Category: Dying

The Conundrum of Cancer: or, sitting still in the dark

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Years ago, after I had my first bout of depression, I wondered if that is what the Greeks meant by the hero’s journey: going into the darkness (labyrinths, hell), fighting monsters and demons, then coming back to the light, victorious. As I contemplate depression and cancer, I’m beginning to see the similarities. The bleakness. The inability to plan for the future. The obsessing. The lack of control. Feeling lost and disconnected. Knowing that I need to do something, but not knowing what it is. Traveling to meet Hades.

However, this journey is different from the one Greek men and demigods experienced. I may be floating down the Acheron into the Underworld, but I’m not pushing away or pulling into the boat the swirling figures in the water. Rather, I am quietly observing my demons with curiosity: cancer, familial relationships, failed friendships, heartbreak, depression, regrets, mistakes, sorrows, the past, the future. I am sitting still, lest I fall into the river and drown amongst the monsters of my creation. The boat keeps propelling me further into the unknown, and I’m not trying to turn it around or stop it—that would be futile and folly. This is the voyage I’m on, even though I didn’t opt to step off the dock.

The last time I saw my medical oncologist, he made a comment about me going back to my life after radiation therapy was finished. I didn’t tell him this, but there is no returning to my former way of being. My body and outlook have changed, and my priorities have shifted. The plans I made for this year have dissipated—at least, most of them. The two that remain, ironically, are my health and writing. And, ironically, both force me to sit still. Radiation leaves me fatigued, and it’s difficult to write while in motion. So, I wonder what lessons are to be learned, and ponder how to shape my life—do I dry dock and disassemble, or do I stay on the boat and flow with the currents?

This conundrum currently has no resolution. Charon is rowing, while I maintain balance. We still haven’t reached the light.

 

The Conundrum of Cancer: The Prologue

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I wasn’t going to write about how this all started—it seemed irrelevant. Then I was asked about my symptoms by a friend because she was experiencing symptoms similar to mine. However, this prologue is about more than just the symptoms—it’s the entire experience with the medical field leading up to diagnosis. I don’t know if this will help any other women or not, but here is what I know to be true about my circumstances. If you don’t want to read all the way through, I’ll bullet point my specific symptoms and thoughts at the end.

In 2013, my heavy periods became increasingly heavier. Given my age (45), this seemed appropriate. My uterus was doing its job and preparing my body for menopause. No one thought otherwise. Sure, I had some abnormal paps, caused by HPV, but not the HPV that causes cervical cancer.

In 2015, my gynecologist at one facility wanted to do a colposcopy because of some abnormal cells were found. She was quick to say in her email that the cells were not cancer. She didn’t even suggest they were pre-cancerous. I scheduled, rescheduled around my menses, rescheduled around a medical emergency she had, tried to schedule again, but by then she left the organization. I gave up and knew I was changing medical insurance anyway, so I didn’t worry about it.

In late 2016, I started becoming increasingly fatigued, to the point that by February 2017, I was scheduling a doctor’s appointment. Unfortunately, I couldn’t be seen for an annual checkup until April. So, in mid-February, I stopped by the doctor’s office to drop off my new patient paperwork and to see if I could be seen sooner—I was barely able to function. My primary care physician (PCP) wasn’t available, so I opted to see the nurse practitioner a few days later. When I described my symptoms, she thought it was likely my thyroid, and ordered a full panel. There were no concerns about my periods. A day later and two hours after I went to the lab for my blood work, I was called by a now slightly panicked nurse practitioner, who told me,“there really was something wrong with me,” and that my hematocrit and hemoglobin were too low. She sent me to the emergency room. From there, my blood was tested again, and I had a stool sample tested, as well as an abdominal sonogram and vaginal ultrasound. The only thing found was a thick lining of the uterus. I moved forward with my two-unit blood transfusion and it was recommended to have my endometrial lining biopsied. My pap in April came back negative, but my PCP wanted me to have a colposcopy, along with the other biopsy. I was referred to a gynecologist for both of the aforementioned procedures. However, this doctor’s main concern was my anemia and bleeding, so she recommended an endometrial ablation to stop or slow down my periods. She was less concerned with the biopsies.

From there, it took months to schedule the ablation. The surgery scheduler would call with one date, which inevitably didn’t work with my schedule or my cycle. I was told I’d be called back within three or four days with a new date, then I’d never get a call. So, I called a week or two later. And on and on. My PCP suggested I ask about the anesthesia and whether or not the procedure needed to be scheduled around my cycle. The periods weren’t an issue, but the anesthesia was and I was trying to schedule around work. And then I got tired of the phone tag and lack of responsiveness. I gave up for a while. And then the fires happened in October. By then, I was over having heavy periods and always needing to wear a pad. And then I lost two of my staff in early December.

Finally, on 27 February 2018, I went in for the ablation, and two days later I was diagnosed with cancer.

Here were my symptoms, prior to diagnosis:

  • Heavy periods for at least one to two days. Sometimes changing thick pads a couple times an hour, sometimes a little less often. The entire period would last around 8 days.
  • Cycles where I would go through about 20+ pads over the course of two to three days.
  • Spotting between periods over the last year or so.
  • Sloughed pieces of tissue that were not endometrial lining.
  • A few skipped periods.
  • A watery-bloody discharge between periods, starting November 2017 or so (this is a definite symptom of uterine cancer).
  • Anemia (to the point of needing a blood transfusion)
  • Over-production of estrogen (although I didn’t know this was happening or was a symptom)

Not one medical professional, over the course of five years, suggested I have my hormone levels checked or told me that abnormally heavy periods are caused by excess estrogen, and excess estrogen causes cancer. Now I know.

If you are exhibiting these symptoms as a perimenopausal woman, and you are ignored or are getting blow-back from your doctor, push for hormone tests and biopsies anyway. Bleeding after the onset of menopause is abnormal, so cancer is usually caught sooner. If your doctor isn’t concerned, make sure she/he is.

The reason I shared the entire story was to help other women understand how long it took to get my needs met, and that my symptoms, albeit not entirely ignored, didn’t concern enough doctors. If I had pushed harder and been seen sooner, I may have been in the pre-cancerous stage, or early cancer stage. Instead, I have had a radical hysterectomy, and will most likely be undergoing both chemotherapy and radiation, with treatment starting soon. My chance of recurrence without treatment is 25%. If any of this helps one woman under the age of 55 (or over, if need be) get diagnosed early, then all of this will have been worth it.

The Conundrum of Cancer; or, initial thoughts on a new lifestyle

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I’m still sorting out the details of my new lifestyle, which started on March 1, 2018. Prior to that date, I didn’t have cancer. At least, I didn’t know about it and didn’t consider it a possibility.

Specifically, I have endometrial/uterine cancer. Even more specifically, I have endometrial adenocarcinoma. Endometrial and uterine seem to be interchangeable. They sort of are, I guess.

From March 1 through April 9, I went from diagnosis, to consult, to hormone therapy, to CT scans, to surgery (radical hysterectomy and lymph node dissection). What started out as a two centimeter, FIGO grade 2-3 tumor, turned into a two centimeter, FIGO grade 2 tumor after surgery. The final pathology I received on May 3, 2018, shows cancer cells in my blood vessels; and a tumor that was five-plus centimeters and FIGO grade 3 (most aggressive). And yet, my cancer is Stage IA (almost as good as it gets—one location, no spread). The irony isn’t lost on me.

I need radiation to reduce the chance of recurrence (see above for the three high-risk factors) from 12-15% to 6%. The research I’ve done on cisplatin (chemotherapy treatment) suggests that it is best taken off the table and left on the fence where my gynecologic oncologist put it. I haven’t gotten a third and fourth opinion from the radiation and medical oncologists yet. Based on my research of endometrial cancer, the prognosis is poor with recurrence.

In starting my new lifestyle, I’ve also learned over the last two months:

The healthcare system is indifferent. It cares about patients when they are in front of a doctor. Otherwise, people fall through the cracks like sawdust on a shed floor. That’s not to say all doctors are detached. Some are caring, supportive and available, like my primary care physician. However, if I hadn’t advocated for myself as strongly as I did, I’d still be waiting for surgery, and closer to dying from cancer.

I do not refer to cancer by anything other than its name. It’s not the “Big C,” and I’m not at war, fighting or otherwise battling this disease. It doesn’t suck and I don’t hate it. My body made this when cells decided to live instead of die. As one with a rebellious nature, I have a begrudging admiration for these cells, while being displeased with their behavior. I will eradicate them if I can.

I measure life in terms of quality, not quantity. This became clear when I filled out and signed my advanced directive. It was validated again when I researched cisplatin (kidney damage and hearing loss are two of the potential lifetime side-effects). I’d rather live 10-20 fantastic years than 20-40 years where I feel awful all of the time. This is non-negotiable.

Most people have a hard time talking about death and disease, and are unable to be “authentic” when these subjects come into conversation. People also feel like they need to say something, anything. I find all of this sad and distressing.

One day, I am going to die. It may be from cancer, it may be from something completely unrelated. I continue to not know how or when my life will end. I spent a lot of time making preparations for my death prior to surgery. I will continue to make more plans until I am done.

I need to come to terms with having cancer. Once it shows up in the body, it doesn’t leave. There is cancer-symptomatic and cancer-asymptomatic. Cancer-free will never exist for me. Once I create an alliance with this fact, I think I can move forward with living. At first, I thought I needed to make peace with dying, but that seems to bother me less than being diseased.

Life is challenging, painful and ugly; it is also amazing, precious and beautiful. I am invested in living, and living well. Over the next few months, I will be reprioritizing my life and treating it as if it could end at any moment.

I am still learning and adjusting to my new life circumstances. The surrealness has started to disappear and is slowly being replaced by reality. I don’t know where this journey is taking me beyond the next few months, although, that is always true, regardless of the situation. And as I’ve learned, radical change is only a doctor’s visit away.

I don’t share this information to make anyone sad, angry, sympathetic, empathetic, whatever. This, as most of my writing, is my catharsis. If it helps or interests someone else, so much the better.