White to Black (Update 9)

I continue to be astonished by the warmth and generosity of readers here, both in the comments shared and in the emails I continue to receive privately. I thought it was time to bring folks up to speed with what has transpired since the previous post. Where I left off I had described my situation as laid out by my last PET/CT scan, namely that the cancer had progressed in a number of areas, that my right knee still had cancer and required a further round of 5 radiation treatments, and I may also have made mention of a bump on my scalp, as well as a small mass which could be felt in the tissue of my left trapezius. Cancer was busting out all over me, and it seemed the response needed was going to be one which addressed it systemically. That meant, given the tool kit available, chemotherapy, which, based on previous encounters, was something which I was dreading and rather unsure about even wanting to embark upon.

First things first though, some areas could be dealt with in a more focussed manner, like my screamingly painful right knee. I completed the regime of 5 more treatments. I was unable to get though this regime using just Tylenol and Ibuprofen, though I went as a long as I could. Once you get to the point where you can’t sleep at night though due to the pain, there’s not much choice, as the lack of sleep has worse consequences. I was then prescribed oxycodone.

The radiation treatments don’t hurt when you get them, however the aftermath is none too wonderful. The goal is palliative, and I knew the trade-off with the treatment was going to be that the pain would be taken away, but at a cost of some trauma to my knee. Radiation is hardly benign. And sure enough, that is how things played out. After a total of 10 radiation treatments, my right knee no longer is in extreme pain, but it feels pretty much destroyed, the bone that is left feeling akin to so much dried-out balsa wood if that analogy gives you a sense. I now fear untoward events with my knee, especially given we are in the time of year where outdoor footing is not all that good. If I were to take a tumble I could break my knee. If I break my knee I would need to have a complicated operation and could end up trapped in hospital, autonomy gone, and hooked up to pain killers I would rather not have to consume. It’s important to me to try and maintain some control over the process as things move into latter stages with this disease. When the time comes, I want to die at home, in my own bed, and not, under any circumstances, in a hospital. So, going forward, I have to be vigilant and careful with my right leg. There can be no slips or mishaps.

As far as taking oxycodone was concerned, my biggest concern about that was getting badly constipated. In the past I have have to make emergency room visits due to blockages caused by other opioids. This time though, I was largely able to stay ahead of that by taking various laxatives and stool softeners with every meal, and did not find myself getting into severe distress.

Another outcome from the radiation treatment was of the delayed response variety. The radiation gave me a rather bad burn on the inside of my knee where the fold is located. At one point, this area looked quite grim – kind of a large orange circular mark with a small black cyst in the middle and I was quite alarmed about it one day when I managed to get a good look at it. I’ve been applying a steroid creme to the area twice a day along with calendula cream and that has been working pretty well. It doesn’t heal very fast though.

The bump on my head was examined and I was referred to a branch of Dana Farber that deals predominantly with people who get small melanomas on their scalp from accumulated sun exposure, common to people in their 50s. Now, that was not what I had, but the surgical treatment is much the same. What they do is more or less like ‘mountaintop removal’. They slice and plane off the top of the bump to create a flattened area, cauterizing the incision afterwards. There’s no pain with the procedure. They said the bump may grow back, and unfortunately this is what seems to be happening, and a lot faster than I would like. I am thinking I am going to have some sort of follow up, but whether that is of the surgical variety or some other approach I have no idea at this point. It’d getting painful to rest my head on a pillow at night, so something will have to be done, and hopefully this does not evolve into anything drastic.

As for the small mass in the tissue of my left trapezius, nothing so far has been done with that. I’d rather not have yet another surgery, but not sure what other options there might be at this juncture. Trying to put out one fire at a time, and all…

I sat down with my oncologist and we discussed options as far as chemo goes. He felt that the drug Taxotere was one which might bring more modest side effects, though neuropathy was one of the possibilities. It was really not an easy decision, but given that nothing else was going to address the cancer growing rapidly in my bones, lungs, and pelvis, and given that chemo is what brought me back from the brink the last time with a combination of 2 drugs, Taxol and Carboplatin, I felt that, if I could manage the side effects, that it gave me the best chance of beating the cancer back to a degree which would offer some respite from symptoms. I received an infusion of taxotere on a Thursday. They administer it with steroids which help to lessen the shock of the drug on your body.

The chemo comes on to you in a way reminiscent of a zombie film, where some character has been bitten or scratched and slowly ‘turns’. And the outcome, where the chemo is hitting you full force, can be altogether similar in effect. Two days after my infusion I was at the ‘praying for death’ stage. Just felt so horrible and so out of it I could barely even describe how I was feeling. The neuropathy in my fingers and arms, though I thought it was about as bad as it could get, in fact got worse. It was like being in the Spinal Tap movie and discovering the stereo went to 11. How to describe ‘worse’? Well, the surfaces of my biceps began to have intense tingling and heaviness. It’s difficult to quantify things like this. How do you describe intense tingling and numbness, let alone changes to it?

The plan was to have chemo two weeks in a row, then one week off. In terms of how I was feeling on the Saturday and Sunday after infusion, I was firmly in the camp of ‘never again’. By Sunday afternoon I had returned to semi-normal operating condition, and by Monday-Tuesday the side effects had considerably receded. And with that comes some reconsideration about having another infusion.

The next week I met with members of my palliative care team. Three people sat down with me for a full 90 minutes and discussed the outcome from my first infusion. We also started talking about having my neuropathy looked at by a specialist, as it seemed likely that it may be resulting from both chemo and from scar tissue post-surgery on my neck By the end of that sit-down I decided to have another infusion. One possibility was that the side effects would be worse again, but it was also possible that they would be less severe with the second infusion.

As it turned out, the effects were much less intense following infusion #2. I am surprised. Neuropathy is still bad though , and I can feel a slight rale in my lungs, and there is the bump on my head needing revisiting soon. The wheels have nearly come off, but not quite yet. Hopefully the shit-kicking of all this will result in the cancer getting beaten back a notch and that will allow me to carry on a month or three longer in a situation of reduced metastatic load. That’s the best outcome I can hope for at this juncture. There is no return to normalcy from here regardless. I’ll never be walking normally again, let alone hiking or biking and it seems unlikely that anything can be done about the neuropathy, but maybe I’ll find a place I can endure in some relative comfort a while longer. It’s not a big ask I suppose, but I have no idea if it will come to pass. I’m feeling like I am at the same place as before: cancer spreading and metastatic load increasing to the point where I will feel in free fall, hoping that the chemo provides a net at some point. Just because it did do just that last time though does not mean the exact same thing will happen this time. I’m taking a different chemo agent, for one thing.

In terms of the emotional well-being part of the picture, it’s been tough sledding, to borrow an image from Calvin and Hobbes. I’m managing to not get depressed somehow. It’s weird to know in your bones, literally in my case, that cancer is eating away at your physical structure without break and you can tell that there’s only so much time left before it does you in. The recalibration each time that you shift from a concept of having number of years left, to a number of months, to a count of weeks. I’m at weeks now. Well, soon enough it will be days and hours for me. But as things stand today how many weeks remain is something I can really only guess at. Then there’s the matter of how many weeks would be nice to have if one could specify. Upon reconsideration, I’d now like to live to not just my son’s birthday, but a month past it. I don’t want to die too close to his birthday if I can help it. I don’t want to set up a situation where every birthday he has would be a reminder of my death.

I’m coming off a period of about 2 years now where my daily physical reality has been characterized by increasing debilitation and pain. I do not foresee any days ahead which will not be this way. I feel a need though to be looking forward to something. I don’t just want to sit around waiting to die, curled up in my bed. If I can make some use of my remaining days I would like to do so. Maybe the chemo will give me the respite I am hoping for and I’ll be able to make it to August. That’s my goal, the one I have little control over. Time will tell.

17 thoughts on “White to Black (Update 9)

  1. We love you Chris, you have given so much to so many communities. Thank you for continuing to share your journey, I know it is helping many and will help many more into the future.

    Words seem so frail in light of all you’ve been going through but I wanted you to know what you share is having an impact and is meaningful. You are an inspiration.

    Jonathan

  2. Chris
    Thanks for your post, even though it was tough reading. Somehow the clear methodical way you approach woodworking comes through in your recounting the various indignities cancer has inflicted on you.
    And your goal to cruise past your son’s birthday is laudable, certainly a gift to him.
    l hope can be (or pretend to be) as strong as you are, when my time comes. Hang in there !

  3. Your lucidity in recounting your experiences is remarkable. In your many posts and writings you have shared so much of your working philosophy with the community that it leaves an indelible imprint of your character, and I cannot think of a better legacy. I say indelible because simply learning about your work has had a lasting impact on how I approach the craft.

    Having milestones to look forward to is certainly important to us all, best of luck on reaching what’s next in sight.

  4. Chris, your outlook is really inspiring. I hope your treatments meet your goals. Best.

    As an aside, I read Lance Armstrong’s book when my mom was sick. At one point he made the point how the cancer patients were the lucky ones, not the “well” people. The reason was the focus that ones life and family come to that the healthy can’t experience. I believe that my mom went through a similar experience in her last months that gave her a serenity and grace that you seem to exhibit.

  5. Hi Chris,

    I sincerely hope that you surpass the milestones you have set for yourself and go way passed your son’s birthday. My thoughts are with you and your family.

    Pascal.

  6. Chris, thank you for sharing your feelings and thoughts…and hopes. I’m in the “years” phase of another disease, also facing the prospect of leaving behind loved ones way too early. I think a lot about unfinished projects, and the “work” of fatherhood, husbandhood and how important the work of my heart and hands has become.

    It’s difficult knowing that those whom you love most will, at some point, have to go on without you. My father died when I was 14, and at nearly 60 I still miss his role in my life. Thanks for opening your heart for others to see.

    Kent

  7. Chris that you are not in depression is a remarkable testament to your character and mental well being..You did so well in woodworking and Japanese language I would I suspect you have the great character in you that knows no quitting. How you have resolved and faced this situation no words can convey the intelligence and inner balance of your being..You must have an inner faith in life that has served you so well along your path
    Working with you was a true joy I only got to experience for a very short time…you were very wise in each step of your life…an admirable natural way with challenges and response to opportunities came so easily to you.
    You are true brother to to so many of us…

  8. I echo what others have said, in addition to all that you have given to the woodworking and art communities, what you are sharing now is making an impact on many others and will continue to do so. My thoughts are with you and your family.

    -Siavosh

  9. Prayers for you and your family. Not anything I can say other than I appreciate you sharing your journey with us. I hope that writing and sharing your burden in some way eases your load.

  10. I wish you the greatest peace and the least pain in these days. I wish the same for your family. When it is my turn I hope I will have the presence of mind to look back at your words to find courage, perspective, and strength. I am genuinely sorry I cannot help

  11. Chris, at times like this words are so weak and pitiful, I don’t know what to say except that you have reached through the ether and touched me with your passion and skill and now with your courage, and sadness as well. Which is good, in some small way I feel a tiny sliver of your pain. I think that is being human.

    -Peace, Harlan B.

  12. hi mr. hall — thank you for sharing your experience with us here. you are a hero and an artist. you are a father and a husband and a son. we are a small cosmos of woodworkers who are no doubt gobsmacked by your work, and your prolific documenting of commissions throughout the years.

    I started following you when your blog showed up on the unpluggedshop aggregator site. your projects opened up an entire realm of possibilities that I’d never witnessed before. every new blog entry continues to reveal a new hall of unlocked doors.

    i still go back to your low slung table and sidebaord in bubinga, _Square_Deal_ . i just marvel at what you accomplished, and i’m sure I am not alone.

    ad astra, forever, amen,

    adam, of Oakland, CA, USA

  13. Chris I have followed your blog for a long time And you are a good woodworker that i admire.
    I hope that you will feel better with the treatment you are getting.

    Jonas Svensson

    SWEDEN

  14. Mr. Hall-
    As an otolaryngologist, aspiring woodworker, and father to a young son, I just came across your blog through your “Ming-inspired cabinet” build videos on YouTube. Your blog posts clearly demonstrate your passion, skill and insight and filled me with both great curiosity and interest but also great sadness. Thank you for sharing your thoughts here and on video on YouTube. I wish you peace and courage, and send you and your family my best wishes.
    Andrew L., Iowa City

  15. I have followed your blog for years and have many of your books. It’s seems easy to have enjoyed your writing and forget there is an actual human person craftsman at the other end. I’m glad you’re getting the care that is available and I hope you great progress. Don’t forget that just as you are a real person writing your blog/books, you have readers that are real people and we are sending good vibes the best we know know how.

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