Wednesday, June 4, 2014

Cancer: A Retrospective

Eight years. That's 2,928 days. Or 70,080 hours. That's how long it's been since I was diagnosed with cancer. I've been thinking a lot about this upcoming cancerversary because the last check-up I had with my dermatologist resulted in two biopsies. It had actually been two years since my last biopsy, which was a record length of time for me, since my diagnosis. One of the biopsies came back atypical, and the pathologist recommended going back in to get clearer margins, which I decided to do, because I don't believe in watching and waiting, given my history. The result of my choice is that I will have stitches on my cancerversary, which hasn't been the case any June 5th since the day the phone rang and it was cancer back in 2006.

The stitches I have right now have caused me to do a lot of reflecting on all the ways things are different in the world of cancer today than they were eight June 5ths ago. These are the ways the world of cancer has changed in the last eight years, and happily, it's all good!

1. Stupid Cancer: When I was diagnosed, I searched the internet, library and hospitals for some kind of support for people my age. There. Was. Nothing. Within the first six months of my diagnosis, Matthew Zachary- now a cancerlebrity- launched his site 'I'm Too Young For This!' and the young adult cancer movement was born. I met Zachary in 2008 at the Livestrong Summit, and he very quickly solidified a cohort of young adult survivors at the summit and has continued to pull together a once unidentified population into a unified and recognized group. I2Y was later transformed into 'Stupid Cancer'. To date, the Stupid Cancer Facebook page has close to 188,000 likes. It's a pretty big deal.

2. Young Adult cancer is a thing. Eight years ago, it wasn't. There was a time when organizations like the American Cancer Society denied the existence of young adult cancer and grouped individual survivors in with all the other survivors of the same type of cancer, so at the time, I was clustered with a whole lot of middle aged men, because that's who was primarily getting melanoma eight years ago. This has also changed, and melanoma is now at the top of the list for young adult women. 

3. There are entire organizations dedicated to meeting the needs of young adults who have cancer. I went to Montana and attended a camp that primarily focused on children, but did a twice-per-year retreat for young adults. I had to go practically to the other side of the country to meet  people under the age of 30 who had cancer. Now, there's still Camp Mak-A-Dream, but there's also AKP ski and bike retreats, First Descents kayaking, surfing, and rock climbing retreats, True North Treks, Athletes for Cancer/Camp Koru, just to name a few. 

4. Now that young adult cancer is a thing, there's legit research being done. I've participated in a TON of studies...One longitudinal study through Duke University that set out to demonstrate the long-term benefits of adventure therapy in the form of First Descents camp, as well as a whole host of others that focused on identifyiing needs, support modalities, gaps in medical care, and emotinal well-being, just to name a few. The next step is improving the stagnant survival rates for young adults. Given the progress we've seen in the last eight years, I'm optimistic. 

5. The potential return of my cancer is no longer a death sentence. When I found out my cancer had spread into my lymph system, I did a year of interferon 2b-Alpha because there wasn't anything else I could do, and I wanted to buy myself time. If my cancer was going to return, I hoped I could delay it just long enough that there would be some drug that would treat stage IV melanoma, because it 2006, there weren't any. Stage IV was a terminal diagnosis with a three-months-to-live prognosis. The Boston Globe just published this article detailing the progress that's been made in treating advanced melanoma. Thankfully, people are finally living with stage IV melanoma, not just dying from it. 

6. Young adult cancer is being portrayed in books, movies, and on TV. Clearly there couldn't have been press and media about young adult cancer when it wasn't a thing, but it's notable that within the week of my eighth cancerversary there is a movie coming out that depicts the love story of two young adult cancer survivors (the film adaptation of John Green's The Fault in Our Stars) as well as a TV show focused on a young woman diagnosed with cancer (ABC Family's Chasing Life). 

7. I like going to the oncologist. We go way back. There was a lot I didn't know about him when we first met, but he got to know me pretty quickly when I was at the hospital ALL the time for a whole year. He's been amazing all along, listening when I told him I needed steriods to cope with the chemo, being flexible on how often I had to get CT scans when I got concerned about all the radiation I was being exposed to, and calling my mom that time my phone was dead when he had to tell me it looked like I'd gone metastatic based on the scans. He always knew just what to do, or it seemed like it, since he listened to me and let me be a part of all the decisions. What I've learned since then is that he treated me like his daughter, which wasn't hard since he actually has a daughter who's right around the same age as me, in the same field, and we've crossed a lot of milestones right around the same time. These are the things we talk about when I go to see him every six months. After eight years, it's as much social as it is medical.  

The world has changed for me and for young adult cancer survivors in general. At the risk of sounding like a crotchety twenty-nine-year-old old woman, I'd like to point out that things have changed a lot since I was diagnosed- I can only imagine what progress will be made as I rack up the cancerversaries in coming years. Here's to many, many more!


1 comment:

  1. Hi there! My name is Cameron Von St. James and I had a quick question for you & was wondering if you could please email me when you have a free moment. Thanks! I really hope to hear from you soon and appreciate you taking the time. ☺ cvonstjames AT gmail DOT com

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