The uncanny abyss: parallels of Covid19 and metastatic breast cancer

Hey, does anyone feel even busier than they normally do although we’re all supposedly so bored? I’m getting personally stir crazy. Marked by a masked run to my local craft shop to buy some wood flourishes for a cabinet I’m refurbishing and pens to continue with my #Zentangle meditative drawing practice.

On a more serious note: Unfortunately theres uncanny parallels between Covid19 and having metastatic cancer. The need for self-quarantine & social distancing leads to feeling isolated and alone, and comes with the both relatively uncharted territories.

Tangential to covid19 are the numbers of deaths associated with cancer. These most likely will not be counted in the sum total dead as a result of Covid19. Due to necessary precautions for immune suppressed populations such as my own – we will begin to see a long chain of deaths because clinical trials are postponed indefinitely and we have less access to healthcare and therapy that can only take place in the hospital. Furthermore, people who need to get checked when a mammogram isn’t considered a required procedure during this time, will have far reaching effects on our mortality – and I’m only speaking for breast cancer but do not ignore other cancer diagnostic exams.

Early detection can save lives. A few days ago the UK NHS stated that as many as 35,000 women will die as a result in the reduction of tests for breast cancer detection as well as the decline of in hospital medical oncology treatments over the course of the last four months.

Estimates haven’t gotten around to statistical analysis here in the US yet; they’ll be higher no doubt. I also cannot think the numbers will matter much, as the ostrich approach feels more comfortable than looking at people who are “anti maskers” and those who refuse to keep a safe distance or just stay put so we can all get back to life. But things do need to change, including a shift in our compassion and empathy as a society. Fighting seems to have replaced intelligent discourse and peaceful demonstrations shushed away by media covering the uglier, more newsworthy side of free speech.

However, not wearing a mask isn’t taking away anyone’s human rights but it does take the humanity out of the way we all live as a supposedly free country. I feel imprisoned due to my diagnosis and subsequent treatments, and it sucks.

I can’t speak for you, but the longer this goes on the less freedoms I have. We spiked to record numbers in Nevada and Placer counties, where I reside in California, this week. These new numbers of them diagnosed and the dead are the highest we’ve experienced and will only increase with the number of people who get tested.

Yet we aren’t testing nearly enough people. Must we continue through the next flu season and testing our country’s mettle even further as we sink deeper into this financial and mortality abyss? As a Stanford physician eloquently stated in a “Five Questions” interview on June 19th, “Wearing a mask doesn’t mean that you are weak or afraid or a coward. It’s a way to protect the vulnerable around you. It’s our duty to keep each other healthy.”

Going anywhere is a huge risk for me and others with immune suppressed systems. Stir crazy? Sure. Lonely. Very. But I’m more afraid that my five and a half years with metastatic breast cancer and all I and others like me have suffered to remain alive can be for nought if we don’t contain this virus with expeditious emphatic personal commitments to our neighbors.

#fuckcancer and #fuckcovud19

Turning Isolation into a Gift of Giving

Neither extrovert nor introvert, but ambivert, staying home rather than going out’s never been an issue. Yet I love learning from all kinds of interesting and vastly different people than myself. And socializing face to face is something I enjoy. My friends range from a 67 year old ex Hell’s Angel who’s one of my BFFs, to a 20 year old Hodgkin lymphoma survivor married to a sweetheart of a woman who is currently serving in Afghanistan. Clearly I don’t discriminate when it comes to friends. Variety in life seeds knowledge and patience. Learning to ask questions and listen – not quite my strongest personality trait prior to cancer is something I’m still working on – but I was admittedly insecure for a variety of reasons.

Where do you want to go today?

How does a social animal such as myself make it easy to say “Home!”

Be us ever so humble, there really is no place like our wonderful home. The grass is much greener from fewer chemicals, the skies bluer from low air pollution, the people friendlier from less personal stressors.

But then there’s the house – you’re a citizen of your community but you’re the president of your home. The keys get you in but it’s up to you to make it a home not just a house.

Our timing, as always, couldn’t have been more serendipitous and with decisions easier for two who complement one another but fail to see the same decor as fabulous. Then add a sprinkling of dysthymic depression and case of metastatic cancer, add a pinch of a viral pandemic and you might hear the click of a shotgun at four a.m. coming from our bedroom. Or two clicks should we get that sick of one another. (I’m joking of course.)

Since February of 2020, and roughly the same date I began my current course of metastatic breast cancer treatment protocol, my resistance is low. And not just to wild color choices.

Why does anything that seemingly brings joy or comfort feel like a luxury since my metastatic cancer diagnosis? I’m truly not one to just let opportunities for fun and friendship go by and there’s no depression happening either chemically in my brain or circumstantially. No one could blame me for feeling depressed either. But it doesn’t describe how I’m truly feeling nor how all this is affecting my emotional well-being.

My physicians have all at some point handed me access to prescriptions for antidepressants, which I warn them, simply put me to sleep. I humor them and take one pill of a 30 day supply and 29 or 28 pills remain in six prescription bottles.

The blues are only of the azure clear skies in the countryside blockaded from pollution by the Sierra foothills and Lake Tahoe to our East and the American River and several dams of water control to our west. Immanently upon popping a little pill I’m sleeping as quickly as counting backward from 100 when the anesthesiologist begins prepping someone for an operation. In goes the SSRI and there better be some things off there to catch my fall when I fall asleep.

So I’m not depressed. Not exactly. I do believe that this whole COVID routine is getting old and boring. I’m definitely not and individual who likes to be individual I like to be around other people. So there is that part. There’s also the fact that I don’t get to go to estate sales, garage see, and antique shops. That’s where I make many make new friends and get to do the things that I like to do on a pretty regular basis. That’s if my shop brings in enough to budget those activities so it’s not often but I do miss that part of my life. Parlaying it to others has been a joy and is helping someone else for which I spend hours researching and learning. So those things of been gone from my life since February.

Other people who I really enjoy being around like old things as much as I do. I’ve spent a lot of my housebound time organizing my old things and selling them on my Etsy shop. (Should you want to check it out http://www.etsy.com/shop/YeuxDeux/). I started the profit sharing business with some friends were out of work because of the COVID19 situation.

But things actually got easier. Life at home became a luxury for us and thus the ease of deciding to stay home versus go out became a non-starter. We moved into the house, whose name La Villa Strangiatto (the Home of Odd People) also the name of Craig’s favorite Rush album and a song he can play beautifully on the guitar, reflect in things like our color choices. We dealt the bulk of the decorating decisions to me, due to my husband’s infamous analysis/ paralysis syndrome, with the exception of his office and outdoor lighting. Yet my sanity was called into question with regards to the color palette – a magenta burgundy and gold for our downstairs Moroccan-themed den and offices, light dove gray for the majority of the living spaces, and an auspicious robins egg blue for my kitchen. This may sound like a mad house or a set of brave choices depending on where you fall in terms of house colors. Then add an aubergine front door and you may immediately question what you’re about to walk into. But fun can be had when you’re truly engaged with any project -in the grand scheme of life no matter the size of the tasks involved, when you engage your mind, body, and spirit, wondrous, interesting, and even life-changing results can emerge.

So if we look at the situation as being “stuck,” that’s exactly how the days feel. One rolls into the next and Monday feels like Saturday. At the end of any day you become what your mindset dictates. If we enjoy the opportunities, whether conjured by imagination or something like gardening for rolling colors of white, purple, pink and red as the summer progresses then it tells of growth. Internal and natural.

Where’s everyone?

Somehow for me there’s the company of friends I miss most. Generally people are taken over by all the sparking rhinestones, strands of semiprecious stones on the wall by my desk, the views from our back deck. All promote interesting conversation. Craig’s natural ability to make a very difficult mathematical or technological concept easy to understand align well with his wicked sense of humor. I cook and he entertains with stories, music, his talents are relatively endless compared to most mortal humans.

But we’ve been together going on 14 years. I’ve heard it all. Yet what’s to come – all the plans we made this year wrecked by my lack of an immune system. When I return to normal society is unpredictable.

I don’t know about you, but I go to the store to grab things that don’t occur to him to pick up like toiletries. Once a month I allow myself 45 minutes at the close of Target to gather the missing razor blade refills, shampoo, etc. and I’ll be damned if they didn’t pick now to re-shuffle the merchandise. But instead of frustrating myself, I take a breath and am just grateful I can pay for my cartload. My heart tugs hard knowing others cannot afford a thing beyond basic necessities. So it’s not guilt that I feed my soul on.

I put my heart and m my mind to a find a solution. While three good friends are the beneficiaries – that’s 300% more than zero. And it benefits me and helps offload some of my medical Financial burden and gave me back some of the social FaceTimed I so crave.

Every problem has a solution.

Instead of having a whole bunch of stuff that I can’t possibly ever get in my online shop in this lifetime, I’m doling out categories of merchandise to a couple of friends who lost their jobs or lost the bulk of their revenue due to cancelled outdoor events they’ve don’t mess each year. They benefit and I have gotten my house near clutter free. How much I’ve wanted to do this but had no time nor any real place to give these curated beautiful items a worthwhile home without losing all the time and the money investment. So it’s not completely unselfish of me but certainly it makes me feel good to be able to do something beneficial for someone else. I think helping other people in times of need, times like these, is the kind of thing where we all can benefit – and we benefit by giving of ourselves in a sincere way. The end result of giving is so much nicer than the feeling of getting.

First I determined that I could easily share in my vintage and antique business. There are certain sub genres of antiques I don’t have the time to learn enough about and I have inventory to spare. It was things that I had planned to sell overtime but I know in my heart that I don’t have the lifetime in which to undertake these offerings. Honestly, not knowing how much longer I’ll live is a large part of it and that’s just reality.

So I’ve given one set of friends some of those categories to start a second shop online. Then my other friends currently and successfully sell my antique and vintage hats along with their other handmade leather goods that are absolutely outstanding and artistically creative and well made.

My friend models the hats; her husband takes the pictures. She is so beautiful Both inside and out that her soul really shines through in these photos. It was once said that a photograph stole your soul. I don’t think that’s true at all. And in this case the pictures didn’t steal her soul, but share it.

To give truly is divine.

And I was never very good at receiving gifts. I hate surprises. I always like to know what’s coming. And that’s really unfair to the gift giver but that’s my personality I can’t stand surprises. It’s a confessional that’s embarrassing but what can I say.

In essence over the past four months there’s been a rearrangement in my personality. It’s happened before. A huge amount of physical and mental adjustment to a life with cancer is ongoing and into five long years. If I’m lucky enough to get in another five years, my adjustments will focus on how to rearrange myself to accept my lack of energy, my fatigue, and the pain that I feel when I try and do life without doing more medication.

The third friend overlapped with my resistance to binge watching an entire series of television. That silly fear of indulgence had to fade to the background to return the gift of laughter. He’s allowed over to the house since he too is suffering from a life of pain and I watched him start to teeter into a full blown depression, and I had to grab hold of his hand before he fell over a cliff into a dark ravine. I watch mostly British comedy when I do watch anything besides documentaries. By the way, should you want to laugh really hard Netflix has the British comedy, Man Down, written by and starring Greg Davies. This was the second helping of the show for me, which I consumed along side my friend. I had no idea what damage a stroke can do to someone’s memory. And since he suffered through several strokes six years ago he finds it difficult to remember when and how to laugh. How sad would life be without the gift of laughter. There’s a yoga in fact that is a laughter yoga. So that tells you something doesn’t it?

And I suppose it’s a kind of indulgence, and one that has gotten me through some really shitty chapters in my life. Each night after dinner over the course of about a month, we laughed to the point of tears.

Giving someone I truly care about the remembrance of how to laugh what was one of the best things I could ever give anyone. It’s certainly worth more than money and the most gratifying activity in which I’ve actively participated. There’s a few more personal stories I can share but I think you get the point.

We can choose loneliness, anger, resentment and pain. Or we can turn ourselves inside out and find our hearts exactly where they’ve always been. Right in the middle of our chest still beating while we are still here. So taking loneliness and isolation and upturning that negativity by actively reaching out to those who needed me most when they are in a time of the most need. This is a time when we can all turn inside ourselves or we can turn ourselves outwards and be of love, spirit, and of heart. That is what I am most grateful for for this entire COVID19 situation.

Cancer is difficult mind you and it certainly has its downsides during this whole thing because we can’t go out very much especially if I immune system‘s are compromised by chemotherapy. However We can still give of our personal gifts. And that is the best gift we can give to ourselves.

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.