That ugly image of the open wound is my thumb. It is but one of the nine cuts that currently reside on my fingers. No amount of topical steroids, bag balm or liquid skin will make them go away.
I am also dealing with pustular acne. At the moment, maybe nine little spots. I am given to understand that it can get a lot worse.
One is supposed to leave this sort of thing alone. However, I dare you to simply walk around with a pus-filled little (thank god for little) lesion on your face. No, my ego is sound but not that sound. Anything with the word pus in it must go.
Fortunately the topical antibiotic seems to help. Help is nice but I’m shooting for eradication.
I share this with you (TMI, I know) because, once again, I feel it is important to stress, illustrate, underscore the hoops that those of us with cancer will jump through just to stay alive.
Yeah, I am thrilled about that 57% response. Beats no response or progression all to hell. However, side effects that include spontaneously splitting finger tips and acne of the pustular variety are their own special form of devil’s stew.
So ye who are naturally resplendent in health, rejoice. And regard, with both compassion and respect, your fellows who endeavor to become healthy through unnatural means.
What you are looking at are my before and after scans. Evidently I was mistaken about any previous scans after starting the trial–this is my first one. Out the door goes the fever theory (maybe–I kinda like the image of the cancer being incinerated). At any rate, as I am on my back while in the scanner, that is my left upper lobe on the right side of each individual image, and my right on the left. And the scan on the left is the most recent one.
This represents, according to RECIST, a 57% response. If you look closely, there was a whole wad of schmutz on the bottom of my left lobe which has just about disappeared. And the greatest area of consolidation, on the upper right of that lobe, is much less diffuse; some adjacent tumor smaller. There was also some activity beginning on the bottom of my right lobe which is no longer discernible. Without question there’s more unimpeded volume/room for air to circulate–ie: breathe.
Just call me a happy camper. Next on the agenda? I want to boost that response to 70%. And then I plan on sustaining it.
Two awful landlords, two impossible moves. Three clinical trials. One full year of infusion and all its attendant side effects with a few unexpected ones thrown in just for fun. A global pandemic. Business partners who (ahem) took financial liberties.
Becoming increasingly breathless, dealing with alopecia as well as mucositis and skin issues, I somehow continued to online date. That was, in retrospect, insanity.
That I have emerged, not only alive, but on the road to some sort of recovery, self esteem alive and well, boy howdy. Implausible. Unlikely as fuck. But, for the record, true. This, I can vouch for.
Kumo and I just returned from our second walk today, during which I was taking my customary long strides and deep, deep breaths.
Two weeks ago this was not possible. My fitness had declined to the point that it was, frankly, becoming more difficult to move around.
My lungs have been through a hell of a lot. Not once, not twice—again and again over a period of sixteen plus years. And yet, given the opportunity, they are still capable of a good deal of bounce back. This is something I do not take for granted.
Three weeks ago I would have said that it was unlikely I’d be here for next Christmas. Now I am back to measuring time in years versus months.
Although I don’t have actual RECIST measurements back from the trial radiologist, I do have the assessment of my two oncologists. A “Wow, they do look great!” and a “‘Flipping amazing’ just about sums it up.” And then there was my friend Dr. Jack West’s comments from twitter, which I don’t imagine he would object to my sharing:
Yesterday was all about personal celebration, but today I thought about the greater impact. When I entered this trial, I was advised that the best response had been stability. Although that wasn’t going to be good enough, it was what I was going for. Today I confirmed with Dr. Lin that my scans likely represent between a 50% and 70% response. Which is a heck of a departure from stability. I also confirmed that up until yesterday, stability was still the best overall response.
Today I imagined researchers, other cancer patients, and even pharma execs doing the happy dance. This is so much more than a personal victory–a response of this magnitude represents capital H Hope.
So yeah, this a BFD. And I couldn’t be more pleased.
Alright. So I fantasized that my fever last week was burning out the cancer. I imagined it like toasting marshmallows, with that bad part of my lung just crisping away to ash.
WELL, ladies and gentleman, boys and girls, have I got some news for you. I had a scan this morning and it shows fucking reduction! Never, ever, did I expect to see this kind of positive response at this particular juncture. As I read it (the first time!) I even thought for a moment that perhaps it was a mistake–someone else’s radiology report. But no, that’s my cancer they are describing and it is GETTING SMALLER!
Although I tested negative for COVID, I think I have the flu. It’s been more than a week since I first started feeling crummy. Yesterday my fever was only low grade and by evening I felt well enough to cook myself some roasted potatoes and a salmon filet, which I washed down with a glass of wine.
I woke up feeling poorly again and although I am currently fever free, I’ve had multiple bouts of both diarrhea and vomiting throughout the day. My nurse Lisa advised getting in touch with the on call Doctor at the cancer center and so I did. A prescription for Zofran is helping immensely, and my dinner was lentil soup and gatorade.
So. This is the second time I’ve likely contracted the flu even though I received the vaccine. And I’ve been basically home or studio bound, and super cautious when I do venture out.
The moral here is that we can get ill even when we take precautions. Sometimes seriously ill.
Fortunately I am nowhere near as sick as the time I came down with Influenza A in January of 2011 and was subsequently hospitalized.. However, my current illness suggests that even once the vaccine for COVID becomes widely available, we will need to remain vigilant.
My friend Kique sent me this wonderful alpaca hat from Peru. Kique is Peruvian and we met when I spent two weeks in Lima with A Fresh Chapter.
This hat is wonderful. As is my friend Kique. My hair is growing back very slowly, and this splendid chapeau keeps my little head warm.
I apologize for my outfit in the photo–due to illness, this has been pajama week. Generally I wear clothes in public which in 2020, means sweat pants and hoodie. So I have temporarily downgraded.
Anyway I took the photo to send to Kique but then I realized how well this hat highlights my Sami lineage. The Sami are the indigenous people of Sweden, Finland, Russia and Norway. And through the strange workings of genealogy, I appear straight up Sami.
In reality, I am only 1/2 Swedish. But I would argue 100% Sami.