Both of Us (In Spirit)

Celebrating his birthday

noreply@blogger.com (JSP) — Sun, 12 Jun 2011 14:54:00 +0000

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

noreply@blogger.com (JSP) — Sat, 26 Mar 2011 14:20:00 +0000

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

noreply@blogger.com (JSP) — Sun, 13 Mar 2011 15:00:00 +0000

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

noreply@blogger.com (JSP) — Mon, 14 Feb 2011 20:39:00 +0000

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

noreply@blogger.com (JSP) — Mon, 07 Feb 2011 22:10:00 +0000

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

noreply@blogger.com (JSP) — Sun, 06 Feb 2011 13:40:00 +0000

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

noreply@blogger.com (JSP) — Sun, 06 Feb 2011 13:18:00 +0000

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

noreply@blogger.com (JSP) — Fri, 04 Feb 2011 13:17:00 +0000

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

noreply@blogger.com (JSP) — Thu, 03 Feb 2011 16:50:00 +0000

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

Midweek update

noreply@blogger.com (JSP) — Wed, 02 Feb 2011 16:27:00 +0000

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

noreply@blogger.com (JSP) — Mon, 31 Jan 2011 16:30:00 +0000

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

noreply@blogger.com (JSP) — Fri, 28 Jan 2011 13:47:00 +0000

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

noreply@blogger.com (JSP) — Wed, 26 Jan 2011 21:41:00 +0000

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

noreply@blogger.com (JSP) — Wed, 26 Jan 2011 00:37:00 +0000

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

noreply@blogger.com (JSP) — Mon, 24 Jan 2011 13:25:00 +0000

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

noreply@blogger.com (JSP) — Sat, 22 Jan 2011 22:15:00 +0000

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

noreply@blogger.com (JSP) — Fri, 21 Jan 2011 16:17:00 +0000

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

noreply@blogger.com (JSP) — Wed, 19 Jan 2011 13:26:00 +0000

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

noreply@blogger.com (JSP) — Sat, 08 Jan 2011 15:27:00 +0000

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

noreply@blogger.com (JB aka JayBee) — Sun, 02 Jan 2011 05:17:00 +0000

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?

noreply@blogger.com (JSP) — Sun, 12 Dec 2010 13:35:00 +0000

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

noreply@blogger.com (JB aka JayBee) — Thu, 05 Aug 2010 11:23:00 +0000

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

noreply@blogger.com (JB aka JayBee) — Sat, 24 Jul 2010 19:11:00 +0000

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

noreply@blogger.com (JB aka JayBee) — Sat, 24 Jul 2010 00:40:00 +0000

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

noreply@blogger.com (JSP) — Thu, 15 Jul 2010 01:54:00 +0000

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.