This story was originally posted as a five part series on our site in 2011-2012 when the healthcare debate began heating up. As the debates over healthcare in general and women’s healthcare in particular have resurfaced once again, it is important to remember that these decisions have human consequences.
The treatment this woman received was sub-par by any measure, but not uncommon across women’s healthcare even when insurance is available. The lack of diagnostic acuity is striking and the treatments offered may very well have induced the cancer she later developed and to which she ultimately succumbed. Her story is emblematic of all that is wrong with our current economic model of medical care and all that goes wrong when we ignore women’s healthcare.
Rest in peace, my friend. You are missed.
The Beginning of a Long Battle
It all started in my late teens. Recent high school graduates, my then-boyfriend and I were on our way from Orange County to L.A., when a driver entering the freeway rear-ended us as they were coming off the 91 onramp. A suddenly totaled car and severe case of whiplash quickly changed our prior plans, sending us instead to the local E.R. for immediate medical attention. A series of rush diagnostic tests later, my CT and MRI scans confirmed that I had suffered a C2 cervical neck-spine fracture with lumbar nerve involvement in the collision. I was fortunate to be alive, and luckier still to have survived without brain damage or paralysis, but I would not be simply walking away from this, either. Quite the reverse, it was actually just the beginning of a long battle to come.
Injuries sustained from the crash had triggered a myriad of chronic side effects and secondary conditions, including (but hardly limited to) chronic pelvic pressure, lower back pain, hip misalignment, fatigue, dizziness, and at that time, as-yet “undiagnosed hormonal issues.” I was 19, hurting, scared, and tens of thousands of dollars in debt overnight, due to my emergency room stay, all, through no cause of my own. Having to drop out of college to go through rehabilitative therapy and further hormone assessments over the next couple of years only seemed like more of an end-all to my young future back then. Launched head-first into a cold, cruel world of consistently inconclusive diagnoses and expensive, limited healthcare options, I truly felt the social stigma of being sick and uninsured. Splitting up with my high-school sweetheart a mere few years later, in no small part, because he wanted to have “children of his own”, I also really grew to feel the societal shame of being female and infertile, as well. So, I found myself dually disheartened as my abdominal pain and pressure continued to worsen, going on undiagnosed and untreated clear into my early twenties, despite the ever-growing list of costly blood labs, urinalyses, ultrasounds, and other screening tests, that my doctors had already exhausted.
Even with an employer-provided PPO, it would still be almost five years before any specialist would finally suggest what might be wrong with me (maybe endometriosis, maybe not), or explain what could have caused my prospective condition (maybe trauma from the earlier wreck, maybe not), much less tell me about potential treatments (oral contraceptives, laparoscopy, hysterectomy, or just plain living with the pain and hoping for the best). I was again referred to yet another gynecologist for yet another pelvic sonogram when, at long last, the ultrasound image revealed the suspected endometrial mass, once and for all (or, so we thought). The new gynecologist subsequently diagnosed me with endometriosis and put me on low-dose combo estrogen-progesterone birth control pills, taken seasonally, as an alternative to surgery and nerve damage risks. The pill helped relieve some of my symptoms for a while, but it was far from being a permanent cure to my ailment, and ultimately became much more of a curse than a relief to me. Additional complications from an unexpected, ruptured ovarian cyst, followed by an increasingly negative response to the synthetic hormones, also lead to questions about my original diagnosis and method of treatment. Did I have endometriosis at all…was it something else entirely…what do I do now?
Part 2: 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 combine oral contraceptives 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.
Uninsured and Uninsurable
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 did not 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 is when my boyfriend popped the question, to get me on his insurance, and to save my life.
Part 3: Marriage, Insurance, 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 rib cage, 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 gynecologist 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 poly cystic 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.
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.
Part 4: Colon 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 during this time, which trifling as it sounds 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.
I had a graying, 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 relatively 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, 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…
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 worst, my husband’s company announced their looming bankruptcy and liquidation. That’s when the rejection letters for my previously pre-approved (and thus 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…
Part 5: Endometrial Cancer and No Insurance
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 but No Insurance Once Again
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.
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