Falling Off The Edge of the World

I lost most of September, and a fair part of October, to the most terrifying experience of my life. Now it’s November and the world has finally righted itself to the extent that I recognize it again.

To recap: I was diagnosed with Stage IV metastatic breast cancer in April of 2011. I had a referral to a surgeon at Memorial Sloan Kettering which felt like the right, perhaps the only place, to deal with such a situation. Nutshelling it a bit, so I can advance to my recent Drama: the surgeon first recommended a lumpectomy but that plan went out the window when further discovery revealed metastases to my lymph nodes and my spine. Rather than proceed with said lumpectomy, I was advised that the best course of action would be hormonal medications to curb the estrogen in my body, as my cancer is estrogen-based and is referred to as HER-2 positive.

For just over six years, I visited my oncologist about once a month and got blood tests and hormonal medication which I took religiously and kept a pill diary as advised by the team. Sloan Kettering, as you may know, is well known for its clinical trials. I participated in three clinical trials, they all worked great until they didn’t. Except for side effects like fatigue and joint pain and night sweats and hot flashes and dry mouth and osteonecrosis (google it - it’s not fun), I was loosely referred to as “Miracle Girl” by my team.

After my most recent clinical trial was initiated in late 2015 due to scans that revealed tumor growth in the spine, I was then put on a new protocol, new medication, actually oral med plus fulvestrant injection in each hip once a month (I’m used to needles, but DAMN this hurt). So la de da, off I go, with my monthly blood tests, checkup, injections, etc. All is well again. Scans reveal everything stable. (They love this word - stable).

A few months later I lost my appetite, couldn’t eat, had to go off the oral med and had to reassess. I was rushed to the hospital twice for potassium infusions (take it from me - never get this infusion - it hurts like a bitch). Finally the world swam back into focus and I could eat something besides ginger ale in a cup filled with ice chips. I went back on the oral med, half dose this time, and everything was cool, baby, cool.

Fast forward to this past spring. I’d had recurring back problems most of my adult life. Suddenly things got really bad. Since my cancer was metastasized to my spine, I was terrified. Beyond terrified. Went to see a neurosurgeon at Sloan Kettering.... I’ll cut to the chase. I had to quit working at the end of June to prepare for a surgical procedure. I had that in late July - recovery was almost a month - then in late August I went to see my surgeon and we were all, yay! it worked!

In early September I went to a consult with the rehab team at Sloan Kettering. We set up a schedule where I would come in twice a week for six weeks, starting end of September, as I had a roundtrip plane ticket to Florida to be with my mom for her 92nd birthday in mid-September. A few days after the consult, I could not move without extreme back pain, I was hunched over like a crab, screaming and crying, and all the time thinking this will pass.

Moving ahead - otherwise I’ll have written the first draft of my book - I ended up cancelling my Florida trip because I could not walk without shooting pains down my legs. I could not straighten up. I was frozen in terror and I was, apparently, frozen. The pain was beyond my comprehension. A friend who was retired and had free time, not to mention cared a great deal about me, came with me to Urgent Care at Sloan Kettering on a Saturday afternoon in mid/late September (I think the 17th?) (if memory serves).

They kept me overnight because I could not walk, and they wanted to do an MRI to see what drama I had managed to star in this time. It turned out I had spinal stenosis, and required surgery as soon as possible, so I had to stay in the hospital, and ended up staying there for nine days.

Nine days anywhere can erase your memory that there was ever another life, but nine days at a hospital is like being airlifted to a planet outside of our solar system and not knowing the way back. Allow me here to say THANK YOU to the incredible caregivers at Memorial Sloan Kettering Cancer Center in New York City. These people! Doctors, nurses, aides, hospital staff - I’ve never met finer, more honorable people in my life. Whatever salaries they make are not enough. I am crying even now as I remember the care they gave not just me, but every patient on my floor, every patient in that hospital, every cancer patient. Always with a smile, a cheerful word, help and advice and kindness and caring. If you’re wealthy, please think of Memorial Sloan Kettering as a place to contribute to. They are doing God’s work.

Nine days later, I went home, a shell of myself, not my regular self. I had a cane I had inherited from a friend’s mother who died, which was not the right height for me, and long term use of it would have exacerbated all my back problems. I could walk with the cane, but I was on pain meds and steroids, couldn’t sleep, felt like my entire body was humming like a generator from the steroids. Also I had with me a bag of meds and a 10 page dossier telling me what to take and when, which I frantically checked and doublechecked twice a day because I lived alone and was horrified at the thought of taking the wrong thing.

My cat was thrilled to see me, but a little confused, and he modified his behavior to become the furriest nursemaid, gently keeping an eye on me wherever I was in the apartment, monitoring my voice and movements for any alarm bells. I hired a home health aide to come in on weekdays to help with daily tasks like laundry and groceries and heating food and making tea - I could not do any of these things for many weeks, and some I still can’t and am still working my way towards.

I know this all sounds very dramatic. Well, it kind of is. My surgery was September 20, it’s now November 14, and I’m not yet back to “normal” and I still have a little pain in my back where the surgery was and where I had multiple radiation treatments after a waiting period of ten days or so after getting home. I can’t work, but I can laugh, and I can dream, and I can walk outside and breathe fresh air, and I can play music that I have loved all my life and I am rediscovering my touchstones. I’m looking at you, Steven Van Zandt - I know “Men WIthout Women” backwards and forwards. I’m looking at you, Bruce Springsteen - it seems like every song on “Wrecking Ball” was written with me in mind. I’m grateful to both of you, and Leonard Cohen, and Judy Collins, and the Apples in Stereo, and the Beatles, and the Rolling Stones, and Shawn Colvin, and Soozie Tyrell, and Ofra Haza, and Liam Clancy, and Johnny Clegg, and Jah Wobble, and I’ll reluctantly reign myself in now.

I guess what I want to say, is a number of lessons were learned overnight by me and the most important is this: Anything can happen to anyone at any time, and we don’t realize that until it happens to us. Do whatever it is you have been putting off for years and years - hug your parents, hug your children, tell the people you love that you love them, this can all end in an instant, don’t be filled with regret, there is nothing worse.

Cancer sucks, it really does, but I feel like I didn’t even have cancer until this tumor in my spine took over my world and made it impossible to walk or breathe without pain. Then and only then I said, oh, okay so this is what it’s like to have Stage IV metastatic breast cancer AKA terminal cancer. And I am grateful that I was woke, because that’s what happened after my surgery, I was woke. I am woke. Get woke and don’t procrastinate. This is life, we are in it, and we have to deal with it honestly and immediately. That’s all I want to say - more later - much more.

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