medical crisis

Feb

2024

My Lady Parts Keep Trying to Kill Me

I thought I was done with cancer. Did my time, paid my dues back in 2008 with breast cancer. But for some reason my lady parts weren’t done trying to kill me, and they attacked with a vengeance late last year. A double whammy – independently sourced ovarian and uterine cancer, unrelated to each other or my previous breast cancer.

For good measure, the less dangerous Grade 1 ovarian tumor touched some endometrial tissue (did I mention I also discovered that I had undiagnosed endometriosis for the better part of a decade?) on my left fallopian tube, and gave birth to a small (less than one cm), very rare, Frankensteinish “de-differentiated” tumor with stem cell-like capability to adapt, morph, grow, and spread like an invasive weed during a rainy summer. They are so rare and usually caught so late that there is very little data about them worldwide, so the data about my very tiny one will be shared broadly – not exactly the kind of notoriety I was looking for. Carrie, my oldest child, quipped “Worst superpower ever, Mom.” Apparently, she’s absorbing my occasionally macabre sense of humor. Repeated bouts with cancer, either your own or that of someone close to you, will do that to a person.

Thankfully, we caught this malicious little monster of a tumor unusually early. Hopefully removing all of my abdominal lady parts, plus performing an omentectomy (go ahead and look it up, I certainly had to – not the kind of tummy tuck I’d recommend) got it all, along with the Grade 1 uterine and ovarian cancers, too. My six rounds of chemotherapy infusions plus some immunotherapy meds will serve as insurance to try and make sure it’s all truly gone and hopefully will significantly lower my risk of recurrence – especially the malicious little monster. I never laid eyes on it personally (deep anesthesia, complete with intubation, robbed me of that chance and it kept hiding from view during multiple scans), otherwise I’d have given it a name. So “malicious little monster” it is because that’s more alliterative and G-rated than “sneaky little bastard” or “nasty little f#@ker.”

When I had my breast cancer back in 2007-08, it was low-grade, Stage 1, and opting for a full mastectomy was considered curative, with a few years of the medication Tamoxifen thrown in as insurance. Genetic testing that more wimpy tumor showed that my risk of recurrence was only 9%, and so it was believed that chemotherapy and radiation would do more harm than good. As a result, I was able to avoid both of them. Whew! Bullet dodged, I thought – I’m done with cancer now. If I got any more cancer, I thought it would be colon cancer, which runs in both sides of my family, and I’ve had enough suspicious looking polyps by now that I’m on a 3-year colonoscopy schedule rather than the usual 5-10 years. How much you wanna bet I’ll be annual after this? Fun times.

I recovered from my two cesarian sections, my mastectomy, and my recent major abdominal surgery really quickly. It’s a more positive superpower I seem to have. However, my torso is now a topographical map with a vertical river of an incision scar running due south from a couple of inches above my belly button down to my older, horizontal c-section scar. And there remains my old mastectomy scar, which is still visible even with my breast implant. In addition to the scars, because of the nature of the vertical incision and my lack of the extra protective layer of an omentum, I will always be at higher risk than usual for hernia. Heavy lifting is now a hard no for me, so if my friends and acquaintances see me play the helpless, weak lady role in the face of something heavy it’s not a retreat from feminism, it’s just me trying to avoid having my intestines make their way outside of my abdominal wall, so please cut me a break and help me out. But with all of the stress, appetite loss, and dietary restrictions that came with the cancer symptoms and everything removed during the surgery itself, I easily and quickly reached the goal weight at which I’ve been aiming with varying success for about 15 years. It’s not a weight loss regimen I would recommend, but at least I look pretty awesome in clothes. When it comes to cancer, you emphasize the positives where you can.

The chemotherapy regimen for ovarian cancer, even early stage (I was Stage 2A – one of the first things you learn once you’ve been attacked by more than one type of cancer is that the staging parameters for different types of cancers varies significantly), is pretty nasty. Two strong chemo medications are prescribed to be infused in sequence, which takes 4 hours, but they first must be tempered with a 40-minute IV drip full of electrolytes, anti-nausea meds, antihistamines, and steroids. And if your immune system reacts strongly once they begin infusing the actual chemo meds, as mine did, that means they pump even more IV Benadryl and a second steroid into you with syringes and stay ready with an Epi-pen just in case.

Most folks don’t react too badly, and the few that do only react during the first infusion. Not me. Apparently, my body can’t recognize its own cancer cells and kill them, but it is quite proficient at recognizing when it’s being poisoned. I not only reacted with the classic stabbing lower back pains they warned me about both times, but with the second infusion I added even worse additional symptoms: a racing heartbeat and shortness of breath. I had to put up my hand in protest and gasp to please let the extra syringe full of IV Benadryl do its thing when one of the three nurses who had converged on me asked, “should I hit her with the pen?” I put up my hand and spoke up because I figured if I could still breathe well enough to talk (and the back pains were subsiding), then an Epi-pen stab would likely do more harm than good. She held off, and when the shortness of breath and racing heart were not completely calmed by just the Benadryl, the extra IV steroids were opted for. My reactive symptoms to the chemo meds came both times at exactly seven minutes after the first chemo med infusion began. At least I’m consistent about something.

I live 46 miles from the main oncology clinic where my oncologist is based and was hoping that after an infusion or two, perhaps I could receive my chemotherapy at a clinic a bit closer to home. But because I am such a problem child, I must keep going to the main clinic until my reactions subside. Reacting to the second infusion is pretty unusual, and the third time is quite rare, but given my malicious little monster and all, rarity is apparently my thing now, so who knows?

They say that you establish a chemo side effects pattern pretty quickly after the first two infusions and then it holds consistently through the rest of the infusion cycles. For me, because of the extra doses of Benadryl and steroids, my side effects get delayed for about 36 hours. I’m sleepy from the Benadryl all through infusion day (I call it day zero) and that evening, which means I cannot drive myself home. My husband has been the one to accompany me to my two infusions so far, and because I am so sleepy from extra Benadryl dosing, he gets a lot of work done on his iPad Pro while watching me sleep. Unfortunately, he has unexpectedly had to leave the infusion area to take phone calls both times before my reactions occurred, so he has completely missed the excitement of seeing three nurses converge on me with their bright orange tackle box, multiple syringes, and Epi-pen. Because he has a tendency to leave unexpectedly, the nurses have taken to giving me a little bell to ring if I feel reactive symptoms once they start the first chemo infusion bag. I do ring it, but very softly, as if I am somehow bothering them by doing so. I don’t really know why, but I suspect it’s a female/mom thing. We women always feel apologetic bothering others with our own needs, no matter how dire or justified those needs might be. “Sorry to bother you, but my heart is racing and I’m starting to have trouble breathing . . . “ In-grained gender socialization sticks hard, am I right ladies?

The Benadryl wears off early the next morning, but the steroids are still in my system (just ask any athlete who dopes and gets caught), and so I am wired to the point where I can’t relax and sit still the entire next day, have trouble sleeping the second night, and still feel quite energetic the second morning. I take that time to get a lot done while the energy and the absence of pain lasts. Like I said, with cancer you emphasize the positives when you can.

However, by 4:00 PM that second day the steroids dissipate, and I’m curled up under a heavy layer of blankets, shivering with feverless chills, and random but constant shooting pains that plague my lower body. They feel a lot like sciatica, but occur throughout my hips, legs, feet, and lower joints. I did manage to lessen their severity somewhat below my knees by wearing compression socks during my second infusion and for a few days afterward. But it took me several days after my first infusion to realize that this was, yet again, an immune reaction that pain meds simply did not phase. Not even oxycontin dented them much. The oncologist on-call over that first weekend suggested taking antihistamines instead. So, I take Allegra every morning and during the day layer on top of that the ingredient in the old over-the-counter medication that used to be called Actifed, and I take Benadryl at night. That does more to bring the pain down to a dull roar than even Oxy did. They are not certain exactly why, but it works. Heat therapy helps some, but I cannot use electric heating pads or blankets because I am one of those weirdos upon whose wrists analog watches will completely stop – I can drain a watch battery in record time simply by wearing said watch. Since the main active ingredient in my chemo meds is the metal platinum, which conducts electricity, applying an electric heating pad to my aching legs increased rather than soothed the stabbing pains I was experiencing, which was a rather nasty surprise.

Despite the antihistamines, the pain and corresponding fatigue of that first infusion cycle lasted eight days. I finally woke up at 3:30 AM on post-infusion day nine, so soaked in sweat that I had to get up and shower. Speaking of that, did you know that when you are going through chemotherapy all of your body secretions are so toxic that you literally need to protect your own skin and your loved ones from them? You must brush your teeth and/or rinse your mouth more often, and drink lots of water, even during the night, to flush the toxins out of your body and to keep your bladder from getting too irritated by sitting statically too long, filled with poison. If you have pets or little kids that might get into the toilet water, you must be sure to close the lid and flush twice, especially if you have a low flow toilet. Wanna have vaginal or oral sex? A condom must be used. No deep kissing. If you sweat on your partner, they should shower too as soon as possible. It’s sobering to think about how toxic my “medicine” is when I practice these precautions myself, as well as when I see the infusion center nurses glove, gown, mask, and goggle up when they are handling and hanging my chemo meds IV bags, just in case the bags leak or get dropped and spill. No need to gown me up, though – I’m already full of the stuff. Even one’s tears become toxic and can change some people’s vision. Fun stuff. Anyway, after my shower and donning a change of clothes, I felt great – no more chills, aches, or fatigue. But I was also wide awake at 4:00 AM.

Unless you pay something like $5000 out of pocket to wear a “freeze cap” on your head during chemo infusions to garner an 80% chance you won’t lose all of your hair (it still usually thins significantly), your chance of losing your hair with this chemo regimen is 99.9%. Because I was not willing to pay $5000 cash for six of the world’s worst ice cream headaches without the benefit of the ice cream, I am not the rare exception when it comes to hair loss. I had my mom clipper off what was left of my hair a day before my second chemo infusion, which if I stay healthy and can stay on schedule are 21 days apart, with the last one occurring on May 1st. Goodbye to my hair, and hello to a really nice wig, hats, and fake bangs to wear under hats (yes, those are actually a thing). Surprisingly, my eyebrows are still hanging in there, thinning but still there and even feebly trying to grow back – I even had to pluck two little strays this morning. So far, I seem to harbor “The Little Eyebrows That Could.” We’ll see if they keep it up, since I’m sure it’s a worse uphill battle for them than that storied Little Engine faced, since he was just being overloaded, not poisoned. My eyelashes are thinning slowly, with no sign of regrowth, so I’m assuming they will be gone soon. I can’t wait until my leg hair gives up completely, though. Too bad its loss can’t become permanent, since my chemo regimen costs a lot more than laser hair removal treatments do.

The second infusion cycle has been better – my number of bad, painful days decreased from nine to four, which is progress. I’m hoping that will now be my new pattern and that as my immune reaction decreases, the pain on the bad days will continue to lessen in intensity. The addition of immunotherapy meds to my infusion regimen for my third cycle could introduce a wildcard that could disrupt this pattern of improvement, and I know for certain that it will at least temporarily increase my already keen need to avoid getting sick.

I am told that even if my pain decreases, my compromised immunity and fatigue will be cumulative throughout the entire chemotherapy regimen, worsening with each infusion cycle. Which means that I must stay away from crowds and sick people for the next several months. And so, my friends, if I decline an invitation or fail to show up to events you know I would normally attend enthusiastically or even help to lead, I’m not being rude or anti-social. I am simply trying to keep from, at best, getting mildly sick and disrupting my chemo schedule or, at worst, ironically dying from a more common illness after going through all of the trauma, discomfort, logistical battles, and expense I have experienced thus far to avoid dying from cancer. Those logistical battles and expense will be the subject of an upcoming essay, so please stay tuned.

Mar

2020

How to Make a Public Option Work

Even before the Covid-19 crisis hit the United States, I had been terribly frustrated by the health care debate because it doesn’t focus on the fact that our system of employer-provided private health insurance evolved in the immediate post-World War II era completely by accident. Employers started providing private health insurance to employees as a way to attract and retain workers, and strong unions negotiated health insurance plans as part of their bargaining strategies. It was the failure of the federal government to pass publicly funded health care when it created the Social Security system in 1937 that necessitated this trend, and Congress again missed its chance to provide universal publicly funded health care when it created Medicare in 1967 – it provided Medicare only for senior citizens, and no one else, and Medicaid was added as an option of last resort for the poor and disabled.

But that 75-year-old employer-provided private insurance system has eroded and failed us in the years since 1967, and it is long past time for a switch to universal publicly funded health care. Unfortunately, it likely cannot be done all at once, and it must be done in phases and carefully, because we will only get one shot at it and if we mess it up the backlash will be severe and we will end up with the status quo or worse for another decade or more.

I have studied all of the Democratic candidates’ health care plans, from moderate “public option for those who want it” plans to Bernie’s “Medicare for All, ” and I believe that none of them can realistically achieve publicly funded universal health care as written because they all forget one of two essential considerations.

1. It would be economically disruptive to completely end private insurance all at once. Not just the insurance and pharmaceutical industries will object, but also other businesses and the public will be resistant to radical change being forced upon them with a sudden mandated shift of everyone to Medicare for All.

That is where Bernie Sanders’ plan goes wrong, even though he proposes a phase-in period of a few years. It is still a forcible option that will be resisted strongly by the health insurance and pharmaceutical companies, and other business sectors and members of the public will lack the incentive and confidence to support it enough for it to pass into law. It also does not do enough to mitigate the economic disruption and employee displacement created by the rapid dismantling of the private insurance industry.

2. The second essential consideration is that a pathway to universal publicly funded health care must include an extremely good public option that people will want, but the pool of people within it must be large enough to make it as cheap or cheaper than current private plans while still providing high enough provider reimbursements to support specialty care. Just adding a public option while saying all private plans should remain intact if people want them (as suggested by Biden, Buttigieg, and Klobuchar) won’t achieve that. How to create a large enough pool of people while minimizing disruption and mitigating insurance and pharmaceutical industry resistance?

Do this: When rolling out a good, comprehensive public option – even one as generous as the one Sanders proposes – simultaneously release all employers with 1000 employees or less from the ACA obligation to provide insurance to their employees. In exchange, have those small businesses pay a nominal subsidy amount towards their employees’ public option premiums. This group of America’s smallest businesses would jump at the chance to unburden themselves from their current mandated and onerous health insurance and administrative costs. Most would likely not renew current private insurance contracts once they expire and tell their employees to switch to the public option.

If that option is good enough, premiums cheap enough, and providers find its reimbursements to be fair enough, then word will spread and individuals and families currently on more expensive ACA private plans will also switched to the public option. Larger employers will in turn start requesting to allow their own employees to make the switch. So then we could release all employers with 1001 to 5000 employees from the ACA obligations to provide employee insurance, and their employees can then also make the switch. After they are successfully onboarded into the public option system, release employers with 5001 to 10,000 employees, and so on until all employers of all sizes no longer are obligated to offer private health insurance to their employees. And if the public option is good enough and cheap enough, there will be many employees of even larger employers who are guaranteed employer provided plans who will opt out of their employers’ plans in order switch to the public option on their own just to save out of pocket costs for premiums and deductibles.

At first the public option will have to be taxpayer subsidized to keep premiums low enough and provider reimbursements high enough for viability. But as the pool of people opting for the public option grows, subsidy amounts will decrease. Once the pool of people on the public option is large enough, both Medicare and Medicaid can be folded into it and the public option can become a true prenatal to death health care system for all. Private insurance should not be outlawed – employers and individuals could still offer or purchase supplemental private plans if they want to, but the goal should be for the public option to be comprehensive enough that most people would not need supplemental options.

As for provider and manufacturer reimbursements, they should be set at a rate of fair return for what it actually costs to provide any particular service, treatment, or product. Medicaid and Medicare already do this, but reimbursement rates are currently set too low, especially for Medicaid. But these two sub-pools of people tend to be older and sicker than most, and folding them into the younger and healthier general population public option pool will allow for higher reimbursements while still keeping premiums as low as possible.

The Covid-19 pandemic debacle shows that the USA must achieve universal publicly funded health care. But it must be done in a phased manner that minimizes economic disruption and mitigates employee displacement and industry and public resistance to the switch. Phased release of employers from small to large size from their ACA mandates to provide insurance to employees can help facilitate that process as long as the public option is good enough, cheap enough, and its provider and manufacturer reimbursements high enough to make it a viable, if not preferred option for the vast majority of people.

Mar

2020

Why Shelter in Place?

There are several states that have instituted mandated shelter in place orders due to the Covid-19 pandemic. Minnesota may be among them soon. There are those who object to shelter in place practices either because they don’t think they are necessary, or because they feel that they infringe upon the individual right to freedom of movement. Because of the success of vaccines and other aspects of modern medicine that make pandemics such a rare event, pandemic and quarantine case law is relatively sparse within the United States. But a key part of that success has been mandatory vaccine laws. It is through that lens which we should view the shelter in place issue.

One of the most feared childhood diseases was diphtheria, which was often called the “children’s plague” and the “great strangulator” because it literally killed the tissues inside the throat until the dead tissue built up enough to close off the airway. It also caused tissue cellulitis and necrosis in other areas of the body, sometimes leading to permanent nerve, tissue, organ and brain damage, gangrene, amputation, coma, and death. Diphtheria infected 1 in 5 children each time a wave came through every 3-5 years, and 1 in 7 of those infected children died. That’s a 3% death rate – similar to that of Covid-19, but it’s not at the moment killing children. We now mandate DPT vaccinations (the D stands for diphtheria, P for pertussis – whooping cough, and T for tetanus) because a 3% diphtheria death rate was considered unacceptable. If we had a vaccine for Covid-19 we could mandate that vaccine. But we don’t have one yet – so to protect the population this one time, for a temporary amount of time, we have to mandate social distancing and staying home unless you have an essential need to go out.

It’s more inconvenient than a vaccine shot, but even at a 40% infection rate across the entire US population of 300 million people and a 2% death rate, if we did nothing we would be looking at 2.4 million deaths. But because Italy’s health care system is overwhelmed and they are rationing ventilators and other treatments, their death rate is closer to 5%. Our curve currently looks similar to theirs, which means if we do nothing more than they did at this same point in their trajectory, we are looking at 6 million deaths – a number similar to the Jews of the Holocaust. And half of that 6 million will have died unnecessarily simply because there wasn’t enough critical care (especially ventilators) to go around. Largely because some people don’t want to stay home for a few weeks to do their part to flatten the curve. Shelter in place is temporary – in the absence of widespread testing, we must assume everyone is contagious and make the sacrifice to stay home and practice social distancing as much as we possibly can until we flatten the critical care curve and develop more testing capacity.

There was recent news that the Justice Department was seeking to detain individuals indefinitely without trial during the crisis, but it is currently getting bipartisan pushback and is going nowhere in Congress. And when Italy’s example shows us what happens when people deny the severely infectious nature of this disease and the unusual lethality of it for certain categories of people, panicking about potential civil liberties violations stands in stark contrast to the correspondingly callous disregard for the welfare of the vulnerable. Any civil liberties lawsuits due to citations for willful violation of shelter in place orders will seem like small irritations when the families of people who die sue health care providers who denied their loved ones necessary critical care simply because there was not enough to go around.

Remember that shelter in place is a temporary measure necessary only because we lack a vaccine and adequate testing. Once we have rapid and widespread testing, we can shift back to less stringent social distancing practices, and once we have a vaccine it will become a non-issue. Until the next pandemic – for which we had better be more prepared. The silver lining of this crisis is that it could show us in stark detail the flaws in our current health care system and increase the political and economic will to finally fix it once and for all. But that is another post for another day. In the meantime – please voluntarily do the right thing and shelter in place as much as you possibly can. Be patient and kind, lend a hand when you can safely do so, thank our neighbors who work in essential front-line jobs, and stay safe.

Mar

2020

Calling for a Coronavirus New Deal

As the US Congress & Senate continue to ponder economic stimulus packages, the sticking points between the parties appear to be direct aid to regular folks and small businesses versus bailout payments and loans to large industries hurt by the pandemic fallout. Pandemic aside, we’ve been here before – crashing markets, sharply reduced demand for many goods and services, and sudden rising unemployment – in 1929.

For three years after the crash, President Herbert Hoover refused to provide any significant stimulus, keeping United States currency on the gold standard and rejecting increased federal deficit spending, and calling on private charities to fill the needs of struggling Americans – charities that were soon overwhelmed as the unemployment crisis spread. It was not until Franklin Delano Roosevelt took office in 1933 that the gold standard was abandoned in favor of flexible currency and a massive experimental public jobs program called the New Deal was enacted by Congress. At least we know that after the Covid-19 pandemic subsides, most of those jobs currently lost will come back. FDR in 1933 had no such assurance. We also now have governmental and fiscal measures in place that allow for federal emergency deficit spending to spur and maintain the economy to keep a temporary recession from becoming a full blow depression.

But our current President and Congress remain reluctant to use these measures, and much of what they are willing to do is either insufficient or ill-targeted. Covid-19 has created tremendous pressure to ramp up certain parts of our economy – such as health care services, and the manufacture of health care equipment, groceries, and sanitary supplies – while depressing other parts of the economy such as travel/hospitality, bars & restaurants, and in-person entertainment venues. We need a Coronavirus New Deal jobs program to hire companies and people to fulfill the needs in areas most stressed, while saving unemployment and other direct payments for those least likely to be able to pay any such assistance back. We should provide zero or low interest loans to those who will be fine once the crisis is over and they can get back to work.

For instance, hire current nursing students and medical students to join health care teams and gain valuable experience by working on the front lines. In exchange for putting their educations on hold during the crisis, forgive their student loans and pay for the rest of their educations when they return to school. That would also free up their teachers to join the front lines as well. Hire appropriate companies both small and large who already manufacture similar items and provide funding for them to convert their production to items of shortage, such as ventilators and PPE equipment. After the crisis is over and they have returned to making their usual products, pay them a nominal amount to maintain the ability to convert their manufacturing back to health care products in the future if another pandemic seems eminent. Pay medical research companies to research and pro-actively develop treatments and vaccines for other anticipated pandemic illnesses. Incentivize public benefit over profit. Because if you don’t prioritize and incentivize public interests during normal times, you will be caught woefully behind the curve again and have to mandate it in times of crisis, which is what we are likely facing now.

Hire restaurants to deliver meals to high risk people and families in need who are financially stressed and trips to the grocery store or the food bank are risky or impractical. Hire pharmacies to fill pricey prescriptions for free so that unemployed people don’t have to forego their medications, and courier services to deliver needed medications to at-risk people. Hire counselors to provide free video consults to people who have mental health issues that are exacerbated by the virus and need extra attention and can refer those at high crisis risk to the appropriate local resources. Hire broadband crews to extend high speed internet infrastructure to places currently without it so that remote work and education options become more readily available to all. These are just a few ideas, but the point is that we should pay to hire companies and workers to fill necessary gaps, and save payments and loans for those who simply must ride it out.

In regard to large industries now asking for bailouts – make any taxpayer assistance, both direct payments and loans, dependent on future stock buy-back and executive compensation limits. And then pass comprehensive tax reform that makes large companies pay their fair share of taxes, start enforcing anti-monopoly laws, and enact campaign finance reform to make sure at the very least that there is transparency about exactly who is paying who how much, and for what. When it comes to assistance to the hotel industry, absolutely no payments should be made to Trump properties until a full disclosure of exactly how much taxpayer money has already been spent at those properties due to the Trumps’ own travel. Treasury Secretary Steve Mnuchin has refused to disclose the full amount, estimated in the hundreds of millions of dollars, until after the November election.

Using a New Deal-like jobs program model to fulfill current societal needs while stimulating the economy is not 21^st century rocket science – it’s a method that was improvised during the years 1933-1941, when the CCC, WPA, PWA, & TVA employed millions of Americans to build roads, dams, electric grids, and parks, as well as fight fires, do research, and embark on historical and artistic projects for public benefit. Given what we know now and our progress since then, we could do so much better during this crisis if we applied the same jobs and public need prioritization methods to the Covid-19 health and economic crises. Some of this funding and hiring could be funneled through the states, but we should pay companies and people to make and do the things most currently needed, and subsidize others hurt by the crisis according to their needs both now and projected for a time even after the crisis ends. In short, we need to incentivize the provision of what we need, and subsidize only what has been drastically put on hold according to ability to ride it out until the crisis ends.

medical crisis

My Lady Parts Keep Trying to Kill Me

How to Make a Public Option Work

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