Layers of Acceptance

losing our lives and the cost of indifferent behavior leadership on the individual

How do you feel these days? Anxious? Nervous? Depressed? Incarcerated? On house arrest? Disrespected? Cheated? Angry? Depleted ? Bewildered? Mistreated?

Do you feel a complete lack of deference to the administration in power in the United States?

Deference (also called submission or passivity) is the condition of submitting to the espoused, legitimate influence of one’s superior or superiors. Deference implies a yielding or submitting to the judgment of a recognized superior, out of respect or reverence.

Wikipedia.com

Lately the windows seem like walls. The walls seem like prison bars. The front door like a vault passage with an unrepentant encryption lock. From the last fateful weeks of February 2020, I’ve been in lockdown and need to climb up Mount Kilimanjaro past the cloud layer, light headed from a lack of oxygen(kind of like if wearing a mask and breathing in my own CO2) to gain another level of acceptance. The insight into what life truly could look like when someone says, “well, could be worse.” I think the current situation with COVID19 maybe the “worse” case referenced in that vague statement of what could happen. And it’s so frustrating. We had several opportunities to stop the spread.

Now, consider this: the CDC is saying the situation will probably last until early 2022.

I feel cheated of my time remaining on this conscious plane in this terminally-ill body. There’s a mockery of global leadership just idling by in the Oval Office. He and his cronies couldn’t care less about people’s lives and what their lack of planning has done to our country. If you watched the second and final presidential debate for the 2020 election. You listened and heard the leader, of what I’ll now call our post democratic society, lie. And lie and lie and lie without putting forward answers to simple and valid questions that effect me and everyone else with a terminal illness.

In cheating their way into what is considered the singly most powerful position in global leadership they cheated us from our precious time with people we love. Cheated us from traveling to visit one another.

Thanksgiving cannot take place over a zoom call. The lifesaving hugs so integral to healing by releasing endorphins into our bloodstreams cannot become real — I had a virtual dance party during a Living Beyond Breast Cancer (LBBC.org) that at first provided some fun. But it’s hard to dance to the beat if there’s an elephant in the room stepping on my feet.

At least with – all the universes willingness – Biden in the Oval Office and Senator Kamala Harris up the hallway as Vice President, I won’t have the stress that I’ll lose my health insurance and my stage IV cancer will be treated as a preexisting condition.

Being forced into retirement at 49 and on disability for the rest of my life, their decisions significantly effect me and others in my situation. Some already have to a pretty large degree. Now we have less access to our physicians. The life sparing clinical trials have all but slowed to a halt because people who are needed to participate cannot travel – this past four year period of time will have lasting impact on so many people. The worst of that impact is our very mortality. It scares me to think the entire metastatic cancer population will be completely wiped out for reasons I cannot reconcile in my heart.

So I think having a metaphysical and mystical experience will help to decrease my anger and anxiety. There was enough to reconcile before this tragic era. Now the tragedy will take decades to right itself if it ever even does. There’s no new normal. We will all be feeling a shift in our lives from now and through the end of days. Talk about the butterfly effect – this is more aligned with a swarm of locusts effect.

So please vote. Please peacefully protest should some outrageous stunt a la Pizzagate and the disintegration of the dream of having the first woman president ripped to shreds. Let’s not forget that when Sen. Harris debated Mike Pence it was a historical event worth celebrating.

Instead a fly that for over six minutes flew around the white head of an ill-elected Vice President became the news story of the day. Proving we are in a time of lies and the bullshit that took our lives and left us to die like carrion on the side of a lonely road. But no one will be by to pick up the bodies. The vultures are already picking at our bones.

Irreverent hospital signage. No shit, that’s how I wash my hands? Thanks Stanford! A university education can only go so far

With that I’ll leave you with a few recommendations of cancer stuff. Listening instead of talking, opening up rather than shutting out brave voices and kinder hearts unafraid to discuss things as they are. Reminding me to live in the moment rather than putting my anger into the world. There’s enough of that going around these days and I’d rather hear some people I have come to know and care about personally. Listen and watch these wonderfully brave people – they’ve gone yards ahead of the written words you read here and it helps me to grapple when the silence is deafening:

Our MBC Life one podcast totally focused on metastatic breast cancer, thank you ladies. Let’s support them as they get their feet under them.

Thanks, Cancer! Leanne and Mimi discuss politics and cancer in their latest podcast

https://www.youtube.com/c/BrainCancerDiaries Rudy is absolutely honest and irreverent and has inoperable brain cancer

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.