They kept saying that there was nothing wrong with me, that I’d just have to learn to live with this!
This is a photo of me that was taken 10 years ago prior to my diagnosis of colon cancer – almost exactly. I was visiting at my brother’s home in Dallas, and my siblings were quietly -amongst themselves – asking what was wrong with my health. They weren’t as direct about it with me, but they did keep asking me what my doctor was telling me. I felt a bit annoyed as I kept telling them that my doc said that I was OK. Belying my reaction to them, my anemic pallor was very evident, I’d lost weight and looked frail, and I certainly wasn’t exhibiting good health! I actually felt terrible but I really didn’t want to admit it.
I’m not one who goes to the doctor often. But for one year-plus, I’d been increasingly going to my doctor for help because I just didn’t feel good. This scenario then kept up for 6 more months. During the summer of 2002 I was even more consistently in bed all day, telling myself that “tomorrow” I’ll feel better. And, yes, in the mornings I would “feel better”….for about 15 minutes!
I’d had a colonoscopy in January of that year that was incomplete (not getting to the end of the colon). The performing GI doc had explained his result by telling me that my colon was too” difficult” to view fully but that I, indeed, had irritable bowel syndrome (IBS) “just like” he did. A second screen in the protocol failed me as well. The above picture was taken a few days after I’d had a barium enema x-ray that had resulted in being reported out as “unremarkable”. It later was discovered that the unremarkable report had belonged to another person. (The “system” has its major flaws!)
My PCP wasn’t very helpful either. All she could seem to do was to recommend that I take iron pills to help my unexplained anemia. I’m sure that she was stymied because my physical vigor certainly what it had been for the many years I’d been seeing her, but the system’s protocol couldn’t seem to find any cause. (Today we know that unexplained anemia needs to be explained!)
I can remember dragging myself back into my PCP’s office yet another time in early August. Feeling worse because I’d ceased taking the iron pills for the prior two weeks (someone had told me that they were “poison”), I confronted her once more with my decreasing vigor and illness, and a second colonoscopy was ordered…..finally!
“Well, I’ve got good news and bad news”, says this different GI doc. “The good news is that you are not going to have to wear a bag.” My reaction was quite surprising to her: “Can I go swimming tomorrow morning?” (She subsequently told my PCP that she didn’t think the drugs had worn off yet, that I didn’t understand what she’d told me.) I did understand – all too well. I had a tumor in my colon, and that was what had been plaguing me all this time (almost two years).
All I could think of was the last thing in the world that I could handle – with this new news – was to be told that I couldn’t have that delicious morning swim on my first morning with this diagnosis! The physician assured me that I could go swimming, but that I also needed to show up the next afternoon for a CT scan to assess what was going on. That was to be followed with a visit to the surgeon who would be scheduling me for the first surgery of my life.
That’s how my life changed, I would suggest, for the better! Now I knew what it was that was killing me (it was!) I had something to confront, something to defeat! And, sick as I was, I somehow felt that I could and would survive this. Little did I know at that time that this turn would prove to be the definition for my life for going forward.
At that point I knew very little about cancer: its staging, prognoses, treatment protocols, side effects, etc. And I was about to learn! My life had just taken a fascinating turn, but first my job was to get through the treatment and its aftermath – not an easy task, I soon learned.
My treatment process took yet another couple of years from my life, but it did give me back my life. It was hard. Surgery resulted in a re-design of my colon (taking the offending tumor and many surrounding lymph nodes) plus the removal of my spleen – because of concern for metastasis to the spleen. There was, too, suspicion that the cancer had spread to my liver, but surgical examination of the liver didn’t demonstrate that. The surgeon informed me that my stage was iiic (meant nothing to me) and/but that he thought that I would make it. “The margins were clear,” he said, “and I think you can do this.” “But”, he said, “…you will have to have chemo.”
I felt so much better after recovery from surgery that it was hard to imagine that chemo could make me feel worse. The treatment for colon cancer, however, dictates a solid 6 months of chemotherapy, so I did know that I had a rough go ahead of me. Looming ahead also was the fact that I had to declare medical bankruptcy, and that I REALLY needed to divorce the man to whom I was then married…..who was declaring to everyone that I was dying. (He was so ready for me to die that he even started dating someone else while I was taking the chemo treatment. “I have to have a woman in my life,” he callously said to me.)
As you might imagine, I removed myself from that toxicity as soon as I physically could! As soon as I could, I physically moved into the sweetest, sunniest, most comfortable apartment that afforded me the “room” in which to heal from the trauma that I’d just endured. Life was beginning again, but it was different. Now I knew something I hadn’t known before: I could survive some very tough stuff. But I was in a “hole”, and I needed to climb out of it.
What ensued for me in June of 2003, after my move into my new life, was a journey of discovery that one can only imagine. First of all, I was starting to feel better – slowly. I felt myself opening to the idea that I wanted to know more about my disease; I wanted to know others who’d had it (and survived!), and I wanted to know how they had done it. I was certain that I, too, had something to offer this new universe of healthcare, cancer care, and I slowly, methodically started finding folks with whom to talk. At the very same time, I was very aware that my disease could recur – and that was very frightening. “All the more reason, “I thought, “to get to know folks in this cancer world!” I wanted to –at the very least – know “where” I would go for advice and care should the colon cancer return.
That one thought – that I should build a network of support with this new reality of my life – was, I believe, a strong survival strategy. This has become a strategy that I try to impart to others who’ve become affected by disease, commencing by targeting my own cancer: colorectal cancer.
Today that network that I envisioned back then has a name: COLONTOWN. COLONTOWN is the non-profit organization that I have founded that has created the literal foundation from which to continue to build out that network that I envisioned. COLONTOWN is – today – a vibrant, growing network/community of people who can find and connect with one another. In COLONTOWN, we can learn how to survive our beastly disease by making connection with others who’ve encountered the same demon. We are a community made up of all types of people, all ages, and we find each other from all parts of the globe.
I like to call COLONTOWN “the face and the place for colorectal cancer survivorship”.
What began as a horror show for me has turned into a vibrant, dynamic offering from me to others. This is a “play” in which I’m honored to play a part.
We in the cancer community often talk about this concept of “a gift in the experience of cancer”. I can say in all honesty that my own cancer experience has been, indeed, a gift to me. This has been a gift for which I am extremely grateful. And I do try to live my life in that gratitude.