White to Black (Update 10)

I acknowledge that the last post in this series may have been a bit bleak for some readers, nevertheless the progress of my illness has accelerated in the past two weeks and now I am in a fairly desperate situation – -read on then for more bleakness- – perhaps this blog could be renamed ‘the Road’ (not my wife’s favorite film, BTW).

Though I had very much wanted to avoid it, I have had to go to hospital twice in the past 10 days; once in an ambulance, and once where I was admitted as a patient to my local hospital now nicknamed (by me) “Guantanamo”. I have been experiencing some strange symptoms in recent weeks, however these are now explained; unfortunately the explanation does not provide anything in the way of comfort — facts have that annoying habit at times, do they not?

One of the strange cognitive symptoms is that I have lost the ability to do the New York Times crossword. Now, I know I’m not going to get a lot of sympathy here because many people cannot do it at all; however, my ability has certainly dropped off. At one point in the last few months, I had done 78 consecutive puzzles without looking up answers or hints; however, now my best streak now is just 2 consecutive puzzles.

I have recently discovered that I can no longer sign my name or write in my usual handwriting. This is not due to problems recognizing how to write my name; rather, it is due to my inability to produce the fine motor skills involved in signing my name. It is rather distressing to lose this ability all of a sudden.

At the beginning of this week, I had an episode where I consumed a cough medication (Robitussin DM) that didn’t agree with me. I ended up running into the bathroom and throwing it up and having a bout of diarrhea. While I was sitting there, I started asking my wife why my head hurt. (Referring to a cancerous growth on my head that I’ve been receiving treatment for over the past month.) For a moment, I didn’t seem to recall that I had cancer on my head or that I’d received any treatment — all I knew is that it hurt. I also didn’t know why I was in the bathroom just after going in there. My wife found this conversation distressing, so she called our doctor at Dana Farber and he insisted we call 911. So, the ambulance came, they took me out on a stretcher to our local hospital. While I was in the ambulance, they hooked me up to an EKG. The EKG showed that during the ambulance ride, I had a “V-Tach” episode. Normally my heart is an extremely reliable ticker — 65 beats per minute pretty much all of the time. However, during the V-Tach episode, my heart raced up and down, climbing as high as 125 beats per minute, I think.

The doctor in the emergency room was concerned about this and the confusion that my wife described, so they did a CT scan of my head. The scan result showed that I had 2 large lesions (tumors) on my brain, which had heretofore not been known about. So now I have cancer in my brain as well. While I’m fond, generally, of collecting the whole set, this is not one of the things that I wanted to have. In the past several months, while other parts of my body were failing me, at least my brain was working well. It did provide, however, an explanation for the weird cognitive issues I’ve been having. Not just cognitive issues — I had also been experiencing strange tongue-swelling episodes and numerous ocular migraines. At this point, the emergency room doctor wanted to send me by ambulance into Boston to Brigham & Women’s Hospital. I was hardly enthused with the prospect of being admitted. I hate hospitals. And I hate having roommates, because I always seem to get stuck with very disruptive people in my room. The stay at the hospital the week before included a roommate who had the TV blaring Loony Tunes all night at high volume and then threatened to punch the nurses in the morning.

Once I heard about the brain tumors, I decided that I wanted no further interventions in my cancer journey. I want no more blood draws. I don’t want my vital signs taken any more. I want no more scans. I want no more stays in hospitals. I don’t want to meet any new doctors, and I don’t want to put my family through further anguish and inconvenience. So I have decided to end my treatment and start hospice at home. This was not a spur of the moment decision, but rather one in which my hand felt forced by circumstances. The medical providers have pretty much run out of treatment options, and I am not interested in the ones left, especially because the medical team says they likely won’t do much. I have already been thinking quite a lot about how much longer I wanted to continue treatment, given that it has left me debilitated and wracked with pain on most days with no real prospect for improvement.

Once I decided that I wanted to shift to hospice, and since it’s possible that not every reader will know what that means, perhaps I should explain it… Hospice is an organized medical procedure where I’m kept out of severe distress and pain as I die. It’s essentially managed death when there’s little to no possibility of improvement or cure for a terminal patient’s condition. once I decided that I wanted to go into hospice, I felt a relief. I had been weighing this kind of decision for a while now. Given the new reality with both the spread of the disease and the narrowing treatment options, it was an easy decision to make.

That decision reached, the only task I had now was to finish the palliative radiation treatments because you have to complete those before starting hospice due to health insurance requirements. Here, I could write an extended diatribe on how stupid the insurance-based system is, but I’m not going to bother. I’m now done with the radiation treatments and the chemo and hospice starts in another day or two. I’m starting to have conversations with people, where — when I say goodbye, it’s a more of a final goodbye — so it’s a difficult point to be at. A lot of tears to flow yet. My wife and I have completed the previously-unfinished portions of my will and all the medical directives. It was very important to complete those documents, so I’m very glad to have that done now. I have also had heavy conversations with some friends and family, letting. them know of my decision, which of course has not been easy. Throughout the past few weeks, I’ve continued to receive supportive comments from readers, and have also continued to receive incredibly generous donations to my GoFundMe campaign. We still have financial needs in that regard, so if you’ve been considering donating to the GoFund me, please give it further thought. The money will go directly to my wife and child. It will help to defray upcoming burial costs, pay any remaining medical bills, etc.

A further note about some comments I have received: I’m not sure what it is about the fact that I’m dying and have made this public news, but it seems to bring out the bible thumpers. Although I appreciate when people let me know that their thoughts or prayers are with me, I find it strange and unhelpful when people try to push their belief system on me or tell me that I could have been cured had I been a more religious person. I believe that someone who harasses someone who is dying of cancer and questions whether they have faith or not isn very “Christian”- – even though all of the messages of this type are from people who say they are Christian. now, I spend no time on this blog talking about religious beliefs, nor do I seek to push things like that on others or interrogate them on their beliefs. One person last week left a comment approximately 3,000 words long replete with stories about how Jesus spent his time on the cross with 2 thieves -chock-full of numerous other biblical references, once again telling me what to think and believe. I have the feeling of being apiece of carrion circled by a species of vulture, who see a in me a person who they can somehow add to their tick list, maybe thereby obtaining some special cred at their local church or something like that? Do you get merit badges or some such thing? Fortunately, the blog comment section here will reject comments with too many words. And I have since taken the extra step of blocking comments containing certain religious words and phrases. Once again, I appreciate good wishes from religious people, just not proselytizing. Please give it a rest.

Kind words from readers in recent months otherwise have really kept my spirits up during a very trying time. I am deeply grateful for the support I have received. Experiencing so much kindness at the end of my life has left me with a brighter picture of humanity. It’s deeply meaningful to me to know that I have touched so many people’s lives. You have certainly touched mine. Thank you.

There may be only one post left in this particular thread and my wife will probably write it.

I hope you will keep striving to follow the trail I have tried to blaze in pursuit of the art of carpentry. It’s not about copying me – it’s about finding your own way. Express your values through your artisanry. The art of carpentry is a deep pool with much remaining to be explored. Why content oneself with merely treading water? I believe I have only scratched the surface myself.