Two Paths
It finally caught up with me this past Wednesday while I was flat on my back in an operating room with a surgical drape tented up over my face.
I was there to get a port. A port is a little device they tuck under the skin of your chest so chemo has a direct line in and your veins are spared the worst of it. It’s a minor procedure. But somewhere under that drape it landed on me all at once that this is the beginning. Not the diagnosis or the scans or the meetings. This is where I actually start fighting cancer.
I tried to explain it to Ryan afterward. For three months most of this has been waiting. Waiting on biopsies. Waiting on tumor boards. Waiting on a phone call to tell us what came next. You can hold something at arm’s length while you’re waiting on it. Now the waiting is over and everything is moving at once. For the first time it feels real.
Here’s what everything at once looks like. From here on I’m walking two paths at the same time and I need both of them to go right.
The first path is treatment.
On October 7 we drove to Houston to meet my oncology team. That was almost two weeks ahead of schedule because they found a way to fit us in early. The plan is a chemo combination called gemcitabine and cisplatin. Everyone calls it Gem/Cis, which sounds less like chemotherapy and more like a pair of Olympic figure skaters. I’ll do eight rounds and then move to maintenance chemo, which as far as I can tell is chemo that just keeps going until transplant day.
Everything in the next six months comes down to one thing. My cancer has to respond to the chemo by shrinking or at the very least by staying exactly where it is. That’s what gets me to a transplant. So Timmy is officially on probation. Shrink or sit still. Those are his only two options and I’ve made that very clear to him.
They also tested my blood for tumor mutations because a few of them come with targeted drugs of their own. The odds that I have one are low but nobody minds a long shot.
They’re also holding two other tools in reserve. Immunotherapy works by revving up your immune system. Mine already attacks my own liver, so they’d rather not poke that bear unless they have to. Radiation is a wait and see. There’s no reason to start with the strongest thing they have if chemo alone can do the job. That puts Barton’s one job offer on hold. He’s back to being purely decorative for now. If my cancer doesn’t respond the way we want, both of those come back into play along with other chemo options.
Before chemo can start there’s one more week of prep. On the 20th I have baseline scans so the team has a clear picture of Timmy before treatment begins. Then next Wednesday I go back into the OR so they can replace and reposition Barton. My bilirubin has crept up on my last two blood draws, which tells my doctor the drain isn’t moving bile the way it should. That matters more than it sounds. The biggest danger I carry into chemo is an infection of the bile ducts called cholangitis. Chemo weakens your ability to fight infection. A drain is an open door. They want that door working perfectly before they start poisoning me on purpose.
If everything goes to plan, chemo starts the week after that. The first rounds will be in Houston. Once we settle in we’ll look at moving some of that care closer to home because three hours each way is a lot of windshield time.
The second path is the transplant. This is where the best news of the month lives.
My insurance approved it. Not just the operation but every piece of it. The evaluations and the testing and the workup and the surgery itself. I’d braced myself for a fight because everyone has heard the stories. The prior authorizations, the denials, the appeals, the people who spend the worst year of their life on hold. I assumed I’d end up being one of those stories.
Instead our insurance has been extraordinary from the very beginning. When the case worker called she explained that Ryan’s company had chosen to add transplant coverage to its plan. That means a blanket preapproval for anything tied to my transplant. It even covers a living donor. Their medical bills and their testing and their matching are all included.
I keep thinking about that. Somewhere in an office someone at Ryan’s company made a decision about a benefits plan without any idea that our family would need it. That decision is the reason I get to spend this year fighting cancer instead of fighting cancer and an insurance company at the same time. I’m more grateful than I know how to say.
With the approval in hand the real work toward a new liver begins November 9 and 10. That’s when I go back to Houston for a two day transplant evaluation. Over those two days they test just about every part of me to make sure my body can survive a surgery this big.
The schedule reads like the worst vacation anyone has ever booked. Day one starts at seven in the morning with a transplant education class. From there I see cardiology and surgery and nutrition. Then come labs and an ultrasound of the arteries in my neck. Then a lung function test. Then an MRI. Day two starts at seven with an echocardiogram. After that comes social work and a financial counselor. Then a bone scan and a Panorex. Then a mammogram to finish things off.
A Panorex turns out to be a dental x-ray. They want to see my teeth before they’ll give me a liver. I didn’t expect my molars to have a say in any of this. Apparently nothing gets a pass.
Both paths have to line up for this to end with a new liver and no cancer. I know we’ll hit bumps along the way. I’m just hoping they’re more speed bump than pothole.
One last thing before I go.
I’d love to tell you I still feel like myself. I don’t. My body hurts in ways it never used to. I’m tired in a way that sleep doesn’t fix. But the physical part isn’t even the hardest part. The hardest part is in my head. It’s catching my reflection and noticing the outline of a port under my shirt, or how skinny I’ve gotten. It’s building my weeks around lab draws and scan times instead of practices and games. It’s lying awake at night while my mind runs ahead to things I can’t control. Cancer moves into your head long before it takes anything else from you.
And then it starts taking things.
This weekend my brother in law is getting married in Arizona. My family flew out this morning and I stayed behind. It’s the first thing this disease has taken from me that I actually wanted, and it stings more than I expected. Calling it FOMO doesn’t even come close.
That is cancer. It doesn’t care what’s on your calendar.
So I’ll keep going the only way I know how. One step at a time down both paths for as long as it takes.
Amber