Archive | April, 2014

Suppositories: Useless Against the “Scares”

21 Apr

WARNING … RED ALERT! This blog entry may include references to bodily functions. If you are squeamish or prefer to pretend these things are not part of the endowment we received from Mother Nature, then maybe you’d best read no further. I’m likely to mention delicate issues that you may find, if not offensive, at the very least disgusting. But ask Mother Nature … that’s life.

I’m not easily bothered by much of anything, except spiders maybe, so a rousing discussion of bodily functions in the nurse’s lounge at lunch was no problem for me or my nurse colleagues. While some don’t understand how we could have those conversations at lunch, others simply can’t understand how we could EAT lunch. In the end it’s all relative.

The “Scares” is a term used somewhat loosely (& that pun WAS intended) by some southern folks to describe diarrhea. I guess that terminology sprang from the fact that if one is “scared” badly enough, diarrhea may result depending on the nature of the fright. It’s also sometimes referred to as the “Runs,” the “Trots” & even in some northern circles, “The Coney Island Quick-step.” We’re all familiar with the terms & many more I’m guessing,  but what it boils down to is that a rose by any other name remains a rose … unless it’s the “scares,” which is a degree worse on the scale. Suffice it to say, if given a choice most of us would opt NOT to have this condition in any form unless it’s worth dropping 4 pounds in 2 days, which I did recently… & it wasn’t.

Eosinophilic Esophagitis is my diagnosis. I’m a huge believer in the doctrine that if you can’t PRONOUNCE it, you shouldn’t have to HAVE it but Mother N. doesn’t work that way.

Way back when I was having chemotherapy in 2009 I had my first attack. I actually had two attacks that year & we just chalked it up to the changes that occur from the chemo attacking everything … the bad stuff & the good. But it has continued without pause in the years since … two or three episodes a year.

I start off with burps that taste disgustingly like rotten eggs. Within a few hours I have my first actual encounter with the “scares.” This lasts unabated for 24 hours or as much as three days until the rotten egg taste goes away. Then the “scares” go away. Until the taste is gone NOTHING, not Imodium, Lomotil or a cork the size of Cleveland will stop the “scares.” I’ve tried them all… well, mostly.

While I have yet to find a physician ANYWHERE who has heard of the egg burp symptoms, hundreds of us flock to the internet to share our horror stories with other sufferers. We haven’t come up with a solution but we do find some measure of comfort knowing there are others like us “out there.”

Last summer I set out on a quest with my gastroenterologist to end these attacks, which are limiting, not to mention temporarily debilitating & just plain “scary” (sorry, I couldn’t help saying that). I had upper GI x-rays, gallbladder ultrasounds, a gastroscopy & enough blood work to keep a forensics pathologist busy for months. The diagnosis came back as EE, which is caused by a food allergy. I’ve unknowingly had EE long enough to have done some serious esophageal damage. My GI Guy believes that the EE plus some esophageal reflux is causing the egg burps & resulting “scares.” I’ve eliminated foods & food groups from my diet & even tried going gluten free, which involved purchasing very expensive cookies that taste like mud & macaroni that is surely made of cardboard. In the end, gluten wasn’t the problem for which I was thankful. Gluten free food is only slightly better than the “scares.”

So the GI Guy put me on medication that seemed to be working. Nothing even vaguely frightening has reared its ugly head since September … until last Thursday.

This attack was perhaps my worst to date with the inclusion of a new twist … nausea & vomiting. The worst part of this attack was that it came on a weekend that my club was having its 30th. Anniversary Party. As president, I put the party together to say “Thank You” to our members who work so hard all year long fundraising so we can support, among many other things, 3 welfare children & 2 senior citizens at Christmas, help keep the Salvation Army Food Pantry stocked, donate to local animal shelters hoping to give the tossed away animals in residence there a second chance at a “forever home,” & in many cases a second chance at a decent life. It also funds our annual contest that sends a local middle school student to Space Camp for a week. Having an attack of EE & the subsequent “scares” kept me from attending the party I’d been working on for a full year & that is one of the regrets of my life.

If I am at home with no commitments or plans, I can prepare for the siege since I usually have several hours before the egg burps turn into the “scares.” That gives me plenty of time to prepare my arsenal; to make sure my home is well stocked with ginger ale & aloe impregnated TP. If I have a commitment, a special event or an appearance out of town, my plans are shattered. Last year I spent a day in bed in a hotel in Charlotte, NC where I’d been invited to do the second book signing of my life after my book came out in January. I was able to sell & sign my books on Friday & Sunday & be on a couple writers panels but I missed Saturday altogether… my biggest day.

I spoke with my GI Guy on Saturday morning who suggested I should go to the hospital for IVs but I was too ill to travel. I have an appointment with him next month & I will do ANYTHING to avoid another of these attacks. Once they become life altering, something has to be done.

If I can find some humor in this most recent attack it’s that when I spoke to my doctor on Saturday morning he increased my current medication dose from one to three doses a day, which seemed to help. He also sent me a prescription for an anti-nausea drug. He was “on call” & I called him very early in the morning. I was very sick & had been up for most of the night for two full nights so neither of us was thinking just right. And here’s that bit of humor … for my nausea he ordered a suppository, told me what he was sending me & it just didn’t register with me or apparently him that suppositories are totally useless against the “scares.”







A “W” on the Back of Our Necks ….

10 Apr

Recently, as I was checking out yet another few strands of extremely light hair that I hadn’t noticed before & while I was trying to convince myself that it was just another shade or hue of blond, I began thinking about aging. I started wondering about the signs of aging that really bother people.

While gray hair may have bothered me several years ago, it simply doesn’t anymore. After losing my hair to chemo I am happy to have it back, no matter what color.

As it was coming back after chemo it grew in very curly in the back (I’d never had curls before) but the crop on the top came back soft & unbelievably snow white. My husband remarked that he thought I might just come out the positive end of the cancer tunnel looking a lot like a skunk. While I have nothing against Pepe Le Pew & his family, it never occurred to me that chemo might make me a charter member of the Le Pew clan. The strange thing is… I didn’t care. I was so glad to have my hair back, it could have been purple for all I cared (& in today’s society I would have fit right in & no one would have given me a second glance). With the help of a skilled hair colorist I was able to get my color back until both the startling white & the curls grew off & I was back to normal again.

Here’s a lesson for us all: if you must undergo chemotherapy for whatever reason & lose your hair… keep it. As I was losing mine I saved it all in a WalMart bag that I kept under the bathroom sink. I’m not sure why I kept it but I believe it was simply my way of dealing with the loss. When people asked me if I’d lost my hair I would say, “No,” which, in the grand scheme of things wasn’t a lie. I knew exactly where it was.

When my hair came back snow white, I took my WalMart bag to a colorist & told her that was how my hair looked before chemo & that was how I wanted it to look again. And that’s what she did … made me look like me again & I will be forever indebted to her for her skill. I also have patted myself on the back for having enough forethought during a difficult time to save my hair, for whatever reason.

Another thing that bothered me a bit several years ago was those fine lines that we see on our faces through our triple X magnifying cosmetic mirrors long before anyone else notices. Thanks again to having had the breast cancer experience, I just don’t worry about those lines anymore, even when they start becoming visible to my naked eye WITHOUT the cosmetic mirror. My perspective has changed drastically. The acquisition of a few crow’s feet & the deepening of fine lines indicates that I’m still here … that I continue to be around marking time even in SPITE of having had a run-in with cancer. So the lines are OK & they add to the character I seem to be acquiring as my blond hair takes on a lighter hue.

But I started thinking about what signs of advancing years bothered other people. With a few carefully asked questions I found out how the aging process has touched some of my friends, who shall remain nameless.

A friend of ours told me, as he was approaching 60 that he would arrive at that milestone “Kicking & screaming all the way.” Yet when the time came, he crossed over into that next decade with grace & dignity. Another friend who has not arrived at that point yet grooms his beard with assistance from Just for Men Beard Color & never complains.

Breasts are another issue for many women. It’s difficult to watch perky nipples transform into ones that seem hell-bent on surveying your navel & your toes unless you are quite athletic & can spend most of your time standing on your head. A friend who has very large breasts told me that no longer being able to run & jog frustrates her but she has stopped as a means of self-preservation.  When I told her I didn’t understand she explained that as she’s aged her large breasts have turned into “knee bangers” & she fears if she jogs at any reasonable speed her recently relocated breasts will beat her to death. We all have our crosses ….

More & more of our friends are having cataract surgery & are adding layers of lenses to their glasses. Root canals are coming up more often in conversations as are Glucosamine, steroid injections & joint replacements.  A friend told me that if she has one more joint replacement she will be classified as “suspicious” & will be placed on the “Flight Risk” list at most airports. Her bionic joints keep setting off the metal detectors. But she’s still walking & doing it without pain, so I guess carrying a “joint replacement identity card” actually is less inconvenient than hobbling onto the plane with a cane or being dragged across the street by a Boy Scout (do Boy Scouts still do that?)

My husband, the most easy-going, least stressed or worried human I know asked me not too long ago to look at the back of his neck. I did but didn’t see anything unusual & told him that. He asked me if I saw a “W” back there & explained that as a child he often sat behind his grandfather & would look at the “W” on the back of his neck; a configuration of wrinkles formed as a result of many years working in the sun. He said that of all the visual signs of aging we encounter the one he most dreaded was getting a “W” on the back of his neck. I assured him, as he’s gracefully aging, that his neck is still devoid of the dreaded “W” & that he has quite a bit of the alphabet to go through before arriving at the W-end.

I don’t think any of us look forward to being elderly. I know that I’m fearful of having some youngster pluck unwanted hairs off my chin “over at the home.” That’s a visual I can do without & probably my last remaining fear.

Mostly, we can do little about the signs of aging, although there are a few great creams out there that reduce the appearance of fine lines & several prescriptions that will keep our bladders at bay until we arrive at the nearest public restroom. In the end (maybe that’s not the best way to phrase it) we are fortunate to be around to acquire those lines & the perk that is the wisdom that goes with them … & helps us accept them.

At 25 we simply didn’t realize what we had. If we’re lucky, we remember 25 vividly & realize just how much we’ve accomplished & continue to accomplish as we acquire that “W” on the back of our necks.