Exponential Isolation: COVID19 and Metastatic Cancer

I’m no good at friendship because I’m no good at time – I’m illegitimately alive for five long years a full 2.5 more than I’m supposed to be allowed— so take my words as such. As the truth of someone who may as well be invisible most of the time. We are so much like the post apocalyptic zombies that can’t be killed. Not by the usual means of murder anyway. We refuse to leave our loves behind, and jump across the river into the mystery.

It’s always preferable and more honest to express my truth. While my truth – my voice – I’ve just recently learned to appreciate, which might sound derivative, I live my truth every day I get out of bed and wander softly on sore feet with cracking knees and neuropathy shooting fire down my arms to the tips of my fingers. Until the opioids kick in. Until my one little sneaky treat of a caffeinated beverage for the morning or sometimes, afternoon wake up call. And now COVID19.

The complaints of the victimless victims of social distance I find ironic and darkly comical. These complaints I’m finding remarkably similar, if not exactly the same as the social distancing each victim of metastatic cancer endures, beginning with the day of diagnosis.

Furthermore, many of my online #cancertribe – my 24/7 support system who jump into action to answer questions, give the name of a solid resource, provide broad shoulders to cry on, and cheer when the news from long awaited scan results come back positive – meaning good in MBC language bad I’m virus language. We all seem so in tune with what can hurt us, that a mere change of the wind can sometimes sends us running for self quarantine.

There’s no exception with the COVID19 virus. We knew to stay put until we heard otherwise. The emotional fall out of metastatic cancer would clearly drive the rest of the population to post traumatic stress disorder. Yet these are the exact emotions I hear from Joan and James Buck (I’m bored with the classic anonymous names Jane and John Doe) are so annoying to the rest of the population as they get through a pandemic that will kill less people than metastatic breast cancer.

Let me share an MBC daily emotional rollercoaster.
Self image
Isolation
Fear
Uncertainty
Financial destruction
Inability to see family
Loss of mobility
Managing stress
Grief and loss

While in treatment with side effects including immune suppression, which are most of the chemotherapies and most of the targeted therapies. They’re not quite as targeted s we might like but it’s better than death. We stay healthy by choosing self-imposed social isolation. Most people I’ve noticed don’t cover their mouths when they cough or sneeze under normal conditions. I’ve now been home for three weeks, as the writing was on the wall. And although for many the list of at risk populations include chronic diseases like diabetes, heart disease, and AIDS, I’ve rarely heard cancer in the list. And I’ve not heard specific to COVID19 metastatic cancer. Here’s a list of what MBC patients can do to generally avoid infections, and wouldn’t you know it it’s exactly the same as for COVID19. Nothing new here for us:

  • Wash your hands well and often, especially after using the bathroom and before eating. You can also use hand sanitizers.
  • Take a shower or bath every day.
  • Use lotion to prevent dry and cracked skin.
  • Use gloves when you garden or do housework, especially while cleaning.
  • Wash fruits and vegetables well.
  • Clean your teeth and gums with a soft toothbrush. Use mouthwash to prevent infections if your doctor or dentist recommends it.
    You can also avoid things that might lead to an infection. Avoid:
  • Being near sick people.
  • Using someone else’s cup, eating utensil, or toothbrush, or sharing food or makeup.
  • Eating raw meat, seafood, and eggs.
  • Using scissors, knives, and other sharp objects. If you must use them, be very careful. To avoid cuts, consider using an electric shaver and a blunt nail file instead of nail clippers.
  • Handling cat litter and other animal waste.
    Source: Cancer.net

Metastatic breast cancer will kill every year until there’s a cure. “It is estimated that 42,690 people (42,170 women and 520 men) will die from breast cancer this year. Metastatic breast cancer will cause the vast majority of those deaths.
The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for women with metastatic breast cancer is 27%. The 5-year survival rate for men with metastatic breast cancer is 22%.” Cancer.com

Why we don’t call MBC a pandemic I don’t know but the risk of death is 100%. Not recoverable, not reversible and with the exception of spontaneous remission no cure. Let’s call it a draw and maybe find a way to leverage what we already know about preventing infections to raise awareness of MBC after COVID19 is solved.

Stay well my friends, I’m grateful for everyone who checks in with me and know my meditations which I shared with you earlier in the week include all of you.

Much love.

And here’s a poem to think about:
Infection
We learn, like it or not: humans cannot help ourselves to the trough of information.
Our noses pressed against a shop window
Nostrils fogging the thick coke bottle in bottom glass
Like a pigs in a pen in a winter storm
Out goes the heated air in two strong gust
Reading letters imperative we experience another life not our own.
And would it be too bold to say we’d break under the circumstances of someone else?
Atlas pages so long and glossy
The light bends with each turn of the globe
Like in Israel where an agent bends spoons with warm fingers weighing the situation.
It’s so heavy that at times, I am quite uncertain I’ll be able to walk another step.
Lacing up black knee high boots and turning to leave
Believing our long term survival might feel
like a case of hives
Everyone must scratch that perceptible itch.

While remaining hopeful while
Expressing wishes like blisters
Our infection take in, take around, carry with – all the prepositions apply here.
By fully trading in your responses
and knowing the right things to say.

Nancy’s Point: Metastatic Breast Cancer, Chronic or Terminal

Nancy’s voice on chronic versus terminal taxonomy brings up several important points and quite a lot of discussion including on twitter. I highly recommend reading this post and not only because Nancy featured opinions on this subject from myself and several other voices in the metastatic breast cancer community.

Possibly there’s confusion amongst those who do not have breast cancer and certainly those with cancer who don’t have stage 4. We all will surly die. But when the prognosis is certain death with a diagnosis of any metastatic cancer you measure your life in teaspoons not gallons. Days not years. Lunches and not vacations. But I’m not shy nor do I keep my diagnosis to myself.

Some see stage 4 cancer as a private matter and do not want to be branded with the purple M. We aren’t treated or approached the same way others who will recover are treated. People tend to shy away seeing death on our shoulder and no one wants to have a constant reminder of their own mortality as I’ve argued in other posts. As in this post about cancer and friendship. There’s an awful lot to be said on this topic.

But I do hope someday that MBC will get the research power to become a chronic manageable illness. That all cancer becomes chronic. But for now hear our voices and join the conversation.

❤️Ilene

Today’s Cancer Prognosis: Stable with a Chance of Bone Storms

At a 50% failure rate, a meteorologist is the only profession in which one can keep their job being incorrect in about half of their prognoses. Or so the old joke goes. It’s not easy given climate change, a man-made shift in the earth’s ability to stabilize its temperature and its weather conditions. Pollutants and the release of chemicals into our environment likely also caused such a surge in the number of cancer cases to 1:2 in 2019.

Granted with the benefits of research in the medical and pharmaceutical industries, there’s an overall increase in survival, and in profits. Just as new industries form around global climate change so have they around cancer. In both cases there’s a lot of guess work and trial and error, or trial and success, if I’m to exude optimism.

The tumors in my body exist mostly in my skeletal system. My breasts are no longer the main problem but the culprit of the metastasis that someday can kill me. My once-beautiful bones, the bones that never broke, the teeth without cavities, the entire organ structure has kept me upright at 6′ 0″ without shoes for nearly 55 years. My bones now look something like sloppily cut Swiss cheese with rough hewn pieces of screen where they’re healing from mass murdering, distant traveling breast cancer.

Bone metastases [can] also increase the chance of a fracture in the areas of bone which are weakened by a tumor. When a fracture occurs in bones with metastatic cancer they are referred to as a pathologic fracture. Pathologic fractures may occur with very mild injuries. In addition to predisposing to fractures, bone metastases can make it difficult for fractured bones to heal.

(https://www.verywellhealth.com/bone-modifying-drugs-for-cancer-with-bone-metastases-4153981)

The prognosis has improved for those with stage IV breast and prostate cancer with two forms of treatment. The current protocols include pharmacotherapy for sporadic, distant metastases and radiotherapy either by pill form or by laser targeting specific sites of pain or major concern.

Can you tell me where it hurts (on a 1-5 scale?)

It’s the pain that’s got me vexed. Realize with holy bones, always in the process of ravage or of healing, that’s only to be expected. They hurt in a way I can’t describe. I imagine it’s akin to having a broken bone but maybe worse. Having never experienced a bone fracture or break, the best parallel I have is my horrible growing pains as an adolescent. Standing 5′ 7″ by 13 years old I peaked after 10th grade at 5′ 11″ growing one more inch up to 6′ at 17.

Tall. You can definitely say I’m tall. I was always the “tall girl.”

I lost 1/4 of an inch since my stage IV diagnosis. With that 1/4″ went part of my physical identity. No longer can I truthfully say I’m 6′ tall, but I lie. I lie on my paperwork at the doctors office, and at the Department of Motor Vehicles. And I’ll lie when I renew my passport in a few weeks.

I’m a terrible liar. But I cannot give up anything more to cancer. It took and continues to rob me of so many things. Why should I allow it to take another part of my identity? What would you do? Would you call yourself 5′ 11 3/4″? It’s kind of a mouthful and it’s negligible. You’d probably not even notice if you knew me in the non-digital world.

It’s probably not going to make a difference to anyone but me.

Yet it’s my identity at stake even if it’s just a little bit of me. But bit by bit, if I allow it to, cancer can take over my entire life. It’s taken so much but it cannot take away my ability to “stand tall, shoulders back, head held high,” as my mom used to tell me when I was growing up.

I never wanted to be the “tall girl” then, but I would give anything to take away that peer-induced self-consciousness, causing me to slouch my shoulders forward to make myself seem smaller. But there is no hiding height.

Now I stand tall. My dignity is at risk now more than ever. I’m not at the school cafeteria-cum-dance hall, being passed over for a slow dance by a boy I had a crush on in 7th grade (where is John Fried, now?) who was 2″ shorter than me. The songs that I never danced to with a partner, but quietly sang with my girl friends on the sidelines waiting for ABBA or Patti LaBelle. I waited out Sail On” by the Commodores, “How Deep is Your Love,” by The Bee Gees, and my favorite, “Just the Way You Are,” by Billy Joel:

Don’t go changing to try and please me you never let me down before …

I need to know that you will always be
The same old someone that I knew
Oh, what will it take till you believe in me
The way that I believe in you…

I am that same old person somewhere in here…in a body changed by cancer. It’s kind of like the weather. It’s warmer now than it used to be, but it’s still the earth I always knew, where gravity hasn’t stopped holding my body to the ground although there’s a storm brewing somewhere no one can predict. Not my oncologist and certainly not the local meteorologist.