The "New Normal”: My Journey with Stage IV Appendix Cancer
- 1 day ago
- 4 min read
By Debbie Carmel
California
In 2024, at age 64, my world changed overnight.
It started on a Tuesday in January with a sharp pain in my lower left abdomen. Like many of us do, I chalked it up to "old age" or maybe diverticulitis. I even felt well enough by that Saturday to go wine tasting with friends. I had no idea that a “watermelon-sized” tumor was growing inside me.
By February, a wellness exam led to a CT scan, and by March, I was in surgery. My diagnosis was a moving target: first Stage IV Ovarian Cancer, then GI Cancer of Unknown Origin, and finally, Stage IV Appendix Cancer (Goblet Cell Adenocarcinoma). I’ve since learned that multiple diagnoses are common with rare cancers like mine.
The Summer of Survival
Following Cytoreductive Surgery (CRS), I started chemotherapy and felt worse after each treatment, but not in the way that I thought I should. My oncologist decreased the dosage to see if that would help. Because I had been taking immune suppressant drugs since 2012 for Autoimmune Hepatitis, my body was vulnerable. After my third round of chemo, I couldn't eat or drink. I ended up in the ER in June with a CMV virus (Cytomegalovirus).
That virus was devastating; it literally desecrated part of my intestines. I was rushed into emergency surgery where they removed my appendix, terminal ileum and I had a right hemicolectomy. I woke up with an ileostomy, not knowing whether it would be temporary or permanent.
Facing the "Bag"
The most scary part of my journey was dealing with the ileostomy. I had a "high output" stoma - draining over two liters a day - and had to track every drop while in the hospital. I cried a lot that first week. I had "accidents" where the bag came apart, and at times, I woke up with my entire bed soaked which was very depressing.
I honestly don’t know how patients are sent home after just a week with a new ostomy. I was in the hospital for a month, and the floor nurses had minimal training in ostomy care. My husband, Chuck, became my hero. He learned how to cut the bags and change them for me which he did for over four months before I was able to finally get a reversal.
Why You Must Be Your Own Advocate
I knew I couldn't live with a permanent bag if there was any other way around it. I had to be a fierce advocate for my own reversal.
I emailed my surgeon and oncologist frequently. My case had to go before the Kaiser Tumor Board for their approval due to liability issues surrounding surgery on a Stage IV Cancer patient. I emphasized that my quality of life was suffering as the result of the high output Ileostomy. I had lost 40 pounds because I couldn't drink enough to keep up with the fluid loss. Little did I know that having a reversal can come with its own set of complications. After my reversal, I suffered from constant, acidic diarrhea. It was miserable. I researched and suspected BAM (Bile Acid Diarrhea) because my ileum had been removed. I communicated this information to my Gastroenterologist who reviewed my chart, and prescribed medication. Once I started the bile acid binder, Cholestyramine, my daily life became more manageable. My bowels were solid again although I learned that there are certain types of foods that my body doesn’t agree with anymore.
Advice to Fellow Warriors
I am happy to share that after more than 1.5 years, I am "NED" (No Evidence of Disease). As a recent retiree, I am figuring out the next stage of my life and planning fun trips, reading, socializing, and finally finishing those house projects I delayed while working and raising twins. If you are navigating this "new normal," here is what I’ve learned:
Do Not Suffer in Silence. If your bowels aren't right within a few weeks after surgery, contact a Gastroenterologist. Chronic diarrhea shouldn't be tolerated when medications like binders can help.
Use the Internet. Facebook Ileostomy groups were vital to me during my journey. They offer the "tips and tricks" to deal with a sore bum and bag changes in addition to navigating outings and other things that “ostomates” have been successful with and are happy to share.
Get a Bidet. After a reversal, your bottom will be incredibly sore. A plug-in bidet from Costco was the only thing that relieved the acid burn for me.
Be Patient. This is a major life change. It’s okay to cry, vent, and have good and bad days. Some people name their bags to cope; Chuck named mine "Stewey." I’ll never look at beef stew the same way again!
Navigating life after cancer isn't easy, especially with the high risk of recurrence, but I choose to look forward and keep up with my 3-month scans and bloodwork. Best of luck to you as you fight this nasty beast. Keep advocating for yourself - you are worth the effort!
