Maybe it’s all gonna turn out alright
And I know that it’s not, but I have to believe that it is
I have to believe that it is
(Probably not, but I have to believe that it is)
Julien Baker, “Appointments”
And then darling, just for one day, we can fight and we can win
And if only for a little while, we could insist on the impossible
Leave the mourning the to the morning
Yeah pain can be killed
With aspirin tablets and vitamin pills
But memories of hope, and glorious defeat
Are a little bit harder to beat.
Frank Turner, “Love Ire and Song”
I wake up from what seemed like a long dream, but which was really just a short nap.
“How do you feel?”
“Fine. Is it done already?”
“Yes it is. Everything was perfectly normal, especially considering everything else you’ve been through”.
So this was the scene as it played out yesterday at a GI center in suburban Ohio.
“It” was a colonoscopy. My very first one. There were no additional tumors growing. They didn’t even find a single polyp.
“Normal” is the kind of result that is to be expected, if I didn’t live in bizarro world. However, since I’ve been living firmly in the center of bizzaro-world for several months now, this news actually came as quite a surprise. I felt relieved to have one less thing to worry about, and some positive news to bring up to my surgeons in Cleveland.
As the doctor exited and my husband left to go get the car, the strangest and most surreal feeling came over me. It was probably the anesthesia wearing off. What if…?
- What if I had had this same scan just a couple of years ago? If the screening age had been, say- 38. Before I had had any symptoms at all. Without symptoms, would I have even gone through with it? Or would I have kicked it down the road a bit? Let’s say I would have gone through with it. It would have literally saved my life.
- When the symptoms did get noticeable- let’s be generous and say 1-year prior- would it have made a difference? I’m guessing if I had brought it up with my doctor, she would have also assumed that it was other things and we might have wasted several months any way before getting to a colonoscopy. It’s hard to say.
- What if the screening age were 40? Would identifying the tumor 4-5 months sooner have made a difference? Maybe. I suppose it’s possible that at that point it hadn’t yet spread to the peritoneal area, maybe not even to my liver? It’s impossible to say.
But I suppose that what-ifs don’t really matter at this point. After all, I don’t get any take-backs, do I?
On the drive home, my husband stopped for some take-out, telling me I could wait in the car. It gave me another opportunity to sit in silence. In that silence, the dam broke open and I let it all out in a flood of tears. Hypotheticals of the past can’t help me. So let’s dive into hypotheticals of the future instead.
Let’s play a game of pretend. Let’s imagine for just a moment that everything is going to be okay after all.
- I’m this dream, I am waking up from my surgery in Cleveland. The surgeons are smiling and telling me that they were able to get everything. Scans confirm this. I am NED (no evidence of disease).
- In this dream, I then head back to chemo. I put in another 5-6 rounds, bear through the side effects and neuropathy, and then hold my breath for the next set of scans. They tell me that everything is still clear.
- In this dream, I continue to live in two- month blocks, hoping that this cancer doesn’t return. Not in my liver. Not in my peritoneum. Not in my lungs. Not in my lymph nodes.
- In this dream, I am able to pay penance and right all of the mistakes that I must have made that brought me to this place. In this dream, I can once again dodge the bullet, learn it’s lesson, and go forward stronger for it.
In this dream it never comes back.
Odds be damned, all of this could happen. So let me snuggle up with it. Let me put on the blinders and will myself to believe in this possible fairy tale.
- Let me dream of my hair turning grey, and my skin wrinkling up, and growing old.
- Let me dream of seeing my grandchildren and my children as adults.
- Let me dream of retiring some day with my husband and going on amazing adventures together.
Let me dream of mundane problems. The kind that I see other people stress out about and which barely even register to me at all now.
Let me even dream of really big problems, the ones that that challenge me, require resolve and major change. I’ll gladly take them. Because I can still fix those.
Because lately I’ve been diving too deeply in reality. A reality that looks a lot more like a nightmare than a dream. And it’s one I can’t seem to wake up from.
I’m reading too many posts in private Facebook groups from people with my disease getting to the end of their options for treatment and preparing for what comes next.
I’m reading a book published posthumously from the blogs of someone just like me. How her disease progressed. How she coped with the physical and emotional anguish of getting closer to death and leaving her husband and small children behind.
I’m wondering at which point it would be appropriate to go visit hospice centers as a means of deciding whether I want to die there or at home.
Too much reality has been weighing me down. Denial is prettier. Denial is happier. And I want to feel happier.
So let’s play pretend.