My recent post on dealing with change and adversity was inspired in no small part by a change I am facing in my own life, one rife with uncertainty and heavy with anticipation. The last CT scan I had showed that my primary tumor, the one by which we gauge progression or lack thereof, was still within the technical boundaries of business as usual. That is to say, its lateral dimensions had not changed significantly since the previous scan, and overall had not grown enough over the similar measurements from a year or two years ago to precipitate anxiety. But CT scans are, for lack of a better term, a bit fuzzy. The images are fairly clear, but the data is difficult to measure with absolute precision.
Because CT scans are essentially three-dimensional, but are viewed on two-dimensional screens, comparisons between scans are inherently imprecise. The angle of a subject’s body, how inflated the lungs were, the position of the subject within the imagining chamber, all figure into subtle differences between the final scans. On top of that, because the images are basically multitudes of cross-sectional snapshots, a comparison must be made by selecting the closest approximation to the “same” image between scans from different times. I’ve looked at lots of these — in fact, I keep digital copies of all my scans for reference or posterity — and I’ve used the tools to line up and measure my tumor as best I can.
And in two dimensions, at the standard viewing cross-sectional approximation, my mass looks very similar from scan to scan, every three or so months since this process began. My chemotherapy was clearly doing what it was intended to do, which was to prevent progression of the disease. Progression is generally defined in terms of the length of the tumor, but we all know that tumors are bundles of cells that grow and change along more than just one axis.
I was never under any illusion that the chemo would cure me — there is no official cure for Stage 4 Lung Cancer. Any time that the chemotherapy could afford me by maintaining stasis has been considered a luxury and at over two and a half years on this particular regimen, I have been the longest continuous success case that many on my medical team have known. So the next time I see most of them will be a special, bitter-sweet occasion.
Because the time for change has come.
Oddly, as has been the pattern for me in so many ways over these last three eventful years, I feel really good. In fact, after my last chemo infusion the effects wore off comparatively quickly and I am, for a few days at least, feeling suddenly better than I had for so long. The fatigue that normally plagues me has been greatly reduced and my mental clarity is staying at peak levels longer than I am used to. It is as though my body is pretending to be entirely normal, nothing to see here, move along… And this, on the heels of realizing that it was only a matter of time before the tumor would progress significantly, perhaps suddenly, and thrust me into a new phase whether I wanted it or not.
Or I could embrace the realization that, linear growth or not, the shifting outlines of cross-sections were clear in their meaning, if not in their definable edges. My chemo had done its job and it had done it well, but the cancer was becoming less responsive, developing resistance, or simply multiplying beyond what the chemotherapy was killing. It could be a slow process, perhaps I would have another quarterly scan or two showing how slow, but in the period between scans there might be the chance for new metastases. And weighing the options, it seems that it might be better to shift gears early and try a new approach.
In a few days, the results should be coming in regarding a new genetic profile being done on my preserved biopsy. If new markers are discovered, I may be placed on a targeted therapy that could potentially knock down the amount of existing cancer cells in my body — many new markers have been discovered since my diagnosis, and some of the new drugs designed to attack them seem to work quite well. But I am hoping that no new markers will be found,
If I fit the profile, which so far I appear to, there is a strong chance that I will be able to enter a new clinical trial for a combination immunotherapy treatment. Single immunotherapy drugs are available on the market already, and these might also be possible options, but they do not work for every patient. In combination, however, immunotherapy treatment has been shown to be dramatically more effective than single-drug treatment. This prospect truly excites me, even though it would mean potentially dramatic changes to my lifestyle.
Either option, actually, would mean big changes and no guarantees.
I have been quite fortunate over the course of my treatment to have had few issues with side effects. Certainly, I have had plenty to deal with, but they have not been as severe as many other patients report, or I have had a comparatively easy time coping with them. My oncologist told me that if I go onto a targeted therapy, I should expect that my side effects will be worse, based only on the fact that I appeared to tolerate my Pemetrexed (Alimta) so well. But targeted therapy would also be easier to administer since it generally comes in pill form. So, less time out of my life sitting in a clinic, but probably more time sitting around being sick. There are always trade-offs. And I don’t know yet how long to expect that process to go on or what to expect after it is done. On the other hand, immunotherapy generally has fewer side effects, which I really love in concept, but it requires more frequent and longer infusions at a less-convenient location than the one I have been spoiled with. In short, regardless of the chosen option, my routine is going to be disrupted more than it has been and the road, at least temporarily, will be a lot bumpier.
But the payoff has the potential for being huge. I’m not expecting Powerball huge, but the odds are hands-down better than the lottery for collecting something more valuable to me than money.
On the last day of July, I will be going in for my 40th and final infusion of chemotherapy. I’ll say my goodbyes to a staff that has taken amazingly good care of me for nearly three years. I’d like to think of it as a celebratory day, though I doubt it would be appropriate to bring out the party hats, kazoos, and confetti. But then, when have kazoos every truly been appropriate?
Afterward, I’ll have a few days of feeling questionable, being a tad furry-headed, a touch ill in the stomach… Then I will enjoy a month of feeling as normal as I will have felt in a long, long time. I’m not even sure what it will be like, not going back for a treatment of any kind after three weeks, just getting to the point where I feel good again and — maybe even feeling better. I’m practically giddy in anticipation just over that simple notion, forget about everything else.
I’ll have all of August to just feel “right.”
Then comes September and change…
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Thank you!
change is coming and my hope is that it will be very positive, will work well and you will flourish…we are all in this together and you, Jeffrey, are an inspiration for all…
Of course, it is wonderful knowing that there are family and friends swimming in this mucky water with me. It does make it a lot easier to stay afloat.
Our thoughts and prayers are with you, Jeff. Hoping for a terrific outcome in the upcoming months. Hope also that we can get together again on one of our visits to the LA area. You don’t need to be reminded, but I’ll say it anyway. Be strong!
Thanks, Tony. You guys are awesome and I do hope to see you next time you are here.