This was originally posted in 2022 on my former blog. I've edited it from the raw-take original in the light of experience.
There’s what you plan and then there is what life throws at you. My wife, Gaye and I had plans to remodel our house as COVID-19 numbers dropped. Gaye had talked about returning to school for another degree. We were waiting for dates to make a trip to NYC for a Basquiat exhibit compiled from his family’s collection. I had plans to publish my book.
Then, during a routine mammogram, a technician detected a lump. Gaye has been a registered nurse for 20 years and already had a feeling of what the diagnosis would be. Still, you hold out hope. When the radiologist confirmed a suspicious 1.2 centimeter lump and recommended a biopsy, we held out hope that it was another fibroid.
You hold out hope
Fibroids, (nodular benign lumps) had plagued Gaye for years. Even though this lump was irregular in shape, even though the radiologist expressed concern that there might be “lymph node involvement,” we held out hope.
All other plans fell around us like dust. The remodel and school went on hold. The trip was forgotten. I shelved, (puns) my publishing plan. As the renewal for my domain registration and site hosting loomed, I considered letting it all go.
How do you bang out little articles about writing and crime when the person you love may have a deadly disease?
What we did, based on years of education, professional experience, and sober maturity was start researching breast cancer, cancer treatment, and cancer physicians. We found the following:
- There are seven distinct types of breast cancer
- Each tumor has its own DNA
- There are gene mutations, e.g. BRCA1, BRCA2 (more on that once I understand it)
- Each type has treatment indices and treatment limitations
- Treatments range from chemo, radiation, surgical intervention, to hormonal therapy
- There are massive encyclopedias of clinical/scientific data on breast cancer
- There is NOT a great deal of relevant patient-generated information
From what we found and what we could process—a breast cancer symposium of clinicians and scientists on YouTube flew completely over my head—Gaye and I were able to work up a pair of best case/worst case scenarios.
While not thrilled with the prospect of surgery, Gaye did her best to take it in stride. She recalled a woman in her 20’s who suffered a form of cancer that necessitated a double mastectomy. Another woman, in her 70’s was devastated by the loss of a breast. The young woman was grateful to be alive. Her outlook was positive and she was highly motivated. The older woman struggled with her body image, indeed, her identity, after surgery. Gaye says both women gave her perspective on what she faced.
Doctors LOVE data. They do NOT love details.
On April 19th Gaye’s OB/GYN, (Dr. T) called us to her office. Gaye said she already knew but I held out hope. The results were cold-light-of-day conclusive: 1.3cm cancerous tumor. The second biopsy revealed the left axilla (lymph node) as suspicious for malignancy, (spreading cancer). Determining the stage (progression measured by size of the tumor and type of cancer) was pending additional information.
Dr. T immediately turned to treatment, asking if we had a surgeon in mind. It's not a common question. But Gaye is a registered nurse. It is also a testament to the good doctor that she did ask rather than just knock out a referral. And our location means there is a basis to the question.
One of the few benefits of living in Houston is that we are the medical center for the nation, with internationally recognized programs across 80 hospitals in the city and over 200 in the county. Yeah, we have options.
Gaye worked her way through nursing school as an emergency room clerk. She met many excellent doctors (and a few to be avoided). Of course she had a surgeon in mind.
However, Gaye also knew when to defer to the experts. Rather than name the surgeon she had researched, she asked for Dr. T’s opinion.
Dr. T first acknowledged M.D. Anderson Cancer Center but expressed a concern of the possible wait to get in. Clearly, treating cancer of any type is a time sensitive issue. And when a doctor expresses concern on any subject, you listen.
So, when Dr. T deftly segued to a doctor she knew—a woman, with credentials, publications, and research cred—we were all ears. Good thing, too. As the surgeon Dr. T recommended turned out to be the same doctor that Gaye researched.
If the angels didn’t sing they were certainly humming
Dr. T thought she could get us in to see the surgeon that week and made the call, (on her cell phone because they’re girls like that) while we waited. As it turned out, the surgeon, (Dr. B) remembered Gaye and told us to come to her office that day. I’ll write more about that part as we go forward.
So, yeah, other aspects of life are still on hold. We begin our cancer journey with hope but also a solid plan of treatment. Gaye has good days, where she’s ready to lace up her butt-kicking boots and go hard-AF on cancer. She also has low moments where the fear gets up on her.
We've both lost family to cancer. As previously stated, Gaye has cared for cancer patients. The experience is chilling.
Thankfully, we also have folks supporting us and lifting us up but what Gaye wants most is information and an idea of what to expect.
Navigating this process is, to quote Gaye, "hell." Many very competent, very professional people forget that we don’t know what they know about the process. The billing department never knows what the scheduling department knows. No one knows what the insurance company knows.
Hence, this repurposed blog. My plan is to share our journey and our fight. To give people an idea of what we face and if not a plan of action for themselves, then what to ask of the insurance company and what little step/treat/consideration made the long days a little better.
Whether you face cancer yourself, want to support someone else who is, or simply are curious, I hope you’ll join us and offer your own experiences in comments or messages.
The photo above, Butt-Kicking Boots, belongs to my Missus and its use here is by her kind permission.
