This Year’s Birthday Gift....

...was a CT scan. Sadly I have been passing blood in my urine sporadically for a few weeks and had to have it checked out. The CT showed areas of concern and was followed by a cystoscope in a urology office. That also showed a need for further investigation.

I work in medicine and have my whole career. Navigating the system is a nightmare despite claims of  “Extraordinary Care”, no one really gives a crap about you personally unless it’s about payment. Your urgency is not their urgency and you are liable to be speaking to people who have little medical knowledge and are clueless about your plight. I have met some really nice, but aloof, co-workers as well as some folks that probably should not have a job greeting people. I understand now that the public applies these ideas about’Extraordinary Care’ to the whole process from the cleaning team to the physician. In reality, the person that answers the phone at your physician’s office is unfairly lumped into this so any break in the link of this chain affects the system as a whole and shades your perceptions.

I have discovered that it all moves at a glacier pace taking weeks to get things done where it could be days. Labs that don’t post to EPIC, reports that never reach the primary physician. I have gone and retrieved labs after signing releases then faxed my own results to those who need to see them. There are parts of the system that are really nonsensical. Despite this, I have had some fantastic preop  and post op nurses and great CRNAs that were reassuring and lovely. People actually involved in your care are great not unlike the nurses And tech professionals I work or am acquainted with everyday. Despite their schedule or late hour, they are always pleasant and seem to go out of their way to accommodate.

The process of diagnosis is painstakingly slow. You would think scans and testing would be done before consults so a discussion could be had but in reality everything seems to happen in reverse order. It takes weeks to get a visit and then another week to have the exam and then another to get a follow up for discussion. It’s really frustrating and I know how to press things a bit. What about a regular old civilian? My Lord, what do they go through? I am not sure why the progression is so linear seeming unable to veer from some disposed path.

After the CT, I had an ultrasound to clarify the results. A $4000 scan whose results need clarifying? Makes no sense at all. So the ultrasound ruled out kidney cancer which turned out to be a cyst but shed no real light on my congenital ureter defect and where, what is now considered cancer, in my mind, is located. Ureteral cancer is bad. Very bad. Losing a kidney and bladder bad.

Now onto the biopsy. Another week goes by after the consult visit to the biopsy. While I am under, the urologist slips a stent in my right ureter that curls up in my kidney and ends in a pigtail in my bladder. Probably the most irritating implant known to man. I feel a constant vague fullness and “sticking” sensation 24 hours a day and the urgency to void makes me dash to the toilet no matter what. The very act of voiding now sets off peristaltic waves that make need to hold on the walls for support, the pain is so intense. Then it passes till the next urge. The good news is, the ureter is clean, no cancer there.

I am diagnosed with a congenital condition, Hutch diverticula, which is close to my right ureter (the tube that delivers urine from the kidney to the bladder). The stent prevents the ureter from shutting down since he removed a tumor close to its location in the diverticula.  I will now pass a lot of bright red blood for the following weeks until the next phase of treatment. That depends on the pathology results.

The pathology news is devastating. While the cancer did not invade the muscular wall of the bladder, it happens to be a sarcoma type cancer known to be aggressive and resistant to chemo. My urologist calls to deliver news neither of us expected. I will likely lose my bladder so as not to ‘seed’ cancer cells into my belly if he were to open the bladder in situ. My surgeon heads out of town. A follow up in a few weeks. What?  So now it’s waiting, thinking, crying and praying. Life without my bladder will be like...what? Part of my next visit is to meet with the oncologist also. Is this the primary site? Has it spread? My chest X-ray was clear, what does that even mean? The ultrasound showed normal abdominal organs. Ok, but am I clear?

More to follow....