4 March 2021

     It has now been eight days since my last round at UW Health.  UW wanted me to receive it twice a week, but it was cut to once a week due to "transport issues" (i.e., RGCI does not want to bring me to the hospital twice a week).  Now I have gone over a week without the interthecal chemotherapy.

     When I get to UW I receive grade A healthcare, but the problem is prison officials prevent me from getting there, and the level of care I receive here is often wanting.

     Continued working on my Mug Shot collage of Joe Hetch, using snack food wrappers.

    

     Reading White's Renoir biography, she mentions at age 69 Renoir began doing an increased level of images of himself and family and this "might well reflect his fears about mortality."

     I have seen an increased level of self-reference in my work and have come to the same conclusion.

1 March 2021

     I was up at 3am as I am really stressed out.  They still have not gotten me my venetoclax.  However, RN Barton informed me it was my responsibility to inform HSU staff that the staff who transported me to the hospital failed to pick up my medication.  This ignores the facts that I do not know what the transport staff pick up, that my medication came from UW Health, and that the transport staff check in with medical staff upon returning to the prison.  Hence, if they had been told to pick up my medication and failed to do so, a competent medical staff would have known this when the transport staff handed over everything upon returning to the prison.

     Not only are they incompetent, they cannot take responsibility for their failures.

     I need to go to the library and type up my response to the State asking the court to deny my sentence modification.  And I need three sentence modifications, not one.  But I knew from the get-go that I would not find relief.

     I am tackling Renoir: An Intimate Biography by Barbara Ehrlich White.  It began more as a documentary list but has improved as it has gone on.  Yet it pales in comparison to Darwent's Josef Albers biography.  Darwent did do a hell of a job, I must admit.

     In one of Renoir's letters, he wrote that "the wooden clogs keep you from being afraid of cold feet" in the winter.  I cannot imagine wearing wooden shoes.  There is no pliability there.  That cannot be comfortable, let alone warm, can it?

     With that said I do not think France deals with Wisconsin cold, but they sure did during the Battle of the Bulge.

     I was out running my 5K this morning, and over the intercom they kept calling runner.

     On the units they hire guys to be runners.  Their job is to inform guys on the unit that they are needed to go someplace within the prison.  When a runner is called, they go to the sergeant's station and find out who is needed where.

     I kept waiting for someone to come tell me they needed me at HSU to take my medication.  But call after call, each of which felt like a punch, no one came for me.  Finally, Tommy Dawson told me they needed me at HSU.

     At 10:41am, 48 hour and 26 minutes late, I finally received the 800 milligrams of venetoclax.  There was no apology.

     They just do not see me as a human being.

27 February 2021

     I was going to the Health Services Unit when LPN Van Winkle notified me that they had run out of my venetoclax, a targeted therapy drug which is the only thing keeping the cancer from growing unchecked, and are awaiting it Federal Express.

     She is the same person I asked to ensure my oxycodone was sent along with me on my hospital trip to Madison in early January, because I was experiencing 7 - 9 head pain.  She blew me off and I went on the trip without any pain relief.

     This is insane.  These people are not fit to oversee another human being’s welfare.

     I ran 5K.

February 24-25

 

24 February 2021

     A Chinese man has been ordered by a court to pay his wife for housework done during their marriage.  I must tell my parents.

 

25 February 2021

     They took me in a day early to receive my chemotherapy, plus I was able to see Dr. Pophali.

     They cut my immunotherapy, obinutuzumab, from weekly to monthly.  Dr. Pophali says it tends to have a short response, plus my cancer mutates past treatments much faster than most.

     The WI DOC has approved the payment of my CAR T-cell therapy.  However, we cannot go ahead with it as long as I have cancer in my central nervous system.

     The plan is to continue to alternate methotrexate and cytarabine intrathecal chemotherapy treatment weekly plus the oral venetoclax daily.  We have about to the end of March to get the cancer cells out of the CNS.  If we cannot, we shift to palliative care.

     I have known for a while that this was my last or second to the last remission.  However, to hear Dr. Pophali talk about transitioning to palliative treatment, if we cannot get the MCL out of the CNS, has a gravitas, that me telling people that does not have.

     I have a certain anxiety about the next month that I do not believe I have had since I have been inflicted with this disease.

     I ran 5K this morning.

     I am almost done reading Nicole Fleetwood's Marking Time: Art in the Age of Mass Incarceration.  It brings back a lot of the challenges I have had in my twenty-two plus years behind bars.

     The Special Needs Committee meet to decide if I could continue to have an extra pillow, thicker mattress and the like due to my medical condition.  These are up for review annually.

     The nurse who had me sign the paperwork said to me that it doesn't matter what you did (as in criminally), we will try to make things as comfortable for you as we can. 

     She does not see me as a fellow human being and patient, but as an Other.  A prisoner.

     Her attempt to comfort me did anything but.

     Shortly after that, when I was in quarantine in the Health Services Unit, Officer Rice mentioned it was not bad having me do my entire quarantine in HSU -- most prisoners quarantine in the receiving unit -- because I was a good inmate.

     Again, not viewing me as a fellow human being who is suffering and dying, but as an Other, a prisoner.

     Fleetwood discussed the view of us behind bars as something other than.

February 17-20

 

17 February 2021

     This is the best I have felt since late December.  I ran 5K today, and my knees are barking.  It feels so good.

     I weighed in at 193 pounds today.  Oh, my gosh.  I blame my dad and Carla for the candies and cookies they purchased for me around the holidays. 

    

20 February 2021

     I ran 5K this morning for the third time in four days.  That is after not running for thirty-nine days, because I was just so damned sick. 

     I fell three times yesterday on the ice and was bloodied up pretty good.  Yet all the blood was due to the blood thinner I am on, not any serious injury.

     I was worried another emergency room trip was on the agenda.  Thankfully, no.

     My legs are killing me today.

13 & 15 February

 

13 February 2021

     I was told the COVID-19 swab results should be back today, but I remain in quarantine until Monday.

     Nausea again today.  I took something for it but cannot shake it.

 

15 February 2021

     I was let out of quarantine, i.e., segregation, this morning.  Now the brilliant DOC officials cannot find my property.  How lovely.

     Had nausea something awful today, but, whether causation or correlation, I do not know. It went away after drinking some tea.

12 February 2021

 

12 February 2021

     The only tumors I still can physically detect are those on the right side of the neck.  The tumor near my right eye and left jaw are gone.  But, as of the last news I had, the cancer is still in the CNS.

     I slept a lot today.  I was working on my Bakhtiari van Doesburg watercolor and I just needed to get some sleep.  I believe the combination of targeted therapy, immunotherapy, and chemotherapy that I received yesterday really takes it out of me.  Cytarabine going into the brain cannot be anything good.

     They did a COVID-19 swab today.  I cannot see the results coming back until Monday; therefore, I believe I am in quarantine until then. 

     I need to run Monday and cut back on the food.  I am fat.

     Running will elevate my mood and losing fat will make me feel better about myself.  Nothing wrong with that.

11 February 2021

     I started Josef Albers: Life and Work, by Charles Darwent today.

     

I went for treatment.  I was nauseated, felt disembodied, and just downright awful.  It seems it occurs every time I receive the cytarabine in the central nervous system.  I worry that now that I noticed this I may see these problems psychosomatically.

     There were cancer cells in the spinal fluid drawn last Thursday.  They are trying.

10 February 2021

 

     No headache, nor nausea today.  I called the folks, and overate.  It is time to get out of quarantine. 

     But the courtyards are closed due to extreme wind chill conditions.

     My father told me he emailed my brothers and told them he just purchased his last pair of running shoes.  I told him not to sell himself short.  But I have been thinking of doing the same thing.  I am trying to decide if I really need them.  I probably have four good months to run once I am out of quarantine.

     I told him not to renew the Milwaukee Journal Sentinel.  I will miss sitting down and reading the paper.  I just am too sick most of the time and have weeks of newspapers sitting here.

     It is hard to read when you are sleeping all the time.

     I tried tackling the taxes today, but found I needed another form with directions.

     A headache hit me late, but I put some hours into an artwork.

     I finished “The Surreal Life of Leonora Carrington” by Joanna Moorhead today.  Unless someone is a Carrington fanatic, I would not recommend this book.

     Good day.

8 February 2021

     I am dealing with nausea again.

     I saw Dr. Labby today.  She says that the UW has not gotten her all the information she needed to go forward to the Special Needs Committee to approve or not the CAR T-cell therapy, or the donor bone marrow transplant.  Frustrating.

     I have always been one who thought ahead.  I am not good in living in the moment.  I am in the ultimate live in the moment from here on out.  There is no ahead for me.  Do not tell me that, as I still have plans.  Albeit short term but plans none the less.

     It is really hard to wrap my head around the fact I will be dead in months.  I know it to be true.  Understand that is the end.  But it is a very odd concept.

7 February 2021

   I had nausea and a raging headache today.  Something I had hoped I had put behind me for a while.  This cancer is just so disagreeable.

     I slept a lot, something I have been doing a lot of.  Knocked out the rest of my letters, did some reading, and actually put some paint on paper.

3 February 2021

 

     I spent eight days in the hospital, returning the first.  Where to begin.

     The cancer entered my central nervous system (i.e., the brain and spinal cord).  Because of that they began intrathecal chemotherapy.  They continued me on the venetoclax and began an immunotherapy.  The latter of which the oncology nurses had not seen that drug before.

     Although it was similar to the immunotherapy Rituxan I received earlier.  My guess is it is a next generation drug.

       An MRI found infections had set in around the tumors in my neck.  They put me on antibiotics and that pain is gone.

     My eyes went haywire again with the swelling around the surrounding tissue.  But this time fluid built up between the clear layers of the eyes and the white.  Plus, my eyes turned yellow.

     Nausea is an issue, as is vomiting.  But we have response. 

     The tumor near my right eye is dramatically smaller.  And for the first time since December 28th, I had a period when I was pain free. 

     It did not last long, but it is progress.

     I understand this is transient.  Although at this point it is all about enjoying whatever little bits and pieces of happiness and satisfaction I can get from life.

     I will be going in every Thursday for chemotherapy and immunotherapy.  I really hate these trips.

4 February 2021

 

     I went to UW Health today for my now weekly immunotherapy, and chemotherapy.  All went smooth.

     I talked to Dr. Pophali via phone while at the hospital, and she told me we are in uncharted waters.  Mantle cell lymphoma does not breach the thecal sack, reaching the central nervous system.  Mine has.  Therefore, they have no roadmap on how to go forward with treatment.

     After much consulting with other experts, they decided to treat the cancer in the CNS separately from the cancer in the rest of my body, in lieu of systemically. 

     Since there is not treatment path to treat MCL in the CNS, she decided to treat that MCL as it was a lymphoma that was known to penetrate the CNS.

     At first the plan was just to hit it with chemotherapy, methotrexate in this case, but she decided to go ahead and alternate that with cytarabine, on the advice of other lymphoma experts.

     They continued to see cancer cells in this past Monday's spinal fluid draw.

     This cancer just continues to do things that it is not supposed to do, and that is not a good thing.  Unless, of course, it goes away.  But it is always going in the opposite direction.

     We had to drive back from Madison in an intense snowstorm.  We even had trouble getting the transport van through the prison gates.  They struggled to get traction.

17 January 2021

 

     I am not responding to the venetoclax.  The tumor near the right eye continues to grow, and I am developing vision issues again.

     I continue to read and paint.

 

22 January 2021

     I have not been feeling well.  Monday, I had an ambulance ride to the UW Hospital. 

     I had woken up about 3:30. My eye were fire engine red, and the flesh around them swollen.

     They could not figure out the cause, but do not believe it was an allergic reaction to the venetoclax.

     I have been terribly tired, and physically and mentally fatigued.  Just horrible.  I struggle to do much, and do not want to get out of bed.  Although, yesterday in the mid-afternoon I suddenly felt better, after feeling like a zombie all day.

     I arranged some leaves, did a quick sketch, and, using coffee as paint, put brush to paper.  I did not finish it, yet.

     This morning I am off to the hospital yet again.

     I want to see if they can get me off the venetoclax.

9 January 2021

   This is the best I have felt since the 29th of December.  One on the pain scale, and no nausea.  I am still terribly tired and had to be woken up for standing count.  Then I slept most of the morning away.  I could sleep some more, too.

    I want to run and do some artwork.  I have to get all this information to my dad so he can look up the latest numbers on the web for my sentence modification motions.  I will be filing my request for an extraordinary health condition release next week.

     Neither will be granted.  In the former, I would need three courts to grant my request for sentence modification.  I doubt I will get one.

     I ran 5K.

7 January 2020

  My head hurts so bad.  I have been unable to read, draw, or paint.  Every time I do so my mind splitting headaches ramp up, severe nausea ensues, and I develop terrible motion sickness.

     I started a new drug, venetoclax, yesterday.  It has a fifty percent efficacy.  I believe if this does not work it might be time to give up the ship.

     I have spent the last several days doing nothing but lying in bed trying to limit the pain and nausea, and have 2 January 2020

     I talked to my parents today.  My dad had just come in to warm his fingers from shoveling snow.

     Sadly, the snowstorm stayed south of us.

     I sat down with Jason Halda (a fellow prisoner) this morning and finished a sketch of him I started yesterday.  I still think I need to go back and work on the nose.

     The idea is to use it as source material for a collage.

been unable to do what I enjoy doing.  That is not living, that is existing.  The idea is to live.

     I have not been able to work on my art.

8 January 2021

  I saw the nurse who draws my blood and tracks my labs today.  She was all enthused that my blood work from yesterday came back normal, without raised leaves uric acid.

     We want raised levels of uric acid within the normal range.  This would mean we have tumor lysis, but not too much too fast where it would poison my system.  Therefore, it initially appears, I am not responding to the venetoclax.  Although I could very well be wrong.

     The nausea is not bad today, but the pain continues to be a problem.  The oxycodone is making bowel movements difficult, yet not controlling the pain as I would like.  It intoxicates more than it relieves pain.  Very frustrating.

     I want to run this weekend.

30 December 2020

   I had a video visit with Carla yesterday, and for the first time I realized how lonely she is. This pandemic has been hard on everyone.

     I believe she is an interesting woman.

     I believe the pandemic had been harder on people outside of prison.  Prisoners are used to isolation.

     Carla showed me her phone over the Zoom connection, and she has my artwork, downloaded from the Artforum website, as her phones wallpaper.  I thought that was cool.  I was tickled pink.

     I ran four miles this morning but will count it as 5K.

     I went outside yesterday and measured my walking gait, then walked my normal running path.  It takes just over eleven laps to run a mile, and thirty-five laps is just over 5K. 

     I had been running thirty-four laps and calling it 5K.  Running extra laps, the next two days should make up the shortage. 

     I have not been running in the courtyard all that long.  Prior to that it had been on the treadmill once they shut down outside recreation.

     Joe Hecht sat for me this evening and I did a portrait of him, graphite on drawing paper, 9" X 12", as source material for my Mug Shot series.

1 January 2021

     I have had headaches all week, which I have controlled with acetaminophen.  Yesterday it just would not go away, and it is back in full force this morning. 

     I took 5mg of oxycodone this morning and that did not even take it out.  It did improve it though.

    I did a sketch of Joe Hecht a couple nights ago that turned out good, but not where I want it. 

2 January 2020

 I talked to my parents today.  My dad had just come in to warm his fingers from shoveling snow.

     Sadly, the snowstorm stayed south of us.

     I sat down with Jason Halda this morning and finished a sketch of him I started yesterday.  I still think I need to go back and work on the nose.

     The idea is to use it as source material for a collage.

28 December 2020

 I ran four miles for the second day in a row.  It has been a little warmer, and we had a good snowfall yesterday.

     Now it looks pretty outside.  Plus, we are expecting more snow starting tomorrow night.

     I expect to be going to the hospital any day now.

29 December 2020

   I have a tumor emerge on the upper right side of my nose.  Plus, the one on my neck on the right side is growing.

     For some reason, the tumors are appearing on the right side, more than the left.  The one on the lower jaw is on the left.

     I sure hope that new drug works.  I suspect I will start the new drug on January 6th.

     I received some Christmas letters today.  Late is okay, I am still in the Christmas mood.

     I just want to keep on celebrating Christmas until I die.  But I really need to lay off the holiday goodies because I am getting fatter.

     We are experiencing a wonderful snowstorm too.  I was out walking in our courtyard in the snow.

25 December 2020

   I went for a holiday run, in my shorts of course, and it was so cold my penis froze and hurt.  It seems 3°F, with a -11°F wind chill will do that.

     I did a sketch of Jason Halda, but, as it was last time, it is off.  This time, however, not that much.  I may be able to move things around to make this work.

     Tommy Dawson gave me his Christmas dinner.  That was sweet of him.  He really wants the drawing I did of Jason, but I will need to do one or more, so I have some for the archives at Prisoner Express.  Then he can have one, or the other.

     I would rather give him a leaf wash drawing.

     I had a nice Christmas talk with David Tarlo outside.  He said he just wanted to let me know how much he appreciates me before I die.  That was sweet too.

     Prison can be hard, but there is a lot of kindness and caring that goes on in here that society would not expect.  I did not expect it.

     My toes are cold.  It is nippy out there.

26 December 2020

  I found holiday music on the radio this morning, much to my delight.  One of stations is part of the Christian Radio Network.

     They ran a news story this morning.  President Elect Biden had nominated an individual for the Secretary of Education.  According to CRN, the nominee has "extreme left views which demonize Christians."

     This extreme view which they believe demonizes Christians is, he believes transgender individuals should be referred to using the pronouns they identify as.  How dare he.

     Shortly after this "news" announcement, they played an Elton John song, who, it is no secret, is homosexual.

     I split my left heal, from these extremely dry conditions.  I could feel it last night in bed. 

     It did not deter me from putting in my 5K this morning.

     I looked at it, and it is only about a three-millimeter split.  It feels like more.

17 November 2020

  It is my neighbor Bob Blunt's birthday today.  I believe he is 83.

     I had a great day creating artwork yesterday.  I knocked out a couple four by six inch wash drawings, with coffee and watercolor.  Plus a charcoal piece.  All portraits of oak leaves. 

     Today I'll try one in the fluorescent colored pencils Carla sent me.  That could be difficult getting the browns I want.  They do not make fluorescent brown.  Orange and blue.  Green and red.  We shall see what I come up with.

     I need to e-message my dad and see if he can order me some watercolor paper.  I have some high end 300 pound paper, but that is saved for more polished worked up pieces.  The rest I used up.

     I was thinking yesterday.  Last year at this time I was so sick I, and hospital staff, honestly did not think I would have much more time to live.  I know the cancer is a ticking time bomb, about to go off any day, but I am a month away from my birthday.  I thought my last birthday was iffy at best, and now I get another one.  Life is good.

     President Donald Trump keeps insisting he won the recent presidential election, which he lost.  We might be looking at the first American coup d'état.

16 November 2020

   We still cannot get staff to properly wear their face masks.  We have 30% of the DOC's deaths at this prison, yet they refuse to take this serious.  I have been painting oak leaves, using coffee and watercolor.  I need more watercolor paper.

     My friend, Carla
, bought me some art supplies.  With one of the watercolor post cards I am doing an oak leaf for her.  She also picked up a couple charcoal pencils, so I may do a charcoal leaf drawing for her too.

     Still busy reading Warhol by Blake Gopnik.  Great book.

11 November 2020

   We are back at work making masks again.  They bought black flannel, on accident. They are trying to decide how to use it.

     I was able to get Jon, now Paul, Cantwell a job sewing with community service.  He can be difficult at times, but he has one helluva work ethic.  Plus he can sew something special.

10 November 2020

  Due to a front coming through and producing showers, we had recreation inside today.  With my legs asking to rest after eighteen days of running I figured this would be a good day to do so.

     I received my ultramarine paint yesterday and began doing what I needed to do to finish up a few pieces, prior to shipping the out.

     I weighed in this morning while getting my blood drawn at 180 pounds.  That is two pounds less than, plus in full clothing, from my weight at recreation a couple days prior.  That tells me the scale my boss Chad Martin brings to recreation is about two pounds heavier than the scale in our Health Services Unit.

     Since weighing in at 179 when coming out of the hole, it likely would have been about 177 on the HSU scale.  Meaning I lost about four pounds while in the hole, sick.

7 November 2020

 I felt the best I have in awhile yesterday.  It took me a full three weeks to clear the COVID-19 symptoms.  Then, after only feeling healthy for three or four days I became ill  with respiratory symptoms again.  I haven't cleared them, but I do feel better.

     I did a graphite drawing, Portrait of an Oak Leaf, yesterday.  It is not as good as I think it should be.  An erasing shield would be nice to do some of the leaf's veins.  My modeling of the form is not as good as I would like.  That is what happens when you do not spend enough time at your craft.  

     The Canadian artist, Robert Genn, who I read this past summer said if  you don't spend enough time at it you will fight your work.  That is me.  I have talent, but spend too much time with my head in books.  Right now it is Warhol by Blake Gopnik.

Robert Genn, Picnic Point to Philip Glass Lake of the Woods

     I just returned, all sweaty, from a 5K run in 29:51:97 (i.e. 9:36 minute miles).  I felt better yesterday, health wise.

     That means my 33 minutes on the treadmill is a good goal for, an estimated, 5K.

 8 November 2020

     I ran 5K today on another record setting warm day.  

     The legs are sore, which does not happen very often, but this is my seventeenth straight day running.   Wednesday is supposed to have highs in the 40s and may be a good day to give the old legs a rest.

     My friend Kelly Bodoh tested positive for COVID-19.  It seems the Fox Lake Correctional Institution is housing positive individuals in the same housing unit as negatives.  The same as the Redgranite Correctional Institution.

     This morning we even had an officer have infected guys working in the units food servery.  A very dangerous place to live.

     We have no voice so nobody cares.

6 November 2020

  Really heavy winds in the last few weeks gratuitously brought leaves in the prison yard.  A couple days ago, while at recreation, after running 5K, I collected an assortment of oak leaves.  Today my models are posing as I draw them in graphite.

     It has been unusually warm for this time of year topping into the 60s and low 70s.  I did some running and just soaking up the sun.  Not that seasonable weather would have dissuaded me from running, but I would not have done it shirtless.

      Today while running I tried to keep track of my 5K time, but some klutz seems to hit the reset button while running.  I'll try again tomorrow.

     This time I plan to set it down on the bleachers when I begin and pick it up when I finish. 

27 October 2020

   The National Guard are coming through doing mass testing of staff and prisoners today.  The testing is really coming two to three weeks too late as this place was filled with COVID-19 then.

     I spent fifteen days in solitary confinement with COVID-19, and it took three weeks to be symptom free.  And, possibly, may still have symptoms.  I have broken blood vessels under my right arm, a sign of blood clotting from the disease.

     I am tired a lot, but believe that is my body adjusting to activity again, after spending fifteen days locked in a seven foot by twelve foot concrete, cinder block, and steel vault.

     I am running again, but on the housing unit's treadmill, as everything else is closed down due to COVID-19.

25 September 2020

     I detected a new lump on my head yesterday.  If it is a tumor I will have gone a hair over seven weeks before disease progression on Zanubrutinib.  The study my father found on the web had median time until disease progression at 4 months.

     If this indeed is a tumor, I continue to under performing all of the metrics.

     A few of the trees are turning beautiful autumnal colors.  It is always a treat.

26 September 2020

     It is absolutely beautiful outside today for late September.  I would not call it great running weather, but a walk or bike ride would be lovely.

     Of course, I am going to run.

     I painted this morning while Dylan "Lucky" Hayes watched and chatted with me.

1 October 2020

     It is a full moon tonight, but the heavy cloud cover obscures it.  I am disappointed.

13 September 2020

  I went outside and did a good 5k, then did a little walking and talking with Paul and David Tarlo.

     I have been on zanubrutinib over a month now.  The tumors have shrunk, but they atrophied to a point and stopped.  It does not appear I will achieve full response.

     Joe Heck has allowed me to use his petition for release as a guide for mine.  My big problem at this point is Dr. Pophali's unwillingness to go beyond, "it's hard to say" when I inquire about life expectancy.

     I have been dealing with more than typical fatigue the last week plus.  I hope it is only a side effect of the zanubrutinib and not disease progression.  Otherwise, beyond body sores, I feel fantastic.  Especially considering I have stage IV cancer.   And as my friend and late fellow cancer patient Joe Johnson liked to say, "There is no stage V."

25 August 2020

   I ran 5k today in a pretty hard rain with rolling thunder overhead.  I then went straight to the prison's doctor's office and left several puddles on Dr. Labby's floor.

     We discussed how we will go about my end of life.  But Dr. Labby couldn't say die.  People are very uncomfortable just saying the word.

     I am not, which makes other people uncomfortable.

     I just about finished up my Bakhtiari Versus Man Ray Grizzly Bear painting.  I need to add spittle spraying out of the bear's mouth.

     I need to park my rear end in front of the mirror and do another portrait.  I have been really busy on the bear painting.

David Bakhtiari, Green Bay Packers 

24 August 2020

   It is a warm humid day.  Despite that I did not sweat that hard when I ran a 5K.

     I did not run that hard, partly because of the heat and partly because I am just in pain.  It is my chest and back which I suspect are tumors.

     The pain went away, as did the tumors, pretty much from what I could tell, for awhile.  Then just about a week ago I developed low level chest pain, pain I hoped was just from running.

     It was not.  And it continues to get worse every day.  It has been draining today.

     In spite of that I had a good day.  I spent most of the day working on my nearly completed Bakhtiari - Man Ray painting, while  Kabe Harrah was working on his drawing.  Rufus Watson, Jr. joined us a little later working on his graphite drawing.

I did a little digging into avenues to request release for medical reasons.  Then I ran.  I hope to run a little better tomorrow.  I also hope to be in less pain.

     I also received a letter from my buddy, John McGee Jr.  Too much Jesus stuff for me, but that is John.

    

First posts, August to October

 I believe it is Tuesday, October 29, 2019. I just  spent a week at the UW Hospital.  I have Mantle Cell Lymphoma.  It is incurable, however, it can be treated.   Some patients get an extra decade or more.  With that said, the odds of that in my case are not good.

When I walked in on Wednesday they said I had a month, possibly two to live.  I refused to give consent for treatment until they put numbers on it.

     I had a number in mind before I would consent to treatment and they just beat it.  Twenty-five percent or less and I was not going ahead with treatment.  They gave me a thirty percent chance to gain full remission. I am not favored to win this race.

     The number I refer to is the odds I would get that extra decade.  This is no fun and to do this with minimal chance of getting that ten is not how I want to die or live my last days.

      There are two variants of this cancer.  One which lends itself to treatment and one that doesn't.  For the second one they go to bone marrow transplants and several non-FDA  approved treatments.  I told them if I have the second I stop, and if that number gets below my threshhold I stop.

     This last week was no fun and I was told as soon as I begin feeling good again, we go right back at it.  That is not how I want to die, nor live.

     I am retaining a lot of fluid, including my left lung.  My feet, ankles, calves, and toes looked unreal.

     When I first arrived in the hospital my cancer cells were multiplying at a rate of 70% at a time.  I was told that dead cells leave the blood stream as uric acid, which is normally about 1% of a person's blood.  Eight percent is dangerous and, due to the fastly growing cancer cells, which die quick, mine was over 10%.

      My immune system is compromised so they have me in medical isolation, which doesn't do anything for the spirits, until they can find a single cell for me that is wet (i.e., that has a sink and toilet).  They don't want me picking anything up from someone else.  I have a book and this tablet, but no Wi-Fi access. Nausea too.

     Nausea has been worse than the pain.  But, overall, I just feel icky.

     I struggle to eat but on the last day at the hospital I finally found something that went down smooth.  It wasn't the shrimp linguini, or the pizza, or the chicken alfredo, but the mighty 24¢ popsicle.  You bite a little off, let it numb your throat, then let its cool sugary goodness slide down.  When the effect wears off take another bite.