By now a lot of you know that I have already begun what I like to call my KACP (Kick-Ass Cancer Plan). It was through multiple conversations with my doctors, nurses, and clinical research specialists that I chose my KACP. There were a lot of questions, and a lot of research that needed to be done (compliments of my Mom and Dad, who are amazingly bright and very good at figuring out how to decipher the technical medical jargon; plus the fact that SHL and I had just moved into our very first house, and we were both trying to process the diagnosis. I don’t think that either of us was up for doing this kind of intensive research). There were consultations with medical professionals outside of Dana Farber as well, and by the time I went in to see my oncologist and get my last round of questions answered, I felt really good with what I had decided. And the hug by my doctor just sealed the deal.
So on Wednesday, September 11th, I got my first dose of an FDA-approved immuno-therapy drug (most people want to know if I’m on chemo; I’m not. They’ve found that chemo doesn’t work for my kind of cancer). I brought w/ me my KACP-Team, and they dropped me off at a yoga class and went to get some coffee, while I tried to get centered. Note to self: Trying to feel grounded in a well-lit fluorescent room with strangers while maneuvering parts of your body that you haven’t used in months is not exactly a recipe for calmness. (Oh well, at least I tried). We then went upstairs to sign some consent forms (I agreed to let them use my blood for research; if I can hopefully help myself and others, then why would I say no to that?), and then went for the blood work. I wasn’t expecting this to be the hardest part, but when they had to stick my arm under warm water to find a good vein, I realized this may hurt more than I had imagined. And while I’m very used to needles from all of my health issues throughout the years (and from trips to the fertilty doctor sometimes on a weekly basis for blood work), when you wind up with a big purple and yellow bruise on the side of your arm, you realize that there really is no “getting used to” pain. They put the IV in me that I would need for treatment, and back up the elevator we went to let the infusion team know that I was there. They needed an hour to mix up the medicine (they won’t do it before you get there because it’s so expensive), so we went back down to the cafeteria where I carefully picked out a veggie sandwich to give me the energy that I needed to get through this. When I was finally ready for my infusion, they sat me in a big chair that leaned back, gave me a warm blanket, and away we went. My nurse Nancy came in to go over all of the side effects with us (some of which can be deadly if not treated right away), and I was impressed at how thorough they are: They even give you a wallet card which explains the possible side effects and which, should you ever g-d forbid have to go to the ER, you can give to the doctor so that they’ll understand exactly what kind of treatment you’re getting, with the pager number of your doctor. The social worker stopped by (turns out she graduated from U of Miami 2 years after me, we subsequently found out), and just the mention of a “support group” made me cringe. No thanks; I’m not up for sitting around a room with a bunch of people crying, thank you very much (the truth: I’m not up for sitting in a room with a bunch of people, some of for whom treatment may not be working, g-d forbid), and then it was up to my team to keep me laughing and distracted (which they did) for the remainder of the hour and a half infusion.
I've been wanting to work on my mindfulness and visualizations lately as well, but I feel so scattered that it's difficult. When I do sit down to meditate I honestly can't quite get my mind to where I'd like it to be, but I try not to judge, and instead accept that this is where I am right now (thoughts splattered onto a canvas, like a Jackson Pollack). I'm trying to learn to be kinder to myself, to unlearn years of effortlessly beating myself up for this or that (why do we this? Would we ever say half the things to our best friends that we say to ourselves? I think not). There is a lot of importance placed on positive thinking when you're going through cancer treatment, so on the days when I'm not negative, but too scattered to even be positive, I worry that somehow those missed days of positivity will affect my health. It's hard working on all of these things at once; trying to be gentle with myself, unlearning negative behavior, observing without judgement, and accepting that if I have days where I don't get to my meditation or visualizations, I'm still doing good things for my mind and my body (going to work, emailing with friends, taking a walk, blogging, starting a cancer scrapbook, petting my kitties, decorating our new house, watching my favorite shows with SHL). It's a process, I suppose, and one that I'm eager to get "just right." Like a cancer perfectionist.
Tomorrow is my 2nd dose of treatment, and I'm grateful that I can receive it, because the side effects from the 1st dose have not been pretty (they could be worse, but so could pretty much everything). And if they turn into something more concerning, then there is the potential that they would be too scared to let me continue on it. So I've been on this "brat" diet for about 2 weeks now (bananas, rice, applesauce, and toast) and I’m sure that I’m turning into a brat because I’m so starving! I miss salad, chicken, cheese, hummus, soda (which I'm not drinking any more, brat diet or not), coffee and chocolate. My friends came over last week and brought me plain pasta, and thankfully busting a gut took my mind off of the pizza in the room that smelled so darn good. I feel uneasy not having nutrition in my toolbag right now, not having control over getting in my greens and filling my body up with healthy fuel, but I know that it won't always be this way.
Tomorrow is also our 3rd wedding anniversary– how the years have flown by with moves, new jobs, trying to start a family, birthdays, summers, concerts, friends, and family. The other day I looked at SHL, as we sat cuddled in bed watching something funny, and said, "It's like having a slumber party with my best friend every night." It's not to say that we have a perfect marriage; I truly don't try to pretend like anything in my life is perfect. But there is nobody else in the world that I would want by my side. For better or worse, in sickness and in health.
I look towards the future. There are moments in my day when I get a flash of panic, but I'm not entirely sure that I'm ready to face those flashes yet. For now, I move forward with knowing only what I can know: That I am resilient. That I am hungry! That I am loved.