Hello dear ones,
It’s been about a year since my diagnosis, and I’m afraid I’m back in the hot seat of treatment again. Since about September of 2018, I’ve been off of high dose infused (i.e. injected) chemo, and on a comparatively “easy” oral chemo/immunotherapy mix of auranofin, sirolimus, and pazopanib. Unfortunately, not only did that not really work (in that there are a few new areas of cancer growth), but especially in the face of going back on rougher drugs, I also have to come to terms with the fact that this has also not been easy. If it seems a little odd that this is dawning on me now, know that I am so freakishly optimistic about my own capacities that I’ve pretty much never been able to identify the hardest times in my life until they’re over. I don’t know, in the thick of it I just plow along until it’s over. But I can’t do that here. I have to be a little more strategic or I won’t make it through this.
In any case, what has unfolded over the last few weeks is that I have a brand new metastasis in the paraspinal area of my lower back, which is relatively easy to treat, and a couple preexisting areas in my right lung, which are trickier. We’re treating all of them with radiation, which involves doing scans and a simulation, then a week or so of planning by the radiation oncologist and physicists, then the actual treatment days. Three days for my back, now complete, and fifteen days for my lung, to be started as soon as the planning is finished. Totally separate processes for each area. Trying to schedule all this, and office visits and scans and everything, when we’re not living in Cleveland, where I’m being treated, is obviously a logistical nightmare, and weather and nerves about flying during the shutdown haven’t helped. We flew one time, drove the next, and arrived back home on Saturday. I’d just been informed that the growth in my lung wasn’t just a little nodule on the edge of the lung. .. The pet scan that my oncologist was secretly fighting my insurance to add to my schedule had revealed activity in the hilum of my right lung.
What’s a hilum? Good question. It’s the root of the lung, essentially, the point where all the air passageways originate, and it’s right next to the heart, nestled in a bunch of lymph nodes. In general I don’t buy in too heavily to spiritual interpretations of physical ailments, especially when it comes to cancer (I’ve read a couple too many resources that push the idea that patients must find the “source” of their own illness in their own psyche or whatever, and frankly it seems mean spirited and victim blamey to me.) But. It’s hard to look at a scan showing a blob of cancer right in the very core of your physical self — a part of your body that you didn’t exactly know existed but you now realize is right at the convergence of your breath, heartbeat, and immune system, and not feel a little… I don’t know, personally attacked. Not to mention, no one needed to tell me that if we do NOT succeed in treating this particular blob, it will simply kill me. It’s not operable, so this is what we’ve got.
Well. This hilum stuff emerged last week, and as I said, we finished the drive to Charleston on Saturday, with my next appointment in Cleveland the following Tuesday (of this week). I was emotionally and physically drained, so essentially gave myself Sunday to wallow, with Monday reserved for packing and handling whatever handful of tasks off my to do list seemed most panic-inducing. But in the early hours of Monday morning, I starteded getting chest pain. It was sharp and stabbing and scary and worse when I lay on my stomach or raised my right arm or inhaled fully. By the time I was fully awake I was also half convinced that it was the end of the line, that that hilum thing was simply doing me in with no further warning. We started emailing and calling various offices to figure out what to do. Phone trees, messages, assistants… All the things that are annoying on a good day and horrifying on a day when you’re supposed to be packing to fly back for your one kind of life saving treatment but you desperately need to get checked out to see if a new threat to that life has cut in line and is demanding a NEW kind of life saving of some sort.
To make a long story short, I’m in Cleveland. My dream team of caregivers and doctors flew into action and Monday afternoon I got a chest x ray that showed — I don’t know, not much, which is good in this situation. We packed quickly, moved our flight earlier and got here Monday night. We eliminated the final back and forth, and although I’d rather be home of course, it’s a relief to be right on the hospital complex in case something comes up. It also lets us simply schedule appointments as they become available. Speaking of, a bunch of those appointments have to do with… A feeding tube! Yay! And that is not an ironic yay!
Oh, are you still curious what caused the chest pain? Me too! The current working theory is inflammation of the chest lining. It still hurts, and that sucks. I dunno, guys. For the moment, I am tossing it onto the pile of things where I like to toss all my problems for the moment: things that are generically related to my weakened and malnourished state, and will be fixed with a feeding tube.
I don’t want to fully express how excited I am about the feeding tube because I don’t have it yet and it might turn out to be sucky or uncomfortable or whatever. But what I will say is that eating has become one of the most traumatic parts of my life. I haven’t been able to eat a full meal since probably prior to my diagnosis. And to be honest, I’ve never liked eating that much. Or drinking. I’m a super taster, which means I have more taste buds in my mouth than most people, and I’ve always been able to taste every subtle little part of a dish, to a point that is far more annoying than useful. I can discern the slightest bit of spice, the subtlest bit of staleness creeping into grains or beans, whether someone washed a dish with raw egg in it in the dishwasher that also cleaned the dish I’m eating from. I’ve been basically vegetarian my whole life, and while there are lots of great reasons to be vegetarian, my underlying one was always along the lines of “meat is super gross why all the squishy /gristly/fatty/skin parts bleh.”
When I started chemo there was a little part of me that hoped desperately the treatment would just fry those extra taste buds so I could be like everyone else and eat whatever. Instead, they all seem to have risen up to torment me. Not to mention my appetite hasn’t really put in an appearance in months, so every bite I take is essentially force feeding myself. I know it sounds so weird to say that you simply can’t eat enough food to sustain your own body. I mean, I’m a living breathing mammal. But I can’t. Imagine you woke up one morning and had your normal breakfast. You’re full and you take your last swallow of coffee, ready to head off to work. But there’s a glitch in the universe. You can’t go to work until you eat two more breakfasts. Time is slipping away but you quickly make another double batch of eggs and cram it down. Now you do not feel well, and you’re late for work, but you pack your lunch and off you go. Of course, you’re not hungry for lunch, but it’s been a couple hours so you get it down, although usually you’d be done by 1 and it’s like 3 and now it turns out you have to eat two more lunches, so that takes until five and you’re sick as hell and didn’t get anything else done. When you get home, are you ready for three dinners? If not, you will be failing your primary purpose in life, and contributing to your own ill health and eventual demise. And tomorrow, if you missed that last dinner, you’ll have to try to catch up, plus continue on with your three breakfasts, etc.
That’s my best effort at describing the true nightmare of trying to cram a healthy diet down my extremely uncooperative gullet day after day and month after month. And I’m over it! So Friday afternoon we’re scheduled for a PEG tube placement. Although it’s not the kind that goes up your nose (hell no, I’m terrified of having stuff up my nose), they do have to thread a tiny (1 mm) tube through the nose during the placement. I’ve been promised sedation that will keep me in “La la land” so if you feel like tossing up a very specific prayer for me, it’s that the sedation is better than my biopsy sedation (which was described to me as “a good time” in advance but was actually just “sobbing on the biopsy table, but in a disoriented way”) and I don’t have a nose-related panic attack Friday.
Oh, and I’m also happy to report that through all this, that primary pelvic tumor is still looking deader than dead. That in itself is rather miraculous… So let’s see if we can get a couple more little miracles lined up here. Or at least a good flow of calories to prop me back up for this next round.
PS this last week I and my beloved friends sent out a plea for work opportunities for my family who is caring for me, and donations to the gofundme. Our community SHOWED UP and we have about a dozen leads on work and an extra $15K in the bank. As stressful as all of this has been, it feels like a major miracle to be able to do this treatment without panicking about money on the regular, not to mention that when I’m feeling the shittiest, I remind myself of the hundreds of people who have pitched in to help me get through this, and it makes me feel better and stronger every time. So as usual, thank you seems like a truly inadequate response, but: thank you.