Tuesday, July 12, 2011
Everything was going well until ... it wasn't.
When I was growing up I used to get in trouble if I used any form of the word “suck.” Well mom, some things just suck. Tumors suck, cancer sucks ... suck, suck, suckity suck. Everybody knows it. Up until my own experience, cancer hadn’t touched my life personally. I had only seen it portrayed on tv or in movies. Nothing about my cancer journey was really what I expected. I thought in chemo I would be miserable, vomiting, frail and bed ridden. But thankfully I tolerated it really well. Unusually well, I thought. I thought I would be eager to be done and back in the real world. The latter has proven to be the most difficult part.
It all began with an itch. I wish it was the figurative itch like an itch to travel around the world but instead this is the literal itch. Nonetheless, it was the beginning of an adventure. I’ve been known to take a midday cat nap and one fateful day I woke up scratching my legs and feet like crazy. After the itchiness persisted for more than a week I went to my primary care doctor who kept asking me about a rash that did not exist, did blood work that came back normal and sent me on my way to a dermatologist. Dermatologist’s diagnosis: eczema. Antidote: shorter, cooler showers, less soap and vaseline (lots of vaseline). I felt dirty. I felt gross. And I felt worse.
I only saw that dermatologist and his voodoo medicine twice before I turned 23 and lost my health insurance. Off to fend for myself I began to uncontrollably cough (usually in your face) and once I started it was difficult to stop or catch my breath and each time I would nearly vomit or pass out. I dreaded anything funny because laughing got the coughing fits started too. It became difficult to breathe while laying down flat and I usually had to sleep nestled in the corner of our couch or steal pillows when everyone went to work to create a pillow “teepee” to perch myself upright. I remember sending a text one night that said “I’m afraid this is going to be something I can’t handle or afford.”
Shortly after that text I found myself in the ER, my heart and lungs were surrounded by immediately life threatening amounts of fluid, a huge tumor in my chest and lesions in my liver. I was finally diagnosed with stage IV Primary Mediastinal Large B Cell Non Hodgkin’s Lymphoma. I started chemo immediately and all was going well until ... it wasn’t. I stopped responding to chemo. I was immediately put on salvage chemo (the first of which failed too) and shuffled off to have stem cell transplant. In conjunction with the stem cell transplant I participated in a clinical trial for Bexxar which made me radioactive (but not a superhero, I thought I should at least glow green or something). On 09/09/09 I finally heard the sweet word “remission.”
Since then I’ve been active in starting up the San Diego chapter of the I’m Too Young For This! Cancer Foundation for Young Adults, volunteer at the Leukemia & Lymphoma Society and active with other cancer non profits like Imerman Angels and First Descents. I’m really passionate about connecting with and advocating for young adult cancer survivors.
I thought being a cancer survivor and not a cancer patient would be the easy part. I thought life would continue as normal but now I would have a few extra battle scars and some cool stories. Being a survivor is really just the beginning.