Six Years of Metastatic Breast Cancer & My Path

We hold so few of cards in that feared hand one’s dealt along with the diagnosis of any terminal cancer. As an adult we know too much of life by then to live outside of fear. We know far more about the losing hands to come at the cancer gambling table. Unforgettable emotions of diagnosis day never leave any of us the same. No one can conceive of the sentence handed down from an unseen place. The room becomes a blank echo chamber.

We cannot believe our bad luck nor even that the cancer itself somehow grew without us knowing. And no one can really explain it to us. No doctors. Not anyone we loved, not our friends, husbands or wives, mothers and fathers, spiritual guides. Not even god. Nothing those cards we sat holding that day in an office or on a bed in a hospital.

Or at home over the phone if a physician, or anyone in power at that time had they chosen such a cowardly way to end our lives. Just in as long as it took it hear the words we never thought we’d hear – cancer – we disintegrate. In one two-syllable word we change. Quite explicably yet into someone the same but very, very different – suddenly we know we’re dying although death escorted us to that moment in time all along.

Just as suddenly as that change, our gravity which once held the planets in our orbits releases everything we ever knew or held dear. People, faith, hope, love, plans, dreams all go flying away into the universe. Some never to be seen again.

We fall out of life’s great circle, kindu of like when poor little Pluto, downgraded from its original life as planet. I wonder how it took the news. Maybe it always knew it felt different from the other eight planets. Just a small sun orbiting satellite. We don’t really talk at all about it on earth anymore. It’s status shifted.

The Great Wait

After diagnosis I recall the eternity as I waited for the word “go.” The lack of immediate reactions became ludicrously too much to bear. Did these people not know I would die soon? I didn’t have all day or any time at all to wait anymore.

We metaphorically cut out our hearts and hold in our hands to show anyone who might say, “yes, it’s still beating, I see it. I see you.” Now we’re invisible as human beings as we begin the ending of our lives as a “patient.” We become a case. An invalid – so apropos. A disabled person. Some no longer able to work due to the cures. Not necessarily the cancer in all cases.

But patient means several things – it’s the sick and the ill to be sure. But the patience we’re asked to compose ourselves with as the unflinching and resilient ones. The indefatigable and persistent self-advocates who “fight” and then “lose the battle” to the disease. Is it the disease really that kills us all or the burning, poisoning and cutting we must endure? A patient endures. I prefer my friend Rudy’s endured to survivor (we don’t) or fighter (presumes a loser) or a warrior (again we lose a battle to an invisible enemy.

The enemy within us of our own cellular matter gone haywire. Some with genetic mutations, most – over 94% without any explanation. But we spend precious time seeking out a reason for all this. The physicians seek it out for us. They report back generally a status to us of where the cancer is, how it’s progressed. We hope for the disease to show no evidence of itself for a while but in general the scans tell a story of a different kind.

Living scan to scan with anxiety over what the future will hold in the result to be read to us by an oncologist or radiologist or read on our own. As my friend Victoria a long- term unicorn nearing 20 years of enduring metastatic breast cancer likes to quip with her fast wit: unremarkable and stable. That’s like the weather.

We hope there’s no storms brewing somewhere we cannot see yet. But the earth already moved under our feet so many times those losing poker hands don’t phase us much anymore. We save the tears for when we’re not at the table.

Your lips are moving but I can’t what you’re saying…

We leave our reading, or reporting, of the diagnosis without an idea of our real prognosis.

The elephant the room is the question, “how long do I have to live.”

We run home to Dr Google and find out what our general prognosis is – but we dare not look too long. That number of years cannot possibly apply to us. We have plans.

Some of us have surgery to allow the insertion of a port. A strange appliance that’s likely going to be in us until something drastic changes. Change as is very bad or really good. Nothing in between. The port becomes our Purple Heart.

It’s a three pronged plug in our chests that allows things to be put inside of us and take blood out of us for lab tests. It saves us from the living hell of becoming a pin cushion looking much like a junkie.

If we hadn’t known anything about cancer before we receive a stage 4 diagnosis we are known as de novo (from the beginning). No early stage cancer that we were diagnosed with before, we don’t have a clue as to what really is to befall us.

I couldn’t expect to live longer than six months maximum.

The Great Negotiator

When I found out and returned home form a week in the hospital – I reached into the virtual stream of information looking for more than just data on prognosis. I did not believe that 2.6 year average belonged to me. The physicians at the hospital said I should go and prepare my affairs.

Half joking I responded with, “I don’t have time for dying right now I’m too busy.” And I realize only now I was going through negotiation. It’s a recurrent phase most terminal patients go into at the time of their diagnosis settling into their cognition.

I’ll leave the boring details to five years of blog posts. The status of the day is pretty scary. Now my metastatic breast cancer awakened itself like the ugly blood born vampire it’s proven to me it can when it wants. Now again like three times beforehand, I’ve shown a proliferation of liver mets. Only this time it’s slightly different. The Mets and several other problems were caused by a cure itself.The radiation I so feared would cause me more harm than good, did. So now there’s a choice. I’m hesitant to “waste” life extending meds like Piqray and Aromasin . I began those this week on the same day I had another five liters of ascites fluid drained from my abdomen.

Neatly, I have a little mutation located by oncologist number four. I won’t count the first oncologist who informed me of important things through a nurse practitioner. She left me feeling frightened and uninformed, alone and afraid. Not good enough to sit and blankly stare at her computer screen while I assumed she was hearing my questions and get back to me. But she hoped I suppose I’d forget. Never feigning to take a note or respond with a promise to get back to me. She lasted about three months. I asked for a second opinion, and she got knsukted and I felt guilty for asking.

It’s the PIK3CA mutation.

Carried to me by my father from my grandmother, who died in 1969 from metastatic breast cancer. She was born in 1903. Graduated high school in 1921. Was a hat model and my grandparents were very much in love, pictures of them dressed to the nines at the clubs in Harlem and the Borscht Belt shows of the Catskills, in New York City, in Miami Beach. She smiled, she dressed so beautifully. She was tall and interesting, and she loved me ever so much, the daughter she never had. She nearly died in childbirth with my father and his lost twin brother, after countless miscarriages.

The Unicorn- an MBC endurer who has lived past the statistical data currently available and continues to thrive on the medications currently available to extend our lives.

This past month I had a forced break to take my a Covid vaccine. That break created a perfect storm of timing to do so. I’ll be as good as it gets in terms of my blood cell count and my metabolic panel. I’ll be as healthy as I can to handle what may come. Attempting to line up some level of support proves difficult.

However, as always, we know in our hearts what will work for us. I don’t believe coming to cancer with a severance of mind and body is necessarily our best platform for optimal healing. It’s one and the same thing.

I wonder if there’s any magic to become a unicorn. Something mythical and magical, a thing that’s studied, watched. Captured by its own special aura. The colorful rainbow of light protruding from its head. What could I do to get my horn?

Separating my mind from my body can’t work regardless of over six years with metastatic cancer. I’m not depressed, nor am I falling to pieces, although there’s nights I cry so hard from sheer loneliness, I could wring myself out like a dish towel in my kitchen itself bleached, dirty, and once was brand new until it got its demotion from status of the bathroom to wiping grease from the stove.

Yet I can not say it all began that way six years ago Thursday. It’s through learning what our body’s needs are and responding to those with our minds focused on the healing of our bodies when we can achieve the maximum possible results at that time. Perhaps as we go along the cures worse than the disease. I don’t know. So much is a big question and a level of risk goes with every card hand we’re dealt.

That’s okay too. We all face a lot of uncertainty. Additionally in these times of so much isolation and perhaps even not seeing as much of our health care teams as we had become accustomed, it’s crazy to think they even know us well anymore.

Seeing us for an hour every eight weeks certainly is not quite enough – after a chart review, perhaps a bloodwork result or a scan result to go by or if your oncologist believes in cancer numbers then those too, but I honestly believe had we waited to see if the bone met shrunk with the Verzenio which did nothing for me close to ibrance and fulvestrant but that’s another story as to how that got screwed up by insurance company bullshit and a missed fax to Pfizer by a nurse practitioner I’d not have nearly died in early 2019.

Whatever comes comes at this point six years in just now finding out I have the PIK3CA mutation because my new oncologist asked for a review given 40% of lobular MBC patients have that mutation. I am immediately dumbstruck as to how Stanford missed it and how Foundation One missed it and how the heck the genetics counselors missed it.

I’m scratching my head but maybe all things in time. I have hope at my side, my cat curled up on my lap, my husband ignoring me downstairs and a world of people who love and care about me. There’s a beautiful house I am blessed to live in sheltering me. Blessed to complain about deciding what I will make for dinner when I’m fortunate to have a dinner to make. And I count my blessings for they are many and I’m aware of the hardship so many other people face I must live a life of service when I am able to.

I hope you will find more reasons to come by in year seven. Let’s see if I keep beating the house. Because we all know in gambling and in metastatic cancer the house will always win.

And for all of you who support my habit of writhing poetry heeere’s another one. Thank you for indulging me.

Return to Sender
Characteristics measure as weather such
Driving risk factors
But too late now to turn back.
And where your next paycheck comes from or
you’re going to get the food you need to eat?
The luxury of wanting to explore the world
Comes as a consequence
Of knowing there’s more
Out there than just us.
The injustice of beginning to know:
We residents of history
Never addressed or linked together and in the end
we realized that we could actually
Find just the characteristics of right now in this moment
For it’s all we have
That, and our breath.
I don’t know if it’s enough of an argument for
Transcending simply with my own air to help
Me float by
With a simple meditative fix.
A plane perhaps but by breath
I’m beginning to wonder
If it’s a hoax or too complex.
With so many risks
Such factors - what did you decide to notice?
To hug chemicals regardless of history’s exposures
Or enter into a race so to predict
The depth of pockets of children picked to share characteristics
Just like the ones who are real that’s one reason why
The individual impossibility of me
Having been exposed to intervene or change the outcome
Yet I know my kind of density.
People often talk about it as if it’s what changes as
A response to differences in stress.
Do you remember how many we saw yesterday
wondering whether we have enough information we think we do of
The particular and of the extreme
Yet it’s not like we had to ask.
Questions like who is significantly greater our daughters or
Our grandmothers?
Take the injustice of abandonment.
Beginning to uncover pots of stews
Cut up cubes of meat and potato bright carrots and dulled parsnips
Cut into pieces meant to intervene that create need out of want?
Yet it might give us some real information about why systemic and historical vantage points
In the end in our control, our personality changes
The how we and the science
Of who we are now
acceptable or whether to bet
The risk of results for
Telling out to the world
for hope for exposure?
Our right
in these hard days to argue against
and the social networks of
women are stark as anything
Growing up to be a silver bullet and to provide important priorities of what we might do to stop this now
and be sure it’s

Metastatic Breast Cancer: A Day in the Life with COVID19

Yesterday morning at 1:00 am I departed the ER after 12 hours. While I entered and was admitted to the hospital because of metastatic breast cancer I was discharged and departed of my own demand for release from the hospital because of metastatic breast cancer. This, the great irony of terminal illnesses, brings me to the frustration of the story I’m about to tell you. So sit back, pour yourself some green tea, and prepare to get anxious.

I belonged upstairs on the oncology unit where my beaten and battered immune system would be looked after by professionally trained oncology nurses and doctors, and there’s not one Covid 19 positive patient with symptoms. I sat, laid, fidgeted and cajoled for 11 hours in my own somewhat safe space in the emergency room. I breathed quietly and with a sense of rather false security: a HUGE HEPA filter next to my head and the maximum oxygen allowed pumped into the room.

The 11th hour.

After 11 hours, the staff determined it best to keep me overnight in “observation.” Observation filled with Covid 19 patients. They put me in the back corner by the door supposedly away from other sick people. Rarely do tears pop out of my eyes. Not in frustration or from sadness. Unless the frustration and or sadness pulls them down my cheeks.

The physicians refused to fully admit me and allow me onto the oncology floor after quite some time. It was obvious I’d get no relief from the discomfort of fluid pushing out from my inside. My ribs feel like they may crack open. My back and hips are as sore as if I’d spent the day practicing to be on Dancin’ with the Stars.

This situation brought me to tears: two nurses led me from the clean, quiet room I’d spent the last 10 hours inside equipped with plenty a preventing apparatus into a filthy dusty room across from the janitors area. The janitors spoke as though they discussed an American football call of holding on their home team of which they disagreed. The janitorial staff constantly banged and swooshed and chattered about buckets and rags of materials used to clean rooms. I couldn’t imagine getting out without Covid, a belly full of Ascites fluid and cellulitis.

Plenty of Fluids

Ascites and cellulitis brought me in after I’d already received sub par care from a UC Davis receptionist and nurse on Tuesday of the same week. The one hour drive each way exhausted me. I slept most of Wednesday.

Thursday I debated with myself until it became clear the afternoon hours when the ER became busiest arrived. I determined it best to arise from sleep as early as possible on Friday and go to the ER then. My palliative oncologist and I agreed on the ER as the best bet to achieve some relief of the 20 lbs of fluid my in my body.

Is it really worth it?

I really broke down when the ER observation doctors told me they couldn’t guarantee I’d be seen until Monday. Nor could or would they move me or check me in, even for respite care, to the oncology wing where no one suffered from the pandemic virus. The physicians who both hadn’t read my chart yet said I’d be fine. They assured me that my 2.7 white blood cell count would protect me. Normal is 4-11.

As I didn’t want to cut off my nose to spite my face I calmly said, I’m sorry but isn’t Neutropenia below 4? Apparently 2.7 seemed good enough to this particular observation physician, which is why I have cellulitis to begin with. Can someone please just say fuck you? At least I can handle straight forward, but not “umm” and “uhhh” and the inconceivable conclusion of two seasoned physicians to not keep me away from the added danger of contracting Covid.

The nurse in ER only came to tend to me as I was threatening to leave – I’d hit my boiling point. He said, sarcastically, “oh I’m sorry I was taking care of sick people.” I said, “really? What are the chances of any of the people you’re seeing right now are dying from whatever ails them tonight?” He said, “none”. I replied, “ wrong – you’re seeing one – ME.”

Then he stopped as he started to move in a positive direction only to tell me, “sorry but the physician who does the paracenteses left for the night and we will have to page him in the morning.” The doctor who’d seen me earlier told him to inform me I’d be better off staying. I’d already been prepped for both the CT scan and the drain, had my blood and urine tested, and tested negative for Covid. By then I had an ultrasound on both legs to check for clotting.

Good news there. The ultrasound showed no clotting but it was a painful procedure given the way my legs felt with any pressure at all on them. It sounded very creepy, too. I could hear my inside sounds over the stereo in the ER room where I laid, with pre warmed KY jelly coating my legs from groin to toe. Have you ever heard your own circulation on a stereo? It’s exceedingly weird.

Dye, dye my lovely

My blood was drawn via needle to my vein and I peed in a cup with my name in block typed letters. Both fluids were sent off for tests and no one reported their results to me. I also was to have a CT scan with contrast. Mind you I’ve had a CT scan and a PET scan at the very same hospital in which I laid waiting. BOTH times the radiology department used my port for injecting the radioactive contrast dye.

Yet they required proof by x-ray to show the letters etched into my port revealing that my three pronged apparatus indeed was a power port. It can take a certain amount of pressure per square inch so that I might get the contrast via my port. They could not, however, take my blood work from the same port because they said the blood could be infected even though they do a flush prior to any use. Clearly I was not in a hospital where they deal with much metastatic cancer.

Well, how did I get here?

I asked again if indeed I would be getting both the CT scan and paracentesis in the morning. He assured me that yes, this would occur. We will page him first thing. I said, “but he knows I’m here right?” He didn’t know. I almost lost my mind but quietly, so not to piss off the keeper of the keys to the kingdom. This kingdom I entered that day for sepsis potentially ravaging my already weakened body and compromised immune system:

  • which is why I have been prescribed the third antibiotic in as many weeks
  • which is why I went to the hospital to insure I was not septic
  • which I may wind up admitted to another hospital because I have:
    • muscle aches
    • very painful puffiness/ fluid retention in my feet and legs
    • a well defined red ring about 1/3 the way up my shin
    • nausea and lack of appetite
    • very strangely dry skin on my legs
    • hard lumps under the skin on my inner thighs
    • 20 lbs of fluid weight gain in about three weeks.

Statistics on Cancer and Covid

  • The COVID-19 pandemic may cause additional (excess) deaths due to both the direct effects of infection and the indirect effects that result from the repurposing of health services designed to address the pandemic. People with cancer are at increased risk of contracting and dying from SARS-CoV-2 infection.
  • Optimal cancer care must balance protecting patients from SARS-CoV-2 infection with the need for continued access to early diagnosis and delivery of optimal treatment.
  • Professional cancer associations internationally have recommended reducing systemic anticancer treatment, surgery and risk-adapted radiotherapy
  • According to EPIC, a popular electronic health record system, there has been a drop of between 86% and 94% in preventive cancer screenings in 2020 for cervical, colon and breast cancer across the United States, presumably due to access disruptions caused by COVID-19. These numbers looked at averages each week in 2020 and compared them to equivalent weeks from 2017–19.
  • In June 2020, the National Health Service (NHS) released statistics for April 2020, indicating that referrals to a consultant for urgent diagnosis of cancer had fallen by 60%. Some cancer surgical procedures have been postponed and cancer screening programmes paused.
  • Short-term (30 days) death in people with cancer and COVID-19 is importantly driven by (treatable) comorbidities such as hypertension and cardiovascular disease. Public Health England (PHE) has identified patients with these and a wide range of other non-malignant conditions at greater risk of developing severe illness from SARS-CoV-2 exposure, while multimorbidity in cancer is an increasing clinical concern.

Safety first.

What to do?

Be careful out there my friends. It’s a dangerous world right now with a reported 4% of United States citizens only having had the vaccine. But not cancer patients under 65 years old. It might be April before me and others in my situation can get the vaccines.

So if you ever wondered how Covid 19 effected people with cancer and you felt uncertain, mine represents one way in which it can. And the pandemic, the lockdown, the isolation, the access to care and our worries and fears continue to steal our healthier days prior to the time when the imminence of death comes to seek us out.

As those days add up behind us, we hope and pray there are more ahead than have already passed.

Yet in the 40 or so pages of hospital release paperwork I found a list of populations who were at risk for Covid19. I’ll be darned that the first mentioned group of people are those with cancer – on a list of about 30 at risk populations.

Irony and cancer make strange bedfellows. Irony doesn’t cure what ails me, it won’t make me stronger, and I cannot find the humor in the situation at this moment in time. I feel the fear as though I’m looking down a cliff on one side of me and a herd of rabid zebras coming at me on the cliff. Do I jump or get ravaged by the foaming zebras?

Metastatic breast Cancer in the time of Covid: Where’s Our Map?

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.

Goin’ mobile.

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.

Trash Talkin’.

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.

Angry Infections

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.