Well, there's been a change in plans. After we got here and were admitted, the surgeons told us that they reviewed the CT scan further and decided that attempting to remove the tumor surgically was too risky. It is between two major blood vessels and there is a chance that they would have to remove half of my liver to remove the tumor sucessfully. They determined that the risk was not worth the potential benefit. Instead they will remove some of the tumor through needle biopsies (performed by a radiologist, using CT as a guide - I'm guesing it's similar to the biopsy I had previously). They will then try to grow the new cells from what they collect. Because they won't be removing as much of the tumor as they would through surgery, there is a lesser chance that the new cells will grow. While we are waiting for the new cells to grow, they are going to give me one course of IL-2. Basically IL-2 hyperactivates your immune system, which will hopefully stimulate an immune response to the melanoma. It's an in-patient therapy and I will be here for a week, then home for a week, then back for another week. IL-2 by itself has about a 15% response rate and a 5% cure rate. There is a chance that my body will respond to it and the tumors will shrink or disapear without us needing to do anything else. In the meantime, they will try to grow the new cells from the biopsied tumor. If I respond to the IL-2, then we won't do the TIL therapy. If I don't respond to the IL-2, and the new cells grow sucessfully, then we will do the TIL therapy as planned. If I don't respond to the IL-2 and they can't grow the new cells, then we are back to the drawing board. I will be here until Friday for the biopsy, so my immediate time away from Kai has been shortened to really only one full day (since I saw him this morning and will see him again on Friday). I have to come back on Wednesday for the first round with IL-2.
When they first told me about the change in plans I was really upset. All I heard them saying was that we weren't going to be able to do the procedure that would give us the best chance for growing the new cells. I wasn't worried about the risks of the liver surgery, because I was focused on fighting the cancer at all costs. While Dr. Phan was tellling us about the change in treatment, I had a moment where I lost all hope. Everything had been going so smoothly for the past week (I can't believe it's only been one week) and this change threw everything off course. But now I realize that it's actually a really good change for a number of reasons. First of all, I won't have the 6 weeks where I can't lift Kai - fabulous. Secondly, I'll be in much less pain (actually no pain) after the procedure compared to what I would have experienced with the full surgery. And thirdly, instead of just sitting around at home waiting while they try to grow the cells, we will be trying something else in the meantime; something with a 5% cure rate. The IL-2 treatment won't be easy. The goal is to make me as sick as possible to cause my immune system to go into overdrive. But I won't lose my hair since it's not a chemotherapy, so that's good news (I will lose it if we end up doing the TIL treatment, because the TIL treatment involves chemotherpay to kill my immune system before transfering the new cells, but it will be worth it of course). So the new plan is that I will be here until Friday. Then I will come back on Wednesday and be here for just over a week. Then I will go home for 7-10 days, and then come back for another week. After the second round, I will have more scans to determin if I am responding to the IL-2 (a response would be if my tumors shrink). If so, I'll repeate the IL-2 treatment again and then have more scans to see if the tumors have decreased even further. I'm excited for the change in plans. I am happy to be doing something during the period where we are waiting to see if the cells will grow. I am anxious to fight dirty and I want to do as much as possible as quickly as possible.
I am extremely impressed with the speed and apparent smoothness with which the doctors were able to change course. When I was admitted at 1:00, we were still on track for the full liver surgery. When they came to talk to me about the change it was around 3:00. By just after 4:30, Dr. Schaub had scheduled the biopsy for tomorrow and we had a plan for me to come back to start IL-2 on Wednesday. I don't think this would have been able to happen at a private hospital. Because of the fanastic resources at NCI, they were quickly able to help me change course and stay on track with treatment; ensuring I was still acting as quickly and as aggressively as possible. I am very thankful for that. While I would consider myself relatively easy-going, I'm not sure how naturally flexibility comes to me. I think I'm going to have to learn to be a lot more flexible during the course of this journey. I am thankful for that lesson.
The Clinical Center is different from a private hospital in other ways as well. For example, I am not confined to my unit. I am free to walk around the building as I please. As a patient, I really appreciate this freedom. I can sit downstairs in the lobby amongst people, or walk the halls, or go to the cafateria if I'd like. Otherwise, I would be trapped in bed feeling sorry for myself. This freedom makes me feel more like a person who is being treated than like a patient. I don't know if it's because I'm part of research or if it's because the Clinical Center, being a government entity, is not tied by some of the same legal fears and restrictions as is a private hospital. Whatever the reason, I am thankful for it as both a patient and a person.
I haven't had any major insights today. It's been exhausting emotionally with the change in course. I will say that being on the oncology in-patient unit makes me very happy for how heathly I am. There are some very sick people here. People who are here because it's their last chance for hope. I am thankful I am not one of those people. If this treatment doesn't work for me I am confident that something else will. I have a fabulous team of doctors in NCI and outside NCI who are working very hard to help me. Dr. Schaub and I are the same age. He is 8 days older than I am. We live in the same area and we both work in clinical trials. In another life we could have been friends. I feel like he cares about us as people. I feel like he understands how anxious we are about both the baby and going at this as aggressively as possible. I feel like everyone here cares about us as people. My nurse has a 16-week old baby girl. She is around my age and lives in DC. We too could have been friends. At this point I feel like I have more in common with my caregivers than I do with the other patients. And with the speed with which we are attacking this disease, I am very hopeful that I will always feel that way.
Each time I read the heart-felt, thoughtful words written by someone who has taken the time to read my post or who is reaching out to me another way, I feel an extra boost of confidence and an assurance that everything will turn out perfectly in the end. I continue to be overwhelmed by the level of support and the vast amount of love we are being given. This experience is teaching me to never take a friendship for granted. When you are at a point in life where you are forced to focus on only the most important aspects, they turn out to be family and friends, period. I am literally fighting for my life. Knowing that so many wonderful people have my back gives me the strength not only to continue, but to do so with hope, with laughter, and with love. I am very thankful for that.
Today I am thankful for the very thoughtful and generous care package from the Trembles, Christians, and Reids; our neighbors shoveling our driveway this morning; my doctors continuing to keep my best interests at heart and changing course when needed instead of giving up on me; the continued support of our amazing family and friends; my mom for taking care of Kai while we are at the hospital; and, as always, my husband - the most wonderful man in the whole world - and our precious baby Kai. I miss you both terribly. But tomorrow I will be one step closer to victory.