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?

12 thoughts on “Metastatic Breast Cancer: A Day in the Life with COVID19

  1. I am shocked. It is so opposite how a cancer pasient should be treated. The worst part is that you have to make sure they do the right thing. You are very strong Ilene and I send you my love❤

  2. I’m sure that words cannot describe the concern of your experience. You’re a tough cookie, sister, but even with that, you are a loving and lovable human being who deserves being treated like one. Here’s sending positive vibes and hugs to you.

  3. Glad you’re resting. Me? I am hoping headway is being made on a couple of fronts and that I’ll be fully on track again soon. I was thrilled to get my treatment last week. New port on Thursday. I am angry and annoyed at your situation. Love to you. ❤️

  4. Dearest Ilene, it pains me to read all you’ve gone through. I hope you are getting rest and relief. I do see more of us having complications with our treatments and health during COVID. It is catching up. Keep ahead of that bus.

    1. Resting, nauseous, annoyed, angry, filled with fluid. I felt so isolated before – but there’s always room for more emotional turmoil with MBC. Sometimes it just seems like no ones going to get it – except for those with it. It’s why it’s important to support each other in the times when no one else can understand. It’s that feeling when you’re sick of – I’m hot and sweaty but if I remove the blankets I’m freezing cold. There’s just no comfortable place to find and feel safe. If you could have seen the place they wanted to keep me overnight, you’d have walked out too. I’ve seen cages more sterile and clean. I’d have been better off at our vets office.

      How are you doing? Love you, stay well, thank you for checking in, it means a lot to me.❤️

    1. We all do. It’s so unfortunate that those who need the vaccine more than nearly all other populations cannot get it – not that it’s a panacea, but it can only help not hinder our way out. But in thinking about it we’re probably the few who do follow the rules because we have to, so I guess vaccinate the idiots who can’t see fit to wear masks and stay home unless they need to go out just for a few months. It’s TrueType Selfishness not an infringement of civil rights that’s causing the pandemic to ravage our country and keep those who need other treatments from receiving them. It’s all bullshit.

      How are you? It’s been a while my friend! I truly miss hearing from you. Love you abd think of you often. ❤️❤️❤️

  5. Sending you love and prayers. I’m disgusted by the lack of compassionate and frankly professional “care” you are receiving. In my prayers. 🙏🏻

    1. Care left the building long ago. It’s no longer health care – it’s all about money unfortunately. Having worked since the age of 13 and paying into a failing system suffering from four years of defunding we see the resulting aftermath and shouldn’t wonder why it’s a mess. I’m okay today, I’ll probably feel better sometime on Tuesday. I’m also going to ask for a few days of respite care at either Stanford or UC Davis. It’s more likely I’ll be able to receive it at Stanford but who knows. I need a few days of legs up, iv medication, and healing without pushing myself after the periocentesis – to remove myself from the stress of the house and the daily chores, etc. time to just get my legs back under me and heal to the point of being able to get back to myself. The unfortunate thing is because of Covid the only place I can go is a hospital that handles cancer.

      All the retreats are closed until the time when we can be free again. I hope for all of our sakes it’s soon. I’m worried for so many other people who are worse off than me.

      Much love and thank you for sincerely praying and caring- as I do for you. ❤️

  6. Ilene I have no words good enough for the lack of compassionate care .
    My heart breaks . Sending love across the pond dear sister .
    You are as always in our daily healing ritual.
    See you on the astral much love
    Joolz

    1. Joolz- Oh your sweet soul puts me at ease. It’s so interesting to me how some love you can feel no matter where it’s coming from and everywhere I go I can hear your voice telling me I’ll be okay, I am loved, I am surrounded with healing light and that I can feel your compassion and your prayers.

      My gratitude overflows from my heart to the ocean over to you far away but so close.
      Here in the astral plane,
      ❤️

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