I haven’t really talked about this much because there’s just been so much of it, and it’s hard to explain it all. Now I’m just going to put it all out there, and it’s quite a lot. Thank you for taking a little time to read my thoughts.
So, yes, the melanoma is back. It is stage 4 metastatic melanoma. Don’t google it. It’ll just freak you out, and most of what you’ll read isn’t that up-to-date because, guess what? They’ve made LEAPS in advanced melanoma treatment in the last few years. Huge leaps. As multiple Sloan Kettering doctors have told me, “it’s a whole new ballgame.”
My cancer is in my lungs, lung lymph nodes, stomach, and liver. There is also a tiny, itty-bitty little spot in my brain. It’s actually in a really great, non-scary spot in my brain, so much so that my radiologist initially wanted to wait to take care of it until after I took the bar.
My doctor (who is terrific) started me in mid-June on a combination of drugs: a BRAF inhibitor and an MEK inhibitor. It’s five pills you take daily at home. This treatment can work in the whole body but is particularly effective in the brain, so we were hoping that it might shrink the tumor in the brain and possibly prevent the need for radiation. But the treatment can have some unpleasant side effects. For me, the big ones have been fevers and joint pain. Whenever I get a fever, I have to stop the treatment and wait for it to go away (otherwise the fever could climb too high). So, after less than three weeks of on-and-off treatment, another brain MRI showed no change in the tumor. It’s great that it’s not gotten any bigger! But since it’s not shrinking yet, we decided to just go ahead and zap the brain spot with a dose of spot radiation sometime in the next couple of weeks. It’s very unlikely that I’ll have any side effects other than some hair loss, but my radiologist did say that he would write me a note if I needed an excuse for the bar exam. 😀 Brain radiation is probably the best excuse I could have for a less-than-stellar performance.
This is one thing you should google if you’re interested in learning more about why I’m so excited to be where I am: immunotherapy for melanoma. After I receive my radiation treatment, my doctor plans to start me on this fantastic new immunotherapy treatment that they’ve had great success with in the last few years. It is currently on expanded access before FDA approval. It was all over the news right before I was diagnosed, and it looks very promising! One woman who was treated by the Sloan Kettering doctors with this immunotherapy (and who had a very similar story to mine in her diagnoses) has written extensively about her experiences: http://www.theanswertocancer.org/online-community-for-cancer-immunotherapy/stories-from-patients-and-caregivers/mary-elizabeth-williams-patient-story (and my doctor is in one of her pictures!).
One funny thing about people finding out you have cancer is that all of a sudden you start hearing things about yourself without having any idea where they came from. I find this highly entertaining. A few people have informed me through their very sweet and appreciated well-wishes that I’m getting chemotherapy or having surgery, which was news to me! It’s really opened my eyes to all the assumptions out there that go along with someone getting cancer. The important thing to remember is that every single case is different, and whatever you might have experienced with other people, that really has no bearing on another person’s cancer or treatment. I’m glad that I’ve learned that. But I’m also really encouraged to see someone whose case was so similar to mine having the greatest success possible. It might sound a little odd, and maybe I’m more superstitious than most, but I first stumbled upon her story right after I had my first melanoma, and I immediately felt a connection to her situation. When I was diagnosed again, I found her Twitter feed by complete accident and suddenly remembered all I had read about her. To me, it feels like I was supposed to find her story as an assurance.
Above all, I am so overwhelmed and full of gratitude for my family and my dear friends. I’ve seen such an outpouring of support that I cannot even put into words how full my heart is. So many people have gone above and beyond with kind words and messages and favors and deliveries and even songs (yep, I have cool friends). Thank you really isn’t enough. Every single word of support has helped. People are amazing.
Having been in this for a month now, and having had lots of time to sit around and make observations about how weird my cancer is, I just have to share:
1. I lost a bunch of weight but didn’t notice because the cancer makes my stomach bloated. When my treatment first started working, the bloat went away and I freaked out because oh my god, I looked like a stick. Almost like high school! I felt like a frail little bird walking around. Now with being on treatment and off treatment and then on and then off, my stomach looks like I’m roller-coaster dieting. In reality, I’m just trying to work my appetite back up to normal!
2. I have the face of a broken-out teenager again. That’s the most minor side effect I’ve had from the treatment, but even with everything going on, I get embarrassed about it. Yes, I’m that vain.
3. My steroid dosage just doubled yesterday so I feel CRAZY.
4. Like I mentioned, my treatment gives me arthritis, so some days I move around like an 80-year-old lady. My amazing grandmother just had very successful hip replacement surgery five days ago (and is recovering wonderfully), and she’s probably already able to lap me.
5. Tig Notaro’s famous set is everything. That’s not a weird observation; that’s just a PSA in case you are one of those people who hasn’t listened to it yet.
Now a few other things I would really appreciate folks knowing (warning, I’m getting on my soapbox):
1. This is a positivity-only zone. Keep any negative energy away from me, thanks, because I just don’t do negativity.
2. As we all should in the normal course of our daily conversations, please keep unthinking comments and stupid questions in check. And really, that’s not too much to ask. That’s not meant to scare people away from checking in or asking questions about my treatment and such — I’m more than happy to talk about things! Seriously, once I get started it’s hard to shut me up (sorry about that). Plus, I’d rather you ask me than assume things. Just don’t start asking me about survival rates and shit like that. Don’t. Come on now.
3. Thank you for remembering that the only experts in my case and my care are my doctors and nurses. And they are GREAT.
4. If I seem distant, I apologize. It’s really just because I have ups and downs with my symptoms and not because I don’t want to talk to or see my friends! On good days there is nothing that makes me happier than seeing friends. Please keep reaching out to me. I need it.
5. Don’t take your health for granted. Really, truly appreciate it. And don’t fucking keep getting sunburned or do stupid things like tanning beds and shit. I don’t care about any of your excuses or your throw-caution-to-the-wind-attitude because it “feels good” — you’re being an idiot. If you have an addiction, that is separate, scary, and difficult, and I hope and pray you can get help (and please let me know if I can do anything if you are at the place where you are seeking help). If you don’t have an addiction, you’re just being an idiot. And yeah, I’m allowed to say it. Because I care.
6. THANK YOU FOR YOUR PRAYERS! PLEASE KEEP IT UP! I CAN FEEL THEM!
Right now my struggle is to not let this take over my life. It’s been pretty much the main thing going on for me, even though there should be plenty of things to distract me right now (studying for the bar, finding an apartment, enjoying a beautiful NYC summer, etc.). I confess I’ve given in to focusing so much on everything cancer-related that it’s been hard to do much else. But as my symptoms improve (as I know they will continue to, because I have decided it to be so), I’m getting on with it. Sorry, cancer, but I’m just too busy for you right now. You’ll have to take a hike.