April 5th marked three years since my initial surgery. You can read the first post about my double mastectomy here, if you feel so inclined. I didn’t even realize it was an anniversary until the day after; it just goes to show how much distance time can provide. At my oncology follow-up this week (I see her every 6 months now), my doctor talked about recurrence for Triple-Negative Breast Cancer, and cited some information about the highest likelihood of recurrence being in the first 2-3 years from diagnosis (more here). I guess it feels good to know I’ve reached that point, but I have a hard time breathing easy just because of some studies. I still feel like my risk of recurrence is high and I’m not sure that will ever go away.
I felt, on this date, that it was appropriate to share a recent NPR article about NOT having a double mastectomy: Why My Wife Didn’t Choose a Double Mastectomy. Of course, the woman in this article does not carry a BRCA mutation, so her situation is different, but I did want to highlight that mastectomy is not always the best choice, even for people WITH a mutation. When I first learned of my mutation at age 22, I opted not to have surgery and I didn’t plan to even start thinking about surgery until I was at least 30. Looking back, even though I had cancer, I wouldn’t have changed that decision. I think a lot of women get vilified for choosing not to have surgery, and I think it’s important to hear that they are not alone. The choice is so personal and people should be supportive no matter what.
The other day a friend posted an angry rant on Facebook about racist names of sports teams, such as the Washington Redskins and Chicago Blackhawks. In my endless quest to find happiness post-cancer, my reaction was, naturally: “Calm the f&*k down. Life is way too short to get worked up about those things.” But then I thought about how it was truly unfair that we treat native Americans so poorly, and, for a moment, I felt bad about my reaction.
Which brings me to my next point: Are cancer survivors selfish? I often find myself having a similar reaction as the one above to people who gripe about the world’s injustices. I also see lots of stories on survivor message boards about people who were in good relationships pre-cancer, but then after cancer their significant others break things off because they feel the cancer survivor is only thinking of him or herself.
My uneducated explanation is that a brush with fatality makes us turn inward and realize that life is short and all we really want to do with our time here on earth is be happy. That might sometimes mean that other people’s drama or other people’s causes get pushed to the side in favor of our own passions and pursuits.
Of course, maybe it’s just me. I’d love to hear what others think – cancer survivors and non-cancer survivors!
In the past couple of weeks, there have been several times when I’ve paused and thought “What the hell am I doing with my life?” Mostly, these happen at work. It’s not that I don’t like my job, I do – it’s just that the the weight and profundity of what I experienced this year suddenly become so real to me that I wonder why, after it all, I am still sitting at the same desk I sat in last year, staring at the same computer, hacking away at the same 9 to 5. Hanging out with the same friends. Having the same “normal” banter with my boyfriend. Watching the same TV shows. Eating the same food.
Welcome to “survivorship”, I guess. What is it that makes people want to do something profound after experiencing something profound? To me, I just feel kind of lazy and disappointed in myself. I was confronted with what could have been (and still could be) a fatal disease, and yet, when treatment, major surgeries and major life decisions were over, I went back to the same crap I did before I was confronted with my own mortality. There is so much I would like to change about my life and so many adventures I would like to have before I die – why not start now? Because, of course, these things don’t happen in a day and there are realistic limits in life – money, jobs, family, social obligations.
What I really wanted to do was post this article about cancer “rehab”, because it made me think about all the above issues I’m dealing with. I’d love to hear from other cancer survivors who went through this.
On Monday, I had a follow up appointment with my oncologist – the last chemo follow up. In all honesty, I feel pretty awesome already. My hands are a little bit itchy and my thumbs and feet are still tingly from the neuropathy, plus I’m still bald, but I feel great. Thrilled to be finished with chemo. Thankful that on this Wednesday night I’m not dreading another infusion that would have taken place tomorrow. No needle in my port, no taste of metallic saline in my mouth, no weekend of feeling tired and worn down and off. Just normalcy… well… as much normalcy as one can feel after being diagnosed with breast cancer and undergoing a summer o’ chemotherapy.
Did I mention that I was followed around by a camera crew at my follow up? No? Well, I was. Yep, the marketing people at GWU asked me if they could film a little profile about me for marketing purposes, to post on the website and play on TVs throughout the Medical Faculty Associates building. I’m okay with being the poster-child for young adult cancer, in fact, I’m flattered they asked me. As with the pictures Rina took of me, a video of this experience will be interesting to look back on. Plus, the videographer said if I’m interesting enough (if?) he may want to turn it into a full-blown documentary!
Which brings me to my next point: tonight I attended a screening of the movie 50/50 that was followed by a Q&A with actor Seth Rogan and writer Will Reiser. In the movie, Seth Rogan plays Kyle, friend of Adam (Joseph Gordon-Levitt) who is a 28 year-old diagnosed with a rare spinal tumor. The movie follows Adam from diagnosis through chemo to surgery, all the while exploring his relationships with Kyle, his girlfriend, his doctors, his parents, and his therapist. I thought the movie was wonderful – seamlessly weaving comedy with drama and showing a, for the most part, authentic young adult cancer experience.
Many scenes really hit home. When Adam hears the doctor say “your cancer” for the first time, everything seems to dissipate around him and the rest of the doctor’s words become jumbled. Many of his friends don’t know how to respond, and say the “wrong” things to him, as in “My uncle had cancer too… he died.”
(L to R) Doug Ullman, Livestrong CEO, Seth Rogan, and Will Reiser
The one thing I didn’t like about the movie was the moment when Adam’s doctor comes out after his surgery and tells the family “He is going to be okay.” One issue for a lot of young cancer survivors is the fear they carry for the rest of their lives of recurrence and new cancers. To wrap up the movie with such a simple statement makes everything seem black and white – like cure is extremely easy to achieve. Cure might be possible, in some sense, but young adult cancer survivors will never truly be “okay”. Cancer forever changes you. I realize they had to end the movie somehow and it didn’t bother me enough to negate the rest of the movie’s positive points, but I did need to comment on it.
Go see 50/50. It’s worth it. You’ll laugh and cry, even if you have no experience with cancer.
Tomorrow night I’m going to participate in a young adult cancer patient group at GWU, so it’s a cancer-filled week! I’m looking forward to a time in my life when I won’t have to say that.
Wearing my BRCA genes 