I am finally on the other side of this new chemo’s first infusion. One oncologist once told me that the first one was the worst and this was true for my very first infusion so I sure hope that it will be true for this one too! It was not pleasant to say the least and brought on new side effects that the other didn’t but as a whole, I must admit, I did bounce back faster and was able to be out and about quicker than I had when I started my first big gun chemo.
All last week though, I was planning a pity party. I thought that if I held an official party, it would come and go, and help contain the last wave that knocked me off my feet. I am still getting over my last blow, digesting the news, “accepting” it, redefining my expectations and moving forward. Of course this is not a fluid process and I jump from one to the other with thoughts I thought I had dealt with in the past resurfacing. Of course, how can you not feel like this whole thing is unfair? To me, to my husband, to my precious kids, to our families and our friends? I think that my biggest hangup has been the redefining of my expectations. I am pretty educated and have researched my diagnosis quite a bit so I am totally aware of what I am facing, despite the fact that I decided to not believe my initial prognosis. I know the nature of the beast and what it means to have been diagnosed with a Stage 4 cancer, one that has metastasized. Nonetheless, all last year, when I “only” had one distant organ affected (my liver), I still held on tight to the hope that one day I could become NED (no evidence of disease) and remain NED for a long time because I had talked to real people for whom it had happened. I knew my odds were slim but I also know that this is exactly where I drew my strength, in that very hope that I could be one of the them. This was going to be a tough few years with a bright silver lining. Now that my lungs also have some spots, that slim chance now feels pretty impossible. I asked on my forums if some people were able to achieve NED after both lungs and liver were affected. Everyone came back with “maybe you need to change your expectations” and I was encouraged to focus on “control and containment for longevity”. I guess this is what others in my shoes do, and again I have personally met with a group of 5+ years survivors of stage 4 colorectal cancer so I know it is possible. But here’s the catch and where I need to do more soul searching: living with active disease actually means living in “active treatment” and if you had asked me last week, the day after my infusion, I can tell you that my answer to how long I wanted to do that for would have been very different than the answer I can give you today after spending quality time with my husband and kids this weekend, feeling the love that we all have for each other. When my son said “mom promise me you will never leave me”, I knew this was not a promise I could make but I could promise him that “I will do everything that I can” and that’s what I always want my kids to know about me. This promise comes at a high price but not one that money can solve. In my world, it means sacrificing every other week to be able to have a “good” week, or what normal people would consider a “normal” week. Doing everything that I can is what I have been doing for the past 18 months, despite chemo, radioembolization, changes in my diet, daily juicing, healthy supplements carefully researched, therapy, meditations, and whatever else, the cancer still found a way to spread more. Unlike anything else in life, hard work is not a promise of good results. That’s another thing I need to come to grips with. I have always set high expectations for myself and always found a way to achieve my goals, not always through the path I had envisioned, sometimes through long and hard detours, but in the end, I got what I wanted. With cancer there is no promise, the rules are totally different… Math has never been my forte but if I get this right, having a good week every other week pretty much means “half of the time” and this is what feels so bleak, why do I get to live a half life? I need to find my hope again where I can draw my strength. I need to believe that molecular oncology is coming soon and not in 5 years. Molecular oncology identifies specific mutations within tumors and then matches you with the best treatment options. My tumor was just tested and I am awaiting the report. However, we are not there quite yet. If my results indicate that the tumors would respond better to let’s say a breast cancer chemotherapy, my insurance will not cover it until I have exhausted all the “standard treatments” for colon cancer even if my type of cancer would be said to not respond… We still have a ways to go but again identifying the tumor mutations is also good in identifying potential immunotherapy trials I may be eligible for in the future, hopefully the near future. This is my biggest hope that will help me continue to give it my all, even when the going gets rough.
So this is what I have been trying to deal with when I am not busy trying to do more research on “what else” or “what more” I could be doing. My hard work, meaning all the frantic research I have been doing online on different cancer fighting strategies actually earned me a badge. While discussing my last results with my local oncologist, I of course came prepared, with a list of questions. I had a good chuckle when he froze the moment after a question I asked him. He stopped, looked at my husband and told him that if he had not realized how smart I was, this very question I had just asked him truly showed how smart I was. (I have been using every opportunity to remind my husband! lol). But seriously, other than the nice pat on the shoulder, this was such a change from my previous oncologist who would just roll her eyes, trying to ask my husband if I was always (neurotic) like that and tell me I must be “one of those people who spends to much time on Google”. It’s all about perspective isn’t? But seriously, I feel that he is very engaged in my case and willing to consider every option that we can find, it really feels like we are working as a team. I must say I am super happy that I switched. I feel for him though, I had such an uneventful first year and ever since I started seeing him, he is picking up the messes and it has been one thing after the other. From the gallbladder issue, to the surgery, to the last scan results and getting texts from my Shands GI oncologist on Friday and Sunday evenings! Now I even had to put a little spice into his day on my first chemo infusion. I had told the nurse that I could feel a twitch in my eye but she didn’t seem phased by it. Then when I was close to being done, I called my in-laws to tell them I would be ready in 30 minutes. Talking felt weird, as if I didn’t have full control of my tongue and couldn’t pronounce certain words and then certain muscles in my legs started twitching uncontrollably, it was as if I had worms crawling in my legs that we could see moving through my pants! So my poor doctor was called upstairs and I could tell from the look on his face that he had not seen this before! The big gun chemo was done and the other one was almost done. They stopped it and pushed saline waiting to see what would happen. It was an atypical reaction and not one he thought could be helped with Benadryl because it didn’t seem like a histamine reaction. He came back about half an hour later and told me he had to look through “case studies” – count on me to not be your text book patient, just like one of my doctor’s at Shands likes to remind me by telling me that I haven’t read “the” book. Oh well, I guess I am not your typical patient! Anyways we are not 100% sure if it is the chemo or a drug I was given first to counteract the chemo’s side effects that caused the reaction but I am just happy that it wore off after a few hours. I searched my forums to find out if anyone had experienced that same reaction and did find one person. Ironically, this is someone I now consider a dear friend. She was diagnosed about one month before me and is a young mom of two beautiful girls. The weirdest thing is that her cancer spread to her lungs just about one month before mine did and in the same manner than mine did, with spots that are not resectable. I had exchanged a few messages with her before and had the chance to meet her in person when I went to DC. I have learned a great deal from her and she constantly inspires me to move forward. In any case, I was relieved to hear that her reaction did not last as my options are very limited. It is not as if I could tell my doctor, I don’t like cherry can you please give me strawberry? I need to push through these side effects and keep my fingers crossed that they will disappear too. I can’t afford to lose such an important ingredient to my cocktail. I will now be enjoying the next few days and maybe even have the chance to escape for a little weekend getaway before my next infusion!