I’ve stared at this blank page (before I finally started writing on it) for three days now. I always (until tonight) write my title first, then meander through the body of my post, sprinkling pictures along the way, kind of like Blogpost Tinkerbell. But I am roadblocked at a title, because I can’t decide how I want to present my latest cancer news. It’s not a fluffy story that would end the local news, BUT let me start by saying, I’m not dead yet. And don’t plan to be any time soon. However, the detour in to Radiationland (or something else) that I’ve been waiting for for months has presented itself like the proverbial fork in the road. We/I have decisions to make again.
I’ve known something just wasn’t right since I came back from Pelotonia… before, actually. If you’ve been part of an athletic activity with me in the last few months, you’ve heard me mention (but not complain) that whatever we’re doing is harder than usual. Or that riding/running/hiking/walking up stairs seems to be getting more challenging, not less. And I stop a lot. It’s not something I can gut through like I have all my life; I feel like my heart is going to blast through the pain hole my sternum. Besides, I can’t breathe anyway. Then came the part where I thought I’d cracked my ribs in the back.
When I came back from Pelotonia (August 5 weekend), the pain on the left of my spine, in the ribs, took my breath away. It felt like my ribs were broken, if I really knew what that felt like. It hurt to breathe, laugh (!), even lie on my back. I wondered out loud to at least a couple people that maybe this was those two tumors that were near the nerves in my spine. They suggested it was more likely ribs being out of place after being on the bike for 12 hours over two days, then getting on a plane for half a day. It sounded feasible to me, plus Advil and my chiropractor made it feel better. Damn, I hate being right sometimes (not usually, though).
It’s never, and I mean NEVER, a good sign when your doctor walks in the room and says, “We have something to discuss.” My CT scan was again, a mix of good news and bad news, but this time I have to act on the bad news. At least one of the small lesions near the nerves in my back had the audacity to grow slightly toward the nerves. That’s why it hurts, but not all the time. The pain comes and goes, and I can definitely make it worse. (“Doc, it really hurts when I do this.” “Then stop doing that.”) The lesion in the pericardium (heart lining) grew about 2 cm to its current 3.7ish cm in the last year. that explains the shortness of breath, coughing, and fatigue. Dr G isn’t as worried about the size of that tumor as the fact that it’s growing. The rest of the tumors in my pleura are stable or smaller. That means while we make decisions, I will say on the milciclib maleate because it still seems to be working.
The tumor(s) near my spine will be radiated, which Dr G says will eliminate the pain in two or three sessions. They are easily accessed, with nothing in the way. The heart, as it always is, is more complicated. Radiation could be dangerous because, duh, the heart lining is right next to the heart. The Tumor Board at Georgetown/Lomardi is going to discuss whether to give it a go on Wednesday (October 4, for those of you who are reading this on October 5). There is an amazing development in this, although it’s a longish story, here it is. (Run on sentence alert.) Last year, I was at Mayo in Scottsdale doing a story on their new Pencil Beam Proton therapy. It uses a different kind of radiation, which stops at the tumor instead of potentially causing damage on the back end. And it can deliver a higher dose of radiation to a very precise (pencil beam) location. I reached out to the doc I interviewed. Not only does he think this could work for me, he is going soon to Lombardi/Georgetown to lecture specialists there on how to best use it. Because Georgetown got a 15-ton proton accelerator for this therapy last year. And it goes on line this month. Remember I’m the one who looks for and pays attention to signs.
Surgery is another option, but it sounds gruesome to me. I’m anticipating it would be a chest-cracker and I’m not sure I’m up for that. I’m not convinced that a scalpel in a human’s hands is a better option than a pencil beam of radiation. It may be, I just haven’t decided yet (nor have I had the chance to make that decision yet). Thanks to the amazing surgical team at Florida Hospital, I was able to avoid that four years ago when the original tumor was removed. That was a blessing, and remember, I’m the one who looks for and pays attention to signs.
My own expert analysis says going back to Sutent is a logical option as well. Sutent was my first clinical trial. We know it shrank the tumors impressively but also annihilated my white blood cell army like Matt Damon did to the monsters in that dumb (but addictive) movie “The Great Wall.” This time around, though I’d have to pay for it ($14,000 a month) or try to get it under compassionate use. I would have the option of Neulasta or Neupogen to dope my WBCs back into relative abundance, though. Just an option “C” on the table.
I know part of my lovely fall is most likely about to be be blown apart. I’ve been in that movie before. I haven’t changed or canceled anything yet, but I have started plotting alternatives for adventures that will fall victim to the detour. I vacillate between thinking this development is bad news or just a very expected detour off my trajectory that came sooner rather than later. My longtime friends (OK, even the newer ones) know I was born without a sense of direction, so detouring off the main trail is not virgin territory for me. (One of my more quoted quotes: “Wait, have we been here before?” followed by “How did we get here?” etc.) With or without assistance, through the long way or a previously undiscovered shortcut, I always find my way back. Bet on me. #Defy.
** That’s the best I could come up with. But it’s now Sunday morning, and I want to get on my bike. I’l do better next time probably. <3