It's almost here. The anticipation that I feel for the upcoming completion of my cancer treatment is different from the anticipation I’ve felt for other events, like a holiday gathering or a vacation. It’s a different sort of anticipation than getting in the car or on an airplane and wondering what’s ahead. It’s different because, for the most part, I’m just feeling an overwhelming sense of relief that after fifteen months of continuous cancer treatment, I’m almost done. My first ‘graduation’ was in June 2021, when I finished an initial daily radiation and chemotherapy course post-surgery. In exactly a month, I’ll be done with the follow on year-long adjuvant chemotherapy course. My last round starts this week, and after the final two laboratory tests in July, I complete this course of treatment. This is a graduation I look forward to with immense anticipation.
Looking back over the past 15 months and taking stock of the treatment period, April - September 2021 were the most difficult months, both physically and emotionally. My family members were navigating the questions, shock, worry, fear and anxiety with me. We were taking things day to day. It took my head a long time to heal from brain surgery, and I suspect from the side effects of radiation. It was painful to even turn my head to the side on a pillow for months after surgery, and the headaches I experienced daily were like an ongoing nagging sensation that never quite went away. It took an unbelievable amount of tylenol to make it through the day.
But I did make it. The external scar across my head healed very well. The hair that I lost from radiation treatment grew back. I returned to work part time 3.5 months after surgery, and am almost back to full time at this point. The arc of inner dialogue in my head has slowly gone from ‘I’m completely overwhelmed’ to ‘this is a life challenge that came out of nowhere, but we’re dealing with it, even when it’s hard and even knowing that we don’t have all the answers or solutions right now.’
Cancer treatments affect people differently. I’ve blogged in the past about some of the side effects I’ve experienced. The worst for me - other than the fatigue, constipation, occasional lack of appetite and just general feeling of ‘blah’ - was the rash that my body developed for much of the past year during the treatment week. Luckily, with close care, it’s been more manageable for the past few rounds of treatment.
Chemo has long term effects on the body. You can’t just feed your body extremely strong medicine to kill cells methodically for over a year and expect that everything will be immediately better. That said…it will get better. From what I understand, many individuals start feeling much better physically as soon as a month or two after treatment concludes. And mentally, the anticipation of feeling better is already there.
What am I saying goodbye to as I complete treatment? On a practical level - to experiences. Trips to the lab twice a month to check blood cell levels. Pills - temozolomide, for one. Putting on gloves and taking this extremely strong drug for five days every month, and many other pills to counter the side effects. Grogginess during the day due to the side effect of medicine I take to combat the allergy to my chemotherapy drug. Extreme constipation during chemo week and several days after - who would’ve known? I do now. Lots of time on hold on the phone with the pharmacy to coordinate medicine delivery every single month. I won’t particularly miss any of those experiences as they fade into memory.
Yet - as I soon say goodbye to this phase - I need to acknowledge some of the other ways that these months as a patient in cancer treatment have opened my eyes. While I am saying goodbye to and letting go of many of the experiences associated with treatment soon, I want to remember and hold on to the love, empathy, care, compassion and generosity that I’ve witnessed and experienced time and time again since March 2021.
When I go to a local laboratory for my blood tests, I see individuals across generations waiting for whatever brings them in on those Monday afternoons. I’ve seen the same elderly woman several times, escorted by her son as they carefully cross the street to enter the building. I’ve seen the same young girl, walking in and out of her appointments with her mother and grandmother. I don’t know what takes them in, but the love and concern I’ve seen in these caretakers’ eyes has stayed with me.
I’ve sat in the waiting room for my MRIs, check-ups, and radiation treatment next to many other individuals with cancer. Sometimes, I’ve been the youngest person in the room by decades. Sometimes, I’ve seen people wheeled or brought in on a medical bed for treatment. “What brings you in today,” I’ve often wondered. I’ve sometimes struck up conversations with others, and sometimes, simply nod my head to the individual sitting across from me waiting for their turn.
I’ve been fortunate to participate in many health and wellness sessions over the year through hospitals, foundations, and nonprofits, including Duke, Virginia Hospital Center, UCSF, Magnolia House, and Yoga4Cancer. I’ve studied yoga philosophy with teachers and friends based in Washington, DC, Nashville and Hawaii, and interacted with other students participating from across the globe. These interactions and experiences have provided me with meaning, comfort, and inspiration.
I’ve seen my own family, friends, colleagues, and people I’ve never even met express care for me in ways that I wouldn’t have known possible. I’ve reconnected over the treatment period with friends all the way back to elementary, high school and university - to lifelong friends in Kazakhstan, India, Japan - to the incredibly caring and supportive community in Washington, DC who saw us through the most difficult moments. My immediate and extended family across the US and Lithuania have been kind, caring and supportive beyond belief. My mom’s friends check in regularly with her to see how I’m doing. My care teams have cheered me on. This love and support from so many individuals is what no doubt has made the biggest difference - and biggest impact - in my healing.
Even as I anticipate the end of treatment, and think about the past fifteen months, I’d be remiss in stating that this journey is over. The tumor is malignant. I’ll still have scans every three months to monitor the tumor for recurrence, and will continue to take anti-seizure medication daily. Every day, morning and night, that is a simple reminder to me that I’m never going to be over brain cancer. It’s a part of my new normal that is just one aspect of who I am and how I experience the world.
I feel great anticipation for life post-treatment. Aside from daily naps and side effects from medicine, I feel very good mentally, emotionally and physically. I feel gratitude. I know this type of tumor can sometimes involve a very excruciating recovery, and I’m so thankful for the people behind the incredible quality care that has put me on the path to healing so quickly.
I am mentally starting the transition from ‘patient’ to ‘survivor.’ I will continue to live, dream, travel, love, work, volunteer, and connect with others for as long as I can. I will continue to shine a light on and support organizations that are working to find a cure for brain cancer.
I anticipate and am mentally preparing for long-term survival.
June 12, 2022
Picture: a road ahead - Marina Bay, Richmond, California (June 2022)
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