While You're Busy Doing Other Things--The Final Diagnosis

It's February 19, 2019 and I'm posting this again with an update. It's worth repeating, if it reaches someone in the same situation I found myself two and a half years ago. It's also worth noting that the friend to whom this letter was written lost his mother to bladder cancer, which I didn't know at the time. His sharing of her experience was a poignant reminder of just how blessed I am. 
My update is this--my most recent diagnosis, as of last week, in fact, is "cancer free." There will still be check ups and tests, but at this point, I'm checking "bladder cancer" off my list of things I never expected to experience.  
I hope you'll read my original post. It may say something to you that you need to hear. 

Recently I was called to task by a dear friend after I mentioned in my Christmas letter that "my cancer was in remission." He asked if I'd mind telling him what kind of cancer and how it was being treated. Shamefaced that I had dropped the C-word so casually and left him hanging, I dashed off this letter. (And before you ask, my friend does not partake of social media and we really do maintain our relationship via good old fashioned letters sent through the US mail.) After thinking about it for a few days, I decided that by posting it here, it might speak to someone who needs to hear its message. 

Dear E----,

Sorry to have overlooked sharing the cancer episode, but just credit my abysmally sporadic letter writing. With all that was happening at the time, I kept putting it on the back burner, but thanks to a benevolent God and a couple of fine doctors, it didn’t take me out.

The story goes something like this. For at least three years before John’s fall, if not longer, I would occasionally see pink in the toilet. Since I’d had numerous bouts of hemorrhagic cystitis in the past, I just went to my doctor and got antibiotics, drank plenty of cranberry juice, and never gave it another thought. Google “blood in urine” and you get urinary tract infection, so even the web vindicated my complacency. Not to discredit a very nice man and a pretty decent GP, but the doc I was seeing at the time wasn’t inclined to push for tests or raise concerns unless the patient insisted, which I didn’t.

As you know, in June of ’15, John took his fall and life turned upside down. My health, which really seemed okay, probably due to constant adrenaline rushes, was my last concern. But the pink was more frequent, enough so that even in his condition, John made note of it. By the following June, several things came together to change the situation. John was finally able to spend an hour or two on his own without me, my doctor retired and a very energetic nurse practitioner became our primary provider, and I was passing sizable blood clots regularly. Suffice it to say, this young woman was more proactive than my former doc. She sent me post haste to a urologist, who had a scan done that day and scheduled a cystoscopy for the following week. Verdict—a largish polyp, possibly a tumor, which was removed two weeks later and proved to be malignant. It was very close to the point where the ureter from the right kidney opens to the bladder, so a temporary stint was put in to keep things flowing. I was not far from a toilet for the next six weeks, but otherwise there was nothing in my recovery that I could complain about. 

I wasn’t at all surprised that it was cancer. I just felt grateful it hadn’t gone through the bladder wall or worse, because I was the one who ignored every message my body tried to send me. By the time I saw the new PCP, I was seriously anemic and, to be honest, could barely make it through each day, but I was still clinging to denial.

The urologist I was referred to is the kind of physician I immediately feel confident with, but when he suggested the most frequent follow-up treatment for bladder cancer, called BCG, I balked. This in very basic terms involves infusing the germ that causes tuberculosis into the bladder, which produces immunity against the cancer. Still worried I might have PFS—Physician’s Family Syndrome, whereby any member of a physician’s family will suffer any and all possible ill or side effects from any treatment of routine illness—which I had experienced when married to “my second husband the doctor,” I refused at first. The major side effect from the treatment is, of course, contracting TB. But during the next cystoscopy three months later,  more tumors had developed. I didn’t argue when the urologist said it was worth the risk. Having the lining of your bladder sliced and burned away in stages is no picnic! And more to the point, It was time I accepted that my life was worth risking even nasty, but treatable, side effects.

The treatments—six in all—went without incident and to date—last cysto in November—there’s no further sign of cancer.

So that’s the story. Bladder cancer and its treatment are not nearly as visible or dramatic as so many other types of cancer. If I hadn’t told anyone, no one would have been the wiser. But I did talk about it, and even post about it on FB, because my case was like so many others. We (women) put off addressing what doesn’t put us flat on our butts, especially when there are others with greater needs, until we put our lives in jeopardy. Ignoring symptoms is stupid! That’s what they’re for, to warn us that something’s not right. We both know of cases like mine that ended tragically. I will always have bladder cancer, but with the same kind of follow up, it shouldn’t be a problem. Many with other types of this insidious disease aren’t so fortunate. I know how blessed I am, in spite of my persistent denial, to be able to use the word "remission" with confidence.

My kind, compassionate urologist has retired as of this month, so I will have a new doc for my next cysto. I’m assured by everyone that he’s wonderful, trained at Mayo Clinic, and no doubt looks about 18. As long as he doesn’t rock my treatment boat, that’s fine. I’m just thankful that when I needed him, my original doctor was on hand to get me through this. Does it really take someone over 60 to understand the issues of caregiving and the limitations that come with age? That is a course I’d gladly teach to every med student in the country! 

For everyone reading this here on my blog, my closing is this. If you see yourself anywhere in my story, get yourself to a doctor, be honest with him/her, and get the testing and treatment you need. Life is precious. Don't let it slip away while you're busy doing other things. 

Love you! 

Karen