Mr. Ray Graffin or just Ray
I retired from a 35 year career as a radiologic technologist, and at 60 went to driving a school bus for the past 13 years. I enjoyed it very much. Watching the kids grow up and go to highschool and I just liked driving the bus. In the summer of 2019, I started to have pain urinating and went to the doctor.
3 Months...
Could only see the nurse practitioner gave me antibiotics because she thought it was a UTI. A month later, still had it. She wanted to have me try another round of it. I at that time made an appt with a urologist at Dartmouth Hitchcock Medical Center and they thought it was something with muscle control. Now keep in mind, 3 months have gone by. The Dr. there said to try physical therapy for pelvic control and see them back in a month because he was taking maternity leave for having a new baby boy.
5 Months...
Now almost 5 months, after I saw the DR. he saw no improvement and did a cystoscopy right there. Found a large tumor and in Situ as well. 2 weeks later, the biopsy showed T1NM bladder cancer. Did a TURBT, 1 week later did it again because needed more wall tissue. Was told to either start BCG or have radical cystectomy. I said BCG. Great except we do not have any to give you. They were allocated a little every month because of a shortage and I was on a long list. Advised to find a hospital that had it and go there for treatment. OH boy. Contacted BGW, Dana Farber in Boston. They said they had BCG. Had a consult there, all agreed this was the best course and they would schedule me .
6 Months...
3 weeks later called back and said sorry they have none. WHAT? DHMC called in a week later and said they had enough in now to start me. Went there for 6 treatments and had a cystoscopy. The tumor did not return but Insitu there. Decided on RC. had that done,
1 Year Later...
Now almost 1 year later, 8 days in the hospital. Path report showed non-muscle invasive was actually muscle-invasive and some in lymph nodes. Home from surgery and started chemo. Trying to adjust to wearing a urostomy pouch, the possibility of death soon and now chemo. I was going to retire this year and enjoy grandkids and travel in a camper with my wife. NOPE.
The road forward...
Finished the chemo 3 months ago, not fun. Got a NED report and now I wait and try to be normal until my next 3 month check-up. It's not easy and don't know what to do with my life yet. Cant work as a bus driver when I have to change my pouch every hour and a half. Hard to find clothes. I'll figure it out, but life changed quickly and I feel there were to many delays in diagnosis this. Also I have two grandsons 5 and 7 and now a granddaughter 3 months old so for that, I am glad to be here.
That's my story.
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