Health And Wellness

Life Beyond A Really Horrible Diagnosis

Photo: Jacob Lund, innadodor, jxfzsy, StockSnap, formatoriginalphoto | Canva, Aaron Burden | Unsplash
Woman battling cancer, her doctors and fighting for her health

Have you ever looked at a photo taken of yourself right before a catastrophic event, an event so horrible it changed your life? And in the photo, you seem happy and calm — completely oblivious to the disaster about to fall.

That’s this photo:

Life Beyond a Really Horrible DiagnosisPhoto: Selfie by author, Dec 2020

I’m a much older woman than I was three years ago. Now a road map encircles my eyes — lines of sadness. But then? It was before cancer. Before the diagnosis.

A month after I was playing with my phone and taking selfies, I was diagnosed with uterine cancer. I had to go through a surgery in which tissue was collected to be tested. The day after the surgery, an ice storm struck. The power was out for nine days. I sat at my home in rural Oregon, looking out the window as the trees I grew up with fell, trees I climbed as a child.

A tremendous cracking noise would occur. Then, branches from my willow crashed to the ground, across the pond. I sat on the couch, staring out of the window and watching my world fall around me. I cried silently, wrapped up in layers of wool and cotton as my lower abdomen cramped.

On day five of the storm, I got in my car and drove to the Oregon coast. We bought a fixer-upper house there in 2020, and rent it out to beach-goers. I’ve never been so glad for that house as I was that week. As I drove, my cell phone rang. A young intern said he was calling with the results from my biopsies.

“How bad is it?” I asked.

“I don’t know,” he said, “You might need surgery, chemo, radiation. I’m not sure.”

“Is there anyone there who can answer questions for me?”

“No, they’re out of the office because of the ice storm.”

I got used to not getting answers. That’s one of the hardest parts of a serious diagnosis. Your questions may be superior, but answers aren’t available. Only God knows (and he’s not in the office right now). Making appointments simply to get questions answered wasn’t fruitful.

It took some time before I got a great medical team, as it was COVID and I needed medical care fast. Consequently, my first team was not a good fit, and I was unhappy with the patronizing, lecherous oncologist who would do my surgery. Other doctors were also demeaning to me, and of course, I was sensitive.

RELATED: I Beat Chemo-Resistant Cancer — 10 Ways To Navigate The Cancer Maze

Every doctor I talked with downplayed my diagnosis.

Doctors reassured me it was one of the "easiest" cancers to treat. My questions were brushed away like gnats.

“Oh, it’s just a hysterectomy, then it’s all out.”

“No one ever dies from this.”

“Let us take care of everything. You’ll be fine. We can’t know that now. Don’t worry about that.”

None of these phrases are helpful. If I ask a question, I want the real answer. 

Some doctors play God. They love science, and they like surgery, but dealing with people? Not so much. My first oncology doctor thought I wasn’t smart enough to understand his answers. He even said that at one point.

I said, “Please, just answer, and I’ll ask clarifying questions if I need to.”

He looked at me with annoyance and left the room, sending in his physician’s assistant.

Time is money.

I felt that doctor’s unsatisfactory answers — most of them untruths or at the very least, lies of omission — in my entire body. Of course, no doctor knows the state of your disease until adequate tests are done.

Still, I didn’t want to hear “everything will be fine.” That’s the hardest part of any rough diagnosis. Everything will be fine? What a load of BS.

According to the American Cancer Society, 66,200 cases of uterine cancer are diagnosed in a year. 13,300 women will die of uterine cancer in a year.

Give me numbers, facts, and data related to my brand of disease. I want to know, learn, plan, consider options. I don’t want to be patted on the head. We never know if things will be fine. Hearing doctors — the people with the most knowledge — offering platitudes is infuriating.

RELATED: It Was A Perfect Day ... Until I Found Out I Had Cancer

Don’t listen to bad advice — like “take a trip to Europe!”

My oncological surgeon reassured me I could travel to Europe and come back two months later for surgery. My internal voice of reason whispered to me, “Push this along. Take care of yourself.”

With urgency, I pushed. Every appointment that was mishandled, I rescheduled to get myself taken care of fast. I was relentless. And as I pushed, I got closer to the truth. I had no time to waste. When I had my exploratory and post-surgical tests back, they showed the extent of my cancer.

I was happy with myself: I didn’t allow the American medical complex to reassure me I could go to Europe and drink cappuccinos in France rather than attend my serious diagnosis. I have to admit, I copped an attitude. Who wouldn’t?

Later, my oncologist said, “I would never have guessed you would need radiation treatments."

“Aren’t you glad I didn’t go to Europe?” I thought.

It would have been a waste of my time to squabble with him.

As it was, that doctor had been so grossly inappropriate with me — conducting an exam without gloves on (I stopped him) — I’d already vowed I’d get my surgery done and never see him again.

No need for “I told you so.”

Save your energy, friends. Choose your battles wisely if you get a diagnosis. Take care of yourself first.

RELATED: I Have Breast Cancer: How One Woman's Facebook Announcement Saved My Life

During the first year of my diagnosis, I asked my health providers this question, “If you could give me any advice, what would it be?”

And their answer was always, “Learn to self-advocate. Keep working at getting what you need.”

   

   

But how odd that when I pushed — didn’t I need a CT scan? Do I need to be checked again? Can you answer questions for me? — even from these very doctors, I encountered resistance.

You’re Sisyphus pushing the boulder up the hill, all the while you’re physically exhausted from illness and stress — not to mention being emotionally worn out from having to beg for pain medications and post-op reports.

We all want to be so nice all the time and not bother busy healthcare professionals.

I got over that fast. If you were to get a diagnosis of cancer, I’d tell you this: you can push hard and get what you need and be friendly about it. But for heaven’s sake, push. No one else will do it for you.

Listen — should you trust your doctors? Only to a degree. You have to, on occasion, let yourself fall backward into the dark abyss of trust — hoping that arms will catch you, take care of you, and save you.

When I was diagnosed with cancer, I leaned heavily on my ability to read and synthesize a mass of information — including researching treatments and surgical options. Even as I was making appointments for diagnostic surgeries, CT scans, and consultations with oncologists, surgeons, and radiological oncologists, I was studying.

On one hand, I did myself a favor. My natural reluctance to put my life in another person’s hands (yes, I struggle on airplanes too) helped me. Some of the data related to my cancer indicated to me, and the doctors caring for me, that I did not — in fact — have time to travel to Europe before dealing with my diagnosis.

On the other hand, I worked myself in my studies to exhaustion. And I was indeed worn out. Every night I was at the NIH (National Institute of Health) or reading at the American Cancer Society. Fortunately, I found a group of wonderful women at the American Cancer Society discussion forum and found great support.

A few days ago, I had a Zoom appointment with my amazing gynecological oncologist. I had to search to find a wonderful doctor, to replace the previous one. She’s restored my faith in medicine, and as we chatted, she mentioned she wouldn’t need to see me again for six months.

The last two weeks I’ve been in and out of the hospital, getting examined and tested. It’s been stressful, of course.

So my doctor was all smiles when she shared that she found no evidence of disease in my body. We call that status ‘NED’ in the cancer world. I asked her if I could push the exam out a bit further, as my summers are busy.

“Yes,” she said, “But of course, if you notice anything, just give me a call.”

For the first time in nearly three years, I felt optimistic about my health.

My friend Teddy was hanging out with me yesterday, and we ate chips and salsa.

“What’s the biggest lesson you’ve learned in the last three years?” he asked. Teddy’s got another friend who didn’t survive his cancer diagnosis, a guy who received his rough diagnosis the same year as mine. Teddy views me as a walking miracle.

I loved his question, as it spurred me to reflect on all the learnings.

“The biggest lesson I’ve learned,” I said, “is you’ve got to try to live joyfully even as you suspect your world may be crashing down around you. You’re fighting to live, but you have to find the joy. And it’s so hard some days. There is physical pain and emotional trouble but you have to find the joy, every chance you can get.”

RELATED: My Hysterectomy Gave Me A Freedom I Never Expected

Debra G. Harman is a memoirist and author. A publisher on Medium, she enjoys working with a team of writers. She's a retired English teacher and a world traveler.

This article was originally published at Medium. Reprinted with permission from the author.