How Is This Good News?
Dr. Tran Cao called me this morning and opened with, “I have good news.”
Then he told me the plan has changed and what I really need is a liver transplant.
I said it out loud. “How is that good news?”
Here is what happened. He took my case to the tumor board at MD Anderson, which means a room full of specialists sat down together with my scans, my labs, and my history and worked through all of it as a group. A whole team of people I have never met spent their time on me.
Their answer was PSC. Primary sclerosing cholangitis, which had come up early on while I was still in testing and biopsies, but nobody had connected it to the cancer until now. The board believes that this is where my cancer came from. It is a chronic disease that slowly scars and narrows the bile ducts, and it happens to be one of the known risk factors for the exact cancer I have. I already have autoimmune hepatitis, and now PSC on top of it, which puts me squarely in the group of people this shows up in. So the mass in my bile duct did not come out of nowhere after all. It had a cause, the cause has a name, and I have apparently been living with it for a while without knowing.
And that changes the math completely. If PSC is what started this, then removing the left side of my liver only takes out the part with the tumor in it. Everything left behind still has the disease that caused the tumor in the first place, still scarring, still capable of doing this to me again. A transplant takes all of it. The cancer and the cause, gone in one operation, and I get a liver that has never been sick a day in its life. It also gives me much better odds that this never comes back, because the diseased liver that started it would be gone.
That is what he meant by good news. Not that the news was easy, but that it gives me a better long term outcome. A better shot at years instead of months.
It took me a minute.
So September 23 is no longer the day. The resection is off the table, and instead I am waiting to meet with the surgical transplant team and the oncology team at Houston Methodist. I do not know yet exactly what the order of operations will be, though it will likely be specialized radiation and chemo first, and then a transplant. Right now I am one meeting away from knowing, and that meeting has not happened.
What I do know is that I have a whole new team now. Houston Methodist works alongside MD Anderson, and they have specific protocols built for this exact cancer and for the transplant that goes with it. So I am not starting over. I am being handed off to the people who have treated this particular diagnosis, which is what I have wanted from the beginning.
Timmy, if you are reading this, your eviction is postponed. Do not get comfortable. We are no longer talking about remodeling part of the building. We are condemning the whole thing and putting up a new one.
If you have read anything else in this journal you already know how I feel about waiting. I am not good at it. And here I am again, back in the part where the phone has to ring before anything can move. Back to waiting to see how we will fix this and what exactly we will do. Which is annoying. The only difference is that this time I am not waiting to find out how bad it is.
In case you have never had a reason to look this up, there are two ways to get a liver.
One comes from a deceased donor. That means going on the transplant list and waiting for a liver that matches my blood type and my size, and how long that takes depends on how sick I am compared to everyone else waiting for the same thing.
The other is a living donor. The liver is the only organ that regrows, so a healthy person can give away part of theirs and both halves grow back over the months that follow. One operation, two people in two rooms, and nobody has to die for it to work.
That is the whole list. There is no third option where Meredith Grey grows me a spare one in a lab. I checked.
I do not know yet which of those is my path. That is one of the many things I am hoping to understand better when I finally meet the transplant team.
A few hours after that phone call I was standing at a fence watching my oldest play his first football game. Not one thing about that hour had room in it for tumor boards or transplant lists or which kind of donor I end up with. Just a kid who could not wait to get on the field, and me on the sideline getting to watch it happen. That is what all of this is for. A better shot at years means a lot more days like this one, and I intend to be at every single one of them.
More soon, as always.
Amber