Clarissa was diagnosed with Hodgkins Lymphoma just after her 21st birthday. She had trouble breathing and doctors prescribed countless antibiotics thinking it was something bacterial. After doctors realized that antibiotics were not the solution, she was diagnosed after a CT scan. She began chemo pretty quickly, and at that time, there wasn’t really any AYA support groups in her area. She remembers being around “a bunch of old ladies” who were always pitifully looking at her like “poor baby.” The rounds of chemo, steroids, and lack of social support made her treatment difficult. That, and the undeniable feeling of being treated like a child despite the fact she had just turned 21. One doctor even told her she should “technically be in pediatrics” – which is not how you want to be approached as a patient going through intense treatment. Her cancer shrunk, but then grew larger than it was when she was originally diagnosed. She was later re-diagnosed with Grey Zone Lymphoma, taking her through another treatment cycle. After multiple failed chemos, immunotherapy, radiation, a 100 lbs weight loss (to which she commented “at least I had 100 pounds to lose”) and finally a Stem Cell Transplant, she finally doesn’t feel sick all of the time. She’s 126 days post-transplant and waiting to be scheduled for biopsies because unfortunately, her scans haven’t come back clear.
While her anxiety falters from time to time, her health seems stable despite her recent scans. She recalls a time between treatments when she and her family went to the Santa Cruz beach boardwalk and she had to be in a wheelchair the entire time. Weeks before our workshop around Vivibot, she found herself back at the boardwalk with her family, but this time no wheelchair was needed, and she was able to walk on her own. She brought her younger sister Madison with her, and they both were able to explore the highs and lows of treatment. Her diagnosis made her feel closer to her family, and now they spend a lot more time together. Her “nurse mom” as she referred to her mom, who also happens to be a nurse, takes care of her. Clarrisa mentioned while she loves Vivibot’s relentless positivity, when you’re a survivor or in treatment sometimes you don’t always want to be forced to see the good in everything. “Sometimes you just want to be angry, and be okay with being angry and not having something tell you to be positive because you don’t want to be.”
More about the Author:
At the time this blog was written , Clarissa, had two consultations for two different trials in two different states within two days. First, a consult at Houston Methodist Hospital for a CAR-T cell trial then an appointment on Friday at City of Hope, to discuss options with her doctor before her CAR-T cell trial. They decided on an immunotherapy treatment with additional medication to ensure the immunotherapy sticking. She planned on going back and forth from the LA area every few weeks for that treatment.
An Update from Hopelab:
The Hopelab team learned of Clarissa’s passing on September 20, 2019. Clarissa loved helping others, especially people those experiencing similar situations to hers. Among her many hobbies, Clarissa enjoyed traveling with family and friends, reading books, and blogging about current events, including her cancer journey. After her passing, we spoke with her family and they ensured us that Clarissa would have wanted her story to be shared with others. We all agree that this would have made her happy. Thank you for sharing so much with us, Clarissa. You are missed.
