I roll the window down
And then begin to breathe in
The darkest country road
And the strong scent of evergreen
To tell the difference between
From the passenger seat as
You are driving me home
“It’s getting hard to stay awake” I mutter to my husband.
It’s a phrase that I’ve been muttering far too often over the past two weeks. And in fact it is, at times, becoming a very difficult thing to do. I live in this body, where cancer mingles with chemotherapy, and chemotherapy mingles with cancer, and pain management options- namely opioids, mingle back and forth with both. At any given moment, who is to say whether my pain or my emotional shifts or my sleepiness is a result of cancer, chemo, pain management, hormonal shifts, a little of all four….? Causes and effects blur together inside me and puppet me into someone who functions; but not quite like she used to, and who maybe has to just accept that fact. For less pain? For longer life. For… where was I again?
The woman who has always taken pride in being the driver in my own life slides over to the passenger’s seat for a while. The woman who wins at least three of every four WORDSWITHFRIENDS just had a four-game losing streak. I stay on the margins of those Facebook group discussions about trials and/or possible new treatment options. I KNOW that I cannot stay on the margins for too long, but I kind of… don’t want to leave?
I can smell those dark evergreens. I can make out the gleam of the shiny objects in the sky. I miss the days of limited awareness. Of the magic of musky smells. Of simply knowing that if I just close my eyes that someone else will take care of me. They will make sure that I make it to the destination and back. Just as I was an infant, let the universe decide whether my survival is still worth it or not. I struggle with the balance between acceptance and giving up. I let go expectations of survival, but need to keep my will to survive. How messed up is THAT?
For housekeeping purposes, I was offered a chance to stay in my current trial for up to two more treatments and another scan. I wanted to stay on the trial so very badly. I was looking for reasons to stay on the trial, but honestly could not find any. All of my tumor markers have been on a roller-coaster style projection straight up. And I’ve had progression in several areas of my peritoneum, with tumors growing rapidly in several spots. This progression has been the cause of my sometimes intense pain. Pain which I am still trying to effectively cover with pain meds. Pain meds that combine with cancer to make me want to sleep and feel the breeze outside of the passenger’s seat window. There are also ascites, which are contributing to the pain and are generally seen as bad prognostic signs and decrease your chances of getting into some trials.
So I withdrew from the trial. And I believe that it was the correct proactive action. Some good news is that there is some evidence to support that a return to prior chemotherapy might have a better chance of success after finishing a course of immunotherapy treatment (my trial), even if the immunotherapy itself did not work. So I am re-attempting my first treatment (FOLFOX) and adding in the AVASTIN that I took with my second chemo treatment (FOLFIRI). I am hoping for a knockout. Because I want this to work. I NEED THIS TO WORK. So if you have any good thoughts, prayers, etc. worth donating, now is the time that I really feel like I need them to come my way.
My first strong chemo after my cancer progression was REALLY, REALLY rough. I was in pretty agonizing pain for several hours straight, and not able to sit still through pretty much the entire infusion. And then on top of that, I was so nauseous that I had to vomit up everything into the chemo bay trash can and just keep going. Well, the first puke was to literally to gut myself of all evidence of food in my body and the second was really more of an extended, tortuous dry heave. Did I mention that we are working on better balancing my pain regimen? I spoke to my oncologist and now have permission to front-load my pain medications on chemo day and then to still be able to take them as needed for the rest of the day. It turns out that there really isn’t a merit badge given to people with cancer who suffer the most.
So here is one of the cruelest parts of cancer that they don’t tell you about. Good news begets good news. Bad news begets bad. It seems like a never-ending list of options when you begin walking down the “metastatic cancer” board game with tiles after tiles lined up. But progression to a third metastatic location, diverts you to a shorter path. Another bad scan, they take a tile away. Another bad scan, they take a tile away. And then suddenly you are already three months shy of your two-year cancerversary and there are only three-four game tiles remaining between yourself and the gravestone. Those tiles are: 1) Re-attempt prior treatment, 2) Stivarga (third line chemo), 3) Lonsurf (another third line chemo, but it is a stretch that I will even stick around long enough to be healthy enough to try it, and 4) Go to hospice. Do not pass go. Do not collect $200.
A GOOD scan at my next scan time, might make it more likely that I will see Game Tile #3. It might even open up a tile for another clinical trial. Or a tile which would allow me to apply to use a drug on a compassionate use basis (okay, I admit that I may look into this even if my scan isn’t good). A BAD scan might kick out tile #3, or compassionate use, or if REALLY bad send me straight to hospice. This is the Game. The Game that I need to wake myself up and pay attention to.
I am battered, but still hanging in there. The last couple of days have been better from both a pain management and energy/awareness. I almost feel… optimistic? Strong chemo worked very well for me in the beginning of all of this. Until it didn’t work for me any longer. Let it work again. Let those doors start to open and let the tiles begin to come out.
I already have a boxer’s mouth. It is bruised, battered and rough on the inside from accumulated mouth sores. It is filled with cotton from dry mouth, inspiring insatiable thirst. What better time could there possibly be to scoot back to the drivers’ seat once more? To adorn myself with some glittery shorts and trendy sports bra and step into the ring to do battle. Throw all of the metaphors at me. I am ready.
There is time enough in the future to lie back down again. And to marvel at the beauty of the stars that are colliding above my head.