Since my last post, I traveled back to Rochester, MN for a follow-up visit to the Mayo Clinic. I followed up on the surgeon's suggestion to speak with the transplant team. Last summer, they were the doctors who suggested that while they didn't think I'd have much shrinkage with radiation or chemo, I might be a good candidate for a liver transplant. And in fact, the doctor I met with thought I was a good candidate for transplant. He suggested I do this sooner rather than waiting until later. He said he believed a transplant would benefit me rather than make things worse. They were ready to order the slew of tests to try to find a primary and to make sure I could be approved transplant.
The caveat, to me, seemed to be that I needed to identify a living donor. Someone who is a tissue match who can donate a portion of their own healthy liver. The portion of their liver would then replace my entire tumorous liver. In both patients, the remaining liver would increase in mass to accommodate what our bodies needed. In cases like mine the doctor been more successful in getting approvals for living donors as opposed to a deceased donor. It would be almost impossible for me to qualify to be on the list to receive a deceased donor liver for too many reasons to list in this post. I’ve not been a fan of the living donor. It's risky for the donor and difficult to ask anyone to go through that surgery. The doctor spoke with me about my concerns. He was understanding but didn't agree.
I let him know I would like to continue pursuing other options as long as they didn’t disqualify me for transplant in the future. (MIBG and PPRT) He supported me and wants me to keep in touch. He said I should wait until I'm ready to go through the transplant testing approval process since it is an expensive and extensive process.
I left understanding that he will be presenting my case to the transplant board at Mayo and I should call him when I’m ready. He did caution that waiting longer often means disease progression, but not in every case. It was a great experience talking with him and his team, and the Mayo Clinic is just an awesome facility.
So here is the funny part, in case you were actually waiting for the humor in this post. I brought my family up-to-speed on the appointment in an email later that afternoon. I've included some of the banter between my siblings and cousins.
David (brother 2): "So if I offered you my liver does that mean I wouldn't have one? Or will they just take part of it? I'm not really using it for anything constructive so if some of it would help you out I would be glad to give some up. It would probably mean I would lose some weight and I'm all for that."
Julie (cousin): "Hold on. I think we need to look at how much that liver (David's) has been through. On the other hand mine is pure and I could use a weight loss program. So you could take some of mine, but if you need the whole thing go with David."
Lee Ann G. (cousin): "Maybe we could all just give a hunk. I'm certainly not as pure as Julie, but possibly in better shape than Dave. So if you want to go middle of the road, I'm in."
Chuck (brother 1): "Jan, would you really put Dave's liver in your body? Do we need to talk about some of his history? He started drinking gin and tonic in junior high! I probably have more liver than any of you and there are no transmittable diseases coursing through my veins. You might (and this is my favorite part) even become a little more personable and definitely friendlier if you had a little more Chuck influence. Of course, you might eat a little more too."
Sisters (1 &2): crickets chirping...
In defense of my sisters, Karen and I have discussed our plan. She needs to be able to help take care of Mozie and I if I go through this and Sharon only reads email once in awhile so by the time she reads that I need part of a liver, I will have already found a donor.
I'm moving forward with trying to figure out how to move forward. There are no half ass opinions here. For the past year every doctor or team I've met with believes their way is the way to go. And I've asked the best doctors who treat this type of cancer. My next trip to New Orleans will probably be in May and I believe I will try the next step radiation treatments there. After that, I have lots to think about. And now I have another option which is a good thing.
Thanks to my family for being a constant source of love, support and laughter.
smak and pow,
jan
