Not to belabor the fine points, but these may indeed top the charts for strangest days ever. Think about this moment in time. Think about everything facing you and your family and just widen your circle to include the entire world. Think about having metastatic breast cancer during this time. The number of days I’ll live probably numbers more behind me than ahead. I am afraid of a shorter less healthy future of travel, hugs, and seeing more of the people and places to commit to my memories.
There’s no maps nor a clear road in sight leading us away to that first day when we can freely go anywhere. There’s no route mapped out to where we can inhale the first breath of fresh air. When will we head outside the front door for the first safe time? Can you imagine feeling the all-safe air fill your lungs, or the rain cooling your cheeks?
What a week.
Close your eyes and breathe like a meditation – breathe in, notice the small millisecond between your exhale – and inhale. That’s the moment of true presence the one we own, the control and letting go of control. It all exist right there and release your breath slowly as you can. Open your eyes, and while you’re still home remember as I try to, this like life itself is temporary. It’s what we make of our time in captivity. It’s also how we preside over our attitudes towards this unimaginable historical reality. We human beings created this mess when we destroyed our environment. Ahhh.
Heading into year two of the pandemic trapped almost everyone with a terminal or chronic disease and compromised immune system. If the past four years creates an historical record of this stranger world , it won’t look pretty. This time when our children hide behind virtual reality and video games to escape the odd feelings of lacking socialization. Covid replaces schools with homes during the most influential periods of their lives. They’ve learned to live without friends and school mates, camp and playgrounds.
This generation who have not known what it’s like to fold and unfold a big paper map. Or to carefully fold the map to the right page so you can hand it to your dad. I got the front seat as the first born and lucky me. We would either use a map my dad pre-wrote in where we’d stop and the route. Or we used a Tripatik.
Sometimes I drove to AAA, the American Automobile Association with dad and got our TripTik for the summer road trip. We’d sit down at a desk with a real live human being, and no one wore masks. Then with a drawer full of single paper roughly 8” x 4” maps taking us from point a to point z all across the United States and I think Canada.
Say we were going from Brooklyn to Acadia National Park in Maine, which definitely happened in July of 1977. At the local AAA that real person, behind a real desk who probably smoked, created a cool booklet. After a discussion of our route requirements, she hand bound with a spiral spring at the top to mimic the road ahead. The booklet or “ticket” of our road trip contained highlighted page over page in a curving line. The line led us over streets, highways, bridges, tunnels, country roads, and through state parks.
Yet best of all the bathrooms and restaurants and rest stops became signs of relief for a parent of a 10 and seven year old. As I recall the real person always used an orange colored highlighter. Then she handed us the booklet with its highlighted bound pages and went page by page, explaining the trip and all the interesting places along the way. And it took time. Lots of time.
But that was okay for vacations, because you could call from a telephone stuck to a wall with a long stretched out spiral cord attached to a handle that used an ear and mouth receiver. You could hang up angrily on people back then. What a satisfying feeling that kids won’t ever know. Then you ordered it in advance if you were in a hurry. But time was different in 1976 and going to get the map held the exciting buildup of our yearly camping trip with my dad.
Now kids know GPS and any of the map programs and apps out there that take the place of a drawer full of lifetime TripTiks. But the personal interaction of the invaluable AAA TripTik – a paper map that came home with writing all over the pages of what we might do or see in a particular place on our way. Never taking the straight fast way there we took the scenic route. We had a playlist on my dads home made cassette tapes and into his blue Toyota Corolla we’d go, me in the front seat as the copilot.
“Oh,our hearts are thumping, you, my brown eyed girl, you’re my brown eyed girl…do you remember when we used to sing…shah la la la la la, tee dah.” Van Morrison filled the car from the stereo and the open windows filled our lungs with fresh air. The car’s equipment didn’t contain seatbelts so I freely grabbed drinks for us in the front from the sturdy cooler in back. I can see my fathers unruly beard flying in the windy car. After the requisite resentment period came to an end and I quit frowning and uncrossed my arms we rode along joking and smiling.
Now the TripTik comes via a cell phone. Our cell phones produce electromagnetic frequencies or EMFs that bombard the divorced fathers and his offspring while their mother her much needed break from “the brats.”
My mother never thought much about why overhearing these calls might be the cause of the anger and resentment that inevitably took up the first days of the vacation to places full of tears and fighting. Those calls cut my skin laying the deep scars of a foundation for this cancer that’s part of me that my own body produced. Scars must fade if I am to go on for four or more years with metastatic breast cancer and become a full fledged cancer unicorn or an exceptional responder – a person who lives 10+ years with metastatic cancer with no real reason why they’ve outlived all the odds.
That’s my next goal. Yet, given how I feel today, I don’t know if I even want another four more years of these side effucks. I feel terrible.
My dad, or daddy or daddio as I called him, died of a mitochondrial brain tumor in 2013. Inoperable. We passed his 80th birthday this year without him. It’s very unlikely I’ll live to see 80, either. I’ll be thrilled to see a relatively healthy 60. As my mother always said, “you’re just like your father,” her New York accent dropping the “r” at the end of each word. I doubt she meant dying from cancer.
Did I love well?
When I’m dying from metastatic breast cancer I’ll only want to know one thing, as Frank Ostaseski said in a recent interview about his book The Five Invitations. That is that people loved me and “I loved well.” Ostaseski should know. He knocked on deaths door several times with heart attacks and a bunch of strokes. What a way to prove you walk the talk.
In a one hour discussion he gave me more of a framework to hang my forgiveness on than anyone to date. I highly recommend you get the audio book if your vision is blurring like mine or you want to hear the voice of a soothing zen master. Plus he knew Ram Dass. I turned to him right after my diagnosis, looking for meaningful words in a meaningless time.
Which brings me to this weird point in the darkest days I’ve ever known – days of uncertainty, fear, and isolation. I assume these demotions ring true to a degree, not just for those of us with metastatic cancer. “Hundreds of hopeful recipients camped out at rumored distribution sites only to leave without jabs. Untold numbers of unused doses wound up in dumpsters… #vaccine targets nationwide fell millions short.” (The Nation, February 8 2021)
Aren’t we worth more than trash?
And immunity from Covid 19 isn’t the only thing I have daily worried about on a regular basis. My own body certainly doesn’t make matters any better. After recent radiation therapy of which I refused my final four prescribed only taking six of 10, the tumor on my Lumbar 4 vertebrae no longer showed up on my scans. Yeah.
Well, what we may not be forewarned about is the damage to the soft tissue under the skin of our abdomens. I was told by countless people that radiation is a breeze compared to chemotherapy. Not for this wuss.
Now, for the second time since having radiation, I’m walking, well hobbling about with feet swollen and painful and my shins a bright yet angry looking clown-nose red to a well demarcated line just 1/3 up the way from my puffy ankles. The generalized infection called Cellulitis happens in immune compromised individuals. Yet as I dug into the research, radiation also damages soft tissue as it slices through one’s body, killing off lymph nodes. Because there’s nowhere for the abdominal lymphatic drainage to go for removal from the body you can think of this as leg lymphedema if you will. This, it seems upon some level of self diagnosis backed up by my oncologist is my root cause of cellulitis.
A map of my illness.
That’s the TripTik of how I wound up here at home, stubborn husband pissed off over a seriously misunderstood comment of potentially having to go to the hospital alone if my stomach didn’t cease to be so sore I couldn’t eat or think straight. In light of this please excuse the re-routs of this blog post. Your AAA road mapper for metastatic breast cancer isn’t herself this week. Charming. This condition could go on indefinitely or land me in the hospital for an average of 4.5 days under observation and on IV antibiotics as well as steroids.
Oh and I am beginning the bloat in my belly of ascites. If you’ve been reading along with the bouncing ball riding the Cancer Bus long enough, you’ll know ascites and I have been well acquainted for six years as of March 20th.
With cellulitis, the lymphatic system cannot drain from farther points in the body, either. These lymph nodes have not been surgically removed as with a mastectomy. Conversely they’re accidentally burned to death by radiation therapy.
However to a degree we can also blame Covid. I can’t see my oncologist for an in person check up very often. Thus, we won’t catch these physical ramifications in advance of the becoming a bigger problem. Roughly a month after the radiation treatments I received for a tumor on the inner side of my L4 vertebrae, the first inkling of cellulitis appeared. The infection created a painful and ugly foot problem.
On a video call with my palliative oncologist he was able to diagnose and treat the cellulitis with a visual look at my legs and feet as well as our discussion of my symptoms. Clear cut case of cellulitis. It’s normally treated with penicillin and lucky me, I’m allergic to penicillin.
Wow, I remember it was quite an allergic reaction, too. At six years old I landed in the ER of Mount Sinai hospital in New York City. My dad racing me there in his blue Corvair, deciding which lights to run as he would turn to look nervously at me . Anaphylactic and red like a bright beet my throat closing up frightened me. It only got worse and worse, and I tested positive for allergies to sulfa drugs, too.
And several weeks later there I sat on a gurney in a brightly lit hallway at the same hospital where I was born on June 21st, 1965 at 8:26 am eastern time. I cannot remember very much before I turned seven. 1972, the year of my first vivid memory.
I do remember screaming in preop about to have my red, angry tonsils and adenoids removed. And it would seem penicillin treats red and angry infections. My legs are red and angry now and it stops at a circle clearly demarcated 1/3 up my shin. I woke up from a nap last week worried my legs might get removed as if I suffered from gangrene. It’s just a daydream, I told myself. Just a bad dream. I wish all of this were a dream too. Including the likely unjustified anger for being last in line for the Covid vaccine and why the non profits aren’t speaking up for their constituents is enough to drive me insane.
Let us be unicorns.
Will I be a unicorn and when does a metastatic breast cancer unicorn earn her horn? Let’s hope I may have the pleasure of still writing lovingly to you and to my friends and family. But especially for you who I don’t hear from but I know want to hear from me. Yet one day my words won’t come. I’ll have no control over whether or not my wishes will be carried out, including my final post after which I shan’t return.
My heavenly TripTik I’d like to think has an Orange highlighter, leading me to any such place close to heaven and not the hell. The kind of hell our world could easily become if we cannot steer this blue and white ship of fools harder and faster.