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Letters From Cancerland: Potty Mouth

By: April Nelson; Published: September 15, 2015 @ 2:48 pm | Comments Disabled

I was never a fan of the late Joan Rivers, but all the same I’m going to use her trademark line.

Can we talk?

Many of us who live in the myeloma subdivision of Cancer­land deal with a re­peating issue that is so clearly differ­en­tiated along gender lines I am sur­prised no one has raised the issue with the feds.

Women, you all know what I am talking about: the 24-hour urine collection to check for protein.

Surely this was a diagnostic test conceived by and for male patients. In fact, the protein is called the Bence Jones protein after English physician Henry Bence Jones, who first de­scribed it. In the 167 years since Dr. Jones identified the urine protein, tracking it via urine protein elec­tro­pho­resis (UPEP) has become a staple of myeloma diagnosis and monitoring.

And for a guy, what could be simpler? Let’s face it, gents. You’re plumbed differently. Call for a urine sample, and you’re all “Hey, no big deal! Where’s the bottle?” You’re the ones who as children could pee in the back­yard while those of us on the other side of the X/Y chromosome divide made wild dashes to the house. Heck, maybe you still do.

But back to my dilemma. For women, at least for this woman, a 24-hour urine collection is a huge in­con­ve­nience.

The first hurdle is how to collect the sample. Again, plumbing is everything. My local healthcare system favors a “collector cap,” a flimsy plastic half moon that perches on top of the porcelain rim of the toilet, kept in place by the toilet seat and one’s body weight.

Except when it doesn’t. In practice, if one’s bladder was full and the collector cap is weighted down, extreme care must be used in shifting weight off the seat, carefully lifting the cap, and slowly transferring the content to the specimen jug. Sloshes, slips, and more than one unintentional spill are all part of the fun. And don’t even talk to me about the issues of what we euphemistically used to call “number 2” in grade school.

The collector cap poses additional problems, especially when it comes to storage during the 24 hours. It’s big. Yes, I have that oh so discrete large paper bag in the bathroom, but that bag does not fit under the little sink. And why bother trying to hide it? I’m using it, for God’s sake!

Fortunately, I no longer routinely have young children in the house. I’m thinking of my adult nephew, who as a toddler loved hats in the broadest sense of the noun. Buckets, bowls, plates: all went on his head at various times of the day. Had he been a child in this house on a collection day, there is no question in my mind that at some point he’d have toddled out of the downstairs bathroom proudly wearing a collector cap.

I shouldn’t complain, though. The Mayo Clinic does not believe in collector caps. The lab worker there just handed me a plastic cup and said “use this.”

Use this? Oh, please. Yes, I used it and yes, I will use it again next time I am at Mayo, but that took the up close and personal nature of urine collection to a whole new level.

Once I clear the collection hurdle, the next challenge is cold storage. This is a gender-neutral issue. Our bedroom is on the second floor. The refrigerator is on the first floor, along with a small half-bath. This layout means that any collection activity requires getting up, padding downstairs, collecting, pouring into and re­frigerating the specimen jug, cleaning up, and padding back upstairs. Up and down, up and down.

But I digress. The issue is storage. Cold storage, to be precise, as I am always told to store the collection in the fridge. Yes, that is what I have always aspired to: storing my body waste in my refrigerator ALONGSIDE MY FOOD (emphasis added).

Let me point out that I am not a germaphobe. I still defrost meats on the counter and eat raw cookie dough. I do not sterilize my tableware nor do I blitz my table and food preparation surfaces with a disinfectant. But urine in the fridge? (Never mind that the collection jars could pass for a half gallon jug of ice tea, which brings to mind a true college story involving some warring males and a pitcher of beer. I will spare you.)

My next scheduled collection poses some additional challenges for traveling, as I will be out in Portland and stopping at the Mayo Clinic in Minnesota on the way home. I have to get to Minnesota some 36 hours before my appointment so I can start the collection in a timely and appropriate fashion. A few friends asked me why not stay the extra time in Portland and collect there, then transport the urine on the plane.

Can you imagine explaining that to the TSA? “Yes, I want to walk on the plane with a bottle of body fluids and keep it with me at my seat.”

I think my biggest hurdle with the collection is not the inconvenience, the sleep disruption, or the spillage. Instead, it is related to an infamous local court case. There’s a reason I do a perp walk when I take in my collection to the lab.

Four years ago, a man came through our courts on the misdemeanor charge of criminal mischief. His mis­chief was attempting to collect urine samples in the bathrooms of fast food restaurants. (I might as well add that the reason he was so intent on collecting was because he then drank the stuff.) Not to make light of his mental health issues, which were considerable, but, truly, what is the difference (other than ingestion) be­tween him and me? Or, to be fair, be­tween him and my oncologists? Isn’t it a similar goal?

And isn’t it the same end product?

April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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