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.