Happy to Still Be Alive!
Last updated: March 2023
In Jan 2017, I turned 68. In 68 years, I was pretty healthy, with 4 operations in all those years (3 after age 65), nothing out of the ordinary. In January 2017, I was getting ready for my yearly wellness checkup at my doctor's. A couple of days before the visit I noticed one single drop of blood. It did not concern me too much, maybe a UTI. At the visit, we spoke of several things and I mentioned the drop of blood and continued on with the visit. Nothing was done or said again about the blood. Several days later another drop, and a few weeks later another. Finally, I thought at 68 yrs old I should not be seeing blood.
"She was very concerned"
I made another appointment with a different doctor in the same office. The first thing she did was take a urine sample to check for UTI. No UTI but she was very concerned and wanted a bigger urine sample to send out for testing. After those results, an ultrasound was scheduled quickly. The doctor called after those results and said I should schedule an appointment with a urologist as soon as possible. Of course, the scheduling people could not get me in for 4 months! The doctor intervened and I had an appointment in less than a week.
The urologist did a scope and scheduled a TUBT within a week. The results came back with stage 3 muscle-invasive bladder cancer. I was told if I did nothing, I would have no more than two years left!!
Getting a second opinion
Because it was going to be such a life-changing experience, I choose to get a second opinion. After the 2nd opinion, I had Chemotherapy scheduled to start in 4 weeks (would have been sooner but I had a big vacation scheduled and he said that would be fine). The hospital gave me information to find information on a trusted website about bladder cancer and urostomies. I went thru every article on the website, including how the surgery would go, how the ostomy would look, and how to care for a urostomy. I recommend anyone to do the same.
The chemo was only 3 treatments every other week but for 6 hours each time. The treatments days were very long, had to drive 2 hours to the hospital, have blood work done, see the doctor, have the 6 hr chemo treatment, than drive back home for 2 hrs. After the 1st treatment I was fine but the 2nd and 3rd were rough.
"I became an ostomate"
I lost my hair (of course) and would sleep for at least 18 hours a day. The surgery was set up to remove my bladder even before the chemo was complete. On Dec 7, 2017 I became an ostomate. My doctor always kept his patients in the hospital for 7 full days. He stated within 5 days I will have an infection, and I did. This way the infection could be treated immediately.
My new normal
Because I was pretty health and had a good attitude about the whole cancer thing, he stated I would be back to normal (my new normal) within 3 months. After the surgery I could not see how I would bounce back that quickly. I was not in a lot of pain but again slept most of the day for about 3 weeks, could barely stand or walk, and because I slept so much only ate about once a day, just felt terrible all the time. About a month after the surgery, I developed an ulcer on my skin near my ostomy which made it painful to remove the bag. The doctor gave me some power and with 2 weeks all was healed.
Advocate for yourself
From the 1st sign of blood to the complete surgery, 11 months went by. At 74, I am 5 ½ years clear at this time but will continue to have yearly checkups, blood work, and CAT Scans until I reach 10yrs. Don’t let any doctor take your symptoms as unimportant, go to another and another if necessary.
Most of the time I am fine and live a full life, do most everything I want, but as many people know the cancer scare is always with you, always on your mind.
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