Hanging proudly on my living room wall is a framed horse blanket. This is not just any horse blanket; this is the official Preakness #12 saddle cloth for the year 2007.
Only 11 racehorses qualified that particular year, but the official supplier of the blankets – my friend Janet – had made a couple extra: numbers 12 and 13. Number 12 – hanging on my wall – has the American flag and the official emblem representing colorectal cancer awareness to the left of the huge numeral 12 and, below the number, is my name: Erika Hanson Brown.
Number 12 was Janet’s final and most lasting gift to me. I received the gift blanket in the mail on the day of her death from the ravages of colorectal cancer: September 20, 2007. I was so very touched by her death on that day, and I am very reminded of her presence in my life each time I cast my eyes on my wall.
But I’m not only touched by Janet’s premature leave-taking; I’m angry about it. You see, I don’t believe that Janet should have died when she did. I believe that, had she heeded life-saving ideas from the urging of a friend of mine (Suzanne Lindley), she would be alive today – just as Suzanne herself is so very much alive today.
Suzanne, a 12 year “lifer” with stage iv colon cancer disease, has taken singular, thought-out steps to maintain her own life, resulting in her living – today – with cancer as a chronic disease. Yes, indeed, Suzanne fights on a daily basis for her life, but she is living proof of and a role model for the fact that this can be done!
Janet and I had similar cancer stories: both of us were diagnosed with stage iii colon cancer: mine was in 2002, and Janet’s was one year later, in 2003. Janet got in touch with me in early 2004 because she’d learned of similarities in our two diagnoses. She wanted to be guided by me in addressing our disease, and I was more than happy to be that guide.
What a privilege! Here was someone who’d had such a different career and lifestyle, yet we were “sisters” in the life and colon cancer. (We used to say that we were both “spleen-less”, because we were!) I both listened to Janet and I watched for her postings to our COLON listserv for news of developments with her. What I learned with dismay was that her disease was progressing. After she had recovered from the removal of her cancerous spleen, she learned that she now had lesions in her liver. Resection of the liver was very, very difficult for her, but she was able to recover from that additional surgery and bodily insult. Then there was more disease found yet again in her liver, and Janet was now expressing great fears about what was happening to her declining health.
As my best “warrior” tendencies have to do with checking into my own network, I then recruited my friend Suzanne to help me with delivering real help and guidance to Janet.
What developed from this connection made initially on Janet’s behalf was a threesome that talked daily. We were a gang of three that was determined to beat up this cancer; we were going to “show up and deliver” on Janet’s behalf. What had been a relatively unconnected acquaintance with Suzanne turned quickly into a daily catch-up and discussion about how to help Janet.
For my part, I was thankful to turn over the technical piece of my helping relationship with Janet to Suzanne – Suzanne is a proven case! Suzanne – a real “energizer bunny”- a walking, talking, traveling, helping, advocating, mission-driven survivor of so much cancer that she’s almost unbelievable – jumped right into the case and, with kindly prodding, attempted to guide Janet into looking at some life-saving therapies that she might consider adding to her roster of therapies.
Here’s where I get mad. While Suzanne had gone to the great trouble of getting Janet’s most current scans reviewed and accepted for possible treatment by one of the most highly-regarded radiation oncologists in the U.S., Janet’s physician – I now refer to him as “Dr. God”- reacted negatively to the idea when presented with it by Janet.
“’Dr. God’, Janet told us, ‘doesn’t think it’s a good idea for me.’”
A few days later, Janet reported to us that her “Dr. God” had a chemo clinical trial that he wanted her to consider, and that she had decided to accept that suggestion. The clinical trial – a crap shoot, at best – did her no good. It’s very possible that had she accepted the targeted internal radiation treatments at that time, her liver tumors might have been destroyed and she might be living today and still happily making those horse blankets for the Preakness Races. She just might be working alongside Suzanne in the delivery of HOPE to cancer patients.
I think that “Dr. God’s” reluctance to recommend that Janet find additional help was tantamount to signing her death warrant.
Too, I think that Janet’s personal reluctance to disregard his advice and to follow her own path was tantamount to putting the final nail in her own coffin.
Janet’s last summer was a miserable summer for her, spent mostly drugged and bed-ridden. During her last week of life, she decided to try for the earlier-recommended liver-directed therapy. It was too late, however. She’d been an acceptable candidate before, and now she learned that she was no longer in that category because of the progression of her liver tumors and her failing health.
Janet’s story has turned me into a Cancer Warrior. Janet’s voice urges me to promote earnestly the self-advocacy necessary to take charge of our own journeys through cancer and other diseases. I want to spread the word to the cancer-diagnosed that there are many steps that we can take on this cancer journey that seems to have been chosen for us. When our own “Dr. God’” declares that this is the treatment they recommend for us, I want us to ask “Why?” I want our new patients to ask “What else?”. “Where”? “How?” “When?”
1. I want our medical professionals to be educated about all the additional therapies (beyond the scope of their own specialties) and to assist their patients in following whatever treatment path they choose.
2. I want personal choice to become every single person’s way of being and deliberate mantra.
3. And I want our survivors to be directed to those knowledgeable people with whom they can talk for education and support in this new way of life called “survivor”. (I’ll recommend here and now that they get directly in touch with YES Beat Liver Tumors – www.beatlivertumors.org. for exquisite and personal support.)
We need to help our patients think of themselves as Cancer Warriors. All of us – caregivers, survivors, patients, physicians, nurses – need to prepare to “do battle”, if we’re going to beat this disease.
Janet’s voice still speaks to me. She tells me that we’ve got a cancer war to fight. See this, and she’ll speak directly to you: http://pimlico-race-track.topictastic.com/video/cnn-hn-preakness-and-colon-cancer-awareness
I’m ready. Are you?
Erika Hanson Brown
Diagnosed stage iiic colon cancer, August 26, 2002
“Spleenless, “semi-colon-ed”, and NED 8 years, no recurrence