Recurrence is a funny world. It’s the one thing we all dread until it happens. I think it’s because our brains are meant to solve problems. Once it has all the information it needs, it begins to come up with an explanation that is settling and a plan for a future. In my case, once all the tests were done, my brain had decided that my body had a repairing glitch. Having driven a lot of old cars with strange glitches, like windows that wouldn’t roll up in the rain. or wouldn’t start on an incline, my brain was used to computing a solution to the problem. It has resolved that with some minor medical intervention I’d be able to get back on track. After all, I felt and looked incredibly healthy.
When I went in for my hash-out-a-plan appointment, I was not ready for this strange new world of Stage IV Cancer with its new vocabulary – incurable and a goal of palliative care. To me, palliative care meant hospice. And the fact that I felt so good and was still healthy and we were still entertaining more aggressive treatment meant we had loftier goals than that. I was willing to make a deal. I’ll take the word cure – in all of its forms -off the table when speaking about my cancer. But my goal is flat out remission, the “cure replacement word.” And I’ll settle for not knowing if I’m actually cured until I die from something else.
When I left the doctor’s office that day I felt demoralized by the new lexicon. And then I got angry. I decided that night that I define wins in this battle, just as I draw the battle lines. Not cancer. Not my doctor. Me and my body.
The next time I saw my doctor I told him adamantly, ” Remission is in my future. And that’s my story until it’s not my story.” He smiled and nodded. And now I see, remission is only part of my goal. The other part is to change the way we talk about Stage IV cancers, because many of us will live long, healthy lives, go on to fight other cancer battles and die from completely unrelated causes.
What I mean is this: No matter what our diagnosis is, what our doctor says or what language he or she uses, it’s the story we tell that defines our battle. Cancer is so unpredictable and its remedies are changing so rapidly, no one has an answer for any of us. And when there are no answers, there are choices. And our choices can change, just was we will be changed by them. We don’t have to be afraid. We can take the risk and enjoy the ride. It doesn’t mean that at times I don’t have that pit in my stomach feeling. Then I remind myself: It’s just the roller coaster of life – and that’s the feeling you get when you’re on the downhill glide.
Hello old friend. It’s been a while since I’ve written and so much has changed. At the beginning of the year, you know, the month of January when you’re fresh and bold and ready to make the changes you need to get things done and feel accomplished, I made my appointment to have my final implants put in. Long story about why I haven’t had it done sooner. A story that gets even longer. Implants are a same-day surgery which require a whole bunch of silly tests and doctor sign-offs. One of those tests was a routine blood test. Nothing to write home about. Until my oncologist called out of the blue looking to schedule an immediate appointment. That appointment led to a few more blood tests, a couple of scans and a phone call in a restaurant from the oncologist to say the cancer is back, riddled up and down my spine and rib cage.
How was it that I didn’t crumble right there and then? Some things I’ll never know the answer to. It had been only two years since I’d undergone the horrors of chemotherapy, radiation and surgery. Two years since my sister took her life, unable to live with the ravages cancer had left her with. And here I was at the precipice again.
January gave way to February and then to March, whose frigid air blew in a new drug regime that include a painful monthly shot in the ass and one in the arm and a new daily pill. Combined, they forbode of hair loss, fatigue and a continual pain in the ass.
Stage IV cancer is a different world from all the other stages. But it’s still a world and one I can live in. It brought with it a new vocabulary – incurable, inoperable, palliative care. Words I didn’t want to hear or believe. Ones I’ve since stricken from my dictionary. And so I revisit this blog with a new message, a new story that looks differently at the past as well as the future – but a future that still is bright and full of hope. And so old friend, walk with me as I tell you my tale.