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

Metastatic Cancer Awareness Day: 114 more will die

In the United States, 40,000 adults died last year from a particularly horrible terminal illness. The same critical disease queues up approximately 155,000 into a lemming line and eventually fall inside our graves. Remarkably, exact statistics aren’t available to understand how many people died as a result of metastatic breast cancer (MBC). Many of us lemmings in line, we’re not counted in the statistical data. For instance if you’re diagnosed this year with any stage of primary breast cancer for illustration purposes say 15 years later you’re one of the 30-40% who will eventually be diagnosed with MBC, you’re not counted in that number because you’ve already been put into the pool when first diagnosed with stage 0 and I-III.

Furthermore, if you’re “lucky” and you survive MBC more than five years and we’re diagnosed de novo (from the start) then there’s no formal tracking at least not in the United States. I suppose it’s not as interesting since it would sound less sensational to the pharmaceutical companies to track 15% give or take. Not many of us live five years beyond diagnosis – the majority die in an average two and a half years.

You bet I’m glad that we had one day. Wow! For those 30% who will find themselves diagnosed with MBC – the vocal metsers or metavivors have an entire day to explain what stage four metastatic breast cancer really means. To try to define the extent of collateral damage to our lives. To leave women (and men) with a better understanding of just what it means to live with an incurable disease. To hear these phrases over and over, “but you look great!” or the ever popular “you don’t look like your have cancer.” To have people who were once close you actually not believe your diagnosis. For family believe you’re actually lying about having MBC since you simply look too good to have any disease at all.

Just a lazy, early retried, government money sucker. I wish. No, I don’t wish. I do wish I were not laden with dense breast. The tissue in my fun bags is indistinguishable from the blood sucking cancerous tumors that started whittling down my life to a stump nearly five years ago. The years when the discussion was about indeterminate mammogram and ultrasound results. The years just before 3-D mammography might have saved my life. If you so happen to have dense breasts like I do, insist on more diagnostics and a physician who’s better at reading radiological results than the abilities of an average technician or your general practitioner. I wish I’d known more then. But wishes don’t often translate to reality once the blade has come down in the guillotine. My tumors weren’t large and still have no lymph node inclusion. It wasn’t law yet to notify women of their breast density. According to areyoudense.org

Adding more sensitive tests to mammography significantly increases detection of invasive cancers that are small and node negative.

I wish either sociopathy or borderline personality disorder were my diagnosis instead of invasive ductile carcinoma with osseous metastasis to the bones, liver metastasis, multiple periocentesis to drain asceites fluid buildup from my abdomen, and a nice size tumor that pressed on my duodenum and would not allow any food to pass from my stomach to my small intestines. My body is an amusement park for cancer, an e -ticket ride at one of the many Disney theme parks. This one is Cancer Land where the characters aren’t cute and they come home with you for the rest of your life.

I’m on my third line of therapy. Xeloda in 2015, Ibrance and Fulvestrant in 2018 and currently, and Taxol in late 2018 and the first six months of 2019. There’s still lots that I can do. I also take charge of my own health and my oncology teams. I’ve moved to a less stressful more peaceful place. But I’m lucky as I know many women do not have some of the resources of a partner as I do. But if you take one message from my day late post, insist on the right level of detection for you even if you are unlucky enough to wind up with a cancer diagnosis. It may save your life.

No poem this week. I’m a little down and I’m going to pick myself up as I have done every day by drawing. I’ve been Zentangling on every piece of paper I can find. It calms me and I keep my mind really busy when I need to – I highly recommended it. I couldn’t draw, either. But I can now. It’s amazing what we can do if we put our minds to it.

One Word Can Make All the Difference

So, there’s wonderfully good things that transpire to create a solid high of energy around us that heal. Then I think neutral stuff happens all day long like stopping at a red light. It can be a negative event if the conditions we perceive make it so: e.g. I’m late so this might make me later still; I have bad luck. Outside of all perception and control things happen all around us: environmentally, socially, scientifically, etc. We assume we have some way to partake in those events or that they conspire against us to create a negative vortex or a positive window or door to look out or step through. It’s vague. But the vagueness is very interesting isn’t it?

Perhaps you feel like cancer or disease is in some way your fault or a conspiracy of circumstances. I actually believe it’s both. In my heart I now know there preceded my cancer diagnosis events that were incredibly stressful creating a hospitality center for my cancer to take up residence in my body. It’s not my “fault.” There’s no way we can know just what dis-ease lie in wait for us except for the occasional discordances like diabetes, which is generally genetic. However that’s controllable with diet.

We live in a diseased environment that much like our bodies under stress develops dangerous conditions in which nature slowly dies. In some sense I’m glad I won’t be around to see the death of our planet as we know it. Depressing. But truth be told did we need the fluoride in our water? Did we need all that corn? Do chickens need such big breasts that they fall over? Does organic even mean without chemicals? No. None of this is true. But we are fed a body of fear to add to our newly stressed out lives and we wonder why breast cancer rates since the 1950s have increased from 1:40 to 1:8 (or 7 depending on who you ask). That’s a gigantic rate of increase in a very short period of time. And not to get too much into numbers but only 5% of cancers are genetic. Including breast cancer.

So what can we do about all this? Well I am headed back to Commonweal in Bolinas, California in two weeks to attend my second session at the Cancer Help Program. (CHP information)I’m giddy with excitement and literally cried tears of joy upon receiving the call last week. And we are in the midst of closing on our house and finally finding a new one. But it doesn’t have to be stressful. I sit in acceptance of offers of help from a professional organization expert hired for me by my realtor, with C’s assistance and the enlisting of a moving and storage company if it comes down to it. I’m not giving up the opportunity to move to a new home with my life partner and best friend to drag the same shit along buried deep in a dark box from my internal attic. No point. It wasn’t working for me before so it won’t work going forward.

The first week long program started the healing in October of 2016. But I knew I wasn’t well and wound up spending a week in the hospital upon my return. C was at the apex of his depression and there was no relief in sight. He was hospitalized about two months later as well, for his anxiety had gotten so bad that I couldn’t in good conscience watch him deny his condition any longer. A long road to healing began for us both individually and as a couple.

But something seemed really undone. Like a frayed rope or like confetti or ticker tape after a parade my mental streets need sweeping. I called one of the founders of the CHP in March hoping to get to the June week program before the summer break. Only eight people can attend. September had the right mix for me with the other seven attendees. June just didn’t play out.

I am blessed again to benefit from people I love and respect and who gave me a path to find my way to new meaning. The most profound statement of healing cane from one of my private sessions with Michael Learner, the founder of Commonweal. He said, “Ilene, why don’t you call yourself a writer? That’s what you are.” And a simple statement changed the course to bring us here. Today.

I am a writer headed back to the Cancer Help Program in two weeks. In the meantime I hope to post one more time to respond to Nancy’s Point and her Blog Hop. I feel like a bad friend but I know she understands.

I’d check out her blog if you’ve not been there yet. I love Nancy’s way of explaining the emotions and medical conditions about having cancer and losing her mom to cancer as well. Take the time to read her stuff it’s worth it. She’s also written several helpful books especially for those new to this cancer culture that you’ll welcome even if it’s old hat.

And with that I leave you with my love and my light and a gentle goodnight and a poem from Robert Frost:
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference