Letters From Cancerland: Potty Mouth
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
It's not been an issue for wife, who has been fighting MM for over 25 years as she and I live on the Nonsecretory Street in that subdivision.
April,.... My dear:
Three ( actually 4) suggestions:
1) Purchase a large funnel with a long neck, from an Auto parts store. They usually have a large lip on the top, with a hole, for placing a string, etc to hold away from the stream(s). ---$1.79
2) Fed-ex your pee (on ice) to Mayo's lab.--$20.00
3) Fill your bathtub or shower in ice cubes--place your B-J Red Collection Jug in the ice. ---$10.00 for 20 lbs ice--should last 24hrs.
4) NEVER, EVER, Cross the streams--bad things will happen !! ( Ghost-busters)
TSA ?? You are on your own--I have no clue how to deal with those folks!
Good Luck.
Glad your sense of humor is intact!
Why not use a blood sample to look for proteins? It is much easier.
eric:
At it's simplest---It's a rule in / out kinda thing.
Large sized Proteins (in urine) usually don't slide thru the nephrils (too big) --so it's a predictor of potential Renal involvement --and potential treatment options, down the line. It also reveals how the body is eliminating the excess Proteins --in the face of myeloma.
As part of the standard workup, I'm sure April (and everyone else), gets Serum AND Urine Phoresis.
Despite peeing on my hands, and keeping a half gallon of urine iced for a 150 mile trip--my J-B was negative.
There is (unfortunately) a valid reason for doing the Urine tests.
PS--Besides I gave the cooler to my butt-head brother. I was PA to him just once, despite a lifetime of his idiocy and antics. This should be required of all MM'rs...LOL!
Be Well.
check into the Female Urination Funnel at online outlets, as cheap as $2.
I don't believe a lab needs the entire collected sample. True, it wants to collect over 24 hours. Once it is collected, all that is done is to measure the entire volume, than fill a sample cup. (Once you know how much is collected over 24 hour hours (your work) and how much is in a fixed small volume (lab work) - math does the rest of the work.) I know people who mail the sample cup in without temperature consideration. I avoid high temperature during collection but don't refrigerate. I just think you want a blood draw during the 24-hour collection. I draw blood at the end.
Buy about 4 of the "blue ice" reusable ice blocks and store in your freezer. You don't even need an ice chest. I use a plastic waste basket covered with a towel to keep the cold in. You will need to switch the blocks a few times during the collection period. Works like a charm.
Sorry can't offer any advice on the collection part.
April, I have a small ice chest which hold two jugs and some blue ice packs. No fridge for me. Like the funnel idea.
On my last visit, he didn't order one. I fill a gallon ziplock bag with water, freeze it. Then got a cheap Styrofoam cooler. On the collection day, I just put the ice bag in the cooler in the bathroom, and put the jug in it.
We have something called 'the hat', euphemistically, a sturdy plastic item, which fits over the front of the seat. It seems to work fairly well, and also can use a small picnic cooler with a bag of ice to put the sample jar in. I found a collection lab close to my house which would take the sample, so that I didn't have to take it in to the cancer centre lab. This test is not specific to myeloma patients, I think, since it relates to kidney function in general. Maybe there is a lab where you are going that could take the sample and email the results to your doctor?
It is not like having a monoclonal test or SFLC test done, at a special lab. Luckily, I don't have these tests often, but maybe you need them every month?
This really made me chuckle. Six years of 24 hour urine samples have led to a lot of improvisation! One double wine cooler, two ice packs and a LARGE plastic cup, and it's a go. Have urine, will travel, and TSA be damned!
IN the old days, there were no free lights etc. So you did BJ every month. Cooler in the tub with ice packs solves a lot of issues. I went to the Target, Cabella etc. with an empty container to find one that fit with a few blue ices. Just take out, fill, put back (with lid). If you have real little kids, that is why the handle lid lock is for. And "flying" - you can't fly on a BJ day. In fact, you have to be an ACTIVE participant in you treatment so you can pick the right day to do it. Remember the cooler - can also go in trunk, if pressed, and take a small bag that will fit the jug (the third purse). When you are out and have to go, go to the trunk, come back with the jugs, do your thing, and put it back. Also, for the cap / aim thing, Google "Lady J adapter"
April, this takes me back to my days as an Master's student where as part of our laboratory work we had to collect a 24 hour sample. This meant carrying a urine bottle and collecting funnel around the college in a large anonymous plastic bag, to ensure we got the sample for refrigeration given into the lab as fast as possible!!
I have also had to do this for my hospital tests- thankfully in freezing winter time when at home as my toilet literally, a friend once noted, 'can freeze your backside off'. No need to put the collection bottle in the fridge then!
Aloha April,
You made me laugh out loud! Very funny.
Maybe women just complain too much?
Just kidding.
Thanks for another great article highlighting some of the absurdities of our disease. I'd always rather laugh than cry!
Much Aloha
Tom
I just logged on to read this, because I am...wait for it...in Rochester MN as I type. Doing what? Collecting, of course!
I found Craig's comments about lab not needing the whole sample to be enlightening. All these years I have wondered what the heck they did with the 24 hour sample. Squirt gun fights? Water the lab plants? Apparently not. This brings to mind Anatomy of an Illness by Norm Cousins, the scene in which he finally held up his hand to the constant blood draws and said "one draw, share the blood."
Great column, April!
For a long time, I've wondered how women deal with the challenges of Pee Day, as we call it in my household. Now I know! Your column could have been titled "Everything You Wanted to Know About Pee Day But Were Afraid To Ask."
Like you, I've also had to arrange travel plans around Pee Day to avoid confronting the TSA with my Pee Jug, which is, of course, slightly larger than the officially allowed 4 fluid ounces.
When I go into the clinic, I normally travel by train and the infamous NYC subway. Many times I've fantasized about the huge surprise a criminal would get if s/he stole my backpack on one of those rides.
Glad we can laugh about this stuff!
Mike
So good you wrote this article, I don't really have any additions. Glad that you made it amusing because it is a drag whenever I have had to do it.
Thanks for this article, made me smile today. I don't have one scheduled for a while so I will read this again, when that comes.
Thanks for the laugh!
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