It’s difficult to live normally between scans. It’s like my life (our lives) is now going to be measured month-to-month. My next scan will be at the very end of June and now that I know there is a new tumor, I feel like I’m again trapped in the void of wait-and-see. I have to keep moving forward, keep making plans. But any plans past June are plans in which I am not fully vested emotionally. How can I be, when the plans could easily change from whatever fun or normal activity it is, to deciding on and undergoing another treatment? I feel stuck. I am tired. I am so very very emotionally tired. I cannot wait for the day when I wake up and my first thought is about something like what I might wear that day or what Kai is going to have for lunch, rather than opening my eyes to remember that the bad dream is reality. I am sure it will get easier with time. I have no doubt that as we get more and more good news after scans over the next few months, the cancer will start to fade to the background and my “real” life will take over. I am thankful for that day.Today I am thankful for the wonderful progress that the IL-2 is making; the quick decisions of my doctors and my utmost confidence that they have only my best interests in mind when making decisions; an awesome spur-of-the-moment visit from Judy; my mom who thankfully is still staying with us; all of our amazing friends and family; my wonderful husband, Jeff-I am so sorry for this setback but please know that it will not deter my victory-and our perfect baby Kai. I love you, baby Kai. While I can’t always predict what might happen next, I can always promise you my love.
Monday, June 6, 2011
Dr. Schaub called today with the results of the lab tests. The tumor on my neck is melanoma. They had their weekly meeting this morning (where all the doctors in the branch meet to discuss each case) and decided they would like to remove the tumor instead of moving on to a new treatment. If we do a cell-based treatment, like the TIL treatment, they will have to wipe out my current immune system to make way for the new cells. If they wipe out my current immune system, then the progress of the IL-2 on my other tumors will be stopped. They feel that the success of the IL-2 in shrinking the tumors in my liver and pancreas is too important to stop now. Also, if they remove the tumor in my neck, they believe it will contain better cells from which to grow new cells for a cell-based treatment. They still have the cells they grew from my liver cells, but because they got those cells from needle biopsies rather than from the full tumor, they aren’t positive about the quality of the new cells. Plus, since they harvested and grew the liver cells, some of the criteria to have the cell-based treatments have changed to require that a higher number of original cells be obtained from a tumor. So, for these two reasons (don’t want to stop the progress of the IL-2, and believe the tumor will provide better cells to replicate for TIL or something like it), they will remove the tumor. Then we will continue to have monthly scans to determine the ongoing progress of the IL-2. It could be that nothing new ever grows. Or it could be that the tumor on my neck is an indication the IL-2 may stop working. Either way, we will wait to see what happens before moving on to another treatment. If the scans show new tumors, or that the current tumors stop shrinking, then we’ll try something else. I am happy with this decision. Going through the IL-2 was very difficult and it’s having a good result so far. I am happy giving it more time to see how far it can go. I still believe it can be my cure. And I am extremely thankful for the effect it is having on my liver and pancreas. They aren’t sure when the tumor on my neck started growing. They didn’t see it in any previous scans, although they were not really looking for it. They only knew about it because I felt it (from the outside- I would guess it’s about the size of a marble, although this always seem to feel bigger than they are). It could just be a crazy thing that grew, they’ll remove it, and the other tumors will continue to shrink until I am cured. I’m sure that’s what will happen.
Posted by Jamie at 8:12 PM