It was a late appointment so I had the morning to be able to sleep in a bit, do some yoga, and eat a good breakfast, which was nice. My mom took me in to the old stomping grounds at the cancer center in Avon. It felt at once good and depressing to be in such familiar surroundings.
We had a thorough and informative meeting with Dr. Dailey during which Craig arrived after his summer teaching gig. The doctor was thrilled with my blood counts and congratulated me on how much they maintained. My white blood cells are only slightly lower than normal and my platelets and red blood cells are strong as ever. And this is without the aid of any post-chemo mobilizing agents like Neupogen. We'll watch my counts closely at the end of this week and during next to see if they do end up dropping, which wouldn't be unexpected.
He explained again how much he liked the GND regimen for Hodgkin's relapses and was happy to hear that I experienced essentially no side effects. He's taking me off all steroids and the Allopurinol I was taking to prevent uric acid build up. We are very in sync when it comes to taking the minimal amount of drugs possible. We talked a lot about the next steps and why it is necessary to move forward with an allogeneic stem cell transplant. Even if the GND puts me into a nice remission as planned, it will not cure me. It is highly likely knowing the pattern of this cancer that it will come back and we need something besides chemo to yield a chance for long-term remission (there really is no "cure").
I understand now in more clarity that the allogeneic stem cell transplant is a whole different beast from the autologous transplants I have already gone through. With the auto transplant it was the incredibly high dose chemo that was killing the cancer cells. The stem cells that my marrow created and that were reinserted in me were merely a rescue mechanism to repair my destroyed marrow and create the blood cells that I needed to survive. This time around, the stem cells used from the donor in the allo transplant are the treatment. It's those stem cells and the new immune system that they'll build within me that will be killing the cancer. This is called the Graft vs. Lymphoma Effect. The high dose chemo I'll receive is just to suppress my bone marrow enough to allow someone else's cells into my body without it freaking out and rejecting them.
We talked extensively about how the strength of the donor match is actually much more important than the particular chemo cocktail chosen in getting me toward long-term remission. And, the further away from perfect the donor is, the higher the increase is for developing the potentially life altering and/or life threatening Graft vs. Host Disease.
Dr. Dailey is extremely supportive of gathering other opinions from several leading cancer centers with strong transplant programs. He helped us to develop a list of questions to ask and helped us to better understand what to look at when choosing a program and how important it is to encourage all of these doctors to talk to one another as we all decide the best route for me to go. Regarding experience in various programs Dr. Dailey noted the uncomfortable reality that no matter where I go, the numbers of the patients that they've seen with a case like mine are going to be very low. Studies are nearly nonexistent, some with as little as 10 patients, and much is still unknown as to success tactics in allo transplants for someone with a Hodgkin's relapse as aggressive as mine. Nonetheless, there are success stories and that's all that matters. I will be added to the record books.
Into the private chemo room we went. I stared at the photograph of fall foliage in a lake reflection that I had stared at many, many times before during my 12 ABVD infusions and countless appointments in between them. My nurse Diane administered my chemo and there is certainly something to be said about being back with someone whose cared for me for my entire journey. She calls me "Kar" and she knows the ins and outs of my port and most importantly she knows all the shit I've seen.
I think we're all getting a little tired of the chemo scene though. Back in the day we'd play lively games of Scrabble Slam or online trivia. Today, my Mom dozed off in her chair while I read and Craig took advantage of an acupuncture session. This is not to say that the mood was drab. We're all very hopeful and had a lot to talk about regarding the upcoming treatments and appointments we have with other leading Hodgkin's experts. It's just all very, very exhausting and as hard as it is for me to get hooked back up to chemo again, I think it's just as hard for Craig and my mom, my longtime chemo companions, to again have to watch me wince as my port won't give blood and as my eyes begin to bulge and my face flushes as the drugs enter. We were all so hopeful that my cancer patient days were over. But, that's not the case and that's life so it's time to face it – balls to the wall. I held and rested my feet on ice packs once again as the pretty pink chemo dripped and the other drugs all went in without a hitch.
At Dr. Dailey's suggestion I gave a call to the Yale Allo Stem Cell Transplant Coordinator to check in and see if the results had come back on my brother and sister's HLA testing. They had swabbed their cheeks over a week ago to be tested against my HLA type to see if they are a matching donor. HLA stands for Human Leukocyte Antigens. These proteins are found on the surface of nearly every cell in our bodies and serve as kind of our cellular fingerprint. The HLA proteins allow our own immune systems to distinguish what cells belong in our body and which don't, helping it know when to attack invaders. There was a 25% chance that either my brother or sister would be a match to my HLA type. A sibling is a highly preferable donor. I could not wait any longer on the answer and wanted to get a move on the donor registry search if it didn't work out with my siblings.
"This is Sue," she answered.
"Hi Sue, my name is Karin Diamond. I'm one of Dr. Cooper's patients and I'm calling to ..... . "
Sue cuts me off.
"You must have ESP," she says. "Dr. Cooper came in this morning to see if the results had come in and we were just going over them. Your sister is a perfect sibling match. Congratulations!"
Some excited nonsensical garble came out of my mouth in reply as my heart jumped out of my chest. A huge smile spread to Craig who was across the room and we both rejoiced. She told me that my brother's results were still pending so there is a possibility that he might be a match as well and that they'll decide which is stronger, but that no matter what, my sister is as ideal of a match as a match can be. She explained that I'd get a call with more info and some next steps but I can't say that I remember one word. I was just so thrilled and incredibly relieved. This is a very, very, very good sign of positive things to come.
We pulled Dr. Dailey in from the hall when he came out from meeting with another patient and told him the news. I have never seen the man smile that wide. He was just as, if not more, happy than we were. Maybe because he better understands how key the perfect donor is to the process. I heard him running around telling all the nurses and he was literally bouncing in his step and kept mumbling: "What wonderful, wonderful news!"
"It's tough for the donor; she's got to get all of the shots," one of the nurses said.
"Oh don't worry, she's tough," I shot back. "She played rugby in college."
"Perfect," said Dr. Dailey, still beaming. "Tell her it's just like getting into a scrum."
I called my sister close to 85 times and of course today of all days her cell battery died while she was at the beach and didn't have a charger. I did some sleuthing, found out who she was at the beach with, Facebook stalked them, messaged the friend and asked her to have my sister call me A.S.A.P.
An unknown number came through on my cell and I knew my stalking had worked.
"This is either really good news or really bad news," my sister said.
When I told her, she was ecstatic to be able to help her big sis ... more than help ... to save my life.
I believe the exact words were something like: "I had a feeling! That's F*&%ing Awesome!"
Classic Kristen. I love her.