Last month I officially hit the six months post chemotherapy mark. As with most everything else associated with cancer, it came with mixed emotions. In some ways, the past six months feel like an eternity, and, in others, it feels like seconds.
To catch you up on the past two months or so (yikes…I’ve been a bad blogger), I’m going to start with a recap of my last appointment on October 6. As I mentioned in my last post, to keep this succinct, there was a lot of confusion and frustration over my last appointment. Prior to going to UNC, I had three differing sets of instructions as to the schedule: 1. Barbara Riff (my new clinical trial coordinator) contacted me and stated Dr. Park recommended pushing out my scan to April 2016; 2. at my July appointment, Dr. Park and I decided we would do another scan in six months (December/January) to avoid unnecessary exposure to radiation but to check on any signs of relapse (since it’s most likely to happen in the first months (and two years) post treatment) and would then consider extending to longer periods between scans; and 3. Justin, Dr. Park’s scheduler called about two weeks before my appointment to say Dr. Park put in an order for a scan on October 6. After significant frustration over two week period prior to my appointment, I finally got it cleared up only a few days before my appointment that I would be going in for blood work and a check-up (as we had planned in July). During the several weeks before the appointment, I was feeling increased anxiety about it and my health, and this confusion only added to my whirling emotions. Additionally, during September, Jason and I were making major life decisions, and after great deliberation, I accepted a new job and was trying to set the start date around this appointment. In the end, it all worked out and I started work Friday, October 2, prior to my appointment.
The day of my appointment, I oscillated between being cautiously optimistic and (but mostly) terrified and worried. After having blood drawn (and kind of missing my port and the lidocaine cream), the appointment went smoothly. All of my counts were normal (for someone 5+ months post R-CHOP). I got a flu shot for the first time in my life, since I am more susceptible this year. I also discussed the confusion over the scheduling of the scans with Dr. Park and Barbara, and did not quite get an explanation to my satisfaction. Dr. Park discussed new researching showing longevity isn’t affected by having scans post treatment and the desire to limit exposure to unnecessary radiation. There was no reason to review my file between appointments, and I think more than likely, the confusion came from the change in my clinical trial nurse. Based on all of the discussions I have had with Dr. Park and my brother and on other research, I decided to proceed with the scan in January for my peace of mind, and then at that point, we will hopefully decide to push scans out to yearly. A large lesson to note from this is that you as the patient must always be your best advocate and keep notes and be on top of research and cognizant of outside factors (ie changing medical team members) and undiscussed changes in plan that could affect your health, including mental well-being. All in all, I walked away hugely relieved that I continue to be in remission and healthy.
I have continued to see chemotherapy side effects diminish or disappear completely. Since July, I have gone from having one chemo-feeling fatigued day per week to fewer and fewer, and I think in the past month my energy levels are pretty much normal. I still focus on getting a solid amount of sleep and don’t feel guilty taking naps when I need them (although it’s a bit harder with work). My digestive system is still really sensitive and tends to either work in overdrive or not at all, which is annoying, but manageable. Dr. Park was a little surprised that I was still having issues, and said that if it didn’t clear up by my January appointment, we would re-address and consider any necessity of consulting with gastroenterologists. My skin is more sensitive and drier than it has ever been, but nothing like it was during chemo or the first several months afterwards. I get blisters relatively easily on my feet if running/walking long distances and on my hands when lifting weights, so I have to be aware of noticing the first signs of them and discontinue the activity. It also still takes a bit longer for wounds to heal, but again the frequency and severity are lessening. I also am getting close to needing to take up stock in L’Occitane (their body lotion, hand and foot creams are amazing moisturizing, but soak in cleanly) and Nivea (lip butter…oh la la. I love it, and have containers of in every bag and in every room in our house), but thanks to two very thoughtful friends who sent me these items when I was starting treatment, I am able to manage the dry skin and lips. My hair is continuing to grow back, and it’s continuing to grow faster. My attitude toward my hair has changed over the course of the year. I am certainly glad to have hair again and not be bald constantly having to wear a hat to keep warm and protect my hair, but I don’t obsess over it in the same way or link my identity to my hair anymore. Oh, and my hair is now curly. Through September, I thought I was going to be one of the people whose hair returned to its previous state, much in the delusional way I thought I would somehow not lose my hair through chemo. However, now that my hair has enough length to have a noticeable texture: it’s curly, and I have no damn idea what to do with it. My mom laughs at it frequently, including to my face when she first saw me in October and couldn’t do anything but cackle as she told me my hair was curly like hers. In addition to being curly, it’s now several inches long, and I still refuse to have it cut, because of fear of reliving the memory of going to have it shaved, because of the fear of relapsing and losing it, and because I want it to grow (I am not a fan of short hair; it’s much harder). So for now, I have a solid collection of headbands, and let it air dry and do whatever the hell it wants.
Through October and the early parts of November, I had a constant level of anxiety that I didn’t expect, but I think it was due to the fact that I am approaching the one year point of when this all started. On November 18 last year, I asked my gynecologist about my neck balls, which was the start of my journey down the rabbit hole. I had my annual exam with her a few days before Thanksgiving, and dreaded going for weeks in advance. She’s a lovely woman and an amazing doctor, but as much as I have been reliving the pre-diagnosis memories in the past month and a half, and going to her office was the first concrete step I took last year toward my diagnosis. I made it through the appointment and felt relief afterward, in the same way I have leaving Dr. Park. Dr. Mody gave me a clean bill of health and was able to confirm through a pap smear that the chemotherapy has not caused immediate, long-term damage to my cervical cells, which was a possibility. I think issues like that one are small examples of the post-treatment issues that cancer survivors face that others either are unaware of or cannot understand. I have noticed a shift in people’s response and reactions to me now, and because I look normal, people no longer see the cancer. They see a normal looking almost 29 year old woman with short curly hair, and have no idea that the short curly hair is the result of a life-altering event.
During the several weeks, my thoughts and emotions have shifted from anxiety to more of a deep introspection and reflection, but they are a constant weight on me. I wake up daily very aware of when and where I was on each day last year through this period and vividly recall the thoughts and emotions. I fortunately am not experiencing the fear of relapsing as much as I would have expected. (As I wrote that last sentence, I immediately felt my chest tighten). I know that if I relapse or face another cancer, I can handle it. I can beat it. In a strange way, I have some comfort in knowing that I have done it, and it is not the great unknown like it was last year (although I understand relapsing or battling another cancer would probably bring a worse prognosis than my last).
My thoughts and emotions will continue to be mixed and shift as I take steps through these major markers of being in remission and being able to count the days, months, and eventually years from each diagnosis, procedure, and treatment. I have fortunately been extremely busy with work and pro bono activities in the past six weeks, and have escaped for frequent weekend trips. I also planned a trip to Panama for the one year anniversary of my diagnosis on December 23, and for Christmas, my birthday, and my and Jason’s one year anniversary. I wanted to not be in the States for that day and celebrate health, life and love, which are perfect things to celebrate during the holiday season.