Since April, I’ve written two blogs. My goal has always been to write at least one blog a week. I joke that God gave me the ability to write a sentence, and I am truly happiest turning a phrase and connecting with you. As I said in my last post, life happened. Thankfully, life happened. You see, I’m now a cancer survivor.
I’ll give you the CliffsNotes, in hopes that at least one person, hopefully more, will get a needed screening. Then, I’m going to share how I want to pay it forward, this second chance at life, in hopes of helping those with similar experiences.
In November of 2016, I went for an annual checkup and told my doctor I was having issues. I was 49. My doctor said to wait until I was 50 to get a colonoscopy, so my insurance would cover it as a screening. I turned 50 in September of 2017, but it was January 2018 before I could schedule my next annual checkup, and April 9 before I could schedule a colonoscopy, almost a year and a half after telling my doctor I was having issues. So, if something’s going on with you, get the screening or necessary test(s). Don’t be like me and trust your doctor.
The colonoscopy and resulting ultrasound showed a ping-pong ball-sized, 3.8 centimeter tumor 5 centimeters from the end of the line. From late May to mid-July, I had 28 radiation treatments and took low-dose chemotherapy pills. I’ve always had a high threshold for pain, but the radiation treatments are now my own personal benchmark of pain. Sadly, the treatments didn’t shrink the tumor, which was not hereditary, but rather a genetic mutation. On September 18, the tumor was surgically removed, and I became the recipient of a permanent colostomy during a 5 1/2-hour surgery. The surgeon told me I was cured, that he had been able to remove all the cancer. Scans had shown that the cancer was only in that one spot, and my lymph nodes were clear. The oncologist tells me that I will be cured when I am cancer free for 5 years. I am currently on the low-dose chemotherapy pills again for the next 3-4 months as insurance, in case there’s a speck of cancer that didn’t show on any of the scans.
I am grateful for so many things – my faith, friends and family, and an awesome medical team. Most of all, I am grateful to be here. As Ferris Bueller said, “Life moves pretty fast.” It moves even faster when you have cancer. Based on my experience, I’m currently working on three projects to help those with cancer and their friends and families:
The Inconvenience Journal – The Book and The Journal
Being a planner and a writer, I made my own makeshift journal/planner that began May 2, the day I first met with my oncologist. I had already started referring to the cancer as an inconvenience, something my oncologist had never heard it referred to as in his 25 years of practice. So began the Inconvenience Journal. I am currently writing the book, entitled The Inconvenience Journal, about my experience with cancer and my ostomy, and producing My Inconvenience Journal, the journal/planner that is tailored to the cancer patient’s need to keep track of a million little and big things. The book and/or journal/planner would make a great gift for friends and family to give to a cancer patient.
Half of the profit from the sale of the books and journals will go to fund treatment for cancer patients and ostomy supplies. Initially, insurance denied a PET scan my oncologist ordered. I had some money set aside and paid $500 toward the $2,500 total and had the PET scan. Worth every penny for the peace of mind it gave me. My insurance paid for it afterward; however, if I wasn’t prepared to pay for it to begin with, I likely would not have had the scan, which made me think about those who don’t get the tests or treatments they need, even with insurance. Likewise, insurance doesn’t cover the cost of a full month’s worth of some ostomy supplies. Initially, my efforts will be focused on the Middle Tennessee area, but if the book and journals are wildly and widely successful, then we’ll extend geographically as far as funds allow.
Ostomy Support Group
Cliff Notes, again, to say that I’ve had some issues with my ostomy that are part of the learning curve. I started looking for a local support group, mostly for tips on life as an ostomate, and the closest groups to Murfreesboro, Tenn. are located in Nashville and Columbia. I think there might be enough people, new and seasoned, to restart a group here in Murfreesboro. I’ll be contacting the United Ostomy Associations of America, Inc. this week to see if this is a possibility and what the process is. If you or someone you know would be interested in such a support group, please let me know.
While it seems people are becoming more open about their experiences with cancer and/or ostomies, I found only a couple of books and social media posts that were helpful when I started looking for answers to questions and common experiences, which is the inspiration for the book and support group.
Until next time, if any of this post resonates with you, please feel free to let me know. I envision The Inconvenience Journal book and journal/planner to be living works, meaning to be updated and added to by the experiences of my fellow cancer warriors and their friends and families.