06.06.22
By Son of Inequity
Part 2
This is Part 2 in a series of blogs about my diagnosis and recovering from colorectal cancer. To start at the beginning, click here for Part I.
The results of the FIT test I took came back negative, which didn’t put my mind at ease—knowing all too well about my own family history and that FIT isn’t a very robust test for early detection of CRC, particularly in Black people. I spoke to the HR director at my company, which has a self-funded health plan that isn’t particularly good.
Based on my history, I insisted on a Cologuard test or a colonoscopy. The HR director wasn’t very helpful or concerned, but she said she would look into my options.
About two months later, another test was delivered to my house. Guess what/it was another FIT test kit.
Prior to taking this job, I worked at a hospital and kept in touch with many of the ICU and ED staff who I worked closely with, including nurses, docs and EMTs. One of those docs knew that both my parents died young from CRC. All through my late 30s up to and including my 40th birthday, this doctor never let a week pass without texting or calling me about my CRC screen. He was insistent and I have to admit, kind of annoying.
But I thank God today for his persistence.
A month or so after I tossed the second FIT kit into the trash, I got a package in the mail: it was a Cologuard test. I can’t say I was surprised because this doctor was texting me daily, asking if I had received anything interesting in the mail.
I still don’t know how he managed this, but he did and with no charge to me.
So I carefully followed the instructions and sent the sample back to the lab.
Lo and behold, the result was positive. My doctor friend back in North Carolina recommended a doctor and surgeon where I live now. The genetic test revealed the KRAS mutation that I discussed in Part 1 of this blog, the genetic mutation that is a common genetic biomarker for CRC in African Americans and one of about a dozen mutations the Cologuard test can detect.
The following month—and almost a year after this whole process started—I had surgery to remove a small stage 1-2 colon tumor.
The tumor was very small and localized. There were no signs of metastasis. My liver, lungs and lymph nodes all were clear and unaffected. For more advanced tumors, which have spread throughout the body, the 5-year survival rate is 15 percent.
While my tumor was caught early—very early when compared to most African Americans–the tumor was still too large, and my risk was too great, to remove it with a colonoscopy, so it required surgical resection. The tumor had not penetrated my colon wall, which is good. But my surgeon still wanted to remove a small part of the colon wall surrounding the tumor, as well as remove a nearby lymph node to confirm that it had not metastasized yet.
It had not!
During this process, I never really feared death, probably because I knew that CRC is very survivable if treated early. But I began to fear the thought of having a to use a colostomy bag. The very thought of this led me to hyperventilate. And it made no difference that my doctor constantly reassured me that this would not be necessary.
Both of my parents ultimately had to use colostomy bags because their cancers had so ravaged their colons that they could not defecate normally.
I have many horrible memories from this time so the thought that I too might need this procedure triggered uncontrollable anxiety.
If you met me, you would probably never believe that I had the broken and violent childhood that I had. But, thanks to my grandmother, I overcame it.
I’m very fit and dress well. I pride myself on my appearance and my vocabulary. I speak in front of large groups of people regularly. I hold a significant amount of equity in the startup where I work.
For a guy with an AA degree, I’ve done very well for myself.
The idea of a colostomy bag filled me with dread because it threatened my self-image, which is something I worked very hard to build…or rebuild. But it was more than just the fear of a leak or the smell.
The real fear was exposure. Exposure of my past, my family and where I really came from.
No matter all my effort and hard work, I feared being exposed as the son of heroin addicts and repeat felons. No matter how much I fit in, the truth would be obvious to everyone.
It may not make sense, but I associated all of that ugly history with a colostomy bag.
The very thought… I could smell it.
The fear was irrational and overwhelming. I didn’t get a full night’s sleep for weeks. And the dreams and nightmares were otherworldly. And I mean it! I wouldn’t wish those dreams on my worst enemy.
Ultimately, I was only able to manage these fears with the help of a therapist who I saw daily for several weeks after my surgery.