly. They of course were heartbroken. To see a child die, no words can describe the emotions I witnessed. Sisters and brother whom could make it arrived. Much pain, sorrow and tears where shared. I am thankful for this strong, loving and generous family at a time like this.
Death bureaucracy begins quickly. Calls to the mortuary and coroner were made. Arrangements were made to pick up the body, pick up the items we rented for JB's home hospice care. After all of the family that were able to see JB had made it to the house, we then arranged for JB's body to be removed. By now it was 3PM.
The final visual image of my lover now etched in my memory, two wool coat wearing men walk into the room where he lay dead...in possession of a portable cot and two white cotton linen. They mutter between each other, and ask us how comfortable we are with what they are going to do. Some people stay, others leave sight. The wool coat wearing men unfolded the linens and began a well practiced procedure of wrapping JB's body. First his lower half, I made sure to grab and wiggle his pinky toe for the last time. Then the upper half. They did not cover his face immediately, I paused their task so I could hug and kiss the lifeless body one last time, that was fucking hard too. Eventually JB was wrapped like a mummy in the linen and transferred out of the bedroom, down the stairs, out of the house, into their auto...eventually to be cremated as were his wishes.
Family slowly began to depart, tired from the stress, events and emotions of the day. Lynda, Tom, Jennifer and cousin Jackie remained and we went to eat at a local Thai restaurant, a favorite of JB and mine. Some food with memories. Darkness returned to NE Minneapolis, as did we to the home. Lynda was the last to leave the house. I was alone now for a moment. The moment was not too long, Pat and Morgon Mae made a visit, consoled me and conversed. Then the hospice agency arrived to take away the bed, commode, shower chair, left over nutrition....memories of treating a terminal cancer patient during his last days.
Now I am really alone, the house is so quiet. I thought I might get some deeper sleep last night without the stress and worry about JB. But replacing the stress and worry were my memories of our times together and my sadness with the realization there is no more John Brian Becker here in this world to share my life with.
The title of this post, Epilogue, might imply the end to the blog. It may end at some point or be changed to reflect the new life I now begin. However I do intend to use the blog to send out information about the upcoming events and news regarding a funeral, a memorial and more.
Currently the tentative plan is for a service/mass to be held at the request of JB's family next week Friday morning. More information about the location and time will be provided. JB's desire and request was for a non-traditional funeral gathering. He told me his idea was to have his family and friends come to the house, have an open house once he has been cremated. He wanted people to pass his ashes and be in our home to celebrate together. So that is my goal, the weekend following his funeral mass, open the house to anyone and everyone to celebrate my lover's memory and life. The time and details of this are forthcoming. I hope it is not too murky of an idea, just having people come at random times, but there are so many people and being winter, less space to mill around. But I will make it more precise, say XXPM in the afternoon to XXPM at night we gather. Again more details will come.
Finally with this very long posting I have to express my deep gratitude for all of JB's family for their strength and support throughout the time I have been JB's lover and especially the last three years dealing with stage IV melanoma. I am equally grateful for the support of all of our friends, without you all I would be lost and lonely. I pray we all maintain strong bonds together, as the glue of JB's mind, body and spirit have now been stripped from us. Love and Peace to everyone in this difficult time.

Good bye my love

2011-02-03T10:50:00.001-06:00

John Brian Becker passed away this morning. Thanks to everyone for their comfort and support.

Midweek update

2011-02-02T10:27:00.003-06:00

Wednesday morning in NE Minneapolis is bright but chilly. We did avoid most of the nasty winter weather occurring throughout the midwest, getting through with about 4 inches of snow the day before.
JB had several visitors (friends from work) arrive this morning to give him greetings and their warm wishes. Unfortunately JB was unresponsive, sleeping and fading away in our bedroom. The sun was shining in as his co-workers joined in the room to tell him how much they miss him and wish he could return to work. It is clear that JB has been a positive influence among his co-workers over the many years at the U of MN. It was difficult to stay composed while they were present, because it was clear we all wanted JB to pop up and acknowledge their visit with a smile at least.
The overnight was a bit tricky for Susan and I. JB was dealing with more systematic mental issues and when he would arise he was confused and very groggy. A few times he attempted to get out of bed, but was unable to navigate the room to get to his destination. One time his goal was the bathroom, but got disoriented and bumped into our closet. We managed to weave our way to the bathroom so he could relieve himself, but that in itself was a struggle. It was difficult for him to maintain his balance and he practically was falling asleep while standing at the toilet. Immediately after, we staggered back to the bedroom where he collapsed back into bed to return to sleep.
It is not clear if he is managing his pain since he has such trouble communicating clearly. We remain fixed to the regiment of medications he has been given the last week, and I changed his pain patches this morning as the two days had already past since the last ones were applied. He continues to take all his nutrition through his gastric feeding tube, and has not taken any food since a portion of yogurt a few days ago.
Each day brings new challenges as JB's body continues to fade. The decline is noticed by many family who have been present much of the last few days. I am starting to loose track of the last coherent communication we have gotten out of JB and each new day he drifts further from us mentally. It still seems his body is putting up a fight as the nurse noted during her visit yesterday that JB's pulse, blood pressure and vitals appeared stable. The nurse did not have too much information, positive or negative for us. The next visit by a hospice nurse is this Friday.
Most of us are hopeful that we have not seen the last lucid moments from JB. While at work during the day I imagine that I might return home and he is sitting in the living room watching a movie, interacting with visitors or navigating on the computer. Each day there are less examples of such recovery behavior. And our desire of course is comfort and company to pass the time he remains with us.

Warm comfort of visitors

2011-01-31T10:30:00.002-06:00

The time passes slowly while waiting for death. It becomes more clear as each day passes that the remaining days are likely few. The presence of friends and family has been comforting to both of us. I am certain that JB appreciates everyone that has come to visit and keep him company.
This past weekend we enjoyed visits from several friends, some of whom have not been present physically for years, but have always been in our hearts across the miles that separate us. Family continues to play an important role in the care taking process. JB's sister Susan made the journey from Iowa to spend yesterday afternoon and overnight. Her desire was to spend time with JB as well as offer me a break from the overnight duty of keeping JB safe and as peaceful as possible.
A long time friend made the visit from Fergus Falls to see JB yesterday evening. Jesse has known JB for years, and 11 years ago JB participated with the birth of her first child as her birth coach. I have heard stories many times of how meaningful this was to both of them. Years have passed since they spent time with each other, but they have always remained in each others hearts. The energy level in the house and in JB's body spiked upon her arrival. He managed enough energy to come down stairs and 'entertain' our guests. He even gave Jesse a brief tour of our home and then looked at a few pictures of the young woman whom he helped give birth to. If only for a few moments yesterday, it was pleasant to see JB regain a semblance of his former mind and spirit. Of course the visit was taxing on his system and less than an hour passed before he returned to his cancer induced exhaustion.
Another close friend Emma visited as well. Emma, JB and Jesse all became close friends back when they were all attending college in Morris Minnesota. These were days before I knew JB but since then I have been fortunate that these special people have made a place in their thoughts and hearts for me as well. After JB returned to sleep we all chatted for a few hours and shared stories together.
A new week begins and a routine is becoming established for the day to day care of JB. Feeding in the morning before I head to work, supplemented with medications to reduce the pain. Family and friends arrive for the bulk of the working hours to keep him company. I return home later in the afternoon to continue watch over him. The hospice nurse returns tomorrow and likely an aide will visit a few times this week to provide a sponge bath. There have been no alarming details to describe from the last few days regarding JB's status, which hopefully means his pain is managed and he is passing the time as peacefully as possible.

Not too much news

2011-01-28T07:47:00.001-06:00

Friday morning and the hospice nurse made a visit to our home. There have been no significant changes in JB's status over the week. Most of the week we have had coverage of spending time at home with JB as he is dealing with his late stage cancer. He is sleeping most of the time and remains mainly in a semi-conscience state when he does stir. Most of his communication revolves around dreams that are spinning in his head at the time. That makes it difficult to assess how he is feeling in regards to pain and comfort. We are doing our best to get the information from him to keep him supplied with the medications which are helping the pain.
Many friends and family have contacted us to inquire about his status in efforts to arrange time to visit. Our basic policy is going to be that anyone is welcome to visit knowing that JB is not usually interactive in a way we are all used to. As I mentioned, most of the time he is sleeping and when he wakes he might be aware of who is present but might communicate in non-sense language. We were told not to be contrary to his communication, rather to try to understand where he is at and comfort him if he is dealing with any strange or disturbing dreams.
JB's general vital statistics are fairly strong, a regular heart rate and blood pressure as well as no secondary sickness setting in. JB has always been vital and fit, and we expect athletic history will provide him with strength as other parts of his body become overwhelmed with the growing cancer. There is no way to determine exactly how much time his body will fight to stay alive. As I have mention, my main desire these last few weeks has been to hope that his mind could rise from the stupor such that we could be present with him. It is possible that the melanoma is reoccurring in his brain and other tumors might be affecting his thoughts, and it is possible the drugs affect his mind too. In all likelihood it is a combination of all of the above which presents us with the problems he deals with now.
I wish to express my gratitude to all the family and friends that are showing up and helping, along with those who desire to offer help in the upcoming days. I see the experience as traumatic for JB and all of us trying our best to help him, and thus our combined spirits and energies will be best utilized combined to keep everyone going strong through these difficult times.

Hospice care arranged

2011-01-26T15:41:00.002-06:00

This morning several people from hospice care arrived to describe the services they offer. We begin by keeping JB at home as long as possible which means that staff and nurses will make regular visits during the week to assess JB's status, administer drugs and pain meds and try to make him as comfortable as possible. Right now I am struggling with the idea of keeping him at home versus a hospice location where there would be more round the clock service. JB's strong desire is to remain at home of course, but the strain of making sure there is someone there around the clock is going to be difficult to manage. JB's family and friends are making a valiant effort to provide that company, but of course there are constraints on everyone schedule to be able to break away to fill the voids when I cannot be home. My work has been flexible and I do have some time saved up to try to be around.
Some of the fears we have are how well JB can manage some of the routine activities we all take for granted. His fatigue induced by the cancer and drugs makes him very unsteady. Getting up and down stairs is nearly impossible on his own. He has been making it to the bathroom, but even that process scares us as he could easily loose his balance along the way and fall. We think about putting a bed down stairs, but JB's strong will probably will induce him to try to continue to go off on his own and the down stairs is just as unsafe for him alone as the upstairs.
For now we will access how well the home hospice situation works along with the scheduling of family and friends to spend time at the house and keep him company. We are teaching them the drugs he might need and how to administer the nutrition through his feeding tube.
The process of taking care of a dying person is much more difficult than I could have ever imagined. Just having the hospice people over describing what they could do took over 3 hours and I ended up with a headache from all of the issues that we need to take care of. I believe I have had an optimistic view of what home hospice could provide us, but they are limited with time and resources. They talked about their services such as music therapy, massage and bathing along with the nurses visits. The nurse can visit several times a week and will only stay an hour to check on him. The massage can be done once or twice a month, same story with the music therapy. I was thinking a few times a week would be better, as it is possible JB is not around more than a month and thus would barely get to sample some of the hospice services. Everything is discussed in terms of a few times a month and that seems minimal to me looking at the time that JB has left.
The nurse called later today to tell me about some prescriptions that will arrive and I asked her in her opinion dealing with terminal patients what she thought about JB's outlook. Of course she mentioned there is no way to tell, but a few weeks perhaps. JB's fortitude is amazing and we cannot discount him being strong and being with us much longer. My sadness wells with the thoughts of his days being spent as they currently are, in pain and sleeping most of the day...barely lucid. The nurse said often times her patients do sleep much of the time, that appears to be par for the course with dying people. I simply wish I could spend the waning days of JB's life with the man I have spent the last 10 years with, not the shell that has appeared these last few weeks. Does he realize I am still with him through his dreamy haze? I know he does not want to be alone, but the moments he does come into awareness will anyone be there for him to be comforted by, before he goes back to sleep? I believe these thoughts torment all of us who love him so much, knowing we cannot be there 24/7 to fill the few moments he is aware when he could use us the most.

Difficult choices

2011-01-25T18:37:00.002-06:00

We attended another doctors appointment this afternoon with JB, myself his mom and sister Barb at his side. Again it was a struggle to make the transition from sleeping in bed to the doctors office on the other side of the river. The initial goal of the meeting was to have discussed the option of amputation of his tumor swollen arm. In light of JB's rapidly failing health, this is no longer an option, simply put the procedure would kill him. Instead we talked more about hospice care options. The doctor was attentive and went to work to arrange a hospice representative to make a house call tomorrow morning to assess the living arrangements. We might then have a better idea what can be done for JB to maximize comfort and still stay at home.
Together myself and the family realize that we are reaching the limits of what we can do to keep JB safe, comfortable and out of pain. Our daily duties are unrelenting whereas the cancer is not. I want to hold him and keep him in my care, it is difficult to let down my protective barriers and open the door to outsiders who might be better equipt to ensure a peaceful and loving transition from this world to the next. I am sensitive to JB's wishes to stay in our home together for as long as possible. It breaks my heart guessing and second guessing decisions made and to be made, wondering if they are what JB truly wants...as he grows unable to make them or communicate them to me.
So moving forward to hospice care is now eminent. The goal is to keep him home as long as possible. Z

Returned home with a nice night cap

2011-01-24T07:25:00.003-06:00

Yesterday Julie and I brought home JB from the hospital. He could have returned early in the day, but of course the paper work and discharge takes longer than optimal. On top of that there seem to usually be issues with the pharmacy and prescriptions that needed to be filled.
We all rested a bit during the late afternoon and it felt good to be home again. The pain is still present for JB, but the medications do dial it down a notch. This week will bring a variety of appointments, included hopefully is a visit with the pain consultation team.
I am hopeful we can arrange a schedule for taking care of JB's needs now that it appears we are moving towards home care. The mornings and evenings are manageable for me. I just got him set up with his morning feeding while he still rests in bed, and while starting that I am able to crush up the pills he needs and wants (the B-raf trial continues) to take. It takes about 30-45 minutes for the morning 1 can feeding, so here I am blogging a bit while he is 'eating'.
Julie will be here most of the day to work on scheduling appointments and taking some of the details down for this week. I believe other family members might pop over for a visit as well.
As a nice night cap to the weekend and perhaps a reward for JB's discharge from the hospital, we had many family and friends visit last evening. It was a warm and loving crowd of people. JB managed quiet well with all the energy and demand for attention. And many of our friends and family got to see him in person and see his feeding in action. Sometimes it helps to see the situation first hand to fully understand what JB has to deal with. Certainly most of us by now know, but if anyone has not seen JB for over 6 months I am sure the change in his body as a result of the growing tumors and his underfed body would be shocking.
Thus we continue, with perhaps a clearer focus on what is important. Our main goal is pain management and optimal comfort while we worry less about him getting his work done or dealing with stressful routine issues. We also have a goal of increasing the support of home nursing care as well as family and friends to maintain some acceptable level of supervision and company for JB. Perhaps a few weeks and months ago it was okay for him to be home during the day and take care of his own needs, but it is too risky to allow that now. The combination and dosage of drugs has gotten much more complicated and of course they all alter his clarity to some degree. Additionally we need to make sure he is getting nutrition throughout the day.
As always I am thankful for everyone who shares kind thoughts of support and those who offer assistance of any kind. It proves how cherished JB is in your hearts and minds.

Better pain management

2011-01-22T16:15:00.003-06:00

This afternoon has been better for JB. The pain management has improved, lowering from a constant 7-9 pain level yesterday to lower than 2-3 now. JB has been sleeping more today, maybe a result of the meds or perhaps because the lower pain is allowing sleep.
JB's sister Julie arrived from Denver this morning to spend a few days with her brother and help be present. It is looking likely the hospital will release JB tomorrow, then we start managing his care from home. Hopefully the pain will continue to be controlled with the drug combo and allow him a more improved quality of life.

Some tumors removed

2011-01-21T10:17:00.002-06:00

Friday morning and JB is recovering from surgery to remove tumors from his neck, for a second time. He made it through the procedure but has not felt a great improvement from the situation before the surgery. Perhaps some pressure removed by debulking one of the major growths on his neck. Dr. Y did a meticulous job on what he attempted to remove. He noted that the tumors were heavily intwined with muscle, blood vessles and nerves. One of the major issues with all of the tumors is how invasive they are with many vital areas. Specifically he had to avoid damaging nerves that control heart beat, motor motion, breathing etc. He was successful freeing some of these improtant nerves from the cancer, but mentioned he had some trouble with a nerve which may result in loss of sensation from the left ear and left side of his head. He hoped that the right side sensation would compensate for this loss.
Today several visits are scheduled from different groups, including physical therapy, pain management, pallitive/hospice care and Dr. Y. It appears that the drainage from the neck wound is still significant enough that they will keep him in the hospital for one more night. Hopefully he comes home tomorrow to recover in the comforts of home.
Pain management is a high priority at the moment. It seems that the previous regiment for tackling the pain has been less than sufficient. Of course the last few weeks JB has been in acute pain as a result of the massive growths on his left bicep, forearm and armpit area. To try to deal with this Dr. A requested an increase in the pain patch dosage and allowed JB to take more oxycodone. But on further review from Dr. Y, he was under the impression that we should have been more proactive in communication with pain management specialists as there are likely better meds to work with for this type of pain. He was administered a new pain medicine which is a nerve blocking agent and JB mention that the level of pain went from a 8-9 (scale of 10) to 3-5. That is not optimal, but perhaps with further consultation he can get this down to 1-2 with better dosage or a combination of additional drugs. On top of that we hope that the pain meds can be adjusted so he is more lucid and not sleeping so much.
Further updates as we get them. Call or e-mail if you are interested in making a visit sometime today at the hospital.

Through dreams drugs and dilusion

2011-01-19T07:26:00.004-06:00

It is Wednesday morning, just returned from my morning fitness routine. I got home and started to give JB a feeding and his medications and am generally starting my day. This week is going slowly, JB is floating in a semi-conscience state these last few days. The pain in his arm and neck from the rapidly growing tumors is forcing him to take more pain medications and the general side effect of all of them is to put him in a very sleepy low energy state. Much of the time when he is awake it seems he is finishing up some dream or he is talking about random people and places. I can only hope his dreams are peaceful.

Later today I will take JB to the doctor for a pre-operative physical. One more hurdle before the rather extensive surgery planned for tomorrow. We are due early in the morning and the surgery may take upwards of 4 hours. It is JB's wish to have Dr. Y take out as much of the tumor growing in his neck as possible, and it is his worry that he will decide on playing it safe and only take bits and pieces. Additionally I hope that JB will be more responsive today and tomorrow for his physical and surgery. Maybe the burst of cold from going outside will snap him out to keep him lucid for a few hours.

The feeding is another issue that causes some consternation. There is a schedule to ramp up the calories and amount over a period of a week. We are trying to do that, but JB has noticed a defined correlation between his feedings and a sharp increase in the pain in his tumors. He feels that the feeding is directly causing this. It is possible, the second ingredient on the can is corn syrup. A simple sugar that is likely going straight to feed the cancer. I have looked into several of the commercially available nutrition feeds, and they all have corn syrup along with soy based products. There is nothing in the way of a more natural feed. I understand that the purpose of the feeding tube is to get nutrition to his body and these commercial brands goal is to pack as much calories, vitamins and nutrients into a small volume. Thus they use highly processed materials and recombine them to make something that appears nutritionally complete. JB's sister from Denver passed along a possible substitute home mixture and she plans on visiting this weekend, so perhaps we can brew up a batch together.

One benefit to the feeding is we are able to keep up with the B-raf drug trial. I bought a pill crusher from the drug store and crush up the four 'horse pill' sized tablets. I then mix the powder into a protein drink to keep it in suspension. So instead of nearly choking on these large pills, we are putting them directly into his stomach through the feeding tube. The same benefit applies to the pain drugs he has been taking.

Through all of this I still wonder the direction of the path we are on. Especially this week with JB so altered in mind and spirit. I believe the goal of fighting the cancer remains, thus we work hard to keep up with the B-raf drug. But we fall behind with the goals of the Gerson diet with his problems keeping on weight. The surgery to remove the neck tumors seems like a method of improving his quality of life. The possible amputation of his arm looks more likely as this is much of the source of his pain. It is truly amazing how the tumor in his left arm has grown, the shoulder to elbow area has ballooned to nearly three times the size of his right arm. It is all terribly frightening to vision him going through such a traumatic procedure to cut away all that cancer.

On Sunday we were surprised by a nearly full house of visitors. JB's sisters Dianne, Lynda and Brenda along with Brother Tom visited. Dianne also had joining her two very special ladies she is friends with. The visit was appreciated, and the love shared empowering. Of course it all wore JB out greatly and probably is one of the reasons he has struggled early this week to not sleep all day. But he needs that comfort and presence now more than ever I believe. I try my best to be with him, but sadly my work demands some time. Anyhow, with JB returning to the hospital on Thursday with a likely stay at least one day...perhaps some quick visits would be possible. I will be working on updating throughout the procedure.

Okay, off to start my day...and get through the Wednesday hump.

One week down into Twenty-Eleven

2011-01-08T09:27:00.002-06:00

We made it through the holidays and the first week of January is already history. It does not seem like much has changed of course, Winter still firmly grips the landscape and rumors are that a boost of extra cold from the Arctic are pushing our way.

Much like last January (when JB had half of his right lung and a tumor from his heart removed), it appears that this January is going to be difficult. The tumors continue to cause troubles for our gardener. It is true that the surgery of December 17 that removed a huge chunk of tumor from JB's tonsil greatly relieved troubles in breathing and eating. Unfortunately the tumors remaining there have continued to grow, at what seems to be an unbelievable pace.

JB went in to see Dr. Y who performed the Dec.17 procedure and the Dr. confirmed that there was significant tumor growth from the same location he operated. Also tumors farther down his throat were growing such that they are now clearly visible. I would estimate that the most prominent one on the right side of this neck is now the size of a tennis ball.

The problems with eating and breathing are increasing again and the path of action is now two fold. First will be a procedure performed next week, the insertion of a gastric feeding tube. The thought is that nutrition is of high importance now and the worry of further tumor growth making conventional eating impossible prompts this move.

The second procedure is scheduled for the following week, and this will involved a much more radical attempt to removed more of the tumors from JB's neck. Originally this idea was rejected due to a number of possible complications and the belief that the B-raf drug trial might be able to shrink some of these tumors. The B-raf drug may be working on some of JB's tumors, however they are having no effect on those in his neck (and tricep...see below for this story). JB strongly requested that attempts be made to remove them and now the doctors appear to be willing to comply.

An additional area of concern is a massive tumor growing at the tricep of JB's left arm. It is another one of those tumors that is bucking the trend of the B-raf drug effects. It has grown rather fast, and maybe as large as a softball. This tumor is not easy to notice, from an outsiders perspective is looks as if JB has a rather well developed arm muscle. This tumor is causing more pain and there are thoughts of another radical procedure, perhaps amputation of his arm. Amputation was one suggestion about a year ago when the tumor on JB's forearm was growing uncontrolled. What was once thought of an absurd course of action is now perhaps likely.

I see JB dealing with all these issues day to day and together we try our best to enjoy the life we have together. I shutter to think of him slowly being chopped apart. If these options allow for an improved or stable quality of life I am on board. I cannot deny that it appears that our time together truly grows short. Months but not likely years anymore. I fear more often these days that I will come home to a lifeless partner. I feel relief the moment I seem him up watching TV, or restfully sleeping in bed, but my previous thoughts continue to wander to imagine what the final moments might be like. I quickly try to avert my thoughts to something more peaceful and in the moment...usually something we both can enjoy.

Anyhow, it is currently 10AM on a chilly but very sunny Saturday morning. We are both awake and together in our cozy and warm home. There are no immediate plans for the day but we will try our best to enjoy it and spend the moments together.

Happy New Year! Welcome to 2011

2011-01-01T23:17:00.000-06:00

Ultimately, I'm not sure why I stopped writing here in early August. Perhaps it was the valuable summer summer hours, perhaps I was feeling more pressure to write than I cared to have on me, or perhaps I grew lazy and uninterested in broadcasting the minutiae of my ongoing treatments to friends and unknown persons alike.

I don't know, and I suppose it doesn't matter. I'm here, writing today.

Today, the first day of 2011, a year I would not have guessed I would see when I had my original diagnosis of Stage 1 Melanoma back in 1997, nor in 2006 when I received my diagnosis of Stage 4 Melanoma. Here I am, worse for the wear, but still alive, still breathing and witnessing the strange events transpiring in the world around me. Here I am still in love with my partner JSP, and here I am, trying not to feel sorry for myself as my disease slowly claims my body, one region at a time.

Shortly after I stopped writing, I stopped with the chemotherapy. I felt that it was too drastically lowering my standard of living and not doing any noticeable good.

In September I was feeling exceptionally poor. I was starting to see my death as immanent as tumor growth was accelerating and my general state of being was very poor. I had lost weight, and was down to 117 lbs. I was on a pretty direct trajectory toward the end of my life.

My primary oncologist Dr. A. put me in touch with some doctors operating a clinic in suburban Chicago. The idea was to explore any clinical trials that they may have access to.

My mother and eldest sister drove me to Chicago-land in late September to consult with a doctor there. To my surprise, they this suburban Chicago clinic, Oncology Specialists, had access to the B-raf clinical trial. This is an extension of the B-raf clinical trial that was profiled very positively in the New York Times and other news outlet several months ago. It had been hailed as a game changer and the biggest breakthrough in Melanoma research in 50 years.

I started this experimental drug, PLX4032, at the beginning of October, and by the end of the month felt that this experimental treatment was having a dramatic effect on my body in terms of tumor reduction. In October I was required to spend a lot of time in Chicago, having lots of blood drawn and various tests done. Since November, I have only had to go to Chicago once every 21 days for testing and to pick up a new supply of the B-raf inhibitor drug. I felt better in November than I had in several months. Car trips to with family and flights to Chicago by myself went alright. I went in to work several days at the University during November and December, which illustrates how much better I felt during this time. My body felt better and I began to eat more and put some weight back on.

However, during this time, especially December, a signifigant tumor grew larger and larger in my throat. I made an appointment with Dr. Y., my Ear, Nose, Throat doctor to discuss my options. As this tumor grew, it made swallowing and breathing very difficult, and talking eventually became impossible. On December 17, 2010, after communicating with Dr. A., Dr. Y. and the clinical trial doctors in Chicago, I had a surgery at the University of Minnesota to remove some of the tumor from my mouth. The surgery was all done through my mouth, and when it was done I felt much better. Still, Dr. Y. told me massive amounts of tumor remains in my throat. I could speak again though, and breathe and swallow easier, so the surgery was deemed a success.

I go to see Dr. Y. again on Wednesday. Swallowing my B-raf inhibitor pills, 8 huge "horse size" pills each day, is becoming increasingly challenging again. The tumors in my throat continue to grow, seemingly unencumbered by the B-raff inhibitor pills.

The story with B-raf inhibitors seem to be that they work really well... for a while. Then, without any notice, usually three to six months later, your cancer seems to mutate again, no longer susceptible to the drug's action. The cancer finds another biochemical pathway and grows again unfettered.

I'm guessing that my cancer is getting to this stage, or soon will if it hasn't already. PLX4032 did wonders for me in October and November, but now I am entering my forth month on the clinical trial.

I wonder about the tumors growing in my throat and if I will need further surgery to be able to remain able to swallow and breathe. Before my December surgery, Dr. Y. spoke about putting in a permanent feeding tube to feed me and a tracheotomy (a hole in my throat) so that I can breathe. This is the solution if the tumors in my throat cannot be controlled. I can't even begin to tell you how much I would dread that extreme solution. My quality of life would be incomparably lower and I may have to enter a hospice for palliative care. I should know more after meeting with Dr. Y. on Wednesday, January 3.

So, there is the update, the bringing up to speed. It is not all sunshine and roses, and it is not all doom and gloom.

I would be leaving something out if I didn't mention that the coming of winter, all the snow, ice, darkness, and isolation have not taken their toll on me.

Since before the Christmas holiday, I have found myself sleeping unimaginable amounts. At first I blamed it on recovery from surgery. Then just general tiredness, but I have been sleeping... sometimes up to 18, 19, or 20 hours per day. I enjoy the rest, but I also know that all this bed-rest is making me weaker in the long run. With that I will sign off and go to bed.

Happy New Year, and goodnight.

Has it really been since August since our last post?

2010-12-12T07:35:00.004-06:00

Hello Readers,

I have known for some time that I have been neglecting the blog. I imagine that has caused many people to give up on coming to this website to read about what is going on in our lives.

It is just after 7 am on Sunday morning, a massive snow storm dumped over 16 inches of snow yesterday. I drink a cup of coffee and read the internet as sleeping was difficult for me this morning. Snow shoveling has left me sore and I needed to get up and stretch it out. Soon I have to head out to clean up the left over mess.

We are drawing near to the end of another year. I have been getting some comments from friends and family that it is amazing that nearly four years has gone by since the official diagnosis of JB's stage IV cancer. It is amazing indeed. I still remember the heart crushing news of the return of his cancer, thinking that our time was projected to be so short. Now as I look back, it certainly has been a difficult road, certainly more so for JB, but a rewarding time together.

Going back almost three to four months ago, JB was feeling like his days were drawing to an end. He commented to me that he felt that he had weeks or months left at best. Some recent test results opened a new door for JB back in September and he entered a new clinical drug trial. JB has the genetic mutation and is now taking the B-raf inhibitor drug. The results so far are very remarkable. JB travels to Chicago every 21 days to get tests and more drugs, during his visit last week, scans and tests showed that nearly all of the tumors that could be imaged on scans had decreased in size, and some had gone away entirely.

Of course not everything is rosy for JB, and although the tumors are being reduced or eliminated by the clinical trial drug. JB is experiencing one growing location of several tumors is in his throat area. There are at least two if not more rather prominent tumors located on one side of his neck and one large one near his tonsils. These tumors have presented JB with a challenge, making breathing, eating and drinking difficult. The tumor at the back of his throat is particularly troublesome now. JB has described it as like having a large wad of chewing gum stuck back there. This often causes a gagging relax to occur and again causes him difficulty keeping food down at times.

Schedules have been made for surgical removal of this tumors later this week, and we both try to deal with the waiting in hopes that time passes fast and these rather obstructive tumors are removed. The hope is they can be removed without too much stress and JB can return to more normal breathing/eating/drinking.

It has been hard for me to write down my thoughts for everyone, because of the uncertainty of our lives. JB continues to deal with the trials of living with cancer. The last year has been traumatic in many ways for me too.

My father passed away unexpectedly in the spring,
my cat of 16 years died in the summer,
my grandmother and an aunt passed away (both on Halloween weekend)
I have been in nearly constant apprehension of the health and outlook of my partner's life.

I will be happy when 2010 is over, hopeful that trauma will be replaced with a bit more optimism but it is difficult not to let pessimism creep in.

My partnership with JB has endured, but certainly changed much in the last six months. Right now we are litterally counting the hours until his throat cancer removal surgery. It is immediate and has a direct impact on our lives. JB limits his communication because it is uncomfortable to talk. We have not been sleeping with each other much the last few weeks again because the tumors in his neck restrict his air passages and cause extremely loud snoring. I tried earplugs without success. Obviously we both desire to be close to each other and share a bed together, but I selfishly need my sleep to function properly. JB still deals with low energy and stamina, perhaps now as a result of the sleep apnea prohibiting him a full nights sleep.

The combination of the events of the last 2-3 months give us hope and optimism, however the reality of how JB's body is performing also is significantly limiting us from a 'normal' existence. It is much like walking in place at times, we see the regression of his tumors on one hand, but deal with the debilitating effects of the tumors on the other.

JB has forged ahead and challenged himself by returning to work at the University, at times going in multiple days per the week. Other mornings he can hardly muster the energy to stir from bed to take his regiment of drugs.

What will 2011 bring for us? It approaches quickly, and that is good because neither of us enjoy the winter season. Winter hit hard recently and with nearly two feet of snow on the ground already. We wonder if we will make it through this season together. I am optimistic thinking about the Winter Solstice nearly upon us prompting the slow return of longer days and eventual warmer days to come.

Much more has transpired in our lives since August, but hopefully this is enough news to catch everyone up. Hopefully, I will find willpower to write more frequently.

Happy Holidays everyone, best wishes to you all for the New Year as well.

Second round of chemotherapy done

2010-08-05T06:23:00.000-05:00

Yesterday I went into my cancer treatment clinic and after waiting a while and speaking with my doctor, I was hooked up to an IV. The nurse drew my blood and injected some preventive drugs. Then the main event began and I was pumped full of the three ~~poisins~~ drugs that make up my current treatment. Everything went smoothly. After 15 hours I have so far felt no ill effects.

My sister Julie was here visiting last week. She mentioned that she grows increasingly nervious when she sees no new posts in this space. She had figured that if JSP and I were not writing, that signified that things were going poorly. After staying with us for the week and seeing up not write anything on the blog, but still being in good spirits, she came to another conclusion, one that I want to share with you dear readers.

Time passes peacefully from one day to another when there really is nothing to tell. Seeing that in effect, Julie came to the conclusion that when there is nothing new posted here on the Both Of Us blog, that things are actually going pretty well for us. I wanted to pass that on to you, just in case you experience similar feelings of dread when there are no updates here for one or more weeks.

Full moon tonight, and life goes on without our cat Tegan

2010-07-24T14:11:00.000-05:00

The moon will be full tonight, which in many circles is call for celebration. We are a bit in mourning today however, as our feline companion Tegan died today. She was sixteen years old, and has been JSP's constant companion for all that time. I have only known her for ten years. She moved with us across the sea to the Netherlands, then to Philadelphia, before making her final home with us in Northeast Minneapolis.

Tegan had been fighting with something that had stripped her ability to eat and drink. She was slowly starving to death, so, to save her the pain of that sort of death, we choose to have her put down at about noon today.

JSP and I will miss her and the place that she held in our home as our princess is now vacant.

JSP wrote about her in August, 2005's Friday Cat Blogging and June, 2007's Wild Cat in Tame Surroundings .

Under the unforgiving light of the enema nosil cleaning lamp

2010-07-23T19:40:00.001-05:00

Catching a glimpse of myself under the bright bathroom mirror lamp, as referenced in the title above as it's other use, I cannot help but see my body reduced to what it is now: 133 pounds (60 kilo) of bones, tissues, organs and tumors all stretched out under layers of scarred and sagging skin. The skin that used to shelter thick strong muscles and an occasional bulging belly, is now slack with extra, wondering perhaps where the thick bounty of heath at 170 pounds (77 kilo) has gone.

I go outside in my pajama bottoms at 7:00 PM, nonchalantly walking past JSP to the front yard, and I feel the even brighter more honest light and warmth of the sun on my skin, wondering what the neighbor boy thinks of this scary sight as he plays with his trucks in the adjacent front yard. I pick up the useless Verizon mini-yellowpages that was thrown on our front stoop and go inside again. I am conscious of living in the scared skinny body of a cancer survivor. Soon my hair will fall out again because I have finally started chemo-therapy. That will complete the picture of a post-apocalyptic me.

My first session of chemo seems to have gone well. I have not suffered many of the slings and arrows that you hear associated with this invasive treatment. A bit of nausea perhaps, being extra tired too, but none of the earth shattering sickness that one often reads about from people actively poisoning themselves and their tumors with theses chemicals.

My chemical mixture seems pretty simple and infrequent at this point. Every three weeks I will be getting a dose of Carboplatin (Paraplatin ® ) and Paclitaxel (Taxol ® ). This protocol may change to a weekly regiment if my insurance approves adding Bevoacizumab (Avastin ® ) to the mix.

So, to those curious about my experience with chemo so far, it has been pretty mild when compared to everything else so far. The doctors do say that the effect is cumulative, so this easy road may take a turn toward the more difficult as the weeks and hopefully months roll on.

My family have been great about paying me visits this past week and I was able to make it out of the house to visit my sister's farm and to accompany my parents to the MIA for a few hours yesterday. I could not believe that having spent most of their adult lives in the Twin Cities area, and having nine children, that my parents had never been there before. I felt like an ambassador of culture. Then we had some food at Jerusalem's which was not surprisingly too "spicy" for my father's palate.

I worked from home for a couple of hours today, so that was a minor victory for me. Also I have not felt nausea in days. One must revel in the minor victories.

Starting chemotherapy

2010-07-14T20:54:00.004-05:00

JB had an appointment with an oncologist today to discuss his situation. The doctor was concerned that his cancer was growing at a very fast pace. At this point treatment options are few. Interleukin-2 will not likely offer much help and the clinical trial he has been in has shown no positive results. With this in mind, the doctor highly suggested beginning chemotherapy.

Until now, JB has avoided chemotherapy. We know this is basically adding poison to his system in hopes it will target the cancer, but in reality it targets the whole body. The doctor even noted this, saying he has done remarkable without chemotherapy for so long. However now there is very little else that will offer any extension of life.

So, this afternoon they admitted JB into the hospital to begin a chemotherapy treatment. Two drugs will be administered this evening and they will schedule him to receive another dose in three weeks. Normally these chemo treatments are done on an outpatient basis. The urgency of the situation and the late decision to begin today prompted the doctor to admit JB to the hospital to get started right away.

In addition to the chemotherapy, they are also working on finding a combination of drugs that will help reduce the pain JB has been suffering with (as a result of the large tumor masses on his arm, in his neck and his back). The two-fold strategy will hopefully take down the pain and reduce the rapid pace of his tumor growth.
Unfortunately, the chemotherapy is not a cure. Instead it is one of the last options to help extend JB's life a bit longer. Hope is a word that gets tossed around a lot by friends and family and certainly we can be optimistic that these chemotherapy drugs will indeed slow down the cancer progression.

According to the plan, the drugs will be given IV this evening, and tomorrow JB's regular oncologist will visit. Then it is likely JB will be released home and the chemo will begin to work. Lots of possible side effects of course, including joint pain, nausea, hair loss etc. etc.

One bit of positive diagnostic news was that JB's hemoglobin results were very normal, indicating that his internal bleeding has indeed stopped and hopefully healed.

Certainty with a dollop of high faultin' language

2010-06-25T17:46:00.000-05:00

My friend Laura was in town for business and she managed to squeeze an extra night in her trip to spend with JSP and me. I picked her up at her hotel yesterday night and drove her to our home. Our conversation in the car turned, as it usually does with friends that I am not able to see frequently, to the subject of my ongoing disease.

She hadn't been aware of my recent hospitalization, I told her about it.

She asked me about the clinical trial I am participating in in California, I told her about how it was going.

She asked if it is having any effect on my cancer, I said "I don't know."

She asked if there is a test that they will be giving me at some point that will be able to tell me if the vaccine is working. I stopped at a red light and said, "No, there is really nothing that can definitively tell me that. This is research, basically if I am still alive it might (or might not) be working."

I could tell that my response was troubling and unsatisfactory to her. She wanted an answer, something in black or white: yes it is working, or no it is not working. Melanoma doesn't really give you that. There are no tests to mark virual load like there are in HIV, no PSA test like in Prostate Cancer.

Laura, JSP, and I shared a nice summer night visiting, despite my being so very tired earlier in the day. Maintaining friendships is a nourishing affair.

Thinking about her questions today, one thing that is certain; I am going to die from Cancer unless something else kills me first.

Most western people love certainty. We love waking up knowing exactly where our tooth brush is. We love knowing roughly how much money to expect on payday. Even primal seasonal weather cycles provide a sort of certainty to people who live in areas that have four seasons during the year.

Some certainty and unknowns regarding my melanoma: I probably will not be alive in 2 years. I may not be alive in two months.

My tumors have been kicking it into high gear lately: there is the giant potato sized one on my left forearm, the new pear sized one in my left armpit, the rapidly growing ones along the right side of my spine, maybe now the sizes of various bird eggs, then there is what ever may or may not be growing in my neck, on my voice-box, and possibly in my chest-cavity, not to mention the relatively new tumor on my lower left lung, turning handkerchiefs crimson behind closed doors.

A routine and ordinary tumble in a friendly soccer game lead to hospitalization with a torso full of blood and liquid. Nausea creeps in around juices at home and fine cuisine served at served on linen covered tables. I'm rapidly coming to rely on narcotics to dull the increasing pain load. Lady pain is a jealous matron.

Lady Pain has become my recent constant companion in the past several months. She was barely noticeable for a while, only occasionally smiling out from behind my flesh and suggesting, "I remind you that you are alive." More frequent now, piercing spikes emanate from deep inside a tumor or my abdomen. She is increasingly jealous of my man Sleep, whom she struggles to keep from embracing me at night. When she becomes too much for me these days, I regularly dig into the narco-candy dish to keep her at arm's length.

Then Sleep comes; he too is jealous, increasingly interfering with my plans to spend time with important people in my life. "I'm just so tired, I don't think I will be good company at all" I sometimes hear myself saying, groggily over the telephone.

Weeds are growing throughout the garden, and when I look inside my body, there don't seem to be many-hands-to-make-work-light. I maintain a positive day-by-day attitude. I understand certainties and appreciate unknowns.

Family and friends do not take for granted my presence here, it will not last. I will go with a seasonal change in the winds, and then the full moon will shine down only upon the ashes that once bore my smile. I say this not to invoke tears or to be cruel, but to wake you from any illusion you may have that I will succeed in my struggle for years and years in this rapidly weakening shell. Pay attention. Coming winds may catch you off guard.

Discharged from hospital in time for Summer Solstice

2010-06-20T23:36:00.001-05:00

As JSP previously wrote, I was hospitalized this week coming off an injury I sustained while on the soccer pitch for the first time in roughly a year. Today, I was given my discharge paperwork from the hospital. Discharge from the hospital is almost always an enjoyable time for me; it means that which brought me into the medical system has been addressed and that my doctors feel that I am ready to recover further, and better at home. It is generally the time for IV lines to be pulled out of veins and tape pulled off of itchy flesh; a moment for quick goodbyes to noisy beeping machines, frequent human grunts of pain, odors of cleaning products mixed with urine, as well as grateful nods to the medical staff that have looked after me for days.

Just before my discharge, my attending doctor in the hospital, Dr. H., told me that I had dodged three major bullets during my time in the hospital. First, was a surgery that he had previously told me would be 99% necessary to stem the flow of blood in my chest cavity. Second, I had dodged the additional CT scan with contrast that would likely have had long-term negative effects on my kidneys. This after strong urging by medical staff to go ahead with additional potentially kidney-destroying contrast solution my body had not yet cleared the contrast from a previous CT exam with contrast. Third, I had dodged a painful angiography they had also thought to be totally necessary. This Matrix moment triple bullet-dodge is proof positive that as a patient, the wait-and-see method can work wonders when urged by doctors to move forward "aggressively."

My discharge papers included prescriptions for pain medications and other drugs, as well as instructions not to engage in heavy lifting or any other concentrated physical activity, specifically addressing not playing soccer, for the next 8 weeks. This throws a monkey wrench in my plans to play with my soccer team and compete in the 2010 Gay Games in Cologne, Germany this summer. At my ~~old~~ age of 35, my cancer survivor body seems destined to be relegated from soccer player to soccer spectator.

Tomorrow, at 6:28 AM local time (Central Daylight Time) will be the Summer Solstice. To me this marks the coming of true summer, the actualization of that which has been a long time coming.

The 2010 Summer Solstice coincidentally coincides with, almost to the minute, the kick-off of the Portugal vs North Korea game of the 2010 FIFA World Cup in Cape Town, South Africa. I invite you to enjoy the World Cup if you have not seen any games yet. It is world class athleticism at its zenith. Enjoy it though you may not be in world class shape yourself.

I found the image at right by doing a Google image search for "Summer Solstice, discharge" which is album cover art from an album released in 1975, coincidentally the year I was born. The image spoke to me, so I include it here. The image links to the title song recorded for YouTube. Give it a listen.

It remains to be seen how/if my recent hospitalization will affect my ongoing clinical trial taking place at the Hoag Hospital in Newport Beach, CA.

Thanks to all for both the plethora of well wishes, gifts and cards that I received for my birthday and during my recent hospitalization. I am overwhelmed with the level of support I feel from Family, friends and colleagues.

Happy Summer Solstice! I am celebrating the arrival of summer by eating twelve delicious organic Rainier cherries, topped by three dollops of organic whole milk yogurt and four drops of raw honey. For those of you interested in a pagan perspective on the 2010 Summer Solstice holiday, I invite you to read Cathy Lynn Pagano's piece Capricorn Full Moon Lunar Eclipse & Summer Solstice.

End of Saturday

2010-06-19T21:07:00.003-05:00

JB remains in the hospital tonight and is in pretty good spirits. Before the end of the night we took a long walk and enjoyed the sunset from the 6th floor of the building. What we know now is that his hemoglobin level remains steady and he still has fluid in his abdomen. In addition the doctor noted there was also possibly some fluid on or in his lung. They want to monitor this situation a bit longer. They gave him some medication that is a diuretic with the goal of eliminating some of the fluid built up in his system. He is off all IVs and is taking oral medication for pain control. JB is also eating a normal diet with his appetite returning.

Tomorrow we cross our fingers and hope they will release him from the hospital care. Of course recovery at home is better as long as we are confident there are no major issues that would require the care needed from a hospital.

In the mean time we have been enjoying some visitors company during the day. Also the mornings and afternoons have given us World Cup soccer as a distraction. We enjoyed the win from the Dutch team over Japan, which puts them through to the elimination round of 16 teams. The Danish team is also one of our favorites and they improved their chances of moving on, with a very entertaining win over Cameroon.

Another unit of blood

2010-06-18T19:59:00.003-05:00

JB was given an additional unit of blood this afternoon in response to decreasing hemoglobin levels. This was successful to bring up the level to an acceptable value. Since then the subsequent test was stable.
Given this information it is unclear what is going on. There have been some indications they might release JB tomorrow, however it seems they do not fully got the situation under control. So we still wait and see what the next day brings.

Still stable on Friday

2010-06-18T14:53:00.003-05:00

Not too much has changed in the last 24 hours. JB's hemoglobin level remains steady and this indicates the internal bleeding may have subsided. In light of this, the team of doctors has continued the wait and see mode of action. They are moving towards bringing back a more normal diet for JB, suggesting they are less likely to be doing any surgery (they had him on IV feed since being admitted to the hospital in case a rapid move to the operating room was required).
There is no clear indication when JB might be released from the hospital. He still has pain in his lower abdomen and continues to get morphine to control the pain. However he is moving around better and last evening we took a long walk up and down the corridors of the 6th floor to get some exercise.
On a different note, there was some irregular heart issue that popped up on a scan yesterday, and they noted an elevation of a component called tropolone (sp.). This has prompted some concern and a cardiologist was scheduled to consult JB and his team of doctors sometime today. The communication and visitation by the doctor has been minimal the last day, which is somewhat annoying, but perhaps somewhat comforting. One would imagine that JB's situation is more managable now, thus the doctors are not urgently communicating problems. However we would still appreciate more direct contact to let us know what the situation is and future paths.
After completing my day at work, I will again return to the hospital and hopefully there will be more information.

Hemoglobin stable for now

2010-06-17T11:18:00.002-05:00

This morning JB was resting, although a bit fitfully. I was informed by the nurse that JB was given two units of blood to bring up his hemoglobin level. The blood succeeded in bringing up his hemoglobin level initially, and the first test after administration remained steady. They will test again around noon to see what it is doing.
Because the blood has brought up his hemoglobin and so far it is stable, they will not be scheduling exploratory surgery...just yet. Wait and evaluate is the mode we are in now.

Back in the hospital

2010-06-16T21:42:00.002-05:00

Last night JB returned to the hospital because of severe lower abdominal pains that persisted during the later half of the day. He went to the emergency room and they performed some tests and found that his hemoglobin levels were rather low. This was described as a likely symptom of iternal bleeding. JB remained in the hospital over night and through the day today to monitor the situation. His hemoglobin levels continue to fall and shortly he will be administered several units of blood to boost the hemoglobin.
Thankfully all of JB's vitals are rather normal, including his blood pressure, pulse rate etc. Unfortunately the doctors have their hands tied a bit. On Monday JB went in for a CT scan with contrast to evaluate some issues dealing with his voice box, throat and larynx. This was a result of an initial finding of a polyp on his voice box which the doctors wanted more information on to determine if it is cancerous and needs to be taken care of. Since his last CT scan was performed on Monday, his body is still in the process of flushing out that contrast (which is some radioactive material). The contrast does damage to the kidneys and will cause them to have reduced function, and too much dosage risks permanent kidney damage. With this in mind the team of doctors decided to take advantage of JB's normal vitals and take a wait and see approach.
Currently the plan is to give the units of blood to lift the hemoglobin levels and then monitor how he responds and see if the hemoglobin again starts to decline. If it stabilizes there is a better chance that a second CT scan might be performed with less risk, thereby giving more information on where to look for the internal bleeding. This might allow for minor invasion, such as laproscopy. The other option is that the hemoglobin falls dramatically tomorrow even with the blood transfusion, thus forcing the doctors to perform exploratory surgery to find the source to repair the damage. It is unlikely the internal bleeding will heal itself at this point.
So what is the cause of these troubles? JB played soccer on Sunday for the first time in over a year, and in the course of the match he took a spill. This might have cause some damage internally. It is also possible that a metastatic melanoma region is bleeding. The doctors mentioned that internal bleeding at the spleen or liver is not uncommon as a result of sporting injury. These can be found and repaired. I am uncertain what the remedy for bleeding melanoma might be, perhaps they can excise the tumor and repair the damage interally.
At the moment, JB is going to be in the hospital for several more days. His pain is being managed by morphine and he is in generally good spirits. He shares a room, meaning space is a bit tight for many visitors, however please do not shy away from a visit if you have the opportunity. I will try to update as soon as I find out if surgery will be performed tomorrow or if they will continue to wait a bit to see if his hemoglobin stabilizes.

Lost my earbuds

2010-06-04T00:34:00.000-05:00

In the never ending travel saga that has been my life lately, brought on by the requirement to be in California to participate in a clinical trial for my cancer, there have been casualties.

The casualties include my sanity, my pocketbook, and as of today my iPod ear-buds. I don't know where they went to, so I will not be listening to any soothing music on my flight back to Minneapolis this afternoon, unless I can find a replacement to purchase in one of these airport stores.

I am ready for a break in this mad travel world. I don't have to fly to California again until late this month, which means I likely have three weeks without a flight. Woohoo!

On Tuesday I got poked with a skin test. They injected just a little bit of some antigen under my skin. They told me to come back in 48 hours.

I had a pleasantly eventful Wednesday. A colleague of mine at the University, put me in touch with a friend of hers in Orange County, Tammy. She and I spent Wednesday traipsing around Los Angelos and Orange County. Tammy spent most of her life here, so was perfectly suited to show me some of the local sights and tastes.

After I drove to her apartment in Huntington Beach, we got in her car and headed toward the Getty Museum in LA. Tammy is an aggressive driver and her driving style is perfectly matched to the local expressways. I was happy to have her driving skills commanding the car, and I was also grateful for my seat-belt.

We arrived at The Getty Museum parking ramp and then took a tram up the side of a very steep hill to the summit, and there was the Getty in all of its glory. Tammi began taking photos, and she would continue taking photos of our adventures all day. The architecture and design of the museum was beautiful, as were the the gardens and the view of LA Skyline. Inside the museum, we were treated to an exhibition of Leonardo de Vinci's sculptures and drawings. It was an unexpected treat as neither of us were aware of what exhibit the Getty was featuring. We spent equal time outside on the museum grounds, wandering through a beautiful garden, bursting with flowers. Tammy thought I was a bit odd when I broke off a stem from a decorative chive plant and put it in my mouth. It was so flavorful and delicious. I confirmed my weirdness a few minutes later when we encountered decorative pea plants that were both flowering and bearing fruit. I told Tammy these were pea pods and I wanted to pick and eat them. She said, “eat them then,” so I picked a pea pod, opened it, showed her the contents and gobbled the sweet little peas down.

We left the Getty after sharing a conversation in the shade eating apples from a vendor. Tammy said, “Next we are going to Hollywood, so don't eat anything off the ground there, OK?”

Tammy drove us to the Kodak Theater, the venue for the Academy Awards, and she knew just where to park. We ate Shabu-shabu at a Japanese restaurant which was a new experience for me. Then we looked at the Hollywood sign and took a short walk on the Hollywood Boulevard Walk of Fame. The Chinese Theater was preparing to host the Hollywood Premiere of the movie “Splice,” so a large area in front of the theater was roped off.

After Hollywood, Tammy brought us to the Santa Monica Pier. It was a Coney Island type affair, with rides, games and vendors with the backdrop of the wind and the sea. We took a ride on the Ferris Wheel and enjoyed the screams of children on the rides below. After our stroll on the pier, we drove to the massive Queen Mary, the legendary steam powered British ship that is permanently docked in Long Beach. The QM was unbelievably large and now houses a hotel. We looked at it from one side of the bay and then the other. The sun was setting so we headed back to Huntington Beach. Tammy wondered if I would be up for a mess of crawfish for dinner, but I was still stuffed from the Shabu-Shabu so I took a raincheck. We said our goodbyes and I drove back to my hotel. It was a great day spent with great company. When we parted I said, “Thanks for being willing to spend the day with someone you had never met before.” Tammy's kindness and hospitality warmed my heart. I found it touching and refreshing that she invested her whole day with me, taking a chance on a stranger.

Today I woke up groggy, got my things together and checked out of the hotel. I went back to Hoag to have my skin test checked and then drove to the airport. After returning the rental car and checking a bag with the airline, I sat down and ate delicious leftover Thai food, yogurt and strawberries. Now I am waiting in the terminal for my flight to arrive before being whisked back to sunny Minneapolis, JSP, and the rapidly growing garden that awaits me, no doubt more mature than it was when I left it last week Friday.

Now I best find some replacement earbuds.

Writing from San Diego

2010-05-29T22:43:00.004-05:00

A Sesame Street DVD plays on my brother-in-law's computer. I am treated with optimistic choruses of "The Earth-a-thon" episode, which seems especially tragic in lieu of the fact that tons of crude oil are spewing into Gulf of Mexico. My nephew, who must be the happiest, but also the messiest baby ever, keeps trying to touch his father's prized laptop with dirty fingers. My sister enjoys her break from entertaining her child by reading a book. I sit in the room, understanding a sort of esoteric family reality as a singing PBS cowboy explains some sort of cloth dying process to children.

If I was not here in San Diego, feeling meh with family, I would be alone in Orange County feeling meh by myself.

I flew in to Orange County on Friday morning on a corporate jet, with two executives, two pilots, and a stewardess. I had a weirdly meaningful conversation with one of the executives for the first half of our flight before he returned to sit with his fellow exec for the second half of the flight.

I am in Southern California for my fourth visit to the Hoag Cancer Center. I've flown out here once a week for the last four weeks. I am tired of the travel, even the legs of travel that happen in corporate jets.

On Tuesday one or more nurses at Hoag will inject three substances into the skin on my arm. Then on Thursday I will return to have these injection sites "read" which will probably only take a few minutes. The information that they glean from this skin test will be compared to the initial skin that was done before I started getting the vaccine injections.

Latter, I will drive back to the airport and fly back to Minneapolis again, before having to come back here again in late June for my next vaccination.

Last week, I went to see a new doctor, Dr. Y., who is an ear, nose, throat doctor. Two factors motivated me to see him. One is the fact that when I clear my throat I spit up blood. The other is the fact that my April PET scan suggested there may be a growing tumor in my neck.

I submitted to an examination of my ears, nose and throat. A highlight was when Dr. Y. asked me about my gag reflex. I replied that I had acquired some skill in controlling my gag reflex. He stuck his finger down my throat while I did my best to accommodate it. Eventually I did gag... as you do. I then had the privilege of having a tube fed up my nose and down my throat. Dr. Y. moved this video enabled tube around and scanned my voice-box and throat for problems, before handing the device over to his student to wiggle around in my throat via my nostril. Fun for all, let me tell you.

Dr. Y.'s prognosis is that I have a polyp on my voice-box. He wants to do a biopsy on it and on the tissue on the back of my tongue. For this I will have to be put under general anesthesia. Lovely right?

The tumor on my left arm seems unchanged for the last month, which I guess is a good thing, except that it is just so big and ugly.

That's my check in from San Diego.

Blogging on the airplane

2010-05-17T13:29:00.001-05:00

This is a first for me, I'm writing this piece on an aircraft somewhere over Nevada en route to Orange County, California. On Monday I will be receiving a second dose of my cancer vaccine. On Tuesday I will be flying back to Minnesota, this time on a corporate flight that was organized through Angels Corporate Network, an organization that links cancer patients to pilots of corporate jets that have available seats. These seats are then donated to cancer patients that need care at hospitals far from home. So I'll be flying back home on a private plane. Funky, I'm really not that type of guy.

I have officially requested and have been granted permission to work three days a week this summer. In addition to accomodaring my treatment regiment on this vaccine clinical trial, it will also give me more time to work on writing more, organing past writing projects, and probably do more laundry. I look forward to spending additional time in the vegetable garden that JSP has gotten 90% planted in the back yard.

Typing is slow on my iPod touch, which means that as I continue to tap on the screen, the cabin crew is signaling that it is time to shut off our electronic devices and prepare to land.

... Picking back up the following day.
It is now Monday and I am sitting in the waiting room after getting my second vaccine treatment.

Southern California has been cold since my arrival, with a high for today of 62 degrees. In comparison, Minneapolis's high for the day is 73 degrees. I had to request a blanket from a nurse to stay warm in the waiting room as I had packed neither sweater nor jacket. It seems strange to be in Southern California pining for the warm weather back home in Minnesota.

Greetings from Southern California

2010-05-05T10:37:00.000-05:00

I flew from Minneapolis to Anaheim yesterday, and met with Dr. D and a nurse on his staff, Christina. They talked me through the clinical trial, answering my questions and giving me a very good sense of what this study is all about. By the end of my time there I felt confident that this study is both scientifically worthwhile and potentially beneficial to me as a cancer survivor. I am very comfortable with my participation in this clinical trial.

I was surprised when the nurse I was talking with told me that she and another colleague had found bothofus.org and had been reading it. I think they found it because I had mentioned being treated at the Hoag Cancer Center. I got a kick out of that.

A shout out to Christina and all the great people doing important work at Hoag.

The weather here is great and I am enjoying my stay in Newport Beach / Costa Mesa so far. The fragrant and abundant flowers here are one of the highlights.

I must be off to have a 9:00 AM skin test done at the center, but will write more later.

Simply lovley plans

2010-04-15T17:19:00.000-05:00

Did I mention that I have been back at work full-time for the past month? I'm not sure.

Yesterday I put together a list of the litany of appointments, flights, car and hotel reservations I need to keep track of in the coming month. I find that when there are a lot of things to keep track of, it is best for me to write them all down, in one place.

What's happening?

I am having more tests done, then I'll meet with three of my local doctors, Dr. A, Dr. R, and Dr. C before flying out to meet with my new Californian doctor, Dr. D on May 4.

I will be in California for about a week, in order to give Dr. D plenty of time to examine me and put me in one arm of his study or another. Based on the quality of my veins either he will either

harvest some things from my blood and put me in group 1 or
he will start administering the vaccine treatment if i am in group 2.

If I am in group 1, I'll have to come back in 3 weeks to start my treatment. If I am in group 2 I will have to come back to get a second treatment in a week.

It appears that I will have to fly in and out of Orange County about 16 times in the coming year. I hope I like it there, but I am sure that the air travel will wear on me a bit.

It is all out of pocket: airfare, car rental, hotel, hospital bill... a lovely thing about some clinical trials. So far the bill for my first trip out there is hovering around two grand, that is if I eat frugally when I am there.

There is of course a wrench that could be thrown into all of these well-lain-plans. If the upcoming tests show that my cancer has infiltrated any of my bones, I will be disqualified from the study. Again, simply lovely.

Another coupon/Groupon deal

2010-04-14T12:18:00.003-05:00

A few weeks ago I mentioned my new affection for a website called Groupon. They have a special "Half Off at Jax Café" that I decided I have to mention because it is in Northeast Minneapolis, and I have wanted to try this place out forever. They have been around forever, get rave reviews, and are considered one of the fancier places for dinner here in Nordeast. Since I am a vegetarian and Jax is a steakhouse, I never made this a priority, but since they have seafood (and I am actually more of a pescitarian) I was psyched to find the deal.

Have a look and consider giving it a try, for half price you probably can't go wrong.

Full disclosure - if you click the links to Groupon in this post, sign up with them, and end up buying anything, JSP and I get $10 in referral credit.

Radiation: therapy complete, what next?

2010-04-02T12:28:00.000-05:00

So on Wednesday of this week I underwent the twentieth radiation treatment on my right arm. This completed four weeks of therapy that began as soon as I could after my recent heart and lung surgery. The radiation was directed to address the very large tumor in my left arm.

"Did it work?" that is the question everyone from my doctor to my mother has been asking. I don't have a clear answer. The tumor appears to have stopped growing, so that is at least a minor success. From what I understand from my radiological nurses and doctors, sometimes it takes several weeks for the full effects of radiation therapy to become apparent. I hope that the tumor will deflate like a poorly crafted souffle, leaving me with a battered but somewhat normal looking arm. Right now my left forearm looks like it has a giant potato growing out of it just below my elbow. It is hard to miss. It is also growing more difficult to find a shirt or sweater I can use to camouflage it.

I'd like to get back the function I have lost in my left hand. There is a vague plan for surgery at some point. I have an appointment with Dr. C. this afternoon, so I may or may not have any new information. Sometimes doctors really have nothing to tell you.

After I meet with Dr C. I'l call the Hoag Hospital in California to see if I should make plans to head out there to start their clinical trial in a few weeks..

Sometimes I feel like I am trapped in a never-ending navigation of cancer treatment. I wish I could stop figuring out the next steps, and just glide for a while, letting the future take care of itself, the way I imagine my friends live their lives.

I'd love to just take for granted one season passing into another, void of surgery or radiation or vaccines or other in-hospital treatments. That's probably not going to happen, but a boy can dream.

A bad dream

2010-03-31T07:34:00.000-05:00

Collier's, "Bad Dream" (1944) Cooper, M - 006

This morning I had a very bad dream. It was primarily about conflict between my father and me. It felt terrible, just like my relationship with my father felt when I was a child. This was all the more disturbing because now, as an adult, I have a very good relationship with both of my parents, but especially with my father.

In my dream I was an adult and I had a new friend. We were jogging around the house I grew up in, which in my dream, was the house that my parents still lived in. For some reason in the dream, I decided that I wanted to run around the house in my underwear. I would say this peculiarity was connected with, or represented my sexuality in my dream. My new friend decided to do the same and I can remember calling out to my parents as we ran around the house telling them that we were running around their house in our underwear.

At some point we tired of running and we stopped. I felt attracted to my new friend and I let him know that in no uncertain terms, I would be happy to sleep with him. I realized after what I said to him that my parents had heard this, which was slightly embarrassing, but not especially problematic.

My father then went to into his garage, something he was always doing when I grew up. I was never comfortable in that garage with my father because it was where he was able to put down all of his expectations of me and tell me I was a disappointment to him when I did not meet those expectations. Additionally he used to force me to go into the garage with him and "help" him fix his automobiles. This usually consisted of me standing around in a foul mood, with him telling me to get one tool after another, and me telling him that I didn't know what that tool was or how to find it. That was usually met with stinging put downs from my father like "candy-ass" or other less endearing terms, but I digress from the dream at hand.

So in my dream, my father goes into his garage of my childhood. My new friend is now sitting on his bicycle with his pants back on, and is telling me that we should go biking. I had my trousers back on at this point too. I went into the garage and asked my father which of the bicycles therein that I could take. He said that I could not take any bicycle, which seemed spiteful since there were several there. I grew angry but accepted his edict.

Then my new friend asked me about a very long kite string (about 10 miles long) that he had asked me to stash in my father's garage on some previous occasion. I went back into the garage, still angry about the bicycle and asked my father what he did with the massive amount of string that I had left in his garage. He told me he had thrown it out. This made me more angry and I began yelling at my father and he began yelling at me.

Kite string seems relevant here as JSP and I really enjoy flying two-string kites together, but again, I digress.

Back in the dream my father and I are yelling at each other and our conflict is escalating while my new friend looks on, clearly troubled by what he sees going on. About this time, JSP shows up in the dream, pulling into the driveway in our black Jetta TDI. JSP sees what is happening and suggests that he and I and my new friend get in the car and leave.

I will have none of this and the yelling and insult fight between my father and I turns physical and now we are hitting and kicking at each-other and wrestling. It is both scary and exhilarating because I know that unlike when I was a child, I have the upper hand on my father now, and being stronger than him I throw him violently to the cement garage floor. I am not sure if I have hurt him badly, possibly giving him a concussion as he hit the cement.

I look down at him, defeated and breathing heavily. I look over at JSP and my new friend who is crying, and I feel terrible. As I awaken from the dream I think to myself, "was that all about the kite string?"

Clearly it was not. Some of this was likely brought up by the death of JSP's father. The rest of it I guess was unresolved anger over events in my childhood. I worked through most of my father son issues several years ago, but I guess my sub-conscious had been holding on to a few things. Also, due to physical pain from my radiation treatments I have been taking prescription narcotics to sleep, and these may have contributed to the realism in the dream.

Not just gloom and doom... also coupons!

2010-03-26T15:19:00.003-05:00

Things have been pretty heavy on bothofus.org recently, what with my surgery and treatment, and the recent death of JSP's father.

To lighten things up, this post is about a daily coupon site I found.
(A tip of the hat to Jennifer and her mother.)

Groupon uses collective bargaining to offer one really great deal per day via their web site.

Today they have an offer where you pay $20 for a $45 coupon for sushi/steak/drinks/etc. at Tiger Sushi 2's location in South Minneapolis on Lyndale Ave. Some other recent local offers included deals on Italian food, Aveda cosmetic products, books, and even dental care... weird but true.

The web site has different deals in different cities too, so if you live in say Denver or Chicago they have deals specific to those cities too.

Signup at www.groupon.com and see if they'll have any deals you might be interested in.

Full disclosure - if any of you click the links to Groupon in this post, sign up with them, and end up buying anything, JSP and I get $10 in referral credit that we can use to... maybe eat more sushi. Sounds like a win - win deal to me.

Ashes return to the Earth

2010-03-22T20:13:00.001-05:00

I have returned from an extended stay in Oshkosh where I was taking part in the passage of my father from the world of the living to his return to the Earth. The funeral was on Thursday last week. There were many people in attendance, family, friends and supporters. I met people I had not seen for years and even decades.

The atmosphere was upbeat, facilitated in part by three poster boards filled with pictures of my father in happier times. My mother and I put together the pictures the weekend before, filling one board primarily with pictures of my dad when he was a child. The second board was filled with wedding pictures, and pictures of our family as it developed and matured. The final board was a mixture of pictures of my father, representing the things he cherished in life, including the cats, his house and yard and family and friends.

My father was cremated. In place of a rather somber casket holding a representation of a body as it once was, instead was an alter with a granite box holding his ashes. Surrounding my fathers remains were flowers and items that we thought represented his life. There was a bird house he built and decorated, an antique combination safe/bank that he polished and refurbished, his reading glasses and a small Walkman radio which he always fell asleep listening to. Finally there was a bag of pork rinds, a wicked treat he enjoyed though he knew was not good for him.

For nearly two hours people milled in and out of the main room in the funeral home. Most talked and reconnected sharing notable laughter and of course tears. There was a short ceremony presided over by a Lutheran minister named Nancy. She recounted stories my mother and I had written for her. She called for anybody willing to say some words about my father, and my Uncle Larry bravely stood up. Larry had so many wonderful words in memory of my Dad, everyone was impressed with his presence and eloquence.

The rest of the weekend was up and down. Friday held some stressful moments as my mother and I went to task to arrange closure on banking accounts, pensions, insurance etc. There are so many details and obstacles before one can finally rest in peace. I believe we made good progress on many fronts, trying to put as much of these final things in order while I was still in town to assist my Mom.

Saturday and Sunday were more relaxed, having time to visit more with my family each day. Sunday morning was especially important to both Mom and me. We choose to spread my father's ashes around the homestead.

My Mom and Dad built their house on farm land back in 1977. They planted sapling trees throughout the yard. A garage soon followed along with the garden and flower beds. Most recently they built a charming barn in the back yard. The first floor to hold the mowers, snow-blowers and tools, and the second floor to eventually be finished into a guest room. My parents had hoped it would be a place the JB and I could stay and have more room whenever we visit, as the house itself is a crowded place with more than 3 people.

My mom and I thought it was fitting that we spread dad's ashes all over. Each one of the maybe hundred or so trees in the yard got a share of his ashes. We encircled the house, garage and new barn with his remains as well. A liberal amount of ashes were returned to the garden and yard too, where they can hopefully nourish the blooming of new life. We saved a small portion of his remains for the plot in the cemetery and I took home a bit too which is safely placed in the small bank I mentioned above.

The spreading of Dad's ashes was very moving for my Mom and me. In a way we were saying a final good bye, but also we were immortalizing him on the land he spent most of his life on. We saw the ashes fleeting in the wind. Our clothes, hands and shoes touched the dust as well. He is part of us, physically and most importantly in our memories. I will certainly hope to never forget that Sunday morning.

Finally I wish to extend thanks for everyone who has sent cards, flowers and messages of support over the last week and half. I appreciate knowing you are thinking about my family at this time and I am thankful to have you all in my life.

My arm is not doing so well

2010-03-16T17:14:00.000-05:00

Today was day ten of my twenty day radiation therapy. My arm has edema due to the radiation. Also, the skin on my giant evil tumor on my arm is starting to blister and break down. All the while the tumor tissue seems unchanged, not softening yet as the doctors had hoped it might.

I have been dutifully going to the hospital for these treatments for the last couple of weeks, and feeling pretty good in general, but seeing the Dr. R today and seeing her disappointment about the way thing are going with my arm, was disheartening. I had a dream that this treatment was going to work damn it, now why doesn't it seem to be working?

I rented a car this morning to drive to the funeral in Oshkosh tomorrow; I can still drive.

It is a very sad occasion for a visit, but I look forward to seeing Linda, JSP's mother, despite the grief that she must certainly be experiencing. I know that having JSP with her has been comforting.

Thoughts about my Father

2010-03-14T13:56:00.002-05:00

This Friday my dad died unexpectedly, a complication of a hernia surgery perhaps but the doctors were unable to conclusively determine. I was called by my mother at 7AM just after finishing my workout. She was crying and said my father was found unresponsive besides his hospital bed and they are trying to revive him. She was confused and sobbing and said she would call back. I felt a surge of sadness and helplessness. I live in Minneapolis, 5 hours by car travel to my parents home. I knew I needed to be there, to be with my mom and dad, so I quickly put my things together and got onto the highway to Oshkosh.

I traveled as quickly as possible, without trying to get pulled over by the police. I arrived in Oshkosh just as my aunt Marion called telling me that the situation had gotten dire. I told her that I just arrived in town and would be at the hospital within moments. At the hospital entry, my uncle Larry greeted me and took my hand to lead me to the intensive care unit. There my father was surrounded by his family, my mother crying at his side, his sister Judy and brothers Bobby and Ken with his wife Elaine. My mother's sisters Marion and Sue were there along with their husbands Glenn and Larry.

The doctors were also in the room and mumbling something to my mother, something about there was nothing more that we can do and he is loosing pulse and vital signs. My father lay in the bed attached to multiple life sustaining machines. A tube to help him breath and various other contraptions that beeped and displayed. Dad was breathing and his chest was heaving like a man sleeping heavily. The doctors continued to assure the family that there was nothing more that could be done. He would surely not survive without the aide of the machines.

At this point I had only been in the room 30 minutes and it was clear the end was close. Blood pressure nearly undetectable now, the final moments at hand as the doctors removed my father from life support. We all were at his side as the life that had sustained him for little over 60 years faded into the ether. I held his arm and kissed his forehead while it remained warm. And moments passed as I continued to have his arm in my hand I could no longer feel the living warmth, his body grew cold with lifelessness.

I am writing now because the minister who will preside over the memorial service this Thursday wishes to know about my father, from the family perspective. My father was not actively involved in the church, but I believe he felt a connection to it. My father is not a simple man to describe. I am an only child and have had the fortune of near undivided attention and endless support as I have grown from infant, child and adult. Together my parents put together nearly ideal conditions to grow up strong. My father instilled deep devotions to responsibility, independence and stewardship (especially towards family). My dad was gifted in many ways, he could fix nearly anything and pretty much built up the house and land he and my mother have lived on the past 30 plus years.

My father was strong willed as well as stubborn. It often came down to the fact that dad was always going to be right, however he was not so proud and he occasionally admitted that he was wrong about a few things. I never enjoyed the fact that my dad was so entertained by the likes of Rush Limbaugh and Fox news, that said we did not share identical political beliefs.

Dad was a quite man. To be honest we did not share a lot of thoughts and feelings with each other. In a perfect world we would have shared our emotions and feelings together, in a perfect world my father would be healthy and alive so we could have continued to try to open those door and pull down some of the barriers that made it difficult to interact emotionally.

I have always been confident that my father deeply loved me despite not communicating it so directly. I have deep love and respect for my father and respected his personal comfort zone in these areas, hoping that one day he might open up a bit more. Now that he is gone, part of me is frustrated and angry that we were denied time to grow closer to each other. I regret that I was away for too long, only able to occasionally make small talk on the phone with my dad. I honestly am not sure when the last time I talked with my father was. Perhaps a few weeks ago there was a few moments he hopped on the phone to chime in about something or let me tell him how things in Minneapolis were going. I am sad that the last time I got to see my father alive was while he was artificially being held in this world, unable to know I was there and holding his hand.

The funeral is this Thursday. I have stayed with my mother in Oshkosh since I arrived on Friday and a bit later today I am headed back to Minneapolis. I will return to Oshkosh in a day or so after I have organized some things at home and coordinate how JB and I will tackle the week ahead together. My mom of course is devastated and will need my support as well as the support of family and her friends.

Life and Death

2010-03-12T17:28:00.005-06:00

JSP received a phone call early this morning.

The call was from his mother. She was calling from a hospital in Oshkosh, Wisconsin. I am not clear on the details, but I know his mother sounded very frightened on the phone. She told him that his father was in intensive care at the hospital and unresponsive. This was shocking to JSP.

He told me he was driving to Oshkosh to be with his mother and father at the hospital. I offered to go with him, but he said it would be simpler if I did not go with.

I received a call this afternoon.

The call was from JSP. He was calling from the hospital in Oshkosh. His father had passed away. This was all very sudden.

Please don't take the people in your life for granted. You never know how long you have with them.

Radiation: three treatments down, seventeen to go

2010-03-05T15:07:00.000-06:00

I just returned home from my third radiation treatment on the giant evil tumor in my left forearm. Each treatment goes pretty quickly; I am usually in and out in ten minutes. I lay down in this machine and receive about 15 seconds of radiation from above and another 15 seconds of radiation from below. Badda bing I sit up and get up off the machine and go home. So far my skin seems to be holding up pretty well.

The treatment itself is not terribly painful. The technicians place my arm into this mold they made of my forearm; The pressure the mold exerts on my tumor is the only painful part of the process.

I'll have a treatment done each weekday for the next three and a half weeks. The goal is to shrink the tumor and hopefully return full functionality to my left hand, which has now lost about a third of it's functionality/mobility due to the pressure that the giant evil tumor puts on one of the nerves in my arm.

My surgery was five weeks ago today. Overall I feel well. My breathing continues to go smoothly, and my surgical scars continue to heal.

I am considering returning to work as early as next week. I look forward to seeing my colleagues again, and to getting back to projects that I put on hold. The radiation therapy makes me extra tired, so I'll have to measure my desire to go back to work against my desire for more sleep.

My health: good news and bad news

2010-03-01T15:21:00.002-06:00

Health issues often contain a "good news, bad news" dichotomy, my latest update will contain this contrast too.

First I'll relate the good news, and there is a bunch of it.

I am continuing to recover excellently from my recent lung and heart surgery; I have not run into any complications on that front. My surgery wounds healed significantly and the scars, while a bit Frankenstein, looking as good as possible. My breathing is greatly improved from before surgery. I am coughing far less frequently. No more excusing myself from social situations to cough up phlegm, blood, and tumor. I am consistently able to clearly inhale more than two liters of air into my remaining lung-and-a-half. My heartbeat has been regular since surgery too. I am so grateful not to have needed a pacemaker.

The Phase II clinical trial in California has been able to grow a successful cell line of my cancer. They tell me that they are ready to administer to me their experimental personally-tailored cancer vaccine. This is great news to me. The opportunity to participate in this study gives me additional hope that I may have an additional tool in my tool shed to keep the weed of cancer in check.

The hold on receiving the cancer vaccine now me; I am starting radiation treatment for the giant evil tumor on my arm on Wednesday of this week. The radiation will be weekdays daily for 4 weeks, for a total of twenty sessions of radiation therapy. Three weeks after the radiation is complete I become eligible to enroll in the clinical study and receive the vaccine they created for me. So if things go smoothly it looks like I may be going to California for experimental treatment in late April.

This brings me to the bad news: the giant evil tumor in my left arm is continuing to grow quickly.

The giant evil tumor has been causing me a significant amount of pain since my surgery. In fact it would be safe to say that most of the pain I have experienced since leaving the hospital three weeks ago is attributable to the tumor in my arm. The giant evil tumor has grown around and into the bone in my forearm and is putting lots of pressure on the nerves in my arm that control my hand. Last night was especially excruciating. When I woke up this morning I came to learn that I no longer had full control of my left hand. My hand is extremely week and the movements I can control now are very limited. This was shocking, as I was using my left hand normally just yesterday.

You clear one hurdle and another one is in front of you before you know it.

I can no longer type with my left hand. I can lightly grasp things still, and could probably carry something as heavy as 2 pounds (1 kilo) in my left hand.

With radiation treatments on my arm starting on Wednesday I am optimistic about regaining the use of my left hand, but the idea of loosing my left hand, suggested by my orthopedic oncologist, Dr.C, which seemed so absurdly comical and unlikely just over a month ago, now seems to be a distinct possibility.

I'll be seeing Dr. A and Dr. C tomorrow to discuss this development. Then on to radiation the following day... Hooray!

I recently saw the medical bills for the surgery I underwent, and wow... lets just say I am really fortunate to have good medical insurance.

I went for a marvelous walk with my friend Fremenine (she writes Digging In) along the Mississippi river yesterday and enjoyed the sunshine. It was the most exercise In had had since getting out of the hospital. I think I will go take another walk to bask in the sunshine and breathe the warmer than normal winter air.

Quietly recovering from surgery at home

2010-02-22T12:19:00.001-06:00

Hello and greetings from Northeast Minneapolis, where I have been holed up recovering quietly at home for the past two weeks. I have some pretty ugly scars, including a big sideways "T" on my chest, results of cutting my torso open using the "clam shell" method. I also have the scars of four inch long incisions in my belly that were used to drain fluids from my body cavity during and after the surgery.

I have one-and-a-half lungs,and my heart no longer has a golf-ball-sized tumor hanging around inside of it. That much is resolved. I am recovering well. I nap a lot, but I understand that it is pretty normal to need more sleep when you are healing from major trauma.

I have follow up meetings with my lung and heart surgeons, Dr. M and Dr. L2 this week. I think they will be pleased with my progress.

The large tumor that remains on my left forearm has yet to be dealt with, but at this point it is looking like Dr. R will be putting me through a battery of five weeks of radiation treatment to try to stop the tumor's growth.

I also have had some communication from the Haag Hospital in California suggesting that they may be making progress on preparing a vaccine for me from my tumor tissue via their clinical trial.

A key to my doctors:
Dr. A - my primary oncologist (cancer doctor)
Dr. B - my dermatologist (diagnosed me with cancer twice, in 1998 & in 2007)
Dr. C - an orthopedic oncologist who examined the tumor in my arm in 2010
Dr. E - a plastic surgeon who performed two surgeries removing tumors in 2008 & 2009
Dr. K - my general practitioner, refused to biopsy me in 2007
Dr. L - a practitioner of Chinese medicine and acupuncture I saw in 2009
Dr. L2 - my heart surgeon (coronary specialist)
Dr. M - my lung surgeon (thorasic specialist)
Dr. R - my radiologist, oversaw my whole brain radiation in 2008, possibly my arm radiation in 2010

Released and on his way home

2010-02-07T15:04:00.003-06:00

JB has been released from the hospital and is on his way home. The last remaining tube was removed this morning and all checks out for his departure. No more trips necessary to the university, instead think about a visit to the homestead to spend some time with JB while he continues his recovery.

Saturday afternoon

2010-02-06T12:03:00.002-06:00

It is Saturday afternoon and I have just arrived at the hospital to visit JB for the afternoon. Our friend Marcos is here and we are discussing the nuances of squash and racquetball. It is fairly quiet here, the gray weather has put a muted tone to the ambient light in the room. Thus JB seems relaxed and calm.

I woke up this morning, sleeping in until 8ish which was nice. I did a few chores and then went to Trader Joe's and then to the VW dealership to get the first service oil change and tire rotation done on the TDI. Afterwards I returned home to put the groceries away, then whisked off to the hospital.

The team of doctors breezed in and out just now. They looked at JB's vitals and commented that they were good. His progress is on track. They are watching the volume of fluid draining from his chest right now. The goal is to get that volume to decrease below 250 ml over a 24 hour period. The drainage has decreased daily, however it is at about 300 ml/24 hours at the moment. One doctor commented the drainage tube could possibly come out tomorrow. Once that tube is out, there is not much keeping JB here. The doctor that did the actual heart surgery had a different assessment, saying he would leave for sure by midweek. It clearly has become a waiting game now for the eventual release.

Any more news will arrive here at the blog over the weekend. The atmosphere is conducive for visitation this weekend, parking and traffic are more manageable for those not familiar with the U of MN. And always much love and thanks for everyone's support.

A week ago today

2010-02-05T18:10:00.003-06:00

Last week at this time, JB was being transferred from post-op to the cardiac ICU. It was a long day and he was just opened up and had parts removed. They were reviving him, and he slowly was realizing the pain he was in.

Today JB is in a regular hospital room. He made a long walk, sat out in the hall looking out the window onto the Mississippi river and entertained 5 of his co-workers shortly after lunch time. Our mutual friend Pam showed up later in the afternoon and gave JB a nice foot massage.

I arrived for lunch and am now back at the hospital to spend the evening together. Before arriving I stopped at Obento Ya, a sushi restaurant. I ordered take out and we shared several rolls in the room. JB's appetite was not as it has been for sushi, but he managed to have a decent dinner.

Now were are both on the internet, me blogging of course and JB on his Itouch. There has been no news of any health related events. JB's heart rate is again in flux, but there does not seem to be a concern. His blood pressure and other vitals are very good. His nurse made a comment that JB's blood pressure is the best of any of his patients this evening...he was given a virtual gold star.

Perhaps tomorrow they will take out the sole remaining tube, a chest drainage tube. Nothing for certain of course because everything here is mutable. There are also whispers of discharge, but this is also premature since nothing has come from any of the doctors, perhaps only the optimistic nursing staff.

I am happy the work week is complete. It has gone by fairly well considering the nearly constant moving...from home to work to the hospital to work to the hospital and home etc. Now the weekend offers a bit of relief. I have an appointment to take the car to have its first service and oil change in the morning. Then I will likely make a grocery stop before heading to the hospital.

Approaching one week

2010-02-04T18:01:00.003-06:00

Thursday evening finds me at the hospital visiting with JB. He is on the 6th floor in the cardiac recovery area. The floor is much less stressful, less noisy and generally a better enviroment. Still not like home of course, but certainly better.

The nice thing about JB's status the last two days is that there is not much going on. I do not have to comment on any awful pain, or gross episodes. JB is pretty well overall and interactive when he is awake. A good sign is that he has grabbed his Itouch and is browsing the web and e-mail. That is a sign that he is recovering well.

I made some food (as well as many other people including his mom who made some tasty veggie soup and some of his sisters brought in good organic blueberries, raspberries and bananas. So, JB's appetite is pretty close to where it was before the ordeal.

The staff on 6C is nice too. They come in less frequently to poke or prod him. Right now JB still has one IV and one drainage tube remaining. They are possibly going to remove that drainage tube tomorrow. There is no word as to how long he will be held in the hospital. I have not seen or talked with any doctors since yesterday evening. The cardiologist briefly walked in last night, but only wanted to see some vitals and quickly was gone.

Again, any visitors are welcome as the weekend begins. JB would enjoy the company to help pass the time. Thanks everyone for your support.

Now on 6C, out of ICU

2010-02-03T18:17:00.002-06:00

This evening JB has been transferred out of ICU to the 6th floor regular care floor. Another step in the progression of his recovery. Before the move, JB had two walks and sat up in the chair. He has been having bathroom breaks too. This evening he had a substantial meal too.

The pain medications are being reduced, but this is causing him to feel the effects of the surgery. Especially when he coughs...it looks like a bear to deal with. He just ordered some morphine. A few more connections were taken away. Now two I think, an IV (not hooked up) and a drainage tube still in his chest.

The new room is pretty decent. There is a nice view out to the river, the HWY 94 and Lake St. bridge. It will be significantly more quiet and therefore restful. Already I can see JB drifting off to sleep more easily. Hopefully the stay will not be too long, but it will be a better environment for the next few days.

Delicate balance

2010-02-02T15:35:00.003-06:00

JB had another roller coaster lunch time today. Yesterday I mentioned he was experiencing tingling/numbness and loss of control of his left side. This lasted only 5-10 minutes, but had the cardiac team and neuro team evaluate him. It was not clear what had happened, but perhaps the stress of the walk he recently made and the position he was laying in bed caused it. Today when I arrived JB was sitting in the chair and looking pretty good. He was responsive and had a few sips of apple juice and a few spoonfuls of yogurt.

Within a few moments, his behavior began to change. He requested to get back into bed, and upon transfer he started loosing the ability to speak. The words were not coming out and he was generally not making much sense either. This time he signalled the right side of his body was feeling tingling and loss of control. He became quiet unnerved, and thrashed a bit too. The nurse tried to calm him but probably aggrevated him more with some of that syrupy talk that nurses sometimes use to address a patiences desires.

The cardiac team again arrived and evaluated JB. The delutional state and fog started to lift a bit and JB began communicating near normally. A neurological team was to arrive soon. JB then started to doze off and it looked as if the situation had calmed down.

So it is unclear what is happening, but there are a few possibilities. Today they changed over to a new pain medicine. The goal is to wean off of morphine, but there is still pain requiring treatment. They decided to go with oxycodone (I think, but this may be wrong). I wondered why they chose this, since there is a history of JB having adverse reactions to medications. For example the antibiotic that he took in December while dealing the the lung infection caused him to have delusional dreams and really upset his sleep pattern. Additionally during his IL-2 treatments we found out that a combination of drugs they were giving him (if I remember correctly they might have been the anti-nausea and sleep inducers) caused JB delusional episodes.

We mentioned these facts to the doctors and nurse and suggested that an alternative pain med would be best. JB has been occasionally taking vicoden to help him sleep through the pain his tumor on his arm gives him. The dose he takes had no adverse symptoms, so we suggested that vicoden would be a better pain relief option.

In light of this recent episode, they will be keeping an eye on him in the ICU. However they did clear a room for his eventual transfer to the 6th floor. Perhaps this move will still take place. I am hoping he sleeps off the effects of the drug and that was the cause of todays event. I think JB will be more comfortable out of ICU, less stressful noises and surroundings. Of course optimally JB will be more comfortable when he eventually returns home. No news about that happening, but updates will keep you all informed.

The amount of visitors and their energy has been appreciated. There is always room for more to come by, even for short moments. JB remains tired a lot, so the experience would not be the most stimlulating. I think that simply loving bodies present ads a level of calmness that is palpible.

I'll be heading back to the hospital after finishing my afternoon at work. I will try to update on the situations I described above.

Remaining in ICU

2010-02-01T17:41:00.002-06:00

Good Monday readers. The day has gone by and now we are waiting for JB to be given the okay to leave ICU. There have been some issues regarding the function of his heart. On Sunday, his heart rate was in a state of steady decline. Nothing alarming, but a concern that his heart pace function was not working properly. They tested the pace center of his heart with a drug, and it responded, albeit with a slightly irregular signal. They have continued to watch him, and his heart rate is more normal today. The nurse said at the moment they will not put in a pacemaker.

Today JB was up and increased the length of his walk 2 fold, and he was up for several hours. A slightly scary moment occurred when JB experienced a loss of sensation on his left half. You could see it on his face, an unresponsive smile on his left. The heart doctor arrived, and by that time it had gone away. A few tests were done and nothing abnormal was observed. Perhaps the stress of his exercise and the position he was in resulted in this temporary event.

They want to monitor his heart another night and the plan to exit ICU is tomorrow perhaps. JB switched back to morphine for the pain today. Food is starting to become a concern as they are beginning to get feeding back...starting with fluid/juice/broth. I am bringing in organic fresh juiced apple drink. Solid food soon, but not much suitable on the hospital menu (certainly not Gerson Therapy approved).

Sugar coating the realities of major surgery

2010-01-31T14:55:00.003-06:00

While sitting her in JB's room and reading through all the positive and loving replies sent to the blog and via e-mail and facebook I have some thoughts in my head. I have been wondering if I have been trying to put a positive spin to the progression of JB's surgery and recovery. I believe that in general that JB is doing well...considering. But it is the 'considering' part that maybe neglected in what I relate to you readers. Only JB could directly speak to the ordeal this is going through. I cannot accurately describe what he is feeling, physically or emotionally.

So perhaps in the next paragraph I will do my best to tell you some of the darker side of JB's experience. To begin with he now has a swollen scar running at least a foot down the middle of his chest. Also there is a horizontal scar from the middle of the vertical scar which is 8-10 inches long. At one point there were four feed lines into veins or arteries. There were two drainage lines from his chest, one remains and is slowly draining bloody fluid into a measuring containing. Of course there is pain, and that requires frequent dosages of pain killer. Originally it was morphine and now it is deladid. JB occasionally coughs up bloody mucous which is an incredibly painful event. He tries to coordinate the cough to shortly after a pain dosage. Then there are minor issues, like itching due to laying in bed and the aches also associated with limited movement.

It will take weeks and months to heal the wounds, repair the muscle, fill the space left empty by the removal of half of his right lung. Perhaps 100% return to pre-operation abilities is naive to expect or hope for.

On the other hand, the doctors and nurses mainly remark on the fast pace of his recovery. JB is passing and exceeding the benchmarks expected day to day. So when I write I relay more of the positive news versus the negative. It is the reality of surgery to have negatives and I personally want to accept them and write about them more..not for the shock value.

Walking on Sunday

2010-01-31T14:14:00.003-06:00

I just arrived at the hospital to be with JB for the afternoon. When I walked into the room, they physical therapist was assisting JB in getting ready for his first walk since his surgery. They got all the machines mobile and he stood up slowly. After some stabilization he was ready to go. The therapist walked him down the hallway and back, about a 5 minute walk.

Earlier this morning a cardiac therapist was in to see JB. This therapist is charged with building up endurance and had JB do some standing in place/marching type exercises. Not the most pleasant fellow, as he was not too patient and rushed JB a bit. These two therapists will continue to work with JB in the upcoming week.

Tomorrow morning, JB is scheduled to leave cardiac ICU and be moved to the 6th floor. When we get more details on this move I will pass them along. Visitors are welcome and even though JB is generally tired he will heal faster with loved ones spending some time with him. Just the presence of friendly faces is enough, no need to worry about interacting.

Reading poetry

2010-01-30T14:56:00.002-06:00

I started reading a few poems to JB. The afternoon is passing by quietly. Just been me sitting here with him as he is recovering. Overall the recovery is proceeding without much trouble. They sat him up awhile ago, and plan to do it again soon. His sister Susan just arrived and is visiting before heading home to Iowa.

Later JB's folks will be coming by to spend some time. He had a few sips of apple juice to help bring up his glucose level. That was good, but the apple juice was not that wholesome. So I can start juicing for bringing in to the hospital tomorrow. They finished administering insulin and the last blood pressure medicine is being slowly taken away. The heart rate and blood pressure are holding steady and normal.

Saturday morning update

2010-01-30T10:45:00.002-06:00

JB is doing well this morning. He has had the temporary pacemaker removed, as well as a number of lines, the cathader and the breathing tube. He is beginning breathing exercises and a physical therapist will be coming in sometime this afternoon to get him moving, out of bed and perhaps standing even.

The pain is considerable, and to combat this he is getting regular doses of morphine and percaset (sp,). Considering the extreme nature of the procedure I would say that JB is doing very well this first day post operation.

The staff is attentive today but only one doctor has passed through with nothing much to offer save for reminding him to work on breathing so the lung that was operated on begins to function and heal properly.

Currently JB is in the heart ICU on the 4th floor. His room is 4-515, but that could change as he was moved last night for some reason. There is a limit to the in-room visitation of two people, however there is ample room in the waiting area for people to come visit in shifts.

Right now JB has dozed off, likely a result of the most resent morphine dose. But since I arrived earlier this morning he has been very responsive. I am in a much better place compared to last night, feeling positive about the status of JB and his recovery. Last night was stressful watching JB wake from the anesthetic and knowing how much pain he was experiencing. Of course the pain will persist, but it appears to be managed well at the moment.

Trying to put a positive spin on it

2010-01-29T14:46:00.005-06:00

JB has come through the day of procedures. The heart doctor consulted the family here (JB's parents, his sister Barb and cousin Jackie). They found much more extensive tumor growth on the heart. For some reason all the scans that have been performed were not able to show the degree of melanoma present. The procedure performed on the heart was needed to remove a piece of tumor that had the potential of detaching and causing an embolism. This tumor was successfully removed and the doctor said it was the size of a golf ball.

The melanoma has significant infiltration on the vein leading to the right ventricle of the heart. At the moment it is not connected or affecting the pace center of the heart, thus there was no need to install a pacemaker. However the doctor mentioned that he was not able to remove any of this cancer without damaging the heart function. I inquired if this cancer was going to play a detrimental role in the heart function, and the doctor said he was uncertain. It would depend on how fast the cancer continues to grow and which direction it goes. The cancer is not likely to cause immediate blockage of the ventricle, it is not close enough to the valve at the moment to cause a problem.

So overall it is a mixed bag of news. JB will be happy to know a pacemaker was not necessary. The threat of an embolism is diminished. The future is uncertain as to how the cancer will affect the overall heart function. The procedure was necessary, hopefully the removal of his lung mass will improve his quality of life, reducing the coughing, chest tightness and mucous/blood coughing. The risk of an embolism is reduced and hopefully his heart is strong to overcome the melanoma infiltration that surrounds it.

Thanks to everyone for their continued love and support. Updates will continue as they come in.

Initial news on the heart phase

2010-01-29T13:12:00.002-06:00

The phone rang and Barb answered. It was for us. The nurse called and said the heart procedure is completed, the heart/lung bipass machine is being disconnected and the doctor will be out within the hour to update us on what was done. The initial news suggests that the cancer was not attached to the heart valve, there was no need to place a pacemaker and the procedure was not as involved as the worst case scenario.

Come back in an hour or so for a more complete update on the second stage of the surgery.

Stage one is complete

2010-01-29T11:37:00.002-06:00

The lung surgeon just chatted with us (I am here with JB's sister Barb and cousin Jackie) and has completed the removal of the upper two lobes of his right lung. The operation was successful, and in the doctor was very happy at how well it went. The procedure involved removing the bad portion, then reattaching the breathing tube with connection stitches of some sort. JB is stable and there were no complications. The removed lung was filled with cancer but the rest of the lung looked good, except for one small nodule that they also removed.

Now the heart surgeon is on the clock and this second stage of the procedure will take another several hours. It looks like by mid to late afternoon, all the operations will be complete. More news soon.

Friday morning

2010-01-29T08:23:00.003-06:00

Welcome to the first day of JB's surgery. We woke up at 4Am this morning to get the day started. A quick shower and collection of some items preceded the drive to the University hospital. The admittance lobby was already filled with people waiting for their surgeries. By about 5:30 we had checked in and paper work initiated. Shortly afterwards, JB was taken to pre-op and suited up in gown. The first bit of unpleasantness was the hook up to the IV. The first IV is the only one that JB will be aware of, but as usual this procedure is uncomfortable.

The lung and heart doctors made a stop for a final consult and there was no unexpected news. JB expressed his desire to try to avoid the placement of a pacemaker. However the heart doctor made it clear that until they are able to inspect how invasive the tumor in the heart artery area is they will not know if they will need to disturb the area of the heart that signals the heart beat. The doctor mentioned he will do his best to avoid any unnecessary actions.

The operation will take 6-8 hours, and I will be maintaining a watch while here at the hospital. JB's folks will likely arrive later to lend support. Following the surgery, they will keep JB sedated overnight to help stabilize the situtation. A breathing tube will be in place during this time. Tomorrow morning they will slowly revive him, and when he begins to be awake, they will access the lung and heart function and then plan to remove the breathing tube. The rest of the day JB will remain in ICU with sedation and pain relief. Tomorrow I anticipate JB to be mainly out, and hopefully generally unaware of any pain or discomfort.

Hopefully as the weekend proceeds, JB will revive and begin healing. My goal is to devise some type of interactive calender such that anyone that wishes to visit will be aware of the number of people there. Perhaps the calender will facilitate having somewhat constant support from someone during most of the time he is awake.

At the moment I am uncertain where his recovery room will be located. We are at the University hospital at 500 Harvard. More information will come when I am informed.

The calender can also be used to arrange support when JB returns home. As I mentioned, this will be a time when he will need constant help for a whole range of issues. For now we will wait and see how he is doing and what care he will require.

Thanks for all the support and warm wishes from everyone.

Less than a week

2010-01-23T12:09:00.004-06:00

It is just past noon on Saturday. I am finishing up a pot of coffee and reading over the day's events in the news. The day is gray and it is actually raining now. Somewhat unusual for rain in January, but I am thankful for the milder than normal weather this week.

A countdown is in progress. Next Friday, early in the morning, JB and I will be headed to the hospital. Uncertain how long it will take to remove some of his lung, a portion of his heart and a bunch of tumors on his arm. I will be at the hospital that day. I revealed the plan to my manager and they are supportive of the idea that I will likely be dealing with uncertain weeks ahead.

I wish I had a better idea of what will be happening over the next few weeks. A week in the hospital for sure to recover somewhat. What will JB be like after that week? Will he eat normally? Will he have a breathing tube? Will his body be strong enough to walk around? It is unclear and of course a bit scary. The initial description of the procedure prescribed up to three months before something close to normal is achieved.

There will be some negotiations too. I am thinking about figuring out an arrangement that will keep JB company and care. I am thankful for the willingness of JB's extended family to help out. I will likely be having to work through this procedure. Since we are not officially partners in the eyes of the law, I am unable to take part in the Family Medical Leave Act. This is one of the many problem with our society not recognizing our partnership. As I mentioned above, I am thankful that I have some amount of flexibility to deal with the stressful changes ahead.

We are going to try to enjoy the upcoming days as much as possible. The many requests to spend time with friends and family and this week will make the time go by quickly. Again it is hard to believe that a week from now, the surgery will be complete and the healing process will be beginning.

From doctors to Denver to the hospital this morning

2010-01-20T22:16:00.000-06:00

This is a long one.

Time for another update on the life and times of atypical Stage IV cancer survivor. When last I wrote, I was looking forward to meeting with my cardiologist, Dr. C on January 6, and with my lung surgeon Dr. M on January 12. I met with them and I also saw my dermatologist and underwent various procedures including an MRI of my heart.

The consensus was that if I want to live longer than, say the next eight months, that I should undergo open-heart surgery to remove the tumor in my heart, have the upper -half of my right lung removed, and while I am knocked out and lying on the table, also have the large ugly tumor on my right arm removed. My lung and heart surgeons were in agreement that I should go forward with this, and they were convincing. The risk of not doing the heart surgery included a good chance that the tumor in my heart would either break off, creating an embolism, or that it would continue to grow until it made the function of my heart impossible. The doctors told me that they are experts in this sort of surgery and that they believe that doing this surgery could extend my life an unforeseeable amount, but that with the tumors removed from these locations, there would no longer be an immanent threat to my life. (Cancer will always be a threat to my my life, but I digress.)

They scheduled a few more tests for me to undergo on January 20, which was today. One test was an MRI on the tumor on my left forearm, and the other was something that I dreaded from the moment I understood what it was: an angiogram. Let's just say that an angiogram is not a pleasant experience and let you Google "angiogram" if you want to find out more.

In the mean time, my younger sister Julie convinced me to let her fly me out to visit her and her family in Denver for the MLK weekend. I left Minneapolis on a flight to Denver on Friday morning and I was scheduled to return on Tuesday morning.
Denver was fantastic. I needed to get away from the routine here, and the cold. I had a mounting sense of dread before I left for Denver regarding the Angiogram and my eventual big surgery that is now scheduled for January 29. When the plane landed in Denver I decided that I would try to go the weekend without thinking too much about upcoming medical realities.

While in Denver I spent a lot of time with my sister and her little boy Eli. I also enjoyed time with her husband Christian, good friends Laura, Erin, and Theresa. Julie, Christian, Eli and I played it cool on Friday, going for a walk in the park and chilling out for the most part. We ended our night watching "Whip It" on their very wide screen TV. The following day Julie, Christian, Eli, Laura and I had lunch at the Brown Hotel. It was a very elegant affair, and featured the largest and most diverse buffet I have ever had the pleasure of eating from. The choices were amazing and seemingly endless. We were dressed well and felt "fancy." Christian took Eli home when he became fussy and Julie Laura and I lounged at our table, and continued luxuriously eating sushi, fresh berries and other deserts from the extensive desert bar. It was strange knowing that people in Haiti were starving as we decadently lounged and I was struck by the polar contrast in both realities existing at once.

After lunch we walked the streets of Denver for hours, digesting our meals and marveling in the patchesof sun that warmed us as they fell between the buildings at street intersections. The weather was very mild compared to Minnesota. Eventually we came to our destination, Washington Park south of downtown, and we sat down on a park bench with sunshine on our backs. A young man came limping past us. He had clearly been injured at the nearby skate park and was trying to walk without putting weight on one foot. He looked like he was in pain. To my surprise, Laura called out to him, "Hey do you need a cab?" He did not seem to notice and continued on, trying to use his skateboard as a woefully inadequate crutch. After sitting for another minute or so, we got up and followed him. Laura approached him and offered him money for a cab ride home. A short conversation followed and Laura called a cab, gave the young man some money and we continued on. I was struck by her concern and her willingness to give freely to this guy who she had never before met. It made my day.

The following day Julie and I drove into the mountains and went skiing. There is no question in my mind that the Rocky Mountains offer the best skiing in the world. We enjoyed mild temperatures and some sun as we shooshed down the mountain. There were surprisingly few skiers out on the MLK holiday and we sometimes felt that we had the mountain to ourselves. I marveled at the incredible views from the mountainside and thought about the contrast between ski wear and a hospital gown.

After a wonderful home cooked Indian dinner with Julie, Laura, Erin, and Theresa, I flew home on Tuesday morning and went directly from the airport to work at the University, putting in a half-day. As I worked, I thought about the coming day and the scheduled angiogram. "I don't want to do this," I thought silently.

JSP picked me up at the end of the day; we enjoyed a reunion sushi dinner at Koy Sushi. Then we went home and went directly to bed, because I had a very early hospital check-in in the morning.

This brings us to today. After waking crazy early and doing my coffee thing, JSP drove me to the hospital. Before getting out I told him, "I don't want to do this." I checked in at the hospital at 6:40 AM. My angiogram was scheduled first thing in the morning. I got undressed, put on a gown, and laid down on the too-short hospital bed. My mind continued to squirm at the reality that I was going to undergo.

I don't want to do this.

A nurse came in and pit an IV line in my arm; my sense of dread increasing at the the horror to come. The nurse and a resident assured me that I had nothing to worry about; they would keep me awake but partially sedated and "comfortable". Then the resident said, "This procedure is very safe, only 1 in 1000 have a heart attack while undergoing this procedure; it is safer than a knee surgery." This made me wonder about the strange amount of danger associated with knee surgery, but his statement did not make me feel any better about the safety of an angiogram. The time came and they wheeled me into the operating room.

The officiating doctor introduced himself to me and then shockingly he said. "I am not sure if an angiogram is the best thing for you." After explaining that he thought a CT scan of the heart may yield better results and be far less intrusive, he said he would call my heart surgeon and consult him about what to do. "Perhaps we will still do the angiogram," he said, "but let me call Dr. C. and see what is our best course of action."

"I would be very happy not to have an angiogram," I said. "That would be great."

I was wheeled back to my room flabbergasted that the Universe had seemingly granted me a pass on this. I had been Facebooking and Twittering on my iTouch while I waited in the hospital room and many friends had replied that they were thinking of me. I wondered for a moment how it had come to pass that I dodged a bullet. I had a spiritual moment staring at the closed window blinds while I waited for the final verdict. I thanked the universe for sparing me from the heart catheterization.

The doctor returned and confirmed that I would not be doing the angiogram, and that he had scheduled a heart CT scan and had moved up my afternoon MRI of the tumor on my arm. I was ecstatic, but kept my cool.

The heart CT scan went fine, but the MRI of my arm was a terrible experience. Due to the position I had lay in, my arm went completely numb in the first three minutes of the forty minute scan. I was not allowed to move. I voiced my complaints and let the technician know that not only was I terribly uncomfortable, but I was worried about the safety of my arm. She was hesitant to stop the scan and let me move because that would entail redoing the scan. A male technician checked my arm and told me that it was warm and had a strong pulse and that it was probably a pinched nerve. I soldered on and completed the test begrudgingly, continuing to voice my complaints.

When the scan was over the male technician came in and got me out of the machine. I had zero feeling in my arm and when I looked at it and could feel nothing as it slid lifelessly across a pillow with absolutely no sensation coming to my brain I shrieked, "I can't feel anything in my arm." I was on the border of being hysterical, but the technician held me and my arm gently at my side and told me very calmly that sensation would return to my arm in just a few minutes with the increased blood flow. I told him that I had never experienced anything like this. He was really gentle and reassuring, and true to his word the feeling slowly returned to my arm in waves of pins and needles that subsided as he released my arm and I was able to control it again. He had been so kind and intimate with me, keeping me from freaking out, I marveled at how he could be so caring to someone he had never met before. He removed the IV line from my arm and wiped away a drop of blood before bandaging my arm.

I put my clothes back on and walked a cross campus to my office, where I was able to put in most of a full day's work. Life goes on. We go on. My big surgery is coming.

What the future holds

2010-01-10T10:03:00.003-06:00

We have survived a full week of the new year. Twenty-ten is what we are suppose to call it, not two thousand ten (did we ever call the year one thousand nine hundred ninety nine?). In Minneapolis the new year brought harsh cold for a prolonged period of time. December was also colder than normal with plenty of snow. You know it's cold when weather forecasts of 30 degrees excite you.

Two years ago during the holidays, my partner got the official news that his melanoma had returned and it was at deadly stage IV. We spent much time dealing with the initial shock and sadness of the thought of loosing living our lives together. The first year as you might recall from this blog was filled with radiation and IL-2 treatment and the Gerson therapy.

Two years later, I am grateful to continue living in a partnership with my love. According to many publications, a stage IV cancer patient has a very low probability of surviving more than six months.

We continue to manage a modified Gerson therapy, but there have been no radiation or IL-2 treatment during the last year. The time we have together is still tenuous. After two years it might become simple to forget that death is possibly still just around the corner. I can honestly say that a day does not pass that I do not think about it.

Death is something we struggle with and try to avoid, but ultimately it consumes us all. In our situation it is likely to arrive much earlier than either of us want. I want to ignore death, but as I mentioned, it is in my mind frequently. Sometimes more often than others, such as when my partner is coughing up blood, or when he was taking IL-2 treatment.

I am thinking more about death the last month or so. It has been a rough time for my partner from Thanksgiving through Christmas. A nasty lung infection, a result of a tumor in his lung, has been a concern. The lung infection has past, but the tumor remains. Actually the latest images show more than just a tumor in his lung, but also on his heart.

The oncologist has arranged a whole series of further tests and consultations. The idea is that the lung tumor should be removed. The tests and consultations are in the process of determining the severity of the tumor on his heart. The culmination of all of this is likely a major surgery, the opening and spreading of ribs and removal of a portion of his lung and perhaps a portion of his heart.

It is difficult for me picturing my partner going through these procedures. On one hand I know that the cancer in his lung is not going away. It has been attacking his body and his body is attacking it in return. The result is a mass of dead cancer, dead lung and growing melanoma. A perfect breeding ground for more of the infections like he suffered through a month ago. On the other hand, it scares me knowing this surgery will put a lot of pressure on his immune system. An immune system that has been fighting hard for over two years now to help him weed and manage the cancer.

My thoughts return often to death during these times. I try to remain hopeful. I imagine a successful surgery, a rapid recovery and one that does not stimulate the cancer to take advantage of a weakened state. I asked the lung doctor at one of the consultations a few weeks ago about the possibility that removing the lung tumor might precipitate cancerous growth due to his weakened state. The doctor confirmed my worries saying this indeed is a possibility.

We simply are not able to predict the future, only take our best information and make rational and reasoned choices in life. However I will continue to think about death. I hope I am not obsessed. Instead I choose to think of it as keeping perspective. I know the likelihood of a graying relationship with my partner is slim. This hopefully give us many incentives. These include cherishing each other, taking the most from our lives in the present, remembering to not take each other for granted and many things related to living life at its fullest.

It is not easy. I still get sad daily thinking about the funeral, about the emptiness I will feel and about the end of a wonderful life. We get frustrated having to work more time than we get to spend with each other. It would be nice to at least have partner insurance benefits at my work so he could quit his job if necessary and not worry about loosing insurance. But so far my requests of partner benefits have not been warmly received, instead my company cowers behind Minnesota laws which do little to nothing in recognizing that any of us LGBT exist and have families. This reminds me that I will again talk to someone in HR about this and keep needling them at least to let them know I am not going away.

Two years now has been a wonderful extension of this partnership that seemed to be doomed to not last long. Two years more.. who knows? I am grateful for the time. Our lives have been rich and we will strive to keep them that way as long as we can. Thanks to everyone who keeps us in their thoughts and feel free to continue to respond to our blog in the comment section. If I know that people also enjoy my perspective it will motivate me to write more, which is something that I simply neglect all too easily as the months slip by.

More in the unending saga of my cancer treatment

2010-01-03T16:53:00.001-06:00

I feel like all I write about lately is what is going on with my cancer. I guess it is because it feels very present and because I will likely face major surgery in the coming weeks. "Write what you know" was the first lesson I learned in college writing.

I had an additional chest CT scan with contrast on December 22. I walked to the appointment and it took less than an hour. This was done to see the current situation in my lung rather than to rely on the PET/CT scan that was done on December 7. I had a major lung infection at that time.

I meet with a U of M cardiologist on Wednesday, January 6 this week. He will likely tell me what treatment he feels is necessary regarding the tumor on my heart. My best guess is that his assessment will emphasize the importance of remove this tumor as soon as possible. This will likely be done in concert with my lung surgery, and probably will involve opening my chest cavity for full access.

The following week on Tuesday, January 12 I will meet with my lung surgeon again and I believe that he will have a complete team together and a plan in place for moving forward with the partial lung removal and tumor resection from my heart. I am ready for him to say "report to the hospital tomorrow morning at 5:00 AM" or conversely "We could not find an appropriate operating theater until February." Suffice to say that I am ready to roll with the punches, and I don't want to schedule anything in the rest of my life until I know when this surgery is happening.

Anyone reading this who smokes; just stop and think about it. Is that cigarette worth the possibility of having to go through something like what I am going through? Are you just magically immune to the effects of cigarette smoke? Seriously, think about it.

Every time I see you light a cigarette I get silently angry, raging angry, and I wonder why it is that you have your head up so far up your ass.

A Wonderful Winter Solstice and a Happy New Year

2009-12-20T15:02:00.001-06:00

The winter holidays that hold the most meaning for me are Winter Solstice and New Years Eve/Day.

I'll be back at work when winter solstice (also called Yule) starts; technically 11:47 AM on Monday, December 21, 2009. At this moment, winter officially begins for the Northern Hemisphere. Monday night will be the longest night of the year. This signifies a sort of digging in for the winter. I notice that many of my friends become less social and spend more time at home "just keeping warm." Indeed, I find it difficult to motivate myself to brave the cold any more than necessary this time of year, and feel like I go into a sort of social hibernation.

The New Year is a great moment for celebration. In the Netherlands this holiday is called "Oud en Niew" (old and new) and along with eating "oliebollen" (a sort of large donut hole) the Dutch party in the streets with reckless abandon, with the public often shooting off fireworks in the most chaotic ways. I remember saying to myself once that "any New Year's Eve I spend in Amsterdam heralds the end of a really great year." If I could spend New Year's Eve on de Waag this year, I would. (Pascal, Hensen, and Cees, if you are in Amsterdam for Oud en Niew please walk through the Waag for me on New Years Eve.)

Less complaining and some things I left out

2009-12-16T22:15:00.002-06:00

The antibiotics are almost all gone, and the brown stuff from my lung has transitioned from a torrent to a trickle. My lung infection is slowly being brought under control and it no longer hurts to breathe the way it has since late November. I am feeling stronger and look forward to returning to work next week.

JSP and I ponied up the thousands of dollars for the work done on the pipes, and with our checks in the mail, that whole unpleasant affair comes to an end.

I left out two things regarding my recent scans and appointment with Dr. A. regarding the tumor that Dr. E. removed and sent to California. (Re-read that experience in three-parts: Fantasy of the special kit, Pre-surgery report, and Post-surgery report.)

First, I left out that I called the clinical trial at the Hoag Hospital in California and they told me that my cell line was growing but that it was also problematic. She said that what they need is a pure culture of cancer cells. However my cell line is riddled with "fibroblasts" which I believe she said are other cells that came with the tumor cells when they were removed from my arm. She actually said they are like weeds in a garden where they need only cancer cells to grow. I thought this was funny because I use the imagery in my mind that my body is a garden and that my cancer is a weed; here she is telling me my cancer is the garden and that these fibroblasts are weeds.

The take-home-message is that the cell line is growing, but that it might not work out if they can't create a pure cell line free of pesky fibroblasts.

The second thing I left out closely related to the first, is that the site in my left arm where Dr. E. surgically removed the tumor, has been very active in sprouting many new fast-growing tumors. The area below my left elbow looks like a giant misshapen pea pod was implanted under the scar there; each marble-sized pea, a new tumor. These showed up very prominently in my recent PET scan. The new tumors are significant because I have not experienced any new tumor growth near the surface of my body in over a year, and now these little bastards are growing like crazy.

Dr. A. suggested that radiation may be a good treatment option for these tumors, but said that they are definitely a lower priority than my lung and the new tumor on my heart. He left it at that.

I stopped going to my Chinese Medicine guy, Dr. Lu. Perhaps I will return to see him in the spring, once I have adapted to one-and-one-half lungs.

Now we are all caught up. Egg nog anyone?

The water is back on and the brown mucus is flowing

2009-12-12T10:03:00.000-06:00

Life always continues to change doesn't it?

The water guys got the water turned on late Friday afternoon, just under the wire. JSP and I have been able to embrace the amazing joys of running water again.

After three-and-a-half days of taking Dr. A.'s antibiotic there is some major changes happening in my upper right lung, primary of which is that I can't stop coughing up this really foul thick brown mucus, every 10 to 60 seconds, all day and night. I can tell that my body seriously wants to get rid of this, as I can do little more than type a sentence, before I begin coughing and expel a large amount of this foul viscous matter into a plastic container I have to have with me at all times.

I did manage to create a few short periods with little coughing in bed last night, but mostly my routine was lay down for under a minute, sit up and cough some foul stuff into my plastic bedside container, take a sip of water, lay back down, and repeat. This routine made the fewer, short lived minutes where the mucus spigot slowed down, and I managed to slip into a sound sleep really valuable.

It continues as I am awake. I type, cough, spit up ungodly nasty stuff into plastic container, take a sip of water, I continue. I can't believe the volume of this stuff, nor my inability to do anything much beyond just sit here and continue to cough it up.

I believe that going through this is good for me. I believe that getting all this bad stuff out of my system will reduce my fever. I believe that the antibiotics are what is killing this mass of disgustingness flowing from my soon to be removed upper right lung. You can understand though that this is a very tiresome and unpleasant process to live through.

I have lost my voice due to all the coughing. When people call me I do everything I can to help them understand that talking hurts and my whisper is not very comfortable either... then there is more inevitable coughing.

I'm sorry to complain, I am just home on a Saturday morning with a glass or water and a plastic box full of mucus and not much else to do.

The long and the short from Dr. A on my current condition

2009-12-11T12:06:00.003-06:00

I have been quite sick since about November 23. It is now December 11 and I'm still feverish and achy with a seriously painful chest and uncontrolled cough.

JSP and I checked me into the Emergency Room at North Memorial on the 24th because I felt like I was dying (seriously). The Doctor and nurses were convinced that I had influenza because I had several influenza like symptoms and most of the people at emergency rooms were there for influenza. JSP and I tried to make our case that my situation is different, that I have significant tumor growth in the upper lobe of my right long, and that this could be something else, possible pneumonia. They put an IV in my arm tested my urine and kept me there for several hours. They had me take a chest X-ray which showed conclusively that there was a very large mass in my right lung, but at the end of the night the doctor signed INFLUENZA on my file and sent me home with $400 worth of prescription drugs, for drugs I do not take (pain meds) and for symptoms I did not have (nausea). He did send me home with an antibiotic "just in case" called AVELOX.

That night I was happy to get out of the hospital to suffer in my own bed. I took the AVELOX and was completely unable to sleep. Not one wink, all night. The next couple of days I stayed mostly in bed and took more of this antibiotic, as per the label. I was completely unable to sleep for three full days so after an internet search where - sure enough insomnia is one of the possible side effects - I stopped taking the antibiotic. I'd been maintaining fevers in the range of 100.3F to 102.6F also.

After I got off the antibiotic AVELOX, I was able to sleep well again and although fevers remained I no longer felt that I might die at any moment.

Against my better judgment, I went into work on December 2 and got caught up on some work, but I felt terrible all day. I haven't spent much time at work since then.

I had PET and MRI Scans moved to the 7th of December. I went to these appointments knowing that the images they captured would reveal fine detail about what is happening to me.

On Wednesday, December 9, JSP and I went in to meet with my primary oncologist Dr. A. He immediately addressed the situation in my right upper lung. His opinion is that I have been dealing with a massive lung infection, containing necrotic cancer tumors, living cancer tumors, necrotic lung tissue, and bacteria feeding on it all.

I told him that my right upper chest area had been causing me constant pain and causing me to cough frequently and violently.

His suggestion, is that I have the upper half of my right lung removed by surgery. He said this would likely make me feel much better. The fact that I had been athletic in my youth suggests that I can get along on one-and-a-half lungs just fine.

He asked me if I wanted to see the images from the PET scan, so JSP and walked to Dr. A.'s small office and watched images cycle through the depth of my body revealing a very large darkened area in the upper lobe of my right lung. "That's not right," he said.

Dr. A. also showed us how a small tumor appears to have attached itself to the edge of my heart. "We will also have to bring in a cardiologist to deal with this," he said.

We walked back to the examination room, perhaps a bit overwhelmed, but with resolution toward a future plan.

Dr. A. mentioned to me the medical care facilities in the Twin Cities that have the teams of expertise that would be needed for such a surgery and of the options he presented, I choose the University of Minnesota. So it looks like I will be getting this treatment there. I have a meeting scheduled with Dr. M. a lung specialist at the University of Minnesota on December 29 and unless there are further complications, I hope to have this surgery done in early January.

Dr. A. gave me a prescription for another antibiotic and I have been taking this since, to hopefully destroy the bacterial lung infection. I want to feel strong and healthy before any operation goes forward.

I still feel pain in my chest, feverish in the morning, and I still don't have water at my house.

We will make it through this.

No city water can make a sad boy even sadder

2009-12-11T10:40:00.001-06:00

Our home has been disconnected from the Minneapolis water supply since Monday morning, and this is driving me out of my skull into a primitive way of life called "Don't Go There". Right, no running water in the house since Tuesday morning, and guess who has been home sick four days this week in this hydrophobic situation... me.

It all goes back about a month when I realized there was a small amount of water running into the basement from the front wall of the house. JSP called the City and they came out and confirmed that the pipe that was bringing water to the house was leaking and would need to be replaced at a significant cost to us. The city initiated a bid system and advised us to take the low bid. We did and the contractors came out and disconnected us from City water. The contractors appear to be about 25 and 35 and in way over their heads.

From what I understand the contractors used some large circular digging tool in our basement to dig a new path from the basement out to the boulevard where, they would then connect to another pipe that would cross the street and connect it to the city waterline on the other side of the street. I understood we would be be without water from Monday afternoon until they finished, perhaps some time on Tuesday afternoon.

They were not able to finish on Tuesday and said they would return the following day to finish the work.

The following day, Wednesday was a sort of a blizzard day, and seeing as they work primarily outside digging these holes with jackhammers, backhoes and other machinery, it seemed fair that they decided not to work that day.

They returned Thursday and spent most of the day digging, much of the day outside. They made some visits to our basement to perhaps feed pipe, or re-digg a part of their piping plan. Thursday passed and they packed up. Still no water.

It is Friday and the two "contractors" are in front of the house now. One operates a backhoe and the other stands next to a giant pile of earth in the middle of the street.

All I want is the water back on. I'll pay, I'll pay anything. Please, please just connect our house with city water by the end of the day. I don't think I can survive the weekend, on bottled water, no shower, no clean dishes, and rarely flushed toilets.

Time for a holiday party? No, let's go get our brains and bodies scanned instead.

2009-12-03T10:22:00.001-06:00

I'll be missing the holiday parties at work, one happening today and another happening a week from today, in order to spend some quality time with some of the machines and doctors at the hospital. Today I will be catching up with my friends the MRI Brain Imaging Machine and the PET/CT Scan Machine.

In order to prepare to see PET, I have to not have eaten or drank anything in the previous 8 hours. One I arrive at the hospital they take me to this small room completely lined with lead. Once I am seated there, they bring in what appears to be a small bomb, but is really just an injection of radioactive sugars in a big lead box. After introducing the syringe containing the radioactive sugar to my vein, I will be instructed to lay still for about 20 minutes so the sugars will have time to migrate to the parts of my body that are looking to use a bunch of sugar. In addition to my brain and heart, these should include any active tumor sites. Once I am inside the PET scan machine, these will glow brightly with radiation and give the technicians an excellent understanding of which tumors in my body are active and growing.

I am expecting that my upper right lung will be hung like an Xmas tree because I have been feeling lots of pressure and pain coming from this area. In my recent bout with Influenza, I had a very difficult time breathing deeply at all, stemming from the pain in my right lung.

Hopefully my meeting with the MRI machine will be uneventful and my brain will show no signs of new tumor growth. H was pretty lucky to receive the brain radiation therapies when I did, and until now, I have experienced no further tumor growth in my brain. Let's hope that my friend MRI will confirm that today.

Next week I get to skip out on a holiday party to meet with My oncologist, Dr. A. If he confirms my suspicions that the tumor growth has been accelerating in my lung, I will ask him to set up a consultation with a lung specialist, because I can't just surrender my right lung to the weeds. I am not sure if there are any viable treatments for melanoma in the lung, but I want to explore all the options.

In other news on my cancer, I just phoned the Hoag Hospital in California. They are working to grow cell lines from my tumors cells for a clinical trial. The nice woman I spoke to told me that they are still working on my cell lines but they are having trouble with Fibroblasts. She described the situation as Fibroblasts being weeds amongst the tumor cells. They have to remove all the Fibroblasts from the tumor cells, which she described as flowers, in order to get a perfect garden of tumor cells to harvest.

She also mentioned the possibility of going out to California to meet the doctor and become more familiar with the clinical study, possibly in January. An exodus to Southern California in January sounds like a nice break from Minnesota.

Anyway, off to the hospital for my scans.

Pumpkin Custard

2009-11-08T09:59:00.003-06:00

It is the season for baking and holiday foods. One item that I enjoy making this time of year is a pumpkin custard. I have always enjoyed pumpkin pie, but have thought the store bought or home made pies have been lacking flavor. Also I am not a huge fan of crust. So the last few years I have been making pumpkin custards. A pumpkin custard is basically a pumpkin pie without the crust. I also put in more spices to improve the flavor. In response to several favorable comments on my custard I am offering the recipe:

Pumpkin - pie pumpkins work best, but can variety are an acceptable substitute. Open the pumpkin, clean out the seeds. Cook the pumpkin in a 350-400 degree oven until it becomes soft (just like cooking squash), this will take 30-60 minutes depending on the thickness of the pumpkin. Let the pumpkin cool, then spoon out the pumpkin, avoiding the skin. Cook enough pumpkin to have at least 3 cups.

You will need the following items: Eggs, evaporated milk, molasses, honey, maple syrup, cinnamon, clove, ginger (fresh grated is preferred along with powder), and nutmeg. Also custard dishes like the ones below are optimal.
The cooked pumpkin needs to be processed, either by hand, food processor or emulsifier. I have used both of the later and find they work well to make smooth consistency. To 2.5 cups processed pumpkin, add three eggs, 12 oz can evaporated milk, 3 tbs molasses, 3 tbs honey, 2 tbs maple syrup. Mix well here in the processor or with the blender. I usually give the mixture a taste here for sweetness. We both tend to cook with less sweetener, so by all means if you have a sweet tooth feel free to add more of any of the sweetening agents.

Now add the spices. As I mentioned above, I have usually found pumpkin pie to be a bit bland, so I go heavy on the spices. Again here, spice to preference using the basic measurements as a starting point. Add 2 teaspoons cinnamon and one teaspoon nutmeg, clove and ginger. I like to add fresh grated ginger here too, so if you have it on hand, try it out...it really give the custard a kick. I will add 2-3x the spices to my custards, so do not feel shy to try out your own blends to suit your taste.

This recipe will fill 8 of the Anchor custard dishes, maybe with a tad left over. Fill the custard dish right to the top, they generally do not spill over and will settled down a bit after they have cooked and cooled off. Place the custard into a secondary pan which is filled with water. Make sure the pan is deep enough to hold enough water so the custard dishes are surrounded by water to nearly the full height of the dish. This will provide even cooking, just like a cooking a cheesecake! The custards will need to cook approximately 50-60 minutes, at 400 degrees (preheated). The water will take some time to heat up, so keep this in mind. Test the custard with a tooth pick to make sure it has set. Take out of the oven and cool.

The custards are really wonderful when they are still warm, with a scoop of vanilla ice cream or fresh whipped cream. They also are tasty chilled, and will last awhile in the refrigerator. The nice thing about the Anchor custard dishes is they come with plastic covers which allows you to take them to work or give to friends/family.

I am currently working on my third batch of custards today. The pumpkin went in the oven a few minutes ago and I will be mixing up a batch to enjoy this week.

Playing with technology - Google Wave

2009-11-05T16:43:00.008-06:00

I spent several hours this week exploring Google Wave. There is a lot of excitement about it in certain circles, and what users have access to is a very early preview version of the technology. Google is adding functions and changing the interface as accounts are slowly distributed to people who want to try it.

The jury is out on how useful it might be, but it has the possibility of being the Next Big Thing. Many have written in detail about their experiences with Google Wave, so I won't do that here. If you are interested in learning more about this program, search Google for Google Wave.

I also have a few Google Wave invitations, if you are interested leave a comment below. You have to include your email address to receive an invitation.

Wave Fiction is an interesting and unorthodox use of the tool, synced to audio from Quentin Tarantino's Pulp Fiction.
Warning: the clip above contains adult language and gun violence.

Halloween and other things make a happy man

2009-10-31T12:40:00.001-05:00

It is Halloween. Traditionally this has been one of my favorite holidays, and today is shaping up to be another enjoyable one. On Thursday night my friend Connie and I made a pact to do an art night every Thursday during the winter, and we started by working on pencil and oil pastel projects. Last night JSP and I were up late watching silly horror movies with some friends in the neighborhood, and this morning I went in to my not-so spooky acupuncturist and had needles placed in some new locations.We are about to go to a few estate sales. Estate sales can be creepy, but dead people have some great stuff. Later tonight I am psyched to attend the Barebones Halloween Extravaganza.

The nerd in me is really pleased recently. I am excited to try out the new Ubuntu 9.10 Karmic Koala operating system, which my friend Don says is excellent. I have recently installed the new Windows 7 (64 bit version) on one of our home computers, and I am using it right now. It is a bit faster than Vista, but so far I am underwhelmed after hearing hype from Microsoft for the past several months. What has the geek in me really excited is that this morning I received an invitation to use Google Wave. For those of you who are not nerds, this might mean nothing. For those of you who are excited about cutting edge technology like me, I am sure you understand my excitement.

In other news, life in Northeast Minneapolis is been going well. City elections will be held on November 3 using the new ranked choice, also called instant runoff, voting. I am a big fan of this voting method. I look forward to voting in a new way on Tuesday.

JSP was outside this morning, raking copious mounts of fallen leaves from the back yard. The weather continues to be cool and damp, suggesting that winter weather will be here before the calendar date of December 21. My younger sister and her peeps out in Denver got about a foot of snow this past week, which seems crazy early for voluminous snow.

Equality March report

2009-10-17T00:19:00.003-05:00

As some of you may know, there was a March for Equality last weekend in Washington DC. By most accounts it was larger than the teabagger march that happened several weeks ago, but you would never know it considering how little the mainstream media covered it. Despite the lack media coverage, it was well attended and successful. Several men who I consider dear friends attended, and one of them, Bryan Manire, wrote about his experiences at the march. I found his statements moving and asked him if I could share them here. In his words:

To my friends and family,

I just spent 6 days in Washington D.C. visiting many of the monuments and museums; but mainly joining in the National Equality March on Sunday, October 11 with tens of thousands of other supporters of full civil rights for Gay, Lesbian, Bisexual, and Transgendered people. For me it was an experience of empowerment, exhilaration, inspiration, and hopefulness. I’m still angry about being a 1^st class tax payer and a 2^nd class citizen, but the March and the organizing before and after it gives me more hope that Justice will be achieved, and I learned some organizing strategies that I think will help that goal.

As you probably know there was ONE SINGLE DEMAND - Equal protection in all matters governed by civil law in all 50 states. The strategy is to develop Congressional District Action Teams in every congressional district - led by local organizers.

Saturday I attended a workshop sponsored by the Courage Campaign which was formed after Prop. 8 passed in California. We were given a shortened version of the brilliant workshop that they have done all across California. I was very impressed by their smart approach – and I got to shake hands with Cleve Jones, one of the main organizers of the March. Part of their objective is training us to find our unique voice and learn to use our personal story as a vehicle for social change. Their website is www.couragecampaign.org .

On Sunday morning, my friend from Eureka, Dominic, and our hosts, David Mo. and Jiff (from MMF) and another friend, Bobette of Hollywood, got onto the subway in Silver Spring, Maryland for the ride to the Capitol. At each stop more and more folks got on who were obviously going to the March – and the excitement built and built. As we exited the subway station, the air was electric – people and banners and signs everywhere – and voices shouting “What do we want? Equal Rights! When do we want ‘em? Yesterday!!!” it was thrilling, and took me back to the huge march in 1993.

We knew that our friend Dale, from MMF, was there also; and thanks to cell phones were able to connect with him – and meet his partner Dale. Seeing them was a great treat.

As we began our march down the streets of D.C., I started noticing how many very young people there were among the marchers – and they were definitely the loudest chanters and most lively marchers. That’s part of what gives me hope. And I got the impression that these young people were not asking for our rights – they’re demanding that we be treated as equal citizens.

It’s always impressive to march past the White House, and the voices became louder and more impassioned it seemed to me. Yes, we have a President who seems to have a heart, but he is still not doing what he could be doing for our rights. If you watched Obama’s speech to the Human Rights Campaign (check it out on you-tube), you heard some great rhetoric, but little actual action.

At the rally itself, on the west side of the Capitol, we heard many speeches; most of which were excellent. Troy Perry (of MCC church) gave the invocation by invoking the Spirit of many who had gone before us – including Harry Hay, and Bayard Rustin among others. It was very moving.

It was emotional: hearing Judy Shephard speak about losing her son Matthew in a violent hate crime, being reminded about the toll that AIDS has taken on the Gay community, hearing stories of oppression and struggles, singing Somewhere Over The Rainbow with the D.C. Gay Men’s Chorus.

It was inspirational and invigorating: hearing Julian Bond affirming the connection between civil rights for Blacks and for Gays, hearing Dustin Lance Black warmly affirming our equality, hearing Urvashi Vaid (Kate Clinton’s wife) so clearly articulate what the struggle is about and what our strategies are, hearing Cleve Jones and David Mixner be so clear and adamant that equality is ours and will be achieved.

It was empowering: the one single demand is brilliant. No more struggle for piecemeal gains; we’re going for full civil rights, and full equality is NOT a religious issue, as the far right was able to frame it in California. As mentioned earlier, there were many, many young people rallying – AND there were many, many apparently heterosexual young couples there to support their friends and family. Most of the speakers also reiterated that a civil rights struggle is not just about one group; it’s about everyone in this country, and I felt like I was seeing and hearing that play out.

It was clarifying: being there helped take my anger and turn it into a system or format that will be more productive to end what one speaker called Gay Apartheid. By the way, David Mixner read a beautifully supportive letter from Bishop Desmond Tutu at the beginning of the March.

Check out the following websites:
www.equalityacrossamerica.org

www.nationalequalitymarch.com

www.standingonthesideoflove.org

WISHING US ALL PEACE, JOY and the COURAGE and STAMINA to ACT for HUMAN RIGHTS for ALL PEOPLE!

With Love,
Bryan Manire

Some of the signs we saw at the March:

Do I get to vote on your marriage next?

Everyone has a Gay uncle!

I’ve been to my brother’s second wedding. When can he come to my first?

End the harm from religious-based bigotry and prejudice

We hold these truths to be really frickin obvious

Love – it’s not just for procreation anymore

(under a picture of two men) 40 years of commitment, 0 years of marriage, is this equality and justice in America?

Love does not discriminate

Let’s have a summit Mr. President, I’ll bring the beer

"Fierce advocate?” You lie!!!!

Jesus had two daddies, and someday so will my kids!!!

Our ancestors march with us (with a picture of Walt Whitman)

Acceptance means nothing without rights

Love will conquer hate

You can reach Bryan Manire via email at bmanire@cox.net . You may also leave comments on this web site.

Post-surgery report

2009-10-12T13:15:00.002-05:00

It is 1:00 pm and I am already home and satisfied with a bellyful of noodles and sweet peppers left over from yesterday's dinner.

The surgery went quickly without any problems. My doctors and nurses were the epitome of efficient and professional health care providers. I woke up without any pain, my left arm wrapped in a large Ace bandage.

After a quick phone call at about 11:50 am, JSP arrived to pick me up at about 12:15 pm and whisked me home. He then went back to work for the afternoon.

I am snug at home listening to the Current and back on the Internet. The snow continues to fall outside, and I think I am going to go upstairs and take a nap soon.

P.S. There was no octopus in the special kit, just polystyrene and cooling packs.

Pre-surgery report

2009-10-12T09:47:00.004-05:00

This is my first time blogging on my iPod Touch.

OK,a little background on my present moment. I am sitting in a medical gown in a small brightly lit room at Abbot hospital just south of downtown Minneapolis. I arrived here this morning before 7:00 am. I am all gowned up with some sort of hairnet on too.

I sit patiently,grateful for the iPod that lets me listen to Armin van Buren (dance music) and surf the web. Years ago waiting for hours in the hospital would have been unbearably boring. Today however I am chilling out, dancing in my hospital bed and writing to you, my readers. Sometimes technology is undeniably cool.

So in a few minutes the nurse will return and plant an IV in my arm. Then will come the anesthesiologist. Finally my surgeon, Dr E. Will come in and draw on my arm with a sharpie, marking the area for incision. Shortly after that I will be rendered unconscious and the removal of the tumor in my arm will commence.

What a fun morning I have to look forward to.

Fantasy of the special kit

2009-10-09T13:13:00.011-05:00

The kit has arrived. It is safely tucked in the refrigerator. I'll be looking after it until Monday morning.

"What kit?" you ask.

Why the special box kit that will be used to transport the tumor they are slicing out of my arm during my Monday morning surgery and sending to the clinical trial in California. That kit.

The special kit is mysterious. It must be kept refrigerated at all times. I have neither opened the cardboard shipping box that the kit is packed in, nor have I laid eyes on the contents, yet. I fantasize about the special kit and what is inside.

Opening the kit I see some sort of cold incubation apparatus that is designed to keep the cancer alive outside the hospitable environment of my body. I close my eyes and see a sort of purplish translucent octopus host creature inside that will cuddle and embrace the tumor, keeping it at just the right temperature during it's voyage to California on a Fed Ex airplane. The octopus creature will cuddle and protect the freshly removed tumor, and will purr to the tumor, "its alright, we are just taking a short trip. Daddy will keep you safe."

The octopus creature will release the tumor only once the doctors in California have entered a cryptic password into the armored metallic Fed Ex box. This box will then transform into a dainty but dangerous robot named "Shadow Dancer".

The octopus creature, now exposed to the air, will release it's grasp of the tumor and open it's tendrils to the doctors, who greedily remove the tumor. The octopus creature is swiftly swept off the table and into a polystyrene cooler, which is taken directly to the nearest high end sushi restaurant in Newport Beach, where it is promptly processed into Tako Sushi. It is served to one of the Real Housewives of Orange County who is dining there with her pool boy.

Back at the hospital the clinical trial doctors mercilessly use scalpels to process the still living tumor into various samples; Some are genetically analyzed, some are placed in a cryogenic tissue bank, and others begin cell lines that will be treated with retroviruses and dark matter to eventually become a powerful vaccine.

Months from now, I will get an injection of this vaccine, made partially from my own cancer. My body will writhe in momentary agony and my veins will pulsate with the metabolic magic of this vaccine as it enters my body, changing me forever.

Moments later, I become Spiderman.

At least this is what I hope will happen.

This and that, against a backdrop of gold curtains

2009-10-01T00:36:00.003-05:00

There are always so many things to write about and so many things to draw one's attention away from writing.

Two of our very good friends welcomed their new son into the world tonight. Don and Sarah I am certain that you will be excellent parents.

On a separate note, two of my other very good friends have tonight returned to the Midwest after spending several years away. Melanie and Tim welcome back. I hope that your pregnancy goes as well as Don and Sarah's.

Tomorrow I go to consult with my plastic surgeon, Dr. E. He won't be Botoxing my forehead or fixing my nose. Instead on October 12, he will cut a tumor out of my left forearm. Not quite Nip/Tuck sexy, more Grey's Anatomy drama minus McDreamy and McSteamy.

The tumor will be sent to a hospital in Orange County, California, where someone other than The Real Housewives of Orange County will grow a cell line from it, eventually altering and mixing those cells with bio reactant immune boosting chemicals somehow resulting in a vaccine that will be injected back into me. At least that is how I understand it.

I am a little apprehensive about the surgery for two reasons. First of all, the tumor is not an easy little lump. Rather it is this flattened snaky thing in my forearm that feels to me like it has tendrils that intertwine with the muscles and tendons that control the fingers of my left hand. I am worried that there may be nerve damage or another complication that could leave my left hand with reduced functionality or sensation.

Secondly, the letter that Dr. E.'s office sent to me suggests that I will not be under general anesthetics when the procedure is done. The idea that I might see my own flesh opened up and flayed like a piece of fish is truly horrible to me.

I know that worrying is unproductive and creates unnecessary stress, so I have decided to ~~try to~~ let it go. On the positive side, I might have to take a break from the rapidly chilling Minnesota autumn weather and fly to sunny Newport Beach, California to meet with a doctor there who is the P.I. of this clinical trial.

Around the house, JSP and I have recently purchased several new things. First I purchased a big beautiful desk. I felt like I needed a place in the house to be productive. Up until we had the desk I had been doing most of my writing from (no joke) the bathroom floor.

Once we had the desk, JSP decided that he wanted a new computer, not just to bedeck the new desk, but also to take with him to some upcoming scientific conferences that he will be attending. The laptop does look swell on the new desk though.

After spending time on the new computer, at the new desk, being productive into the wee hours of the morning, I realized that although we have been living in the house for over three years now, we have never bothered to put curtains on several of the first floor windows, despite the fact that we like to walk around in our undershorts... or less. It seemed that the prudent thing to do was to go shopping for some window treatments that would spare the neighbors and other passer-byes the eyeful that they might get now that it is getting dark outside so much earlier.

Our foray into the world of JC Penny window dressing seemed overwhelming at first. We tried to tackle this unknown world years ago when we first moved in to the house, but pushed aside the task of finding curtains after the seemingly monumental task of finding furniture that we liked that did not cost 1/3 the price of our house. We returned to the task of window dressing three years later, that is, last week. Wandering around the fore-mentioned JC Penny curtain department, we got serious. We picked out rods, brackets, rings and eventually gold curtains with copper colored valences. Years ago I would have banished the thought of this activity, but here we were, men on a mission to save our neighbors from the horrors of watching our unclothed middle-aged (but still good looking) bodies walking in front of uncovered windows.

We made our purchase while listening to a conversation in Dutch that was happening at the next kiosk over. An old Dutch couple was conversing with a sales woman in Dutch! At JC Penny! In the Curtain Department! Somehow it was very exciting despite the fact that they were just talking about curtains and how much they cost and how frequently they wash their windows. After saying hello in our American accented Groninger Dutch and surprising the Dutch natives, we were rung up.

When we got home I had a bite to eat and then we began the difficult task of getting the curtain rods out of their plastic prisons from hell. Eventually we managed to hang the brackets and rods, the rings, curtains and valences and we stepped back to look at our work.

The first word that came to my mind while looking at the gold metallic curtains under copper valences against bold blue walls... was "shiny" the second word was "chintzy." It appeared that draq queens or Saudi Princes might step from behind those curtains at any moment. After all our work we both suffered from a feeling of defeat, as if we had just signed our home over to one of those "home decorating on a budget" shows where a team of ambitious college students turns a perfectly respectable home into something that looks like it is made of cardboard and glitter glue. Oh, and gold fabric, lots and lots of gold fabric.

We went to bed, certain that we would return the curtains to the store the following day. A funny thing happened though. The curtains looked better to us by daylight. Then the next evening, they looked better to us at night. The following night we moved most of our plants back in front of the windows, and the gold curtains looked oddly appropriate behind our regal assortment of houseplants. Suffice to say we are keeping the curtains. If drag queens do pop out from behind them someday, we will just sit back and enjoy the show.

Look who moved into the neighborhood

2009-09-20T01:19:00.005-05:00

I enjoyed reading Buddhist texts in college; Buddhist philosophy is logical and centers on creating peace and preventing suffering.

On my drive home from acupuncture this morning, I was almost home when I passed by some signs with arrows that looked like garage sale signs, but said, "Buddhist Relic Tour."

"That looks interesting," I thought and I followed. The signs led me to what had recently been a small church for sale in the neighborhood. The building had been transformed into a Buddhist temple and monastery.

I drove by this beautiful sight and then turned and went home. I thought I would like to bring JSP with me to see the Buddhist temple and relics.

Several hours later we walked the seven blocks together to the temple and monastery. As we approached the entrance we removed our shoes and went in.

The temple is beautiful. A large golden statue of the Maitreya Buddha is positioned in the center of a large alter in the center of the sanctuary. Fruit and other offerings are positioned around the seated Buddha. Around the outside of the alter are transparent boxes containing collections of things that appear to be pebbles or small beads. These are the relics. Behind each relic or group of relics, is a card the size of a playing card depicting a Buddha or lama that was the origin of the relic.

I spent some time slowly walking around the alter, examining the altar space and the objects on it. Later I received a blessing from one of the saffron robed monks. After quietly chatting with people involved with the temple and watching a short DVD about the relic tour, I went outside into the beautiful afternoon air. The weather in Minneapolis was beautiful, and I basked in the late afternoon sunshine. I knew that this was one of the final days of summer. I felt great pleasure with each breath, drinking deeply the sensations life.

See Heart Shrine Relic Tour for more about the relics.
See Gyuto Wheel of Dharma Monastery for more about the temple.

JB's health check in

2009-09-12T23:05:00.015-05:00

I'm taking a few minutes to check in regarding my cancer.

On Wednesday of this past week, JSP and I went to see my primary oncologist, Dr. A. The last time that I had seen him was in April 2009. (I've seen other doctors since then.)

In April, he recommended that I go on daily luekine injections. I choose not to take his advice and had not seen him since then. I felt slightly sheepish about letting so much time elapse since talking with him. I told him that I was sorry not to have come in over the summer but that for the most part I had been feeling really well and didn't see the need to check in with him. He told me there was nothing to apologize for and that he was delighted that I continued to feel strong and healthy.

We spoke about why I had decided not to take his advice in April. I told him that the reason I didn't follow his advice was threefold, one I was feeling fine, two the studies suggested that only about six percent of patients showed positive responses to luekine, and thirdly I hate syringes and I felt that my quality of life would be greatly reduced by having to poke myself with a needle every day.

Inconsistency? I sought out acupuncture. (Those needles feel good and don't hit my veins.)

Dr. A. seemed to think that I might have made the correct decision in terms of not taking the daily luekine injections. He said that I looked well. After measuring the tumor on my arm he said he thought it was either the same size or slightly larger than when he examined me in April, but it was inconclusive because the tumor is flat and difficult to measure.

JSP inquired with Dr. A. about any new clinical trials that might have opened up over the summer. Dr. A. said that since I had been rejected because of my brain metastases from several studies the last time he submitted my participation in these clinical trials, he had not been pursuing this further. JSP told Dr. A. of a study he had read about that showed promise at Mayo Clinic. Dr. A. said he was not familiar with that particular study but that he would be happy to read up on it, if JSP would send him a link to the study results.

I asked about the possibility of having the tumor in my arm removed, it causes me mental and physical discomfort, and is my only tumor on or near the surface of my body. I stated that I would like to have it removed, but not if there were a strong chance of this causing nerve damage in my hand.

After initially rejecting the idea, Dr. A. suggested that there might be an option to remove the tumor and send it to California where a team of scientists could craft the tumor and the accompanying lymphocytes into an experimental vaccine that would be specifically tailored to me with the intention of keying my immune system into fighting the cancer cells more acutely. He said he would look into this possibility if I would call to remind him to in the following week.

He asked me when I would like to come back and see him next and I said, "Three months sounds good." When we looked at logical future time lines it seemed to make sense to go in for another PET/CT scan and MRI during the first week of December and then to meet with him and discuss the results a week later.

That was the doctor appointment, but how am I really doing? Like I told my doctor, in general I am feel good and remain optimistic about being a long-term cancer survivor. I have had some issues with my lungs over the summer, including coughing up bloody mucus and a second tumor. The lung issue has lessened in the past few weeks, perhaps due to the Chinese Medicine that my acupuncture/herbalist, Dr. Lu, has directed at this issue, or perhaps because whatever was causing this ran its course.

JSP and I are also continuing to follow our modified version of the Gerson Therapy, including four cups daily of freshly made juices, a modified vegetarian diet (low salt, no refined sugar, minimal oils and alcohol), and my favorite charming twice-daily coffee enemas.

Moving on, my friend Theresa wrote me earlier today:

...IF you know your health is failing, let me know because like with my grandfather I'd much rather come and see you while you're still alive instead of coming for a funeral even if it's in a hospital and there's only an hour or two of time available. I'm sorry for having to ask something so dark, but you really have been an important friend in my life so it would mean a lot to me. When I tell people about you, I always call you the most cheerful person I know and that you've always embraced life.

It was great to read her kind, authentic words. I wrote her back telling her that I am well and promising that I would definitely let her know if I take a turn for the worse.

I'll let you all know too.

Finally, I would appreciate it dear reader, if you might consider leaving a comment here. It feels good to have feedback and confirms that people read the words posted here.

Donkey skin... What?!?

2009-09-12T15:24:00.008-05:00

As I wrote at the end of August, I visit a traditional Chinese acupuncturist/herbalist, Dr. Yu. I went in for my weekly acupuncture treatment today. Dr. Yu and I talked a bit about the herbs that he has been giving me, specifically about the small bricks of a substance that looked like chocolate. He nonchalantly said they were made from donkey skin.

"Donkey skin? Like skin from donkeys?" I asked, thinking that I may have misunderstood him.

"Yes," he said, "very ancient herb made from donkey skin."

"Oh, donkey skin," I said, nodding my head as if it were the most normal thing to drink tea made from the skin of a donkey.

After the appointment I came home and brewed up some donkey skin tea. It tasted worse than I remembered and felt slightly gooey in my mouth like a very diluted marshmallow, but without the sweetness and with something extra, something hard to describe exactly. It was the fragrant taste of donkey skin.

E Jiao
Ass-Hide, Glue
Properties: SWEET - NEUTRAL
Dosage: 3-15g.
Meridian: LIVER, LUNG, KIDNEY
-tonify blood
-blood deficiency
-stops bleeding
-nourish/ moisten Yin
-dry lung
-consumption (xiao ke)

Minnesota State Fair time

2009-08-30T09:13:00.005-05:00

The Minnesota State Fair is underway which typically indicates that our summer is wrapping up. This weekend feels like fall; It is 45 degrees Fahrenheit now and probably will peak in the 60s today. Summer was mild. We only had a handful of storms and temperatures rarely went over 90 degrees.

Minneapolis is one of the best places to spend summer. This year has been good, especially for those who dislike the humid sultry days. I hope we have a slow progression to winter. My optimal scenario includes no frost until late October and no snow until just before Christmas. I am optimistic that since the summer was not hot, that perhaps the winter will not be bitterly cold.

Our garden continues productively. I made up a batch of tomato creme soup yesterday evening which was spiced with basil, cumin, curry, rosemary and pepper. We also had fresh sandwiches with tomatoes, basil, peppers and brie cheese. If the weather had been hotter, the tomatoes and peppers would have been even more prolific, but we are happy with the overall yields.

This summer JB received a large bag of garlic bulbs from his garlic-farming friend Genda in Kansas. This morning, I planted about one hundred garlic cloves in our garden. I hope to have a delicious crop of garlic next year. Fall is a good time to plant garlic. This is my first time planting it. From what I have read, the cloves will send up a shoot and establish roots before the freeze. Then I will put mulch and leaves over them to protect them from the cold. Next spring we should get garlic scapes, flowering buds that you cut off before they bloom. These are a culinary delight with a mild garlic flavor.

Later this week, we will to go to the Minnesota State Fair. Friends and family have expressed interest in going with us; we simply need to get our butts in gear to organize a trip. We did not go last year. Two years ago was the last visit and it is usually enjoyable to wander around, people watch and see farm animals. I am not a big fair foodie. Most fair food is fatty, not organic or healthy. Several things are very tasty, but I may have to break some of my dietary rules and eat something grease soaked.

Chinese medicine and acupuncture

2009-08-29T22:08:00.015-05:00

I have started a new tack in terms of working with my body to keep my cancer in check. Two weeks ago I went to my first session with Yubin Lu M.D. (China), Ph.D. of the TCM Health Center. I had my second session today.

My curiosity about acupuncture and Chinese medicine date back to high school. During my junior year, a classmate of mine told me she was suffering from a persistent ear infection. She told me that on that morning, her mother had dragged her to an acupuncture session where a practitioner pushed small seeds into her ears and head. She showed me her ears and sure enough, there were what appear to be sesame seeds embedded in her ears. I remember looking at her ears and shaking my head in disbelief, "Now that is just too freaky." Then a question, "I wonder if it works?"

Her eyes narrowing she replied quietly, "It hurt like hell and I forgot all about my ear infection."

Fast forward about 18 years to June 2009. I was having coffee with my friend Justin and he started telling me about his problems with his skin and how after western medicine seemed to fail him, he gave acupuncture and Chinese herbalism a try and it made a big difference to his skin. I asked him how he found the acupuncturist/herbalist and he gave me his doctor's card.

I looked up his doctor's website and saw that there was a network of Chinese medicine practitioners in the Twin Cities. I read each person's bio and decided which practitioner best seemed to meet my needs. After procrastinating about making an appointment for a few weeks, I called the clinic in Roseville and made an appointment.

I was pretty relaxed going to my first appointment. I didn't know what to expect, but I knew that if I didn't like it I could get up and walk away.

After checking in with the person at the front desk and providing my insurance information, I filled out a sheet about why I had come in. I wrote that I had had been coughing up bloody mucus a lot this summer, and that I had some pain in my arm and torso caused by tumors. I also wrote that I was very curious about what Chinese medicine might have to offer a stage IV Melanoma ~~patient~~ survivor. Then I sat and waited, fiddling with my new iTouch, which I love.

Dr. Lu called me to his office. We had a nice chat about my persistent unproductive cough that later turned into a bloody mucus producing cough. I told him about coughing up the first tumor last year and the more recent tumor I had coughed up in late July of this year. I acknowledged that I did not expect him to cure my cancer, but that I wanted to know what Chinese medicine might have to offer me. He told me that cancer is difficult to treat, but that he could help with pain and perhaps stop my lungs from producing so much bloody mucus. He also said that he had herbs that might, given enough time, help boost my immune system and strengthen my body while weakening the cancer. I told him that this was very agreeable to me and that I would like his help. After exchanging smiles and nods for a while he stood up and asked me to follow him to the treatment room.

As he walked in front of me, he said casually over his shoulder, "Now is time for needles."

The treatment rooms at the clinic were comfortable and sanitary, but not in an overly antiseptic way. The bed I was to lay down on was covered in medical-grade paper; Wall hangings depicting bamboo and soothing Chinese music piped in set created an atmosphere for me that was comfortable, more like a place I might get a massage than an operating room.

I was wearing short pants,a t-shirt, socks and shoes. Dr. Lu asked me to remove my socks and shoes and to lay down on the bed as he stepped out for a moment. I did so and he returned shortly.

He told me that he would not be using very many needles as it was my first time having acupuncture. He asked me to relax and to remain still. Then he popped a needle into the top of my head. It was a little sting, but not bad. I looked at the ceiling as he slowly walked around me placing needles with a light tweak of his thumb into my arms, hands, legs, and feet. As he went from point to point, he asked me if the needles hurt and I told him, "just a little." I had heard how acupuncture does not really hurt, but I was still quite surprised at how little pain the needles created as they entered my skin.

When he had finished placing about 18 or 19 needles he said I should remain relaxed and motionless for about 20 minutes. He turned the lights down and left the room. I continued staring at the ceiling.

I'm not sure what I expected, but I felt comfortable and the music was calming.

Some time later he returned and efficiently removed all the needles. He told me to take my time leaving, but to be sure to talk to the person at the front desk who had bags of herbs for me and some bricks of herbs too.

Replacing my socks and shoes on my feet, I went out and sat down at the front desk. The attendant there gave me three paper bags, a piece of paper, and two small bricks of a substance that looked like chocolate.

After instructing me on the proper way to decoct the herbs and how much and how often to drink the decoction, the attendant helped me make several more appointments with Dr. Yu and then sent me on my way.

The tea/deoction that I made that day was pretty yucky, but not quite revolting. Two weeks later I've almost gotten used to it.

Today at my appointment I went through a similar process. I came home this afternoon feeling pretty good. My eyes narrowed when I saw JSP. "I want more needles, lots and lots of needles"

Garden in its prime

2009-08-19T20:14:00.006-05:00

We were blessed by the rain gods today, with over two inches of rain. A tornado even touched down in downtown Minneapolis this afternoon. Thankfully no one was hurt, just some structural damage. After a mostly dry summer, I am happy that the rain is starting to return. In time to push along the garden during the last months of this season.

Right now we are really getting a lot of produce. The picture shows just what I harvested this afternoon. We have almost a dozen different types of tomatoes, 5 cherry types, and several slicers along with romas. They all are slightly different in taste, some more sweet and some more acidic. We also have a variety of peppers. None of them are particularly hot ones this year, but good for eating raw or in stir fry.

I whipped up a stir fry this evening from some of the produce and spiced it with Chinese 5 spice, some sesame oil and some cashews.

There are a few eggplants to harvest, which is one of the few items that we have not yet harvested from the garden. Oh, strike that, we have some carrots too that will soon be ready to pull from the ground.

Garden things

2009-08-09T19:09:00.003-05:00

While my special man was out of town visiting friends and seeing a performance in Madison, I was busy making fun things from the garden. The garden is doing very well these days and I am usually enthusiastic about making the best of it. The tomatoes are ripening, and we have lots of cherry tomatoes and some slicers too. The basil and mint patch was going gang busters, so I did my best to harvest and process them.

Yesterday I took out the Norwalk juicer and juiced about two grocery bags full of mint I cut from the garden. I ended up with about two quarts of mint juice which is extra powerful. I made two trays of mint juice ice cubes and the rest I made into mint extract. Basically the mint extract is 50:50 mint juice:vodka. The juice and vodka mixed and some precipitation formed. I took it to the lab and filtered it out and got a transparent golden brown alcohol. It is very minty and now the question is what to do with it. I imagine it would be very nice ice chilled as an after dinner digestif.

Today I trimmed down the basil plants in the garden and made about two quarts of basil pesto. It is a simple recipe and I use the food processor to blend garlic, walnuts, sunflower oil (from our CSA), parmesan, lemon balm and basil. Pesto is great mixed with pasta, or used as a spread for crusty bread or crackers.

The apple tree in our backyard is dropping apples like crazy now. I collected a bag of them over a week ago and used our other juicer to make about a gallon of apple juice. I put the juice in the refrigerator and in less than a week is should be cider. Since then I have collected another four grocery bags full of apples. The juicer we have is good for daily use making a few glasses, but it would take half a day to juice all the apples we have so far (and there are probably over half left on the tree still!). I am looking for an apple press to squeeze the juice out of large quantities, in the hopes of getting many gallons to freeze.

We continue to get a weekly box of vegetables from the CSA. It has been nice to get some items we are not growing in the garden, such as summer squash, arugala, lettuce, garlic and onions. Keeping up with all the fresh produce is going to be a bigger challenge as the garden continues to grow.

Is Obama an American?

2009-08-09T17:35:00.005-05:00

YES!!!!

Dang it is hard to stomach what passes for news these days. Calling it news is being generous, I would call it pre-meditated disinformation. Sure, they will say they are trying to cover both sides of the story. One side is reality in which Barack Obama was born in Hawaii and is an American. The other side, well what can I say about the other side and still be respectful, says Obama was not born in the USA, and thus is not eligible to be president. Would you believe that over 50% of Republicans are either unsure if Obama was born in the USA or say is was not born here. Sadly I know some people in my family that fall into that catagory.

Along with the birther conspiracy, there are the teabaggers and the growing legion who oppose Obama's health care proposals. More disinformation being shoveled to folks making them fearful of government and our black president. What is there to be afraid of I wonder? Well, apparently the health care bills being formulated (not really even more than a vague outline) are going to send grandma and grandpa to early death. Also, anyone with disabled children, they get the axe too. That is what socialized medicine is all about right? Ever been to Europe and seen those piles of rotting grandparents and disabled children culled from society by their socialized medicine?

The disconnect is stunning in stupidity. On the news of rallies against health care reform were people screaming "Keep government's hands off my medicare". Other examples include the screams of socialism, socialism, socialism. Newsflash folks, Medicare, Medicade and the VA hospitals are all forms of socialized medicine that go back generations.

It seems the question is do we want government making our health care decisions? I wonder...as opposed to the for-profit insurance companies as is the current situation. The right wing has got a bunch of folks all worked up over this issue, so much so that they are fighting against health care reform that will likely vastly improve the health care system for the majority of them. Unfortunately many of us are too easily swayed by the politics of fear and mistrust of government. Seems like the right wing has been successful these past years complaining about how poorly our government functions, when in fact they have been the ones poorly running it.

Now we got some folks in power who are trying to make some changes. Trying to right the economy, trying to get out of two wars, trying to help the 30-50 million people without health insurance, trying to tackle energy, conservation and climate change. I am going to boldly say that the bulk of these problems they want to correct are because of Republican mal-governance. None of these issues are going away, and I also will boldly say that I am uncertain the Democrats have the best possible cures for the problems. But give them a chance. What is it, like 6 months that Obama has been president? How soon the right wing is calling for his head, comparing him to Hitler and nazis, predicting the demise of the USA and calling for basically armed revolt?

I try to reassure myself that much of this flack is from a tiny minority of people, frustrated they lost the last election, frustrated they are not being heard and fearful of our President. However the symbiosis of the conservative movement, the corporate media and influential lobbying groups (military-industrial, insurance, Wall Street etc.) is frightening. There is a whole network that basically takes Republican talking points and puts them on as actual news. Most of AM radio is Conservative pundits preaching the evils of Liberalism. In the wake of so much disinformation and right wing propaganda, it is no wonder so many fall victim to the siren songs.

Another worry I have is the complacency of the majority who enthusiastically supported and voted for Obama. We all shared joy and tears experiencing the historic events of the last year. But are we falling idle, over confident in the skills of the new administration? Do we forget the opposition and their will to maintain power? I believe the signs point to both, and the events stirred up by the well orchestrated Conservative movement suggest they are not going anywhere quietly. Unfazed by losing the last two elections by wide margins, the right wing appears to be mobilizing to use any means to regain power, including mob rule, violence and intimidation.

So what is the take home message? I guess one message is better educate ourselves, our friends and family. Do some fact checking, dis-spell myths/lies, and make our own opinions (Try not to let Rush make your opinions for you). Another message is not to underestimate the will of the right wing. We won the elections lately but that does not mean they will give up. Hope is still abundant within me and I hope to overcome some of this insanity.

Playing by their rules

2009-07-18T06:35:00.002-05:00

I have been casually following the confirmation hearings for Sonya Sotomayor. If you do not know this story already, here is an introduction. Several months ago, supreme court justice David Souter announced his retirement, thus prompting President Obama to make his first nomination to the supreme court.

Obama selected Sonya Sotomayor. Sotomayor, if confirmed, would be the first Hispanic and third woman to serve as supreme court justice. She appears to have a solid background, graduating second in her class from Princeton, and obtained a law degree from Yale. She went on to serve as an assistant district attorney and eventually a Federal district judge. In 1997 she was named to the U.S. Court of Appeals for the Second Circuit. Over the last ten years as a circuit court judge, she has heard more than 3000 cases and made over 380 written opinions. From this body of work, she has been proclaimed a centrist by many notable law organizations. (note: this intro comes from wikipedia, and much more information can be found there regarding Sonya Sotomayor).

My interest in this story comes from the reactions and actions of the opposition party in the nomination process. The usual suspects including Rush Limbaugh, Hannity and most of Fox news have tagged Sotomayor as ultra liberal, unqualified and even racist. These sentiments, albeit somewhat less apoplectic, have been expressed by members of the Republican party. Notable among these Republicans is ranking senate judiciary committee member Jeff Sessions.

Sen. Sessions has made the most noise during the nomination process. He has clearly expressed his view that Sotomayor is not getting his vote, she is in his opinion not fit for the supreme court. One of Sotomayor's statements during an address to students has prompted the bulk of Sessions ire: "I would hope that a wise Latina woman with the richness of her experiences would more often than not reach a better conclusion than a white male who hasn't lived that life."

Sotomayor has commented on her statement, saying her choice of words was poor, but the message in the full context of her speech remains valid. She considers herself to be the product of a system which uplifts everyone. She considers that Americans have diverse backgrounds and experiences from which to draw upon and excel. And in my opinion, when you look at the history of the supreme court in which of the 110 members, 108 have been white men, it can benefit from some diversity.

However, the republican party seems to have some serious problems with white men loosing grip on their long entrenched status. Their goal in the nomination process has been to smear Sotomayor and cry fowl over the lack of consideration for white men in the process. I find it apparent their goal is to cater to a group of Americans who would agree that white men no longer are given a fair shake in the process of running the country. That preference is given first to minorities and women, and white men are always considered last.

There is nothing to suggest that white men are loosing their grip on control of this country. There is also nothing wrong with giving opportunity based on merit, regardless of ones race, gender or demographic. But the fact that our country is gradually becoming more diverse would argue that white men would slowly be less represented in positions of power and authority. However this indeed is not what one sees. The senate, and most of our representatives are still white men. White men still predominate in power positions in industry and academia.

Thus the whole nomination process and the grumblings of the likes of Sen. Jeff Sessions are what truly are frustrating to me. Sen. Sessions spend much of his time berating Sotomayor over her one statement saying a wise latina woman would reach a better conclusion than a white man. He (and the republicans like him) seem indignant of the remarks that white men might actually not always be the best at everything. It speaks so much of the entrenchment of white male dominance of our society, that any infringement upon their power is met with this level of blowback.

And further, during this whole process Sotomayor has played within the rules set by the white male establishment. She did not react aggressively to Sen. Sessions grilling. She remained calm and measured. Her answers were conciliatory. She promised to perform as a supreme court judge in an unbias manor using the rule of law established in the constitution. And as mentioned above, her record proves her to be a centrist rather than an ultra liberal activist.

I applaud Sotomayor and her achievements. I believe she will make a fine supreme court justice. On the other hand I find the behavior of many Republicans poor and offensive. They have displayed their bigotry and childlike school yard bully behavior once again. America is a diverse nation and this diversity should be represented in all of its establishments. There are qualified people in this nation of all diversity. To say that any time a white male is not being considered is reverse discrimination is false.

I hope that playing to the fears and catering to the bigots of our nation will not be a winning strategy for the Republicans. In the near future, whites will no longer be a majority of the American population. That means by approximately 2050, white people will represent less than 50% of our nation. Should we fear that? Does this mean white people will be rounded up and stripped of all their rights? Of course not. I simply means that we will have to accept that more of our peers, our supervisors, our leaders will not look exactly like us. I think we can deal with that.

A fresh look

2009-07-10T16:41:00.003-05:00

It was time for a change, time to step into the present and update the look of bothofus.org .

It is summertime and we are enjoying the bounty of nature. I think the new appearance of this web site, when fully functional, will reflect that feel.

For a peek at what this web site looked like a few years ago, see the post from March 13, 2006: Refreshing our look.

(July 13, 2009 Edit- I am still working on getting the new template to work right.)

(July 14, 2009 Edit- I think everything is working right.)

Enjoying oblivion

2009-07-07T16:39:00.008-05:00

My cancer has brought the eventuality of death forward on some level. I think about the people that I have known that are now gone, and of people I did not know, but left some legacy of their passing. Authors and filmmakers come to mind, and images of actors immortalized on the screen live on long after the actors have slipped from this mortal coil.

I think one's legacy is an idea that most often concerns those in their twilight years. Some wealthy people leave endowments to the arts or a university. Parents of course leave their children in the world, a living legacy of sorts.

Unless one is Caesar, Joan of Arc, Shakespeare or someone else of such stature, a few years after we pass out of this world, most if not all trace of our passing is lost to the sands of time. It is an interesting proposition. Our lives seem so important while we are living them, but after folks die, the world keeps churning right past them.

Perhaps that is why when a popular icon dies, like Michael Jackson, people are reminded of the impermanence of life, and wonder about what people will say about them when they pass.

It is gratifying how little any of this matters, and how in the light of oblivion, the most logical thing to do is to simply enjoy your life.

More images from the garden

2009-07-07T14:20:00.006-05:00

JSP & JB's garden, July, 2009

As JSP wrote a week or so ago, our garden is growing incredibly. I snapped some more photos. To see them, click on the image at right.

Firefox 3.5 is out, get it now

2009-06-30T16:39:00.004-05:00

Most people don't know this about me, but I follow the development of the Firefox browser very closely. I install the newest development build pretty much every day on my computer. I have been watching the development of their new Firefox 3.5 browser and it is really great. I advise you to download it and install it now. You may not notice the changes right away, but it is a great piece of software that will prepare your computer for the future of the web.

Firefox 3.5 has three key points going for it.

Firefox is the safest way to use the Internet.
Firefox has the most ways to customize your online experience specifically for the way you use the web.
Firefox is good for you: it stands for openness, innovation and freedom on the Internet.

Sorry for this commercial, but honestly the new Firefox is great.

As the garden grows

2009-06-27T16:28:00.006-05:00

I have been meaning to snap a few pictures of the garden and plants we have in the yard for some time. Finally had a bit of motivation to get out there because it all looks so vibrant.

First is the front yard. Last year we had a friend landscape the front and we put in blueberry, current and gooseberry bushes, along with several echinacea. Everything has grown very well in the last one and half season. The echinacea is blooming and teaming with bees, and the blueberries are loaded with growing fruit.

On the side of they house we have a hollyhock that we put in last year and over wintered. It is nearly 6 feet tall already and has an open bloom. In the background are blooming day lilies.

The vegetable garden in the back is thriving with the recent hot and humid weather. We have been harvesting spinach, broccoli, mustard greens, snow peas and picking herbs including fennel, basil, oregano, tarragon, sorrel, mint and rosemary.

The peas have grown very well, reaching nearly 4 feet tall. I expect with the hot weather they might start withering as they usually do.

We look forward to peppers, tomatoes, cauliflower, beans and eggplant in the upcoming months.

You might also notice some of the invaders that include several sunflower plants. I decided to leave them grow and will be happy when they start to flower in a few weeks.

Film and Theatre reviews

2009-06-26T11:27:00.006-05:00

This week JSP and I went to two events, a film: Training Rules and a play: Robots vs. Fake Robots. Both events hosted short talks with the audience after the main production.

Training Rules is a documentary about women's basketball at Penn State and was shown as a part of the Walker Art Center's Queer Takes: Standing Out series they are doing for Twin Cities Pride. The film shows how Penn State supported coach Rene Portland and her "No lesbians" policy on the Big Ten women's basketball team. It was remarkable to see this level of homophobia and abuse that went on until 2007. The film was well received by the audience and afterward The University of Minnesota's Mary Jo Kane, Ph.D., gave a short t alk about homophobia in women's sport. The audience engage in a questions and answer session that was revealing about how the University of Minnesota is now a leader in non-discrimination. It was an eye opening evening regarding how sports are perhaps the last bastion of unapologetic discrimination.

Robots vs. Fake Robots is a play by a Los Angeles, California native, David Largman Murray. The play received several positive reviews. I hated the play for the first 10 minutes, before I fell into the world of the play and began to see that there was more to the play than I was giving it credit for. The actors were committed to their roles and the somewhat strange language used in the play stopped being irritating and became interesting. Genuine character development on the parts of both robots and fake robots were convincing. The dancing, also an irritant to me in the first few minutes of the show, became entertaining and endearing. By the end of the show, I was won over, this script and this production are very good.

Thursday's audience at Robots vs. Fake Robots seemed very, unsophisticated, based on the manic laughter coming from various blocks of seats during some parts of the show. I imagine that there were several young people in attendance that came because of the title and had never before seen a live theatre production. After the show was over there was a short discussion including the playwright, who had flown in from LA; the director; the producer; and several actors. JSP did not want to stay for the discussion but I convinced him it would be short. It was short and and also illuminating to hear various opinions and experiences from those involved in the production.

Training Rules and Robots vs. Fake Robots were back-to-back, a pair of widely divergent cultural perspectives. Both proved enjoyable and insightful.

The Intellegent Homosexual...

2009-06-14T11:38:00.006-05:00

On Friday, June 12, a scant two days ago, our friends from New Jersey, John and Paul, took JSP and I to the Guthrie Theater to see the new play by Tony Kushner, "The Intelligent Homosexual's Guide to Capitalism & Socialism with a Key to the Scriptures".

The play, while a bit long at three hours plus, was a wonderful triumph. At present the play is a "work in progress" and reports are that Kushner is tweaking the script during the maiden run of the show here in Minneapolis.

The staging is incredible, the actors utterly believable, and the script is a gem. There are several reviews of the show that you can read on-line, so I won't bother with a full review, but I do want to give the show my highest level of approval and admiration.

While I enjoyed the show in its entirety, I found the second act especially wonderful. During one scene in the family's dining room several heated conversations are taking place at once which is challenging to follow, but provides an orchestra-like few minutes where the actors shine in concert with each other. It is family fireworks at its raw and honest best.

Tony Kushner's latest illustrates the many reasons he is widely considered America's preeminent dramatist of this generation.

Krugman gets it right

2009-06-12T14:20:00.003-05:00

I am not a big fan of people throwing politics in my face, especially my mother, who, despite all the evidence for global climate change, cannot once mention any cool weather without saying, "So much for global warming."

I believe that her rabid willful ignorance is stoked by the right wing media that she imbibes on a daily basis. Paul Krugman writes about this phenomena in his latest New York Times column, "The Big Hate."

Staring down 34 - thankful to have lived another year

2009-06-10T16:35:00.008-05:00

First off, I want to mention that our garden is producing wonderfully. I have been enjoying strawberries off the vine for the last week.

This weekend I will be 34 years old.
I have outlived my expectations.
I have outlived my vanity.
I have outlived David Carradine.

When I fist learned about my cancer back in 1998, I didn't think I would live to see 25.

When my cancer returned in the second half of 2007, with a diagnosis of Stage IV M1c metastatic melanoma, I learned that my life expectancy had dropped to 6-18 months. The doctors gave me a 9-15% percent survival rate for five years. Here I am, more than 18 months later, living, eating, sleeping, and playing soccer with my disease. I don't know how much longer I have left, but as of this weekend I made it to my 34th birthday.

I had thought about planning a birthday celebration for myself, but then I decided that I'd give myself the gift of skipping the stress and not doing it. I don't really like being the center of attention anymore anyway.

Overall I feel strong. I am out there on the soccer field on most weekends, I have a great partner and wonderful friends and family, what more can a guy want.

JSP and I are excited to be welcoming our friends Paul and John to the Twin Cities this weekend. They will be here on a short visit from New Jersey. They picked the best time of year to be in Minnesota, especially now that we have gotten the rain we needed and it should be warming back up as they fly in.

Now if I can just get over this cough.

Life is grand. Here's to 34 and many more.

Reading about an amazing, strong, resilient woman

2009-06-05T09:40:00.002-05:00

Earlier this week, I read an article, Justice is unequal in sex abuse in the Minneapolis Star Tribune. The article was about how pedophiles who abuse members of their own family are often sentenced to lighter punishments than other pedophiles.

In the comments section, a woman wrote a comment that she and her family are living through this nightmare and she posted a link to her blog. (That comment now appears to have been removed from the Star Tribune Web site.)

I have spent many many hours in the past two days reading the last 6 months of this woman's blog... and I am amazed at how she and her family are surviving and coping with the fallout from the actions of the abuser.

This woman is an amazing writer, and she does not hesitate to use profanity, so if you are easily offended this is probably not for you. However, if you wish to read her ongoing testament to surviving incest, you can find her blog at doingduluthmn.blogspot.com/. Scroll down the page until you see the link to "In The Beginning"

Again, this is not an easy or quick read, proceed with caution.