3 April 2021

 

     I read an article in the Milwaukee Journal Sentinel about a woman who runs cross country and track for the University of Wisconsin-Stevens Point.

     At age fifteen she lost half of a lung due to a congenital disease.  She was diagnosed with thyroid cancer at age seventeen, necessitating the removal of her thyroid.  Yet she competes as a college athlete and runs fifty miles a week.

     This lit my fire.  I had been working on running a fifty-mile week last summer when I learned I had relapsed.  I decided to limit my runs to no more than five kilometers a day because I wanted to use what energy I had for other things, namely, my art work.    

     Today I ran just over five miles giving me fifty-six miles for the week.  That includes not being able to run Monday (MRI at UW), and Thursday (UW for chemotherapy).  It felt fantastic.  Then I became very nauseous in the afternoon.

     Damned cancer.

     But I did it.

1 April 2021

 

     I went to UW Health for my latest round of interthecal chemotherapy.  Round 1 of cycle 3, I believe.

     I saw a male cardinal on my return trip from the hospital.  Plus, I was able to watch the first three plus innings of the Brewers versus Twins opening day baseball game.

     It is nice to have my friend baseball back.

     I learned from RN Hansen that I do have a PET scan scheduled.  My hope is that it is on a chemotherapy trip.  However, with the radioactive isotope IV, I find that doubtful.

     I hope the CAR T-cell therapy is successful.

     Carla does have cancer.  I hope it is a beatable form.  Her doctor seems to believe this will be a reoccurring battle for her.  I hope her remissions are much longer than mine.

     I get about two months and the crap is right back growing again.

     The last week and a half I have been dealing with nausea, sickness, and overheating at night.  That is how it all started in 2019 with the disease growth in the abdomen.  My guess is it had started to grow there again.  But we are going forward with something soon.  Plus, I still feel good more than I feel crappy--although Monday really sucked.

30-31 March 2021

 

       I weighed in this morning at 187.  That is the lightest I have weighed in a while.

 

31 March 2021

     I have run 24½ miles the last two days as I work towards my goal of fifty miles for the week.               

     Yesterday I forgot to apply petroleum jelly to my crotch and my scrotum is raw.  Today my right armpit is raw.  My knees do not feel too great either.

     I have these paint sample chips.  I had been looking through the Dick Blick art materials catalog, an artist’s beautiful dream.  When it dawned on me, while running as the snowflakes began to fall, to create a paper mosaic with those paint sample chips.

     Dick Blick had mosaic paper squares.

     You just go about your normal day, and as your head clears during a run, ideas pop up from your day's normal interactions.

     I cannot die.  I have far too many ideas I must get done before then.  With that said, when I was sick in January, I was ready to go, unfinished work or not.

29 March 2021

 

     I went to UW Health and just felt terrible today.  I continue to suffer from the sore neck issue that originally popped up on Martin Luther King Jr. Day.  Add to that head pain and nausea.

     I nearly vomited in the prisoner holding pen at UW.  Really nauseous and salivating something awful.  My old friend Joe Thyrion was there and gave me his puke bag. 

     I wish I had felt better so we could have talked.  I was just really out of it.

     They ran two MRIs.  One on my middle spinal cord, the other on my upper spinal cord.  If, as it was on MLK Jr. Day, a neck infection is causing the discomfort, this should reveal the problem.

     I believe UW wants to clear all infections prior to the CAR T-cell therapy, because my immune system will be offline, and I could go into a neutropenic fever.

28 March 2021

 

     The second half of yesterday was rough.  My neck became sore, like it had on Martin Luther King Jr. Day, which UW later identified as an infection.  I felt sick, then had abdominal cramps, before diarrhea had me on and off the toilet past 11pm.

     The weather outside this morning was horrible.  Thirties, damp, very windy, and wet snow coming down.  Which means, of course, I went outside at 7:30am and ran just a hair under nine miles in shorts.

     Janari "Bam Bam" McKinnie and I sat down tonight, and I put together a sketch of him, which is okay, but not exactly where I want it.  We plan to get together again sometime this week.  More source material for my Mug Shot series.

27 March 2021

 

     I feel good, both physically and mentally.  I need to really enjoy this while it lasts because I know it is transient.

     I woke up dreaming of welding and transitioned into jamming to the Utah Saints.

     Janari "Bam Bam" McKinnie has agreed to sit for me, to do a sketch for my Mug Shot series, Sunday evening.  I want to get two more guys, in addition to him, who have done plenty of time.  Plus, I may include myself.

26 March 2021

 

     I went to UW for the third time in four days.  I received IV immunotherapy, obinutuzumab, and IT chemotherapy, cytarabine.  Everything went okay, and the peanut butter and jelly sandwiches were just as dried out as usual.  Think a pumice stone for exfoliation.

     I learned from Amy, the nurse practitioner who did my IT chemotherapy, that I am scheduled to move forward on the CAR T-cell therapy, with or without cancer in my CNS.

     I might see 2022, and the possibility of another drug or treatment to come online to keep me alive a little later once I relapse from the CAR T-cell therapy. 

     That is what has been happening since July of 2020.

     I felt terrible yesterday but took a large cocktail of drugs last night which helped.  I was tired as all get out, then seemed to catch a second wind and struggled to fall asleep.

     The skin issue seems to be turning the corner.  It would be nice to not awaken at night because I itch so much.

24 March 2021

     Off to the hospital again today.  These trips are horrible. 

     Typically, I need to be ready sitting on a bench awaiting a call by 5am, but today it is 4:30 am.  I then get ankle and wrist restraints, with a waist chain, which my wrist restraints are chained to. 

     The trip to and from the hospital is two hours each way, and the days tend to run twelve to fourteen hours.

      The lunches are bag lunches which the prison makes the day before.  For some reason they do not put the sandwiches in plastic bags; therefore, the bread is hard and crusty.

     Today they took out a subsection of my blood to be manufactured into chimera cells for CAR T-cell therapy. 

     This procedure was first approved for mantle cell lymphoma in December 2020.  I will be the first person to receive this at UW Health.  Lucky me.

     It appears at last Friday's hematology/oncology meeting it was decided to go ahead with the CAR T-cell therapy even with the cancer within the CNS.  Unless Jan, the gal who runs the transfusion clinic, was misinformed.

     According to Dr. Pophali the CNS penetration will increase my chances for going into a coma.

     They measured me at 5 foot 7 3/8 inches.  I continue to shrink.

23 March 2021

 

     I went to UW Health yesterday and had an MRI.  They are looking to see if the cancer in the central nervous system has formed tumors.

     I did not see anyone from the Carbone Clinic (i.e., the cancer center within UW Health), so I do not know the results from last Friday's meeting.

     I started reading Hack's 191: Hack Wilson and His Incredible 1930 Season, by Bill Chasten.  This will be the first baseball book I have read in a while.

     I am still reading an entry a day in Frances Ambler's The Story of the Bauhaus.

     I felt great this morning.  I read, went to work, then ran five miles.  Suddenly, just before lunch, a wave of nausea hit me hard out of the blue.

     While frustrating, it is a good reminder to enjoy things while they are good, because it is fleeting.

     I did get to listen to the robins calling for a mate by running.

     We have been desperately in need of rain.  It has been in the forecast these last couple days and finally arrived this evening.  Maybe the evergreen trees will not be so russet anymore on the trips between the prison and the hospital.

21 March 2021

 

     I ran my five miles this morning and am up to eighty-two for the month.  The site of the spinal tap is still sore.  We had some Canadian geese and crows fly overhead.

     I noticed a contrail and remembered back in the early months of the pandemic when there were no jets to be seen. 

     I still find it odd that out here in the middle of nowhere we are under a heavily used flight path.  It is hard to look at the sky and not see a contrail.

     I have one more chapter in Catherine Hewitt's Renoir's Dancer.  It really is more a soap opera biography, than one revolving around Suzanne Valadon's artistic output.

Suzanne Valadon was a French painter and artists' model, born 1865

     My second Portrait of a Prisoner: Joe Hecht, snack food wrappers, and glue on Bristol board, for  my Mug Shot series was completed this afternoon.

     This one is earmarked for the Portrait Society Gallery show in 2022.

     I am so darn tired.

20 March 2021

     Another beautiful day running.  The site of my lumbar puncture is sore for the first time since we began doing these about two months ago.  I also learned Thursday that I am not supposed to be doing strenuous exercise for a week after the injection.  Oops.

     I am dying.  I enjoy running and life, at this point, is just about squeezing every last ounce of enjoyment I can out of it.   Therefore, I will continue to run.

     I need to get Ron Janz to eat more Snickers bars so I can have more material for my collages.  I need to make one more of Jason Halda, finish one of the Joe Hecht pieces, then get a few more guys to pose for me.

19 March 2021

     It was an absolutely beautiful day to run.  Upper 40s, sunny, with minimal wind.  I believe I had my best run since my last hospital stay.  I suspect my hemoglobin numbers being up, plus not running yesterday, helped.

     I received a letter from Carla and she appears to be going through the easily satiated issues I was having with mantle cell lymphoma.  Plus she mentioned some pain issues.

     It is enough to make a person sick.  I know the hell she may be in for.  Which I wish on nobody.

     Just a year ago she was newly retired, had her Irish passport, and was getting ready to visit Ireland.  Then COVID-19 hit, and now this, possibly.

     Life can just be downright cruel. 

17 March 2021

 

     I did my five run this morning in freezing rain, sleet, and snow.  I had been under the impression that the weather would be nicer today, but this may have been the worst.

     I went to work afterwards and continued working on masks.  We are almost done.  Children's mittens are next.

     I talked to my parents.  The prison vendor is out of oil paints.  They looked into ordering them from Dick Blick, but they no longer carry oil paints that come in plastic tubes.

     I received my Frida Kahlo and Albrecht Durer books today.

     I have these little bumps on my skin which dermatology at UW Health believes are bacteria which infected my hair follicles when my immune system was down from chemotherapy.  My body, they believe, has not been able to rid them from the hair follicles.

They itch something terrible.  I am taking antibiotics and have multiple topical creams for them, but it is not doing anything.  The last four days or so has been terrible.  I itch so bad I am struggling to sleep.

     I put my sweatshirt over my jacket as a model to paint from.  It kept collapsing so I stacked some books inside of it, and it proved to be a working model, albeit not ideal.

     Still Hunted for Their Pelts continues to progress.

18 March 2021

 

     I went to UW Health and received a lumbar puncture with methotrexate.  The spinal fluid taken from last week’s spinal tap showed a return of cancer cells.

    Tomorrow Dr. Vaishalee Kenkre, who is filling in for Dr. Pophali while she is on maternity leave, will gather a meeting where my treatment will be discussed and the road ahead will be determined which, may or may not, depend on what is going on in my central nervous system.

     If last week’s spinal fluid had come up clean, I doubt there would even be a discussion of my treatment at their meeting.  Since it was not, it is possible that we shift to the palliative treatment Dr. Pophali discussed with me.

16 March 2021

     I worked for the first time since late January!  I get to work again tomorrow.

     I ran tonight putting in 5.14 miles in 58 minutes and 52 seconds.  That is very slow.  Yet I was working so hard I was sweating profusely, despite temperatures in the upper thirties.

15 March 2021

 

     I was at HSU this morning when two nurses were discussing the joke of the day they post on the dry erase board.  I chimed in, but they both completely ignored me like I was an entity from another realm that cannot make contact with this realm.  It is the whole situation where prison staff just do not see us as fellow humans.

     It is cold and brisk today.  Those robins probably wish they had waited a few days longer before coming north.  Yet when I was running, I saw more than yesterday.

     When I was running, I believe I came up with a solution on how to study folds in a sweatshirt for a painting I am working on.

     I will put my coat inside my sweatshirt and try to stand it up.

     It is snowing!

13 March 2021

 

     I was walking back from HSU this morning, with a low rising sun behind me, and my elongated shadow looked like an Alberto Giacometti sculpture.

     I went into UW Health for my interthecal chemotherapy yesterday and learned my spinal fluid from the week before was negative for cancerous cell.  We may be able to move forward with the CAR T-cell therapy.

     Dr. Pophali, who will be taking paternity leave, has set up more IT chemotherapy for next week.  Followed by biweekly interthecal chemotherapy, to ensure we keep it out of there.

     In a few weeks we will collect my T-cells, which will then go to a lab, for three to five weeks, for manufacturing into chimera cells with a virus.  They will then be introduced to me inpatient, so they can attack the cancer cells. 

     I just might see 2022.

     This is some incredibly advanced Sci-Fi stuff.  It is like I am living an episode of Star Trek, except at the end of the episode I really will be dead.

     I received a receipt for a returned check from Edward R. Hamilton, Booksellers.  It appears that they were out of three of the five titles I orders.  My guess is they have the Albrecht Durer and Frida Kahlo titles.  Frustrating.

14 March 2021

 

     I went out on a five-mile run this morning, which, had it not been for the Daylight Savings time change, would have started at 6:25 am.  I did see some sand hill cranes fly overhead.

     I saw my first robins, and there were several of them, this spring.

     I am continuing work on a couple Mug Shot collages.

     I am very tired today.

11 March 2021

 

     I ran my fifth straight five plus mile run today.  Like the first four days, it was slow.

     I received a letter from my friend Carla tonight.  She is a lymphoma survivor.  She recently had a CAT scan that revealed a four inch tumor.  She has a PET scan and an oncology consult scheduled for the seventeenth.

     When I read this, I felt sick to my stomach.  I hope she does not have to go through the hell I have gone through the last twenty plus months.

     She told me when she was originally diagnosed, she did not go through all the pain and sickness I dealt with. 

     I never knew a person could experience as much pain and sickness as I endured in the second half of 2019, plus in a few stops since.  To think she might have to endure that is haunting.

8 March 2021

     Kewaunee County turned down my petition to modify my sentence.  This means, unless the Parole Chairperson decides to grant me extraordinary parole, I am serving a de facto life sentence.

     Jeremy Husbeck came around with a printout of my artwork from Artforum and had me sign it.  That was nice, and super cool.

     I ran another five miles today in beautiful weather for early March in Wisconsin.  Fifties and sunny.

     When I was running, I was daydreaming about running Al's Run with my dad.  That will not happen.

     It is not often a person can work on their tan in Wisconsin during March.

7 March 2021

 

     I ran five very slow miles today.  Although I seemed to get a little extra, still slow, at about the four mile mark. 

     It felt really good to get back to the regular recreation track, in lieu of running on that tiny courtyard.

     I worked on my painting, Still Hunted for Their Pelts, yesterday.

     I am into my second chapter of Catherine Hewitt's Renoir's Dancer: The Secret Life of Suzanne Valadon.  Valadon's mature work is more Postimpressionist, despite being contemporaneous with the Impressionists.

6 March 2021

 

     I went to UW Health yesterday and received my interthecal chemotherapy.  Why there was a nine-day gap between treatments was not discussed with me.

     UW originally wanted me to undergo the interthecal chemotherapy twice a week.  However, RGCI did not want to transport that often; therefore, they accepted once a week.  Nine days is not a week.

      I learned that when I was first admitted to UW Health, as an inpatient in late January, 72% of my B-cells, and T-cells were cancerous!

     My white blood cell count was low again.  Additionally, my hemoglobin numbers were down this time around.

     I haven't noticed difficulty breathing when I run although I have not exactly been moving all that fast.  I keep telling everyone I am the fat snail.