Humans are natural skeptics. Hard evidence is always favored over hearsay.
The problem is, not everything is quantifiable. However empirical evidence (say, those bloody finger tips of mine) remains both highly evocative and generally not open to question.
If I tell you that I am depressed, what you may imagine is likely far more vague and nebulous than my actual experience.
Being sad, for months on end, is like sleeping on dirty sheets. Drinking from a grimy glass. Looking through a filmy window.
Sadness without end is, to my mind, far worse than any physical ailment. Pain can be controlled–psychic agony only modulated or dulled, and generally done in such a way (antidepressants) that not only the edge but the gloss goes off of every interaction.
My hands still hurt. My tongue too. And my creatinine kinase remains elevated. Pretty damn sure my cancer is still there, as is the pandemic. My car has almost 180,000 miles on it and I still haven’t paid last year’s taxes. I have a few nagging worries. The same ones I had last week plus some. But I also have a little spot of light behind my eyes. A glint, a gleam. A safe, well lighted space.
Manageable. Another word j’adore because it doesn’t over promise.
To say that something is manageable doesn’t presume that there is no challenge, but clearly states that something can be accomplished without great difficulty.
My side effects of treatment are currently highly manageable. Flipping unbelievable given the fact that not so long ago I was ready to call it quits.
Instructional, this. One of the inherent difficulties of cancer is that the cure (aspirational) is often worse than the disease. And to think that I might have stopped a treatment that is essentially keeping me stable due to mucositis and over the top depression–both of which are currently manageable.
Damn. It’s spooky, particularly given the fact that I am now two years into progression, and that two years was the ball park survival stat we initially arrived at.
Too much of successfully addressing cancer is right place, right time. Had I not gone in for a COVID-19 test and encountered a nurse who had worked with head and neck cancers, I likely would not have discovered the product that is keeping my mucous membranes almost sore free (2-amino-4-carbamoylbutanoic acid disaccharide complex). And had I not been so emphatic per my degree of depression, an additional (and highly effective) anti-depressant would not have been added to my regimen.
So yes, chance. But also–and this is the part we do have control over–relentless self advocacy.
It still sucks to be going through a pandemic while also battling a terminal illness. But it sucks way less than it did a couple of months ago, when I was ready to throw in the towel.
I am back to that magical place where I say to myself “I can do this”. And that, my friends, is the essence of hope.
Somehow, someway. Kind of my go to motto these days. Slowly but surely I am figuring this shit out.
With the mouth sores under control (hallelujah), depression remained my biggest problem. I had a virtual meeting with a psychiatrist and we discussed the possibility of trauma therapy. I have yet to receive a referral (it was a year wait for the trauma therapists at MGH), but in the meantime she added an antidepressant to the prozac I take daily. It’s called mirtazapine and I am on 15 mg in addition to 40 mg of the fluoxetine. It seems to be working, as my mood and energy level are both elevated.
Stable cancer, manageable mucositis and mood. A week from tomorrow I am scheduled for yet another infusion of DS-1062a.
Yesterday morning I began my book FOR REAL. I am nudging myself into a schedule—art studio in the a.m. (while it’s still cool) and writing the rest of the day, with some walking, exercise, and meal preparation in the mix.
There is a freight elevator in the old mill where my studio is located, but I choose instead to walk up the four flights of stairs daily. I am working on becoming stronger, and those steps are an opportunity.
I am also starting to be out and about more–even going to some thrift stores. Of course I wear my mask and am careful about hand cleaning, but I refuse to remain a hermit for the next year or two. I need to be social, if only in a limited fashion. In fact, this weekend I shall be meeting two of my kids in the Boston Common for dinner—the first time we’ve been together in months. It took some convincing on my part (that it was ok) but again, one has to weigh the benefits against the risk.
Two months ago I didn’t think I’d be feeling as hopeful as I am right now–I came awfully close to saying uncle. The trick was finding the correct antidote to the side effects of treatment. A workable balance between the quality and the quantity.
The start of a new painting
Physically, I am thriving. The wheeze in my chest is only occasionally noticeable and I rarely cough. More comfortable at night, I now sleep soundly and wake feeling rested. I feel hungry all the time, and have gained at least six pounds. In fact, aside from some daytime fatigue (an expected side effect of the Alimta), I feel really great.
Not surprisingly, things have been looking up in the emotional department as well; I’ve got my mojo back.
Obviously my improved physical state has come into play. However, there is more to it than that. Some months back, I came as close as I have ever come to losing hope: it seemed that my personal challenges were just too great. When I say this, I am not merely referring to my cancer, but rather insinuating a more general crisis of self.
I shared my sense of despair with a few trusted individuals. I was clear eyed and practical about what I could and could not change. There were some difficult weeks where my focus was on merely getting by. However, during this time I was making some important decisions. One, I was going to start getting my affairs in order (more about this to come). Two, each additional day I got to spend with Peter, my youngest child, was a gift. And three, I was going to stop procrastinating creatively: I would draw, write, assemble and paint as if my life depended on it. And by doing so, maybe I could finally achieve some financial independence.
The image above is of the painting I am now working on. My reference is a black and white photo from the fifties of my very beautiful mother and her friends at the beach. Often when I start a painting I just dive right in, but this time I sketched the scene in with graphite first, just as I had been trained. And I have been painting with real direction—I want to get this painting done and move on to the next one.
I am fat with purpose.