“Another 3.5 hours to go,” I thought to myself, staring at the clock on my desk at work, waiting and hoping for each slow minute to go by without an interruption by the phone, a co-worker, or my boss. All I wanted was to be left alone; a tall order when you work in an office, and your job is to be available via the phone for people who need things. (The phone literally rang as I wrote this; perhaps bad reception? Nobody is there, and my rule now, as my patience wears thin, is to say hello twice, and if nobody responds, then I hang up).
I am bitter that I have to be here today. Bitter that I need health insurance (though everybody does). Bitter that other people are complaining to me about their problems, when I can barely get a plain bagel down because of side-effects from the cancer treatment. I am so lucky that I have health insurance, and that insurance covers my treatment. I am so lucky that I have a job. I know these things. But today, I just can’t seem to stomach any of it (let alone the bagel), and I wonder if I let myself go to the depths of despair, if people will still want to read my words. “You’re in the trenches with me,” I think, as I write this post. I wonder if something bad (even worse) will happen to me because I have complained. At some point, I’ve got to be positive, I tell myself. And I know this to be true, not just for my readers, but for myself. But even Kris Carr (who I’ll be quoting a lot in this blog) says that it’s OK to have a couple of days where you feel crummy; the “3-day rule,” she calls it. After 3 days, it’s time to get out of those sweats, and get back into the game. I’ll count today as Day 1.
Yesterday was a treatment day. SHL and I got couples massages in the morning for our anniversary, before we headed to the hospital. It was a strange day. Never in a million years would I have thought exactly 3 years earlier, on my blissful wedding day, that on our 3rd wedding anniversary we’d be spending it at the Dana Farber Cancer Institute. We enjoyed the massages, but I think that we were both preoccupied with cancer.
At the end of the 8 hours, which includes travel time, blood work and an IV, a million questions and an exam by the physician assistant, a break while they mix up the medicine (in which I picked at some plain grilled chicken and pita bread, as much as I could tolerate), and then the actual infusion, I was exhausted. Team Lozier kept me busy reading me funny stories and doing crossword puzzles together. But by the time I walked into the door of my house at 8:00 last night, I could barely stand, let alone try to eat anything. It wasn’t as if I was running a marathon, a lot of the day is sitting down and waiting, but of course it’s the emotional stress that takes a toll. I dread getting the IV put in (I advocated for myself to get the smallest needle possible and they called my nurse who said that was fine, but they still can’t put in the crease of your arm, so it often goes in the hand and it hurts!), and of meeting w/ the PA and thinking “one wrong move on my part and they may not let me continue with the treatment,” and so by the end of treatment day, I feel as if I haven’t slept in days.
What’s ridiculous is that I’m on intermittent FMLA, but I’m hesitant to use it. I’m scared of what will happen if I use up the 480 hours. (Short-term disability? Will I lose my job? And most importantly: What will people think? Shouldn’t I be strong enough to handle 4 doses of an immuno-therapy drug? Some people’s treatments are much more intensive). My Mom told me recently that even as a little kid, if I was sick and had to stay home from school, I’d feel guilty, like I was missing something, or letting somebody down. This hasn’t changed. So now I push myself to go to work, even though what I’d love nothing more is to go home and take a nap, or read a book on our comfy new couch. It feels ridiculous to be so worried about what other people think; the second that you’re diagnosed with cancer, doesn’t all that go out the window? I guess I prove that it doesn’t.
I remember the first time I had cancer. I took a couple of days off to get 2nd opinions after I was diagnosed, and then chose my treatment option. I then had to take a week off of work to have a surgery where they put metal rings into my eye, and then recover at home with medicine. The following week, I returned to work with an eye patch over my left eye, which looking back was a brave thing to do, considering that I worked in a school and kids can be mean (thankfully the kids were great, and making pirate noises to the little ones seemed to discourage them from being scared of me. There was however an incident on a city bus where a little kid cowered behind his Mom when he saw me. Are eye patches really that scary?). The week after that I took off for my proton beam therapy treatment, and then I returned to work. It wasn’t until that summer that I finally slowed down, took myself to Italy, and really processed what those months were like for me.
January 2006, at the Mass Eye and Ear Infirmary, receiving the proton beam therapy.
There was no sitting on the couch feeling sorry for myself (that I remember, anyway, perhaps my friends would tell a different tale), there were no sick days, just work, and back to a routine. Soon after treatment I flew to Last Vegas for my best friend’s bachelorette party, and then celebrated my 29th birthday. But I always felt a little different after having that cancer experience; like I would never completely be the Sam that I was before I was diagnosed (how can you be when you face your mortality at the age of 28?). And I wonder who I will be now. I hope she’s somebody stronger, wiser, more adventurous and more carefree. I hope that she has more self-love for herself, hope that she treats herself to naps and books and cupcakes (even if they’re organic) without guilt. I hope that she tries new things, take risks, stops taking bullshit from other people, lives without caring too much what others think. I hope that when others upset or disappoint, she doesn’t look within herself to find blame. I hope that she dreams big and enjoys the little everyday stuff, like the way the light looks different through the autumn trees every day now as we get closer to winter. I hope that, this time, she comes out as strong as she did the last time.