The capacity to experience so much

It has been a while since my last post. I do intend to write more now, so I hope the time in between these posts gets shorter and shorter.

I was so excited to be done with treatment and stepping into the survivorship phase of my life, and I still am. But I guess the thing is that I am just hitting a wall. I am reflecting that I was chasing experiences, chasing presence, and time with friends and family because I was in a race against time. A race to exist and consume as many experiences and memories to urgently yell “yes, I did lead an active and full life!” in the face of cancer. I overcompensated, and I truly do not have any regrets about that; however, I am just reflecting on the energy drain and the repercussions of my actions. I’ve kept a low profile, and I’ve also had to contend with the anxiety about my scans. The scan anxiety was so consuming and infested every thought with a little “what if it came back,” “what if treatment wasn’t enough?” Not to mention, I encountered a really unpleasant (really unnecessary) experience with trying to get my mammogram done with staff who were outright rude and unhelpful in the process. I cried in the parking lot and advocated for myself. Granted, I made a middle-aged man uncomfortable with it all (the manager of the department), but so be it – I made my experience known and provided feedback so the hospital can be mindful of these kinds of interactions. That was a moment that I was proud of in hindsight – I don’t want any other patient to experience what I did, especially when trying to get a mammogram that is already SO loaded with meaning and repercussions based on the outcomes.

Thankfully, the scans delivered good news, and it really made me feel confident that my body made it through treatment well enough and the cancer isn’t back. The oncologist noted that, given my young age, he also wanted an MRI to double-check everything during the next round of scans. I am on a 6-month cadence for 3 years, and then if clear, I move to yearly. I will advocate for more since it was noted that once those 3 years pass, the likelihood of it recurring drops to nearly zero. I will also advocate for continued genetic testing every 5 years to continue trying to figure out what triggered it – at the very least, continue to add to the database and provide information that could help someone lead to a breakthrough in treatment (and for me, try to figure out the answer to what “variant of unknown significance” really means). The oncologist was honest and said that in his care, he’s only seen 2 patients whose cancer returned right before the 3-year mark. I am praying and speaking into existence that this will not be me. In therapy, I’ve been able to work on reframing the fear of recurrence. Now I am reminding myself that recurrence is now akin to a car crash. We don’t know if it will happen, but there is a likelihood based on additional factors beyond our control. A car crash is a traumatic event, and that’s what recurrence is too. At least that’s what has been helping me reframe the situation and keep my mind at ease. There is treatment available, and I will have a fighting chance. I’ve learned about women who even have metastatic cancer who have lived decades beyond their initial prognosis. Yes, this means living a life akin to managing severe chronic illness, but science is truly an incredible process to give people a chance. I was seeing the progression of treatment for the cancer I was diagnosed with, and in 2016, I would not have had the treatment options I have today. That is absolutely shocking to me. I hope we continue to make progress in finding a cure and in providing supplemental support to help patients get the care they need and the support they need post-treatment. Again, just speaking into existence that I will live a life free of cancer and live a long and healthy life.

Now, with distance from this whole period of treatment, I have moments where I am shocked I actually went through this ordeal. It’s starting to feel nice to say, “This was over a year ago, and I am still here.”

In terms of existing post-treatment. I’m working with new doctors to help figure out the next steps and work on my pain management. I found out the dosages I was given during treatment were far lower than needed to effectively manage my symptoms. So in reality, I was receiving little to no pain management options, period. The new doctor was shocked that I was given such low doses, and we are working to increase them. And here I thought the medications were not the right fit for me because they didn’t touch the pain. I am looking forward to receiving an oncology massage in the next month, and I am also excited to continue to explore options for complementary treatments to help me. I’ve accepted I am a geriatric 32-year-old, and now I just need to find ways to have an easier life. While I am not in active treatment, I am now faced with symptom management, while every professional tells me, “I am healthy again.” By their standards, I am good, and I am okay with that – I just wanted a little more care and heads up on what to expect for recovery.  Anecdotal reports state that within 18 months, they felt back to normal, while others have lifelong or 8-year-long battles with issues before they resolve almost overnight. I wish to wake up one day and feel normal, and the sooner the better. Prior to the onset of neuropathy, I was toying with the idea of running. Now with that off the table, I’m emotional about it. It’s not the running; it’s just the acceptance that this choice was taken from me, and I am unsure whether it’s forever or just for a little while. But again, a day above ground is a blessing. I am thankful to be alive and to experience existence. My mood, while deflated, has still been one of gratitude and positivity.

That changed this past week; I received saddening news that my aunt had passed. She battled breast cancer years ago and did it in the best way she knew how. I felt that because she survived, I would survive. It was only natural, not a question or a doubt. It was a given. She was a stoic, fiercely independent woman. I looked up to her for living her life as well as she could, given the societal constructs within which she was restricted. Towards the end, she wanted to maintain that independence and struggled to accept help. Her passing was not unexpected. It wasn’t cancer returning; it was just age and the process we undergo when our bodies reach their end. She passed in her sleep, and my mom was with her. As I write this, I am tearing up. For her, for my mom (with whom she was the closest), and for all of us. I am so thankful and grateful I got to tell her I loved her the day prior. I am so thankful and grateful to have gotten a hug from her, granted years ago, but she was never fond of physical affection, but she gave me one. Rather, she allowed herself to be hugged by me. That’s something. I miss her voice already, and I miss her asking me if I was doing homework (she remembered me from that period) and telling me how happy she was that I got to study. I miss her complimenting and being in awe of my moon face from steroids – she loved my cheeks lol. She would always sit in silence with me and just make statements about how odd it was that we both got cancer and how we both made it through. Just noting what an experience it was. I know she wanted to share more, but I don’t think she felt comfortable doing so. The funeral happened quickly, and I was unable to attend. FaceTime is such a blessing. I spent the weekend with my sister and brother, and we just Facetimed my mom as they were making preparations. The flowers were beautiful, and the setup was lovely. It made me so happy to be part of this culture, where we have rituals to help us process the passing of a beloved. In the midst of these preparations, so much was going on in terms of family coming and who wasn’t, and familial tensions. It made me angry. I’ve felt far more anger during this period of time than when I was undergoing chemo or thinking about my diagnosis. Even more sadness than when I was processing my own situation and diagnosis. I have been weepy with no sight of an ending. The anger is directed at people whose actions throughout their lives are incongruent with their words, people whom I find detestable. Am I blowing things out of proportion? No, I am mad at them, and my anger is warranted.

I’ve been unmotivated to do anything. This is compounded at work, and I am far too tired. I am far too exhausted. This week has been tough. I am not feeling like myself, and it’s akin to those periods of exhaustion from chemo, but inverse. During chemo, I felt active mentally, but physically, my body was not working as expected (from being systematically poisoned), and now, my body has a little more energy, but mentally, I am feeling deflated. Make it make sense. I sure can’t.

I am proud of getting my butt out to walk after work and continuing to journal. I am proud that I reached out to my therapist to process this situation. I am proud of this capacity to experience so much. I am not equipped to manage it effectively, but it is what it is.

I hope to write about other happenings soon. I felt I’ve been too solipsistic, and I am frustrated that I’ve been withdrawn. If I haven’t reached out to you or seem myself – I guess this is why. I’ll be back eventually to engage with the world, my friends, and my community.