Experiencing Chemo for the First Time with a Urostomy

Nothing about my bladder cancer journey has been typical. Most patients, at least here in the US from what I've read, receive chemo first and then have their radical cystectomy. I was diagnosed at such a late stage that I was actually given a choice. After having experienced so much pain and so many sleepless nights, I wanted the root cause to be GONE!

I very quickly decided to have the procedure first and chemo followed. Quietly, I was really hoping that they would get all of the cancer in the procedure and I wouldn't need chemo afterward, but no such luck.

My complications post-cystectomy

I experienced 2 months of complications at a physical rehab facility. When I got home, I barely got to enjoy my birthday and Thanksgiving. I use the word enjoy loosely as I was still experiencing a fair amount of pain, excessive vaginal discharge, and bowel control issues from the muscle and nerve damage from the procedure. The week after Thanksgiving, I saw my oncologist in the office for the first time, got my port, and started chemo.

My grueling chemotherapy regimen

These were the first times I had been out in public since having my radical cystectomy. I had not gotten used to my new anatomy, nor had I gotten my system down yet for dealing with my ostomy in private, let alone public. My MVAC chemotherapy consisted of 2 days of back-to-back treatment. The first day, I was usually there for 4-5 hours, and the second day, I spent 7-10 hours there. It was grueling.

Lasix alongside the chemo

One of the things included in all the infusing was Lasix (a diuretic) after one of the chemo drugs and before they could give the rest of it. Lasix plows through you quickly. I was warned about it. Yet, I was still grossly unprepared. I was also unprepared for how exhausting it is to sit in a chemo suite to receive infusions. I was doing well, paying attention to how full my ostomy bag was getting, until...I fell asleep!

Waking up with urine going everywhere

Yes, I dozed off and, as you may be guessing, I woke up with urine going everywhere! I didn't know what to do. I was more thoroughly embarrassed than I had been in a long time! Truth be told, the staff didn't know what to do either! They were only experienced in dealing with patients who still had their bladder.

I didn't have any spare clothes

One of the nurses came to help me. This was the oncology office, not the urologist. I did think to bring a spare set of ostomy supplies. What I did not think to bring were extra clothes! I had to strip down in a bathroom, and one of the nurses brought me things to clean up with and 2 of those horrid, long-sleeve chemo medical gowns. It covered what needed to be covered, but my legs were cold! It was December, and I was stuck driving home from chemo in layered hospital gowns. I survived the experience...and learned from it!

Now, I always remember spare supplies

I always remembered to bring spare supplies from then on, but I also brought spare clothes, too! Spare clothes were helpful in other ways as well since I was always nauseous and vomiting! I also would take a Foley (drainage) bag with me like the one I used at night, and I would just hook it up on the days that I was getting Lasix. The nurses would help me fasten it to the IV pole and I would empty it twice while I was there - once in the middle of treatment and again when I was ready to leave. I would dispose of it right there in the chemo suite by putting it in one of the biohazard containers.

Adjusting to life with a urostomy

The moral of this story is: as you are adjusting to your new life with a urostomy, be prepared! Later down the road when you've adjusted to your new body and figured out what ostomy products work best for you and your life, then you will have a bit more freedom to go places without constantly bringing supplies and clothes along with you. It takes time to adjust. Prepare for everything!