Back on the Bag Again
My robot bag is back with its constant whirring noises and annoying bulkiness - but I have to keep reminding myself that means I’m one step closer. Closer to what, I don’t yet know. Closer to being done? Maybe - Closer to being cured? I hope. It’s hard to imagine what my life will look like when this is all over. Will I be left lacking a sense of purpose? I’m not sure I’ll know what to do with myself - when there is suddenly room inside my head for something other than thinking about cancer and chemo. It’s what I’m constantly thinking about and worrying about and stressing about and panicking about and obsessing about - every second of every day. What do cancer survivors think about? (Other than the cancer coming back of course)
This morning I went back to the dreaded 6th floor at Kaiser in Anaheim for round 3 of 100+ hour chemo infusion. Initially they had told me I would only need 4 rounds, but now I’m hearing it might be more like 5 or 6 due to some setbacks. With all of the complications I had with the last round (low blood levels, low potassium, passing out during a blood draw, dehydration, high fever, excruciating pain, and some other gross things I don’t feel comfortable sharing) they have to take a step back from their original plan. Initially the plan for my dosages of chemo was to increase each drug with each round. After round 1 they doubled everything except for the one that was causing the neuropathy, but this time they decided not to increase anything so I’m getting an identical mix of chemo drugs as round 2. I appreciate that my oncologist fully explains his thought process as to why he makes these decisions and even makes me feel like I’m a part of the discussion. I had a phone appointment with him on Friday and he was going back and forth between wanting to delay round 3 for a week due to all of the side effects I had been experiencing, but I told him I don’t want to delay - I need to push forward to get this broken body of mine fixed as fast as possible. As much as I would love another chemo free week, I want to get past this round so I can get another PET scan and see what kind of progress we’re making. I was feeling so hopeful after round 1 when all of a sudden I could tell that the tumor pain was going away, but I’ve noticed a change in that since ending round 2. I can feel the sharp stabbing tumor pain again and it almost feels like it’s growing or moving or something - something is different. I haven’t wanted to admit it out-loud, but I have a bad feeling that the tumor is growing faster than the chemo is shrinking it. The pain is definitely less than it was before all of this started, but it’s worse than it was a month ago. Maybe it’s all in my head? I told my oncologist about this change of course, and he tried to explain what’s currently happening. I asked if it was like when you see a meteor get pulverized and it explodes in space sending meteorites all over and maybe there are baby tumor pieces now floating all throughout my abdomen. He was quick to correct me and explain that the chemo is eating away at the mass causing it to shift and move and relocate to other areas of my belly. He said that most people don’t feel their tumor move and change, but mine was so large that I probably can feel it shift. Man, I hope that’s what I’m feeling. I will be so discouraged if I don’t see a sizable change on the next scan. He said all along he would re-scan me after 3 rounds - so that PET scan is scheduled for Monday September the 14th. When can I start panicking about it? Is now good? While I don’t think it’s worse than it was in the 1st scan, I don’t think I’m making the progress we were all hoping for. Then what? What do I do then? When I had my initial consultation with my doctor he didn’t want us to get ahead of ourselves, so I’m not sure what the game plan will be if the scan isn’t good. I’ve been told this isn’t the type of tumor that can be removed surgically, and my doctor has already said he won’t be recommending radiation since it’s so close to so many other organs (liver, kidneys, stomach, spleen, gallbladder). They’re all crammed in there so the risks are too great to try to radiate just the tumor and not permanently damage anything else.
On a lighter note - I feel pretty good right now. I’ve been feeling pretty good since Wednesday of last week. I was hoping for a full good week before starting round 3, but I’ll take 5 days. I was able to spend some quality time with the family, go out for ice cream with Eric and the kids, see my sister Sam on Thursday, watch the kids go swimming with cousins Max, Lizzy, Abby, and aunt Robin over the weekend, and I even got in a date night on Sunday. My wonderful mom Gretchen and stepdad Cabot watched Maggie and Harrison overnight while Eric and I went out for a romantic dinner at Orange Hill with an incredible sunset view. I even got to rock my wig again - I think I’m getting more comfortable in it, but still not ready for everyday wear. I’m thinking I may take it in for a cut soon - the long locks have been fun, but doesn’t really feel like me yet.
I have to mention the tragic loss of Chadwick Boseman this week. This was shocking and terrible and heart-wrenching for so many people, but for the cancer community, it was something else too. Only people fighting cancer can know the strength and courage it must have taken for him to hide his diagnosis from the world and continue to work through his surgeries and chemotherapy. I don’t know how he did this - chemo is awful and I can’t even function doing normal household tasks most days so how he managed to act in such profound and challenging roles I will never know. Perhaps he looked death in the face and made the decision to do as much with his life for as long as he could. He truly was a super hero in more ways than one and I will forever admire his bravery and determination. We could all learn from him and choose to do more - make more of a difference in the lives of those around us - push forward when all you want to do is give up.
I hope I can remember this next time I get angry at the world and want to quit fighting. I struggle every day with a mix of emotions - I’m angry, sad, scared, guilty, mentally drained, jealous, bitter, anxious. I’m grateful and hopeful too, but not as often as I’d like. I think about those people who face death and decide to life each day as if it were their last or those people who know exactly what they’d do if someone gave them 1 more year to live. I’m in this weird limbo of fighting for my own survival and I’m going to be so pissed if I’m wasting what time I have left with these negative emotions. I know feeling overwhelmed with sadness isn’t helpful, but grief is a funny thing - it can take you to scary places. I’m hoping I can take what I see around me as reason to have courage and strength. I know I have to stay strong now and trust me I’m trying, but I’m not going to hide what I’m feeling for the sake of others. I’m scared I won’t get my happy ending. I’m scared I won’t ever get to ring that bell (if you know, you know). It’s all a process. Cancer isn’t just what’s happening in my body - it’s also happening in my mind. I’m taking steps to choose hope. Maybe if I say it enough, I’ll start to believe it too.
“Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength”
