I take a breathAnd pull the air in like there’s nothing leftI’m feeling greenLike teenage lovers between the sheetsBa, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba ba
Ba, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba baKnuckles clenched to white
(Knuckles clenched to white)
As the landing gear retract for flight
My head’s a balloon
(My head’s a balloon)
Inflating with the altitudeBa, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba ba
Ba, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba baBa, ba ba ba, ba, ba ba baI watch the patchwork farms
Slow fade into the ocean’s arms
And from here they can’t see me stare
The stale taste of recycled airI watch the patchwork farms
(I watched)
Slow fade into the ocean’s arms
(Slow fade)
Calm down, release your cares
(Calm down)
The stale taste of recycled airThe Postal Service, “Recycled Air”
I haven’t wanted to write lately. At least not about the serious stuff. It isn’t intentional. Sometimes, I get into “bubble wrap” mode where I want to be ignorant about the scary details and go into a sort of “soft focus” optimism.
I think that I am in that place right now. I’m trying not to think about the fact that the next phase will likely be reality coming to slap me in the face yet again. I’m dreaming of successful outcomes and potential longevity on my current regimen if everything falls into place. At the same time, I’m almost afraid to even type that out for fear of “jinxing” myself; which the illogical superstitious part of me is convinced that I’ve done in the past. I’m dreaming of soft landings when my own history of this disease should be more than enough to remind me to instead expect turbulence- and potentially a crash landing ahead.
I’m at a decision point in my treatment. My latest CT scan showed growth in my pelvic/ovary met and shrinkage in my largest liver met. My pelvic tumor is now so big that it is compressing my bladder and bowels. I feel pelvic pain in the area referred to in my scans as my “right adnexia” on a daily basis now. There’s another cancer bonus for you- greater understanding of anatomical terms!
So, did chemo fail? I don’t think so. I have heard from multiple sources that ovarian mets aren’t likely to respond to chemo. So if it’s shrinking the liver met, that’s a good sign, right? All I have to do is figure out what to do with that one, pesky, ginormous pelvic met. Piece of cake, right?
There are multiple planes on the runway and each of them represents a choice, or direction that my treatment can take from here on out. The goal is to have as many of them lined up as possible. As long as there are planes, I get to keep flying- happily breathing in recycled air. This time with my favorite cancer travel perk- a face mask to ward off all of the diseases circulating that will gladly test my now compromised immune system. I need those planes, because I know that when I get down to only one plane that I will be stepping onto my last flight.
Plane #1 is to convince my oncologist to stay the course and to convince a surgeon(s) to perform a dual operation to resect my right lobe of my liver, ablate the single small met on my left lobe and remove the pelvic tumor and both ovaries. After that I can return to my current chemo regimen.
Plane #2 is similar to the first, but it it involves only removing the ovary met.
Plane #3 is decidedly less appealing. Instead of surgery, I switch chemo regimens. My options are limited, but I would then try to convince my oncologist to duplicate a current, ongoing trial off label. This trial was one of the most talked about trial for colon cancer at the ASCO (American Society of Clinical Oncology) conference this year. It involves combining an approved 3rd line treatment (Stivarga) with another drug (Opdivo) which is currently approved only for the small minority of CRC patients who are “microsatellite unstable”. I am not. This would mean appealing to the drug company to provide it to me for free, based on “compassionate use,” since insurance is unlikely to cover it.
Seems far fetched, but I know from my Colontown Facebook groups that several people have succeeded in doing this already. And if approved for them, why not me?
Plane #4 is the least appealing. I go on Stivarga alone. It represents the first leg of my final flight.
If I don’t get plane 1 or 2, that reality slap is going to come hard and fast. Because I do not believe a new line of chemo is going to do anything to my pelvic met.
If I don’t have the surgery to take it out, it’s going to take me out. As it continues to grow, it will only cause more and more problems. Problems that will put me in the hospital with potentially fatal complications, infections, or sepsis. That isn’t how I want to go out.
Looking back at the past year, there are already so many false starts, wrong turns and “what ifs.” At one point- before we knew for sure of spread to the peritoneam- I was considered to be fully resectable. I might have been one of the lucky few who could be cured! Today, I have a single met squishing multiple organs in my abdomen and threatening to take me out much sooner than expected.
What do the doctors, the drug companies, insurance and my cancer have in store for me next? Like a game of roulette, I place my hope on red, thinking that it has to hit soon because the record shows a string of black. It’s faulty logic in both the casino and in life. For now, I just have to fly into the fog. I’ve calculated where the oxygen mask, life preservers and exit rows are in case of trouble. But between you and me? I could really use some bluer skies.