Both of Us

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.