I Am A Candidate
We left for Houston on Sunday for two appointments. The first one was with the gastroenterology team at MD Anderson and it turned out to be a complete waste of a trip. Nothing new. Nothing useful. Just a drive and a parking garage.
The big appointment was Wednesday. That was the appointment where Houston Methodist decided whether or not I would be a candidate for a liver transplant. They had already collected all of my imaging and my history ahead of time and taken it to their own tumor board, so by the time I walked in, a room full of experts had already spent an afternoon discussing my liver. That is the second tumor board that has convened over me in a month. If nothing else, I have become very popular with people who look at scans for a living.
Ryan and I had a couple of days in between the two appointments, so we did something radical. We went on dates.
Tuesday we drove to Galveston, had dinner, and took a harbor tour at night. Monday night we found sushi near the medical center that was genuinely the best I have ever had. Fuji Japanese Sushi Bar. If you are ever down there for treatment and need something to look forward to, go get the sushi. Doctor’s orders. Mine, not theirs.
It was nice to feel like a regular person for a couple of nights instead of a cancer patient.
Then Wednesday came, and the doctor told me that their board had reviewed everything and determined that I am a candidate.
I don’t think I let myself admit how scared I was of that answer until it came back the right way. Because if the answer had been no my only real option was going back to MD Anderson for the resection. That meant leaving the disease that caused this inside me. It would very likely come back and I would be fighting this same fight over and over for the rest of my life. On top of that, there are very few transplant centers in the country that will even take on this kind of cancer. It is complicated. The prognosis for this type of cancer is not great. So hearing yes felt like relief and luck at the same time.
And this is the part where the real work starts.
Being a candidate is not the same thing as being approved. Right now their financial team is working with my insurance to get approval for the workup, which is the enormous pile of testing I have to pass before anyone puts me on a list. That alone can take four to six weeks. Once that clears, I go back to Houston so they can check every system I have and make sure my body can survive an operation this big.
I also have an appointment with oncology on October 19, though they are trying to move it up. That is when I find out my treatment protocol. Before a transplant is even on the table I have to complete a minimum of six months of treatment, and my cancer has to actually respond to it. Timmy does not get a vote, but he does have to cooperate.
There are two protocols they use for this. One is chemo only, which I could do in Austin and sleep in my own bed. The other is chemo plus radiation. If they go the radiation route it is a specialized kind, which would mean living in Houston for about a month. The first stretch is external beam radiation, typically twice a day, five days a week, for three to four weeks. Then a short break. Then comes brachytherapy, where they go in through the hole in my side where my drain lives and radiate the bile duct from the inside.
Which means after weeks of being nothing but an inconvenience, Barton is finally going to earn his keep. He has been freeloading since July. Now he is a service entrance.
After all of that, chemo continues at home for the rest of the six months.
The other thing they told me is that I am a candidate for a living donor. Here is what that actually means, since I did not know much about it until recently either. It is a very selective process. A lot has to match up before anyone gets approved, and a potential donor has to go through a couple of days of their own extensive testing in Houston to be cleared.
If it happens, my donor and I go into surgery at the same time in two different operating rooms. Surgeons take half of my donor’s liver along with one of their bile ducts. On my side they remove my liver and my gallbladder, put the new half in, and connect my new bile duct straight to my intestine. Ten to twelve hours for the surgery itself.
Then the strange and wonderful part. Over the next four to eight weeks their liver grows back to full size and so does mine. Two people walking around quietly regrowing an organ like a couple of starfish.
Now the part that is harder to write.
I would be lying if I said I wasn’t scared. Terrified, actually. People keep telling me how strong I am, and I never know what to say back, because what exactly is my alternative? Falling apart is not on the schedule. Dying seems like a worse plan. So I get up and I do the next thing on the list, and apparently that reads as strength from the outside.
I would also be lying if I said I had not thought about dying, and about what that would mean for Ryan and for my boys. I have. More than once. I think anyone in my position who says otherwise is fibbing.
So I am fighting hard, and I am leaning on a truly alarming amount of dark humor to get through it. If you catch me making a joke about my own cancer, that is not denial. That is just how I am carrying it.
Before I go, I want to say something to all of you. The messages, the prayers, the check ins, the people who keep showing up without being asked. I see every bit of it. On the days I do not have it in me to answer, know that it still landed and it still helped. Thank you for staying with us through this.
One step at a time. That is all any of this is.
Amber