October 2011

We Cannot Manage What We Do Not Measure

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Pay attention to the whimper or be forced to cry uncle. Those are your choices. Those were the choices that faced the nation ten and twenty years ago as naysayers to the economic policies certain to bankrupt our country became evident, but they were ignored or lambasted as fringe. The collective wisdom forged forward with derivatives, with the merging of investment and saving banks, against the whimpers of many, only to cry uncle in 2008 as the catastrophe loomed.

As the ‘other 99%’ seek to realign our political and economic situations, women must lead the changes in the health industry. We must pay attention to the whimpers, to the evidence that something is off, and more importantly, we must take heed before uncle is cried. How do we do that within such a flawed system of industrialized, profit-based medicine? Education, measurement, transparency and responsibility.

Education. The number one factor contributing to health is education. The more educated women (and men) are the better health they experience. Why? Better decision-making. Although there are clear associations between income and health, the association between education and health is stronger.

Education allows one to navigate the morass of medical marketing, cut to the truth, and identify the untruth in advertising. Education permits women the confidence to seek alternate directions in health and not simply take what is prescribed to them as gospel. Quite simply, education permits responsibility in health choices. It doesn’t necessarily lead to taking responsibility or making the right choices; we’ve all seen really smart, highly educated people do really stupid things. Rather, education creates the environment where those choices can be made.
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The Match Game Of Healthcare That Works (Part II)

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“What is the sign of a healthy person? Such a person is happy anywhere. He or she is relaxed everywhere – always at ease and in peace, within and without. Even in hell, such a person will be at ease. A healthy person hates no one, dislikes nothing. Total love, universal love emanates from within. There is no tension anywhere, no stress or friction. These are the signs of real health.”

Swami Satchidananda

Make healthcare truly about you – your personal definition of “health”

From Part I of this Match Game series you have a sense of how a payment system (health insurance) has been setting the playing field determining what constitutes health and well-being for millions of Americans.

To experience healthcare that works for you, we have to change the nature of the game – “reset” our current paradigm.  This reset starts with your personal worldview of health and the relationship, or lack of relationship, between the physical, mental and emotional bodies (see related article).  This worldview will naturally integrate with your definition of health and well-being.

Crafting your personal worldview of health likely resulted in one of two primary worldviews:
• Newtonian – from the namesake of Isaac Newton.  Very simply, in this worldview the world is seen as a mechanical machine.  The physical body is like a machine, divided into parts to be worked on like a machine.   Mind and emotions have little, if any, impact on the physical being.  Healing is rarely considered.  Practitioners treat illness or disease in separate parts of the physical body.
• Quantum – from understanding the world through the lens of quantum physics.  Very simply, at a quantum level everything is interconnected.  Physical, emotional and mental aspects of our being influence each other.  Our outer world and inner world are also connected.  Consciousness matters.  This worldview encompasses healing.  Practitioners treat the person, not the disease.

You may have a blended worldview, or a different lens for different circumstances.  Whatever your result, keep this in mind as you explore the nature of “health.”

What is health?  What is well-being?  And, where does healing fit in?

Health does not mean the same thing to all people.  Reflect on the nature of health described in the opening quote of this article.   It is basically about one’s “being-ness.”  No mention of disease or of physical vitality.

Healthcare physicians, practitioners, all have a different view of what constitutes health, which has been influenced by their field study and experience.  Physicians can only engage with you from their framework of knowledge and understanding.  As a result, for example, you can now see that talking about well-being from a quantum lens with a physician with a Newtonian framework is a mismatch on many levels.  It’s likely both of you will be frustrated.  Having a mismatched partnership is not a good foundation for well-being and healing.

You deserve health and care that fits YOUR unique being, your worldview.   These are very personal decisions.  To find people for your healthcare team requires matching healthcare providers concepts of health to your beliefs and principles.  The starting point is not a list provided by an insurance company.  The starting point is your worldview of well-being and your personal definition of health.

Every medical science, from ancient sciences to current sciences, has a definition or a guiding principle of what “health” means.   Just like worldviews, these generally fall into two categories.

Newtonian health science

The current dictionary definition of health is “freedom from disease.” This is the view followed by most allopathic doctors (M.D.s).  This is the mechanical worldview.  The physical body is a machine made up of parts.   Think about that list of practitioners found in health insurance paperwork – it’s a list that divides the body into parts.   This health science focuses on disease management.  Osteopathic medicine (D.O.s) uses the same tools, treatments and technologies of medicine as M.D.s, so for these very general purposes, they fall in the Newtonian field.

If your worldview is generally Newtonian, you will likely be satisfied with allopathic specialists.  For each symptom you may need to seek a new “mechanic” to address different parts of your body.  You may be the one coordinating care between the various pieces.

Quantum health sciences

While quantum physics is considered a new science, the ancient medical sciences viewed “health” through a quantum lens ‒ systems of health in which everything is connected.  Side effects don’t exist in these older sciences.  There are only “effects” because these sciences have studied well-being and the impact of all their treatments and medicines on the entire mind/body/spirit system for hundreds and thousands of years.  These health sciences focus on healing, eliminating the root causes of suffering, and balance.

Ancient sciences include:

• Ayurveda is the traditional medicine from India, the sister science of yoga.  You may be familiar with this from Deepak Chopra.  Ayurveda is the science of life, with a very precise definition of health. “Health is the state where the Tridosha, digestive fire, body tissues and components, and physiological processes are in perfect unison; and the soul and the sense organs and mind are in a state of total satisfaction and content.”  While this seems to be a complex definition filled with Sanskrit words, the point is for 5,000 years this science has focused on what a healthy mind/body system is, and how to measure, attain and maintain health.
• Traditional Chinese Medicine (TCM) is derived from Ayurveda, and so there are similarities.  Like Ayurveda, it is based on the notion of harmony and balance.  Health is viewed as a means to a good life – when an individual lives in harmony with her community and her physical and spiritual environment.  Many people are familiar with acupuncture, a primary TCM treatment to create overall balance.

Mid-millennium sciences include:

• Homeopathy, which is about 200 years old, believes one has a state of health when you experience freedom and creativity.  It’s interesting to consider how this seemingly simple definition effortlessly integrates physical, emotional, mental and spiritual aspects of well-being.  Disease is considered a breakdown of vital forces and can only be known according to symptoms – so all “symptoms” are of equal importance in treating the whole person.
• Naturopathy evolved from homeopathy.  Naturopathic medical schools include curriculum a range of medical sciences including TMC, homeopathy and herbal medicines.

If your worldview in primarily quantum, you will likely enjoy a positive relationship with doctors practicing these sciences to experience the essence of health you desire.  You may still need (or want) a team approach.  You’ll generally find physicians in the quantum sciences understand something about other quantum sciences, so you can actually achieve complementary care (meaning practitioners, treatments and medicines work well together, not in opposition to each other).

Your definition of health is what equips and empowers you to live your best life

Declaring “I want to be well;” or “I just want to not feel bad and get back to my life;” may seem like simple statements to make when requesting that a medical professional be your partner in well-being.  As we see from the viewpoints above, it’s not so simple.

This is why it’s really important to know at a very deep level what you’re seeking.  Be as clear with yourself as possible.   Research the essence of health, well-being, vitality, healing.  This article just provides some basic guidance to get you started.  Take your time.  And also be willing to evolve or change over time.  What starts as a quest for pain relief in a very allopathic sense of suppressing symptoms in a particular location may evolve to wanting to experience peace and freedom, regardless of physical challenges.

Being clear on what health and well-being mean to you puts you in the driver’s seat of this healthcare match game.   You have now declared your personal “reset” of the vast and complex healthcare system.  You can now confidently:

• Identify practitioners who actually fit your needs.
• Know when you have a mismatch and feel comfortable firing medical professionals who don’t resonate with your needs.
• Communicate effectively with your chosen professionals and develop strong partnerships with them.
• Know when to shift approaches if a particular physician or medicine/treatment isn’t working to support your journey to well-being.
• Spend your time, money and energy wisely, in a way that lets you experience your best life.
• Analyze what payment system (insurance) will work for your health, and make decisions based on what care fits your needs.  For example, if TCM or homeopathic is a fit for you, seek a payment system that pays for the care you use.  Alternatively, be confident that it’s okay to pay for care rather than contributing to an insurance corporation’s profit for “benefits” that don’t fit your needs and therefore you don’t use.  .

Resources you may enjoy to explore this further:
–The Quantum Doctor by Amit Goswami, PhD
–The Biology of Belief by Bruce Lipton
–Other inspiring people who offer a range of views for your exploration:  Deepak Chopra, MD; Larry Dossey, MD; Greg Brayden and Stephen Schwartz

Note:  This is part an ongoing series to equip you with a process, a path, to identify and experience healthcare that works for you.
— Foundation:  The heart of healthcare that works:  know your personal worldview of health:  http://www.hormonesmatter.com/the-heart-of-healthcare-that-works-know-your-personal-worldview-of-health/
— The match Game of healthcare that works series ‒ Part I: Understand the landscape set by insurance companies: http://www.hormonesmatter.com/the-match-game-of-health-care-that-works-part-1/
— The match Game of healthcare that works series ‒ Part II:  (current article)

Deb is co-owner of Experience In Motion, which equips organizations with tools to curate meaningful experiences for customers and employees.  Deb’s personal journey from decay to wellbeing inspired an emphasis in improving healthcare experiences for patients and practitioners by focusing on experiences that heal, and self-caring as a way of organizational being.  www.experienceinmotion.net.

 

 

 

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Conflict of Interest? No Problem

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One hopes that when defining the clinical practice guidelines for a given disease and the prescribing practices for a particular drug,  the physicians on the panel who determine these things would have no vested interest in suggesting one medication or another. To the contrary, a recent study on diabetes and cholesterol prescribing recommendations found that this is most certainly not the case. Fully 52% of the panel members and 50% of the panel chairs convened to determine diabetes and cholesterol care, had a financial conflict of interest with drug companies. Though some disclosed their ties to drug companies, many others did not. Moreover, many of these panels have no disclosure rules. Beyond simple disclosure, a good first step, I think we all agree that those in charge of deciding the course of our care, should have no financial ties to the industry.

Related links:

Conflicts of Interest: Study

Medical Panels Are Rife With Financial Conflicts

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Unite Walking Uteri: Repair the Economic Moral Fabric, One Woman at a Time

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For a website devoted to women’s hormone health research, I seem to write a lot about the current economic and political situation. That may seem odd on the surface, but a deeper dive reveals an inextricable connection. The recession has forced American values into re-alignment and like or not, health is at the center. And women’s health, because we bear children, is at the nexus.

As a woman, who has born children, I take offense to the fact that in political, economic and healthcare debates, women have become no more than walking uteri. From both the political Left and Right, our choices to bear or not bear children seem to represent the sum total of the interest in our health. Sometimes our breast health is considered and on a rare occasion other aspects of our physiology enter into public discourse and even research, but mostly it is our childbearing that garners the attention.

Even so, the pretense that the debates currently dominating the public arena involve anything closely related to women or health is false. These are debates about money and power—getting it and keeping it– and we are simply the tokens of that economy. But we don’t have to be, because as walking uteri, they have failed to recognize one important point- we can walk the other direction.

Although we are only 50% of the population, we consume 80% of the medical care and we control the medical decision-making in most families – that is our power. The makers of HRT know this all too well.  They saw their profits drop by as much 70% when the unfounded marketing claims that HRT cured everything came to light.  Millions of women transferred their consumer purchasing power to the bio-identical hormone, nutraceutical and other health-related industries. As hospitals began dictating C-sections, a whole movement of home-birth evolved; home-birth in the 21st century- who could have predicted that?  As more and more toxins are found in our foods and especially baby products, companies marketing healthy, organic products are born. Our uteri are walking right out the door and creating entire industries that place health and well-being center stage.

So, while politicians covet big money from the corporations that obliterated the economy and decimated women’s health; while protestors protest the profligate practices of Wall Street (finally) and pundits decide which side of the ratings fence they are on, women are quietly re-building the economy. Inc.com indicates that women lead 40% of all business in the US (2010), but received less than 8% of investment capital. Perhaps as a result of the lower capital, we are better at bootstrapping, have higher growth, better returns and our businesses succeed more frequently than companies led by men. Our companies are less risky; none of the high-flying financial shenanigans that got us into this mess in the first place. Perhaps because of the inequities in healthcare and research perpetrated on women by men interested only in the functionality of our collective uteri, we’re building companies that address women’s health-beyond the uterus.  Companies like Lucine, and many, many others.

Are the attempts to de-fund women’s health important, even though they pertain to the most narrow definition of health? Yes. They serve as a reminder that we have more power than we think. We are the consumer market that matters. We can take our consumer buying power and our voting power elsewhere. We can create the industries that matter to us. In doing so, we repair what David Brooks called the ‘moral fabric of our economy.’

Hormone health research and diagnostics matter to me and my colleagues at Lucine. What matters to you?

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Underinsured, Underdiagnosed and Anonymous: Endometriosis

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Endometriosis

I am continuing to write this anonymously because I continue to fear the social repercussions and potential backlash of publicly revealing my real name in association with my endometriosis and other health issues. I am uninsured and told by many, uninsurable.

We left off from Part 1 of my story with a tentative diagnosis of endometriosis, a ruptured ovarian cyst, and ever-increasing doses of oral contraceptives. At that point in my life, I was scared, in pain and worried that I and the doctors should be doing more.

But, as it turned out, there was not much more that I could do. The doctors said that even if it wasn’t endometriosis, the pill would probably still be the least invasive and least risky treatment option available to me. They told me this without any intention of scheduling further abdominal inspections, pelvic imaging, endometrial biopsies, or blood draws for biochemical markers, despite my pleas for each. Then again, they had confirmed my endo’ diagnosis without a laparoscope, or CA-125 antigen test, as it was. So, what else should I really have expected from them now? Life on oral contraceptives continued because, apparently, my only other choice was living without a uterus (and risking paralysis due to prior cervical vertebrae injury) at only twenty-five years of age.

I had never had long, frequent, heavy, or uncomfortable periods, much less menstrual cramps, as a young teenager. But, as a woman on COCPs in her mid-twenties, I was experiencing altogether nonexistent cycles, regular breast discharge, ceaseless bloating, and unrelenting gastrointestinal pain and pressure (on top of chronic neck and back pain from the past car accident). One silver lining to my proverbial cloud was that I had finally regained most of the neck control and movement previously lost in the collision. Another consolation to this difficult situation was that I had also saved up enough money, working through physical therapy, to return to school. And, maybe best of all, I had found (without trying) a steady, supportive, and understanding boyfriend, who was not only my match in every way, but who always stayed by my side, through the ups and downs alike. Little did we know the coming financial and health woes to befall us, yet again, over the next few years.

Fast forward about three more years into the future—I had transferred to the university as a junior during the Fall term. My boyfriend and I had been together, going on strong, for four years. And, I had been working part-time at a job that I loved for nearly two years. The future again seemed bright. Healthcare access, however, remained bleak.

The COBRA benefits from my old employer had long expired, not that I could have afforded them at $600 per month anyways. I didn’t qualify for health insurance at my new workplace because I wasn’t full-time there, owing to a loaded class schedule on-campus. And, the only medical coverage that I had been able to afford since leaving the other company was a short-lived, hybrid POS-HMO plan, which I ended up having to cancel early as nobody in my area would accept it (there went another few hundred dollars, I couldn’t afford to lose, down the drain). We had been working around the system, paying out-of-pocket for generic prescriptions, and general lab procedures, at local understaffed health clinics, since no one else seemed willing to work with us. This got us by (it had to) until an unexpected slip-and-fall accident that December rendered a hidden colon tumor palpable in my lower body (something we wouldn’t learn for another four months or so).

The ER wouldn’t treat me, and only served in referring me to a GI/Endoscopy specialist, who in turn refused to see me because I didn’t have insurance. A major medical carrier subsequently denied me coverage as uninsurable due to pre-existing conditions (namely my C2 fracture from nine years earlier, and my endometriosis diagnosis from four years prior), essentially blacklisting me among all other healthcare providers. I couldn’t even qualify for government assistance of any kind. I had come close to dying in just a few short months without knowing what was wrong with me, and we were running out of time and options fast. That’s when my boyfriend popped the question, to get me on his insurance, and to save my life…

To Be Continued.

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Underinsured, Underdiagnosed, and Anonymous: Endometriosis Part 3

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I am continuing to write this anonymously because I continue to fear the social repercussions and potential backlash of publicly revealing my real name in association with my endometriosis and other health conditions. I am uninsured and told by many, uninsurable.

Marriage and Endometriosis

We eloped without much fanfare at the Office of Civil Marriages in the spring, and over-nighted a certified copy of our marriage certificate to my newly-wed husband’s H.R. Department ASAP. A month later, we received our new medical cards, and my husband’s primary physician gave me referrals to a network-approved gynecology specialist and internist. The gynecologist ordered another abdominal ultrasound, blood draw, urine sample, and Pap smear to check for viral, bacterial, and/or urinary tract infections, as well as to rule out other possible conditions like kidney stones or gallstones. The internal medicine specialist referred me to a gastroenterology-endoscopy doctor to get my spleen, colon, appendix, and liver more thoroughly checked out. I also remember asking both of them about going off the pill back then, but each one had advised me to stay on it, at least, until my initial lab results were in. It was definitely no honeymoon as the poking and prodding officially commenced once more.

The Pain of Endometriosis

My upper-left abdomen was tender to the touch below my ribcage, and my lower-left abdominal pain had grown much more intense, now radiating from my stomach to my backside in sharp, rapid, debilitating jabs. It felt like my organs had dropped, and my insides were trying to force their way out of me. It stung to urinate, hurt to have a bowel movement, my urine was very cloudy, and there was a lot of (too much) blood in my stool. The burning sensation in my bladder and the rigidness of my muscles were limiting my mobility, aggravated lower quadrant soreness and spasms were impairing my sleep, and a new found fear of vomiting or otherwise using the restroom was inhibiting my appetite. I was faint, weary, and weak from excess blood loss, malnutrition, insomnia, distress, and delayed treatment. And, I was just about to begin another taxing hodgepodge of could-be prognoses throughout a long (almost too long) diagnostic process of elimination.

The gyno’ reported that I had crystals but no stones in my urine, and prescribed me antibiotics for a bladder infection (one problem down, many more to go). The ultrasound image still showed a small mass and fibrous tissue, but they did not appear to be ovarian or polycystic in nature. Likewise, although my iron levels were down, my lab panel showed no sign of kidney or gallbladder abnormality or dysfunction. And, there did not seem to be any cervical or vaginal lesions, viral or bacterial. They said that a small uterus might explain my short, light, and irregular periods during adolescence (previously a non-issue to me), as well as an increased susceptibility to endometriosis, and a decreased success rate for surgical assessment or treatment thereof. So, laparoscopy was ruled out as a viable diagnostic test or care option for endo’ altogether, rendering my prior endometrial diagnosis unconfirmed (but still, ironically considered a pre-existing condition), and my current status was again in question. It was, however, recommended that I ask the gastroenterologist/endoscopy specialist about the possibility of any additional bowel, thyroid, and/or pancreatic involvement, though.

More Doctors

By the first time that I saw the GI/endoscopy doctor who the internist had referred me to, a few weeks later, my bladder infection had cleared up and my urine was back to normal. But, I was now passing mucus, tissue, and blood clumps, without bowel movements, in addition to suffering from constant rectal bleeding (without any bowel activity). I could now also feel a throbbing lump bulging against my insides from somewhere near my perineal area, making it extremely difficult for me to sit down (when it had already become problematic for me to lay down on my stomach or even to lie on my back). The gastro-endoscopy physician told me that I had injured my spleen in the slip-and-fall accident, and that it would probably take another month or so for it to fully heal on its own, thus explaining the tenderness that I had felt under my ribs. The doctor also suspected that I had colitis (inflammation of the large intestines) with internal prolapsed piles, and wrote me a prescription for sulfa antibiotics, hydrocodone painkillers, and corticosteroids, for at-home treatment. The second course of antibiotics made me feel a little bit better, and the painkillers helped me to sleep some, but the corticosteroids made the small lump inside me swell into a larger bump ready to burst through my very skin. No, I didn’t have piles or colitis, either.

Five weeks and a bunch of different tests later, I also didn’t have appendicitis, pancreatitis, and hepatitis, cirrhosis of the liver, thyroid disease, or diabetes, among other things. I still didn’t have gallstones or kidney stones (they double-checked), but I was still on oral contraceptives (and hating it) as continued to be advised for no given reason. I had been married for four months; the summer was half-over and we were spending hundreds of dollars per month in medical premium deductions, on top of hundreds more in mounting insurance co-pays, and other related expenses to no avail (needless to say, our savings and hopes were dwindling quickly). They didn’t want to do a colonoscopy on me because I was way under the age of fifty, had no recorded family history of colon polyps, colonic ulcers, diverticulosis, or diverticulitis, and nobody really expected to find anything anyways. But, they too had run out of other tests to perform, even though I wasn’t getting any better under their watch. A preliminary colonoscopy and biopsy, a repeat procedure, and multiple follow-up biopsies, however, ‘finally’ and shockingly confirmed that I had an adenocarcinoma tumor in my colon. I had colon cancer? …I had colon cancer…

To Be Continued

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Underinsured, Underdiagnosed, and Anonymous: Endometriosis and Cancer Part 4

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I just learned, after years of endometriosis pain and misdiagnoses, I had cancer.

My husband and I were suspended in a state of utter shock and disbelief, as the GI/endoscopy center rushed us referrals for a variety of different radiology and imaging services. We were feeling overwhelmed and under pressure, but had precious little time to openly react or otherwise respond to my diagnosis. Right now, we had to have my cancer staged and graded sooner than seemed humanly possible. I drank barium contrast and fasted for digestive system x-rays, I went on a clear liquid diet and temporarily stopped my meds for full-body PET scans, I repeated barium prep for CT scans, and fasted again for MRIs. My diet consisted mostly of chalky colon cleansers, plain water, 7-Up, chicken broth, boiled ham, and scrambled eggs. As trifling as it sounds, this made me crave a juicy steak and pulpy fruit juice like nothing else. By the end of the month, I was allowed to give into my cravings for a night—a bittersweet reward at best—while we waited in high anxiety for my pending results to come in.

My Cancer Diagnosis

I had a greying, high-grade, stage II-B neoplasm, with partial bowel obstruction, which had enlarged to about three centimeters in size. The tumor had grown through the wall of my colon, but had not yet metastasized to my lymph nodes, bone marrow, or other organs. I did not yet have necrosis or jaundice either, but compromised liver function and tissue death were both very real concerns for me now. The fast-growing lump had apparently started out as a benign polyp, but had turned malignant having gone undiagnosed and untreated.

I was young, I’d never smoked, I didn’t drink or do drugs, and I wasn’t promiscuous, so nobody could easily explain how or why this was happening to me (as if those were the only reasons that something like this could happen to anyone). Likewise, no one could tell me how the polyp could have been missed, or why I was denied the medical attention that I had actively and continuously sought– for years, which could have prevented my case of cancer altogether. I did finally and inexplicably get to stay off birth control pills this time though—and, coincidentally, my tumor never increased in size after I discontinued the use of oral contraceptives, hmmm…

Navigating Cancer without Insurance

The diagnostics and staging completed, we were then referred to a local oncologist, radiologist, surgeon, and hematologist for consultation, healthcare review, and treatment selection. The oncology specialist wanted to do an immediate total colectomy with long-term, post-surgery, high-dose chemotherapy port, and a permanent colostomy bag. The radiation specialist wanted to start with daily, low-dose, external beam radiation, personalized intensity modulation radiation therapy, and low-dose oral chemo, for six months. The surgical oncologist did not recommend surgery for temporary or permanent bowel resection or any surgical procedures for chemo pump placement—in fact, they suggested radiation with or without chemo. The hematology lab would be doing my tumor marker and blood panels one to three times per week as needed throughout my treatment, whichever option we chose. And, me–I wanted biological treatment, but it wasn’t covered by insurance, so I reluctantly had to settle for beam radiation and oral chemo in lieu of extreme abdominal resection surgery, since I wasn’t rich.

Next, everybody gave us the obligatory best-case/worst-case scenarios, after which I was scheduled for my radiation tattoos, body molds, and chemo instruction in preparation for my first treatments and corresponding blood monitoring tests. Having turned down radical surgery and the chemo port (per the surgeon specialist’s advice), my oncologist was suddenly and inconveniently unavailable to see me now. So, my radiologist had to reach the oncology nurse to confirm arrangements for my ongoing blood work and prescription refills, since her boss was neglecting to do so on a regular basis. The oncology nurse also secretly stepped in and reduced my chemo pill dosage by half without telling the oncologist (she told me not to tell him about it either), because as she said—off the record—he had prescribed me a dangerously high amount, comparable to that given to a terminal prostate cancer patient. I had to quit the job I loved, my husband had to stay at the one he hated, and I had to take incompletes and signup for medical leave at school…where only last year I had been hopeful, I was once again despondent.

Just one month into chemo-radiation, I quit menstruating, and was no longer able to be intimate with my husband (my still fairly new husband) for the duration of my treatment (my fairly long treatment). I lost all of my lower body hair from the bellybutton down, and went through major skin tone and skin color changes, along with startling food taste changes, and contemptible chemo fog. It had become a challenge for me just to get off the couch to catch a ride to the doctor’s, so much so that my time was predominantly spent asleep, in treatment, or in diagnostics, by this point.

And, when it didn’t feel like things could get any worse, my husband’s company announced their looming bankruptcy and liquidation. That’s when the rejection letters for my previously pre-approved (and thusly documented) life-saving medical procedures began to arrive from the insurance company. It’s also when we found out that because my husband’s employer was liquidating, not restructuring, that we would only qualify for one month, not one year, of COBRA benefits, and that the one month of COBRA coverage we were eligible for would cost us $1,300 even in light of the hundreds of thousands of dollars (literally $300,000+ in just one month of the bankruptcy/liquidation notice) in bills which had abruptly begun to flood our mailbox.

To Be Continued.

Read earlier parts of the story. Part1, Part2, Part3.

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Underinsured, Underdiagnosed, and Anonymous: Endometrial Cancer, Part 5

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Endometrial Cancer

Since the last post, I had begun chemo to treat my cancer.

My radiologist became my primary doctor, as the oncologist remained largely unavailable to me, after hearing the news that my health insurance would lapse within the coming months. The oncologist increased my dosage of radiation, and rescheduled my GI, endoscopy, and radiology follow-up exams to earlier dates. The radiation office not only waived a significant portion of their own service fees for me due to the situation, but also helped us to handle a big part of the lengthy medical dispute we were facing with our insurance company. They eradicated most of the tumor, but could not remove my residual scar tissue, before our COBRA expired. Even with all that they had done for us up until then, there were still strict systematic limits as to what they were permitted to do for us after that time. Not only was I without insurance yet again (my husband was too), but I was also now without the support system that had been my radiologist and their crew—something that was much much harder to overcome than I had expected it to be.

Remission from Endometrial Cancer

I was in remission, but back to square one as far as access to medical coverage went. I was in remission, but I had undergone medically-induced premature ovarian failure, and was deemed post-menopausal before I would even reach my thirties. I was in remission, but couldn’t take hormone replacement therapy or herbal alternatives, because I was already at increased risk for recurring and/or second cancers. I was in remission, but had semi-permanent radiation scars and temporary post-chemotherapy cognitive impairment. I was in remission, but I still wasn’t well enough to return to work, go to school full-time, or to take a belated and long overdue honeymoon yet. I was in remission, but I was depressed, and didn’t know how to move forward without the regular group of doctors and nurses who had been there for me emotionally only a week before.

Why was my life saved (and through such extreme measures), only to be put right back at risk, through the ever-incipient denial of insurance, medical assistance, and access to healthcare? What was the point of it all?? It felt like maybe I shouldn’t have been striving so hard to live, but instead perhaps that I should simply have accepted the inevitability of my own death (something I am now faced with every day that I do wake up in the morning, anyways). My husband had only been able to find part-time jobs, since his old workplace had closed. So, we knew that we would have to move out-of-state to get the help that we needed. We just hadn’t anticipated that it would be even harder to get coverage, aid, or access, once we left. And, we still don’t know how much harder it will get, as we continue to race border-state budget cuts and residency requirements, just trying to keep me alive. Sometimes, it’s hard not to doubt that we’ll make it in time at all.

I have always worked hard, and I’ve always tried to give back to the community. I was glad to pay my dues, and happy to put in my time. So, I have an exceptionally hard time understanding how so many have come to turn their backs on me as I ask them to help keep me from dying, if not from hurting, particularly when that’s supposed to be their job. How come I’m not worth your time and attention? Why don’t I deserve to live? What’s so wrong with me, that you can’t even tell me what’s wrong with me?

I wish that I could leave you with a happier ending, but this never-ending vicious cycle has not left us witch much optimism, hope, or spare change, ourselves. Aside from knowing that my tumor is back, we don’t know just how bad it is. What we are gravely aware of is that I am out of the safety net and into the danger zone for lymph and bone involvement plus metastatic cancer growth. It’s proven impossible to get a standard colonoscopy and biopsy at my age (twenty-plus years too young) without a doctor’s order, and impossible to get a doctor’s order without insurance or assistance (but, you’ve already heard that story before)…all this, even in spite of my personal history of colon cancer. And, it will be equally impossible to get any traditional treatment if/when the cancer spreads to my liver or lungs, too. But, at least nobody will be talking about colostomy bags then, anymore. When we do find the rare body scanning clinic that will take cash patients on self-referral, they all also inevitable deny me the less-invasive virtual colonoscopy because I’m “still in my childbearing years” even though I’m medically documented as being POF, and haven’t had a period in over six years now. You’d think it would be a non-issue, but for some reason it isn’t. Maybe someone out there can understand our fear and despair, but a lot of other people just don’t seem to care.

Read earlier parts of the story. Part1, Part2, Part3, and Part4 .

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