A Long March

The Monday before my last infusion was a difficult day; not because I was feeling particularly burdened with side effects of chemotherapy, but I couldn’t stop thinking, worrying, feeling. Going into my third infusion last Tuesday the 24th, I was anxious. I felt like there was more pressure on this round to really work, so my scans on April 2nd will show that I’ve had a full response to chemotherapy and will only have to undergo one more round of chemotherapy. I knew that those feelings were irrational and coming from a desire to have certainty, at least in the course of my treatment and the duration of it, which is something I have not had since being diagnosed. 

Jason and I had a much smoother start to infusion day for this round making it over to Chapel Hill without delays due to snow and traffic, and I remembered to put my lidocaine cream on my port, so it would be numb. After finishing up port accessing and blood work, we went through the usual hurry to then wait pattern while going to see Dr. Park and Megan. After discussing my experience through round two, Dr. Park decided to add an antinausea medication to my infusion, which helped prevent nausea not only through infusion day but also for the two subsequent days. As with round two, Dr. Park was pleased with my report of round two and noted that he could only find one of the formerly large nodes, which was smaller again, squishy, and mobile (all good signs of a positive response to the drugs). My blood counts were good, so we continued up to the infusion center. My infusion started around 11:00am and went smoothly and quickly again, only being lengthened by a half hour for the anti-nausea drip. The four and  half hours of infusion seemed to fly by due to good conversation and time visiting with my friend Jessica who came to keep us company, with only the half hour check-ins from my snarky Canadian nurse. Everything throughout the day was routine and felt old-hat, because I was sitting in the chair across from the one I sat in for my first infusion, and I knew exactly what drug to expect at each interval and how long each one should take. By 3:30, we were done and heading back to Greensboro, and I was completely exhausted. The fatigue set in immediately this round, and lasted through this past Friday. I dealt with it in the same way I had in previous rounds, pushing myself through the days of work and going to the gym afterwards to then get home and have only enough energy left to shower and eat dinner before falling asleep on the couch with the girls. I had signifcantly less nausea this round and only had to take my antinausea medications a few times in the first four days following my infusion, but still battled the dulled taste buds and lack of excitement for meals through the first 10 days of this round. I also have developed some killer mouth sores starting on day three and have not had any relief despite eating yogurt daily, using backing soda/salt water rinses and Biotene. My experience has been true to the norm with the side effects compounding and worsening with each subsequent round, which gives me even more reason to hope I have had a full response by this Thursday. 

Outside of dealing with worse fatigue, mouth sores, blisters on my feet, and dry skin, I have had a much more difficult time reamining upbeat and in a good mood this round. Each day, I found myself using my daily schedule as a way to count down to the PET scan. I’ve finished meetings and realized my first throught was that it was one more thing done and x minutes down to April 2nd. Despite recognizing that continuing that thought pattern wasn’t healthy and that it only added to my anxiety, I haven’t been able to stop myself from doing so. I also have felt more easily frustrated with little things that wouldn’t normally phase me, such as trying to pack clothes for a quick weekend trip and become frustrated when trying to figure out which hats to take to prepare for different events and temperatures and then angry at the fact that I have to even bother with hats and wanting desperately to just be normal again. I’ve also realized through this round that despite how incredible everyone has been being involved, supportive, throughtful, responsive, and otherwise caring, that no one else can truly know what this is like for me. Jason and I talked about this in the first couple of nights of this round. Even though he lives with me and experiences all of this daily and knows me better than anyone, he admitted to not being able to fully understand what this is like for me and the burden of it. He gets moments, even hours, away from it where he can forget about my cancer. Whereas for me, there is no escape or break from having cancer. When I’m wrapped up in the middle of a task at work, my hat will sit too heavily on my glasses putting pressure on my nose and be a physical reminder of it. Last weekend when we were out to dinner having a great time with friends and family, I had to stop to study the menu to figure out what I could safely order because of my dietary restrictions due to cancer, which were moments that took my presence and attention from five of the people I love most in the world. There are numerous nights where I wake up after having a crazy dream about side effects or nightmares of the worst possible outcomes. These are only a few examples of the many ways that, at least for the time being, I am a prisoner of this disease. Making it through the anticipation of the upcoming PET scan and the frustration and anxiety of the daily walk through this round can only be described as a very long March. 

I am desperately hoping for a reprieve as the end of March draws near and I step closer to finally knowing the course of my treatment. I hope that the the new month will bring with it the final days of my treatment. To clarify the purpose of the PET Scan on Thursday: it the test to show how effective the chemotherapy has been in killing my cancer. Because I am participating in the clinical trial, my scans will be reviewed by Dr. Park and also by the clinical trial doctors. If both Dr. Park and the clinical trial doctors review the scans and determine I have had a complete response to chemotherapy and therefore the scans are negative, I will have to complete one more round of chemotherapy starting on Tuesday, April 7, making for four total rounds. If Dr. Park reads the scans as negative, but the clinical trial doctors disagree and see any positive spots, then we will have to determine whether I stay in the trial, which would have me start radiation immediately, or whether I withdraw from the trial and complete three more rounds of chemotherapy before having another PET scan. The same would be true if both Dr. Park and the clinical trial doctors agree that the scans are not clear (positive). In either of the latter situations, we would discuss the extensiveness of the remaining cancerous cells and then weigh the risk of the exposure to radiation versus the exposure to the toxicity of more rounds of chemotherapy and each of their likely effectiveness to determine the course of my treatment. I have a very busy three days of work ahead of me prior to leaving to stay in Chapel Hill Wednesday night before the scan Thursday. I hope I can tap into a deeper level of rationality and lower amount of emotion in the upcoming days than I have felt in the past two weeks, so that I am prepared for the scan, the waiting period for the results, and any decision that I may have to make. 

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