Saturday, August 20, 2011

The Long and Winding Road toward Diagnosis

My story begins with finding blood in my urine the last week in June, but I was in the midst of presiding over a challenging four-day jury trial on a seven-count felony case.  My courtroom was leaking water in about a dozen different places during the week of rain storms, so I had to use a different judge’s courtroom. It’s not the same. A judge’s courtroom reflects the judge; I felt like a visitor, not the presiding authority. Even the chair wasn’t right. But I made do. 

As well, I was on the tail end of whatever vicious bug my daughter, Anne, brought home from her long flight back from Sydney. So I didn’t even have enough energy to get to the clinic to give a urine sample and instead I napped over the lunch hours. In all events, the blood disappeared before the jury returned its verdict.

About ten days later, the first Friday in July, I was startled to find a large amount of blood in the toilet, but this time I was able to get right over to the clinic to give a urine sample. After it was tested for bacteria and none was found, I was called to return that afternoon for an exam with a doctor. 

A very sharp family-practice resident read my chart and saw that the same thing had happened two years ago: hematuria with no bacteria in the urine against a history of smoking. This combination is consistent with bladder cancer, so while she treated me in the short term with antibiotics and an anti-fungal, she asked me to follow through and get a cystoscopy. No rush, said she and her very experienced supervising physician; it could wait until after my daughter’s wedding in mid-July.

Feeling the import of the possibility of cancer on the way home, I asked for a sign. I saw the extraordinary: an egret standing by the pond in the parkway near my home. I felt soothed and grateful. This is all going to be okay.

Ten days later on the Monday evening before the wedding I had another episode of hematuria. This was very upsetting, but four friends who were visiting to help with last-minute wedding preparation activities encouraged me to wait until after the wedding to learn more since the doctors had said it could wait until then.

It took me nearly four weeks after the wonderful - even magical - wedding, reception, dinner and dancing in the gardens of our yard to regain enough energy (I had been the wedding planner) to make an appointment. Fortunately, I was able to be seen two days later (Friday) by a urogynecologist. She did a thorough GYN exam (all normal) and a cystoscopy during which she inserted a lighted tube into my bladder to have a look around. She saw an abnormality that she considered highly suspicious for cancer.  She ordered a CT scan which I had the following Monday (normal except for gallstones which aren’t in issue just now), and referred me to a urologist for surgery.

The urologist wanted to repeat the cystoscopy for herself on Wednesday. She is a whiz at this procedure. She agreed that the abnormality was probably cancer. Day surgery was scheduled for late morning on August 31st to scoop out the small growths and take biopsies of my bladder lining to see if the “probable” cancer has spread there. 

My husband, John, and I both liked and developed trust in my urologist. We admired her amazing intelligence, authenticity and authority with patients and, in my husband’s words, moxie. She explained the options openly and clearly.

Best outcome: No invasion of the bladder wall. This would mean a cystoscopy every three months for a year and every six months for another year, plus six courses of local chemotherapy with a nugget of tuberculosis inserted into the bladder for an hour. Peculiarly, TB mimics bladder cancer, thereby stimulating the immune system to develop great defenses to the real thing.

Worst outcome: The cancer has invaded the bladder wall. Then my bladder would be removed and a new one created from intestinal tissue which would require me to self-catheterize for urine release, but it wouldn’t be an external bag.

I have been careful in gradually giving Anne information about the possibilities. Her beloved husband, Tom, had to return to Sydney on August 7th until a date yet unknown when he will (we believe) be issued his “immigrant spousal visa.” Anne is a highly sensitive individual and in her separation from her husband, words like cancer, local chemotherapy or bladder removal surgery could be overwhelming.

Despite my sense that this will be okay, i.e., first option, it is awful to have to wait ten more days to know. I am used to being in surgery mode, but I am not used to having to wait so long for surgery and the answer. It is excruciatingly draining. 

© Jean DiMotto, 2011     Website:

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