“Someone’s knocking at the door/ somebody’s ringing the bell/ someone’s knocking at the door/ somebody’s ringing the bell/ do me a favor, open the door/ and let ‘em in”Paul McCartney
Dreaming of the things we took for granted I feel a bit of fresh air finally coming in through my open door. Along with hugs. Smiles. Kisses. Dinner out in a restaurant. Seeing a movie on a large screen in a theater. Going to a library. Visiting a museum. Hiking. Traveling. An endless list of options once considered everyday banalities, now sporadic virtualities. Someday soon we’ll re-enter life in a world changed forever by a virus run amok into a pandemic.
It won’t be the last pandemic, either, and Covid wasn’t the first. But even in the 1300’s during the plague and again in the 1910s during the influenza pandemic (or the Spanish flu pandemic) we responded the same – lockdown, wear a mask and wait for heard immunity. Yet, technology moving at a pace never imagined brought us a lightening quick series of vaccinations. And regulators and financial spending didn’t stand on its way. In fact the vaccines are tremendously lucrative for Moderna, Pfizer and Johnson & Johnson.
Yes, both me and the mister decided on the J & J vaccine. Healthier for me in terms of the break I needed for my immune system to adjust in order to allow my body to be able to handle it. My oncologists all said, “get vaccinated, whatever is available, but get the one shot if possible.” Done. Yet the danger lurks. still mask and wash and disinfect.
If you didn’t already know or suspected at any rate, the data and experimentation used in CART-T therapies and immunotherapy from cancer research helped inform researchers in developing the Covid vaccines so quickly. Superpowers of the stage 4 guinea pigs to the rescue.
Here’s some links to science backed data on cancer and the Covid vaccine from our friends at the CDC, ASCO, and other trusted sources. But what do we really know yet. Some believe it’s an overblown hoax used by government to control citizens. Maybe so but I’ll not take my chances.
Now, on the precipice of emerging with caution from lockdown and from the isolation of Covid slowly as we are, I consider the following implications:
- First, how do we bring our positive social lessons with us to this new society in which we find ourselves? Will they be forgotten until the next crisis?
- How will the medical community bring to bear its new found agility and ability in other areas of R&D for cancer and other diseases.
- There’s no denial it’s possible to turn quickly as well as information share for the greater good as witnessed in the development of three vaccines in the United States and more on the way. Will profits outweigh people after the pandemic’s distant memory?
- What future implications will these vaccines have on those with immune suppression from disease or medication?
- What are the true implications for those with terminal cancers of missing treatments, visits, surgeries and clinical trials during lockdown?
The New Political Pharmacy
Medicine became a political and socioeconomic matter, indeed, with the wealth bumping the line and paying for their vaccines early. I suppose the parties we witnessed online and in social media were as a result of vaccinations purchased by wealthiest of our population.
It’s clear to many of us that there’s an agility in pharmaceutical research and development in response to the current global pandemic. I believe many of us with cancer can agree, the disfiguring ways in which fun house mirrors reflected a world with Covid also reflect our world with cancer. Cancer and Covid staggeringly effect the global population both societally and economically.
The glaring difference staring back at us is that there’s no rush to cure cancer. Each victim is a cash register for the supply chain of curatives – medical, mechanical and pharmaceutical. Unlike Covid, where’s the rush to develop cures? We’ve seen better technology for early detection. However insurance companies rule upon the timing for which each cancer is tested for in a person’s life. Legislation changes come slowly and with loss of life and worker productivity at its expense.
I am sure that those who were diagnosed with MBC at a young age, say under 35, wouldn’t have had the benefit of any new technology. Specifically those in socioeconomic groups that cannot afford a mammogram or don’t have insurance that will pay for a mammogram under the age of 40. Furthermore the edict for educating these groups slowly limps behind legislative and medical breakthroughs.
So much for early detection for breast cancer. I’m not sure what the age is for prostate cancer, or colorectal cancer. I do know that my husband was offered his first colonoscopy at 52. I remember so vividly because it was in the second year after I was diagnosed with MBC. The poor man drank the gallon full of disgusting liquid, cleared out his bowels only to have to take me to the hospital where I spent a week thereafter. I felt exceedingly guilty but he’s not had one since the aborted mission.
We’re late in the game especially because we do not know his medical history. He was part of a closed adoption in the state of Minnesota. A state that’s determined a person hasn’t a right to their own birth records, if born prior to 1975 last I looked. Records that can save lives with medical family histories in the memories of unknown biological families. Finding out literally takes an act of congress to open these files.
I cannot imagine not knowing what my medical history was to understand how my medications and my cancer might effect me. It’s more important than ever psychosocially as we re-adjust to life anew.
Our world, either close to home and in the vastness of our planet, significantly changed, as our lives with terminal illness changed along with it.
Connection through Cold Calling
Consider exercising and doing it alone or with others online, like yoga. Consider the loud sound of slamming doors to clinical trials. Consider in person support groups shifting to Zoom. Consider how that shift from in person to video conferencing widened our world view. Consider newly formed or deepening friendships. Consider staying at home and not having to get dressed and drive to cancer support groups. Consider learning new skills and developing talents – arts, writing, advocacy, other support techniques.
Yet consider this: what of the many downsides will remain unknown? Like the extent of Covid and sheltering in place on patient health and mortality rates until we know by way of absolute data. When it’s too late. The number being thrown abut is 10% higher mortality in the next 10 years. I likely won’t be around to find out, but I’d bet the statistics are conservative at best.
Paradox after paradox, we learned to become patient patients in a physically smaller world yet a world without borders in the privacy of your own living room. I’m not sure if I’d trade the time I had to slow down and focus on things I’d been putting off because of time, yet I found myself busier than ever.
Did you align with my experiences or were they different? How did you deal with life changing events beyond our control? How will your behavior change going forward? What will you take with you from the time of the pandemic and what will you be happy to leave behind?
I know I’ll do an interpretive dance the first time I’m able to fly out of my state and I’ll include singing to my dance as I fly out of the United States across time into another country all together. That’s what I love to do – travel. My happy feet became fairly sad as I was earthbound and locked down to my immediate environs.
C’mon now touch me, babe!
Many of us have found new ways of reaching one another on so many levels. I think this can also be a part of the patients own way of palliating themselves as they reach out through technology with zoom and so forth, those things I think will remain a part of our culture.
I welcome bringing these cultural new norms to my everyday life as I reach out geographically with my entire presence not just the picture of me on a screen. I’ll hug the friends I made in person someday but won’t give up texting, calling or zooming with them either.
And by way of self palliative care, here’s an example of what I mean in the literal sense. A friend sought out palliative care after we’d had many discussions of my benefits. She’d known of palliative care before of course, but as she continues with protocol after protocol the side effects become less easy to bear.
However she came up with her own solution. Her oncologist and the lack of resources in her immediate area, and her inability to get appointments outside of that area due to travel restrictions and sheltering in place. she “rolled her own” as she put it. As in so many geographical regions, there’s no offering of palliative care. If there is, the oncology department isn’t accustomed to allowing other physicians and other professional practitioners manage the side effects of MBC.
Side effects stemming from surgeries, toxic medications, radiation and chemotherapies. And not just physical side effects but emotional as well. On her own she researched and found what she needed and one thing she absolutely did not need was permission. Would this have transpired prior to the pandemic? I can’t answer that for sure.
Desperate times call for desperate measures.
Evidence, my dear Watson.
Further evidence continues to come forward regarding adding surgery to metastatic patients’ care plans as it once was. Over 20 years ago.
But how to get an operation when patients, hospitalized for Covid, overflowed medical care facilities and sucked up every last human and equipment resource? Not to mention the doctors and nurses suffering from the disease themselves as well as exhaustion and burnout.
I read recently of a doctor who committed suicide after two months of being unable to save the lives of her patients dying on ventilators from Covid. I don’t know what the suicide rate is of oncologists with stage four or terminal cancers. Yet I don’t believe I could do a job where the tools at my disposal will only extend the life of my patients not save them.
My Self Advocacy
My palliative oncologist and I have had some wonderful discussions over the course of the last year and a half. We’ve had our talks primarily during our tele-visits. There was one visit we had in person sometime in early December, 2020 because I was fairly ill at the time and was preparing to add a closer oncologist and hospital to my care team due to the tentativeness of my condition.
However, the depth and the richness of his help in guiding me through a difficult physical time in my life with MBC surely was integral to my improved state of health. I’m doing far better and the physical side effect management was tricky.
Tricky because of the amounts of pain medication. Tricky due to interactions with my current targeted therapy and hormone suppression treatments. Tricky because he can’t see me physically and has cultural on photographic representations of side effects like leg lymphedema, cellulitis, and abdominal ascites fluid build up. How my discussion and his recommendations align come out of communication and self reporting of the efficacy of the determined treatments.
Of course each time I find myself in the predicament of a treatment no longer working it becomes more and more emotionally difficult to digest. For one, how many more available treatments or clinical trials remain before I’m told, “we’re sorry, there’s nothing left we can medically do. Now we can only try to make you as physically comfortable as possible and monitor your progression.” In other words, we don’t know how long you have but good luck and have a nice death.
In the course of life we deal with mortality concerns and I’m weary of my disease management. There’s no respite for the patient. Palliative care is the only honest place where we can seek out the respite from our pain and our own burn out with MBC and other terminal illnesses. We always talk about care giver burn out, but patient burn out is something I think needs addressing.
I grow tired of taking medication, from going into the lab for bloodwork, from making and managing my oncologist appointments, from planning out scans and the ensuing anxiety of the possible results, from trying to keep the house and the domestic responsibilities, from the inability to travel, for being late, from doing patient advocacy work and training to be of better service to my community, from dealing with finding financial assistance in paying for all of the remedies, from finding help with all of the aforementioned cancer duties, and my losses of physical self, friends, memory, time…
Covid is indeed a serial killer here to remind us that nature can crack it’s whip very quickly upon the backs of those who try to tamper with and destroy the ecology of our planet.
Environmental causes certainly play a huge role if not the primary role in the extreme uptick in breast cancer cases over the past 40 years. It also played an enormous role in the spread of Covid. Both diseases are political matters to a large degree. What’s become of the Cancer Moonshot? Why have we seemingly pulled out of the ongoing Viet Nam style War on Cancer?
The percentages of genetic cancer is the same (though not as a percentage of overall cases its decreased – our population explosion went from a huge atom bomb to a small fire cracker). The percentages of environmentally caused cancers is astronomical in terms of statistics. This will catch so many people by surprise, and those with metastatic breast cancer clearly have increased as well.
So my question remains: with all the wonderful personally satisfying additions to my life, with my new and deeper relationships, with time saving telemedicine, with all the positive Covid-driven positives what will the medical community do to explain why it’s impossible or not feasible to move with the speed of breaking the sound barrier to cancer research and new developments?
Specifically in the area of metastatic and terminal cancers, we’re used as guinea pigs. How about treatments specifically for the lab rats and not for early disease treatments or overall prevention?
Why is it that still less than 7% of all research dollars are earmarked for us? Why do we fight to pay the astronomical copayments and the insurance itself? Why do we need to carry the stress that goes along with the financial responsibility sitting atop our shoulders like Atlas carrying the world on his shoulders?
Will we use telemedicine to bring clinical trials to a wider audience when the medical and pharmaceutical communities complain that they cannot recruit enough patients? The patients generally bear cost of travel and hotels and food. Why? Because we’d like more time to live and money vs. life sometimes becomes a decision that makes itself for us.
It’s the economy, stupid.James Carville, Bill Clinton’s 1992 campaign stump
Similarly during the first rounds of vaccines after first responders and medical professionals and required workers, why we sat waiting while inmates (I know it’s a hot button. But I think of it this way – we did nothing wrong except have bad luck to be incarcerated by terminal cancer).
I didn’t do anything wrong to deserve this death sentence and no one else did either. But the environment that cause our mortality to slip through our fingers like sand has been destroyed by large companies. For instance: chemical giants like Monsanto; computer and semiconductor behemoths producing toxic waste in constructing semiconductors; wireless airborne Electro Magnetic Frequencies, even in our homes by using wifi, smart meters, and microwaves (wait for my blog on this topic – you’ll be wearing tinfoil hats once you read about it); pharmaceutical companies polluting the water as well as patients not knowing how to dispose of leftover medications.
These examples merely tough the surface tension in the water. And, in large part are the cause of the cancers that kill so many, or will kill so many.
Was it the same indiscretions that begot Covid? I think we must learn the lessons both good and bad and stand up for ourselves and the future if it’s not too late. That polar bear stranded on a calved iceberg out in the sea is a sad reminder of what’s happening to our society through greed and corruption and the geopolitical underpinnings of it all. Biochemical warfare may not be on the radar because of the evidence of techno warfare. But both stick needles in our arms, our ports and our lives.
We are the voodoo dolls of greedy companies and irresponsibility. Let’s see what happens when we stick a pin in this heart.
The heart will break along with those who loved us. And those who died of Covid.