Archive | March, 2017

Sacrificing an Organ ….

21 Mar

I’m convinced, due to my own experience, that we don’t really appreciate food. We probably really enjoy a special meal when we’re out for an evening but even then I don’t think we REALLY appreciate food.

Food – the flavor, the satisfaction of the taste on our tongues, the different textures PLUS the time for social interaction with good friends around a wonderful meal are so important to our emotional well-being … just as sitting down to a rather normal evening meal after a difficult day at work is. When those things suddenly are missing in our lives we are impacted in a variety of ways; not the least of which is a tremendous sense of loss.

I’d been having digestive issues perhaps 1 to 3 times a year since way back in 2009 when I was having chemotherapy for breast cancer. At the time of the first several attacks I simply associated them with the chemo. When they continued the years following the end of that treatment, they were infrequent enough not to cause unusual concern.

For anywhere from 1 to 3 days I was incapacitated several times a year with nausea, vomiting & the associated inconveniences. I could never pinpoint an association to a specific food. When a couple of attacks interfered with something very special I had planned, I finally saw a gastroenterologist.

Diagnosed with acid reflux, I was subjected to all the “purple pills” in the available arsenal of medicines that were known to treat that illness. And I had a gastroscopy that revealed an esophageal condition called eosinophilic esophagitis; an esophageal reaction to an allergen, most likely food. Since I had no symptoms (swallowing difficulties), I wasn’t treated for that. But my attacks of nausea, vomiting & that other stuff persisted, still on a 1 to 3 attacks per year basis. In between attacks I ate what I wanted. It was weird.

Suddenly the last of November in 2016 everything changed. The attack episodes kicked up a notch & I began having an attack every-other-week through December. Now, December is a very important month to me as it probably is to most of us. The food is pretty spectacular at Christmas & throughout the holidays & my birthday is December 31. Not only did I miss most of that because I was AFRAID to eat after a while, I missed the entire winter season while trying to find a reason for the attacks & began a medical odyssey the likes of which I could never have imagined.

Because I woke up first thing in the morning with the attacks, I became afraid to go to sleep.  The GI guy had me sleeping almost sitting straight up because of the acid reflux thing & one of my medicines gives me insomnia. A good night’s sleep became an impossibility.  And I was afraid to eat anything that wasn’t on my increasingly brief list of tolerated foods. I was a psychological mess in addition to all the physical problems.

Our lives changed drastically.

Through January & February I had every kind of “scope” known to man & the medical community. If I had an unfilled orifice someone found a way to stick a scope in it. Everything was negative except for the eosinophilic esophagitis that was asymptomatic. It was frustrating.

I put myself on a very bland diet. Afraid to eat anything other than bland … meaning “good,” … I started losing weight. I figured a little weight loss was a good thing but by the time I made some definite decisions about what to do about the attacks,  I had lost 15 pounds, most of which I didn’t need to lose. My list of tolerable foods was short, my dessert was Jell-O only & my snacks consisted of oyster & Animal Crackers. All crackers & Jell-O & no real enjoyable snack foods made me a very dull girl. I was use to cookies.

To make a long story a little less long, nurse that I am, I started thinking my symptoms sounded a lot like gallbladder attacks so I asked my GI guy to please do a gallbladder ultrasound. He agreed & ordered it but said he didn’t think that was the problem. The results came back “abnormal.” While I didn’t have gallstones, I DID have “sludge.”

It became evident that if you don’t have gallstones the size of Cleveland, very few medical professionals take you seriously. BUT … I was an OR nurse for more than half my life & I KNOW “sludge” can make you very ill. So I pursued it.

Throughout January & February I saw no less than 5 doctors & had enough bloodwork to justify a zipper in a vein if there were such a thing. 3 agreed with me & believed my “sludgy” gallbladder was causing my suddenly very frequent & unpleasant attacks. One said he didn’t think it could possibly be the cause & the 5th. doctor became a fence sitter.

After being an OR nurse for so many years, the last thing I wanted to consider was surgery so I did everything within my power & what medical expertise I possessed to avoid a cholecystectomy (surgical gallbladder removal). The last physician I saw before making my decision was an allergist about the esophageal thing. He tested me for 70 food allergies, all of which were negative & said he believed my problem was digestive & not esophageal or due to an allergen.

So I made the decision to have the gallbladder surgery. Suddenly sacrificing an organ became a small thing in the grand scheme of getting my life back & enjoying food again.

Cascading events …………..

As so often happens, especially if you happen to be a nurse, I ran into a set of cascading events. As I was beginning to lose significant amounts of hair, was very cold & tired – most of which I attributed to the GI attacks, my medical doctor discovered my thyroid levels were extremely low & she began treating me for that; promising I would feel better soon. It couldn’t have happened at a worse time.

For months I had had my annual mammogram scheduled & that came just 3 days before my posted gallbladder surgery. Because of my previous breast cancer, the annual mammogram always fills me with anxiety … anxiety I didn’t need while preparing for surgery & dealing with significantly lower thyroid levels but I’m a tough old girl & made it through … stressed to the max but very glad the mammogram, at least, was negative.

The Dominoes continued to fall. Once those darned things get started, you just can’t stop them & I still had some unpleasant cascading events ahead. I could not have imagined ….

Surgery, thankfully, went without problems. When I was dressing to leave the hospital I realized I had a terrible sore throat so I asked the nurse to take a look. With flashlight in hand, she reported that my uvula (that little hang-down thing in the back of our throats) was red & very swollen. The injury was due to intubation prior to surgery. She spoke to the anesthesiologist about it & they sent me home sucking ice chips. The post-op discharge pain medicine seemed to decrease the throat pain as well.

Saturday morning, back home, after breakfast I noticed something in the back of my very sore throat … coughed it up & found out it was the tip of my uvula, so traumatized that it simply sloughed off. This would ONLY happen to a nurse … sigh.

I just realized there’s no way I can make this a short story so my apologies to those struggling along with me.

Day 2 post op …

After lunch, which was difficult because of the uvula discomfort, I attempted to “keep things moving” & did quite a lot of straining. This resulted in a colon bleed of fairly significant proportions. My doctor sent me to the ER on Sunday evening. After being examined & seeing 2 doctors I was admitted to the hospital.

It occurred to me that I am older … not as resilient … & that I didn’t really want to die. I had the gallbladder surgery in an honest attempt to be able to do nothing more than eat again. Mortality due to a colon bleed seemed anticlimactic, yet absolutely possible & my stress level went up to “arc weld.”

I was hospitalized for almost 3 full days, none of which I was fed anything but IVs because the looming possibility of surgery was always right there with me. I saw 4 doctors (one was my original surgeon, thankfully), 2 nurse practitioners who were wonderful & one surgeon “on call” who suggested I might have to have my colon removed as a last resort. I told the nurse in no uncertain terms that he would not TOUCH me.

I had blood work no less than 2 times a day & a full assortment of x-rays. If I don’t glow in the dark it’s a miracle.

My original surgeon … the voice of reason in that cataclysmic void … assured me that even though no one could find the source of the bleeding, it would resolve itself. I was counting on him knowing exactly what he was talking about. Around mid-day on Tuesday, that’s exactly what happened & I was discharged from the hospital … given a clear liquid diet & 5 more pounds lighter.

So now I’ve been home a week & the gallbladder surgery was 11 days ago. My husband took a week of vacation to stay home with me but he is back at work now. This week has not been without its difficulties but I believe we may have finally turned the corner sometime on Sunday night.

I’m better …

I’m still taking special care about my diet, mainly because of the colon bleed & not wanting to eat something that would kick off an episode of nausea & vomiting. Heaving is not on my dance card until my gallbladder has healed a bit longer.

Was it all worth sacrificing an organ? Yes … if everything works eventually & I can eat like a normal person again, it was.

As I’m slowly introducing different foods into my diet, I’m looking forward to the day when I can eat a full meal filled with diversity & shared with friends.  Someone gave me a case of Cadbury Crème Eggs, which is the light at the end of my tunnel & my goal for full recovery.

Gallbladder surgery is a simple thing these days. They use a scope through buttonhole incisions & most people are back at work in just a matter of days. But I DO caution you no matter what you’re undertaking medically or surgically if you happen to be a nurse. Dominoes & cascading events follow us around like flies on a pile of very ugly stuff. Do your research & make sure whatever course you’ve decided to follow, you are prepared for events that seldom happen to “normal” people. We usually survive because being a nurse has made us not only tough, but REALLY tough. Just be prepared … this can happen to you.

20 pounds slimmer as of Sunday, today I’ve finally gained a pound. My butt is gone & I miss those curves in my jeans & in the mirror. 6 months ago I couldn’t have imagined hoping to gain weight. In the grand scheme of things, I guess it’s all relative.

 

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The Quiet Room

7 Mar

The room is lovely; serene & conducive to quiet speculation or whispered communication. The swirls in the mint green carpet complement the upholstery on the chairs, the hardwood sections of the floor & the paintings that adorn the walls. Even with the obvious hand of a decorator, it remains a nondescript room for waiting but adds some of the comforts of home like fresh coffee in a coffee maker, a small refrigerator stocked with canned drinks & little baskets filled with cheese crackers & various other cracker snacks.  A large flat screen TV hangs on the wall, its audio kept at a somewhat subdued level for those who are inclined to watch. Significantly, there is a box of tissues on the coffee table.

This morning there are 12 of us filling most of the seats. It is quiet & we don’t immediately speak; faces lost in thought; eyes seeing some far away image of a life well lived or a child waiting to be loved. Most of all there is sadness; not only in the eyes of those sitting & waiting, but it seems to hang on the well-appointed wallpaper, left there from years of women who have gone before us this morning & waiting to be brought to life by some memory or word that has been said there far too many times before.

We’re all wearing the same thing – our uniform; a long hospital gown made of the same fabric tied in the front….except for the elderly woman to my right who has tied her gown in the back in the usual way unable to understand that here we wear them differently. We tied them in the front for easy access & there’s something sad about that, too.

We’re all sharing space in this room together because of a similar condition. This is the Breast Imaging Center & it’s not the place most women go to get their annual mammograms.  On the contrary … this is where we go to get follow-up mammograms when the original one we got is somehow defective or irregular or abnormal. This is why we share the silence today & the hollow-eyed vacancy of a stare with tears & fear just rippling under the surface.

Some of us are here for the first time. Some of us are repeat attenders … we’ve gone down that breast cancer road & from that day forward we have come & will continue coming to this place for our annual mammograms because we are survivors hoping to continue to be just that – survivors. We are somehow forever different & we gather here annually to check & recheck our status, hoping for the best.

Because this is soon to be my 9th. year of survivorship, I break the palpable silence. This isn’t my first rodeo but I can look around the room & almost guess whose it is. Even more women have entered the room & taken a seat wearing our uniform. The eyes are a bit more frightened, a bit more haunted, a bit more filled with longing & sadness. I know what’s going on in the minds behind the eyes. I’ve been there… but today I say, “There couldn’t be any women in Lynchburg today because we’re all here.” There’s laughter & even gratitude in some of the faces … gratitude for hearing one of us speak & leading the way to conversation.

We all have such unique stories about how & why we’ve ended up here this morning together & some of us begin to share them … to break the ice … to reach out to our sisters because that is who these women & I have become. Sisters in the fight against breast cancer. One woman observes, “Women really have a lot to deal with” & we all agree….because we’re HERE.

In time some of us begin to tell our stories or ask to hear someone else’s. There’s comfort in numbers, whether sharing a similar experience or learning from listening to the telling of one by others.

Our circle, like our numbers is fluid. We begin with 12, then 15, then 9 as we are called individually to have our mammograms. Some are annual mammograms like me who are there because we are survivors & regular mammogram centers don’t process us anymore. Others are first-timers; there to follow-up on a suspicious mammogram with another mammogram & possibly an ultrasound that will change their lives forever.

I remember being at that stage & I say a prayer that today’s mammogram will be unchanged. I say additional prayers for my new found sisters who will receive life-changing news this afternoon, regardless whether it is positive or negative. Just crossing the threshold of this room today for the first-timers is a life changing experience. For those with bad news, that life changing news will catapult them into another realm where they will be tested as to strength & durability as they tentatively begin their journey down the breast cancer road. For those who are negative & have only experienced a scare, life at mammogram time will forever be tainted with more fear … fear of the “what ifs” & the unknown.

Today I am relieved that my annual mammogram is unchanged. I’ve been here so many times that the staff is more like friends than ‘staff & patient.’ I am hugged by one of the mammography doctors. She is my friend after these many years & she knows, like I know that she & I are sisters & part of that sisterhood of women threatened by breast cancer. As we hug we silently rejoice in the knowledge that today we are both free of that darkest of passengers.

My husband is waiting for me, his brow creased with worry until he sees me & I smile. He tells me how worried he’s been & he kisses me. He gives me a yellow dandelion he’s picked for me because he doesn’t have real flowers. I take it gratefully because it is a treasure & a symbol of the goodness of the day.

On the way out of the building a woman rushes up to me smiling. She & I sat side by side in the waiting room, sharing stories of our illness, which resulted in sharing stories of our courage with a sister who understands.

I tell her I am OK & she tells me she is, too. We hug as though we’ve known each other for ever, but that’s what sisters do. I introduce her to my husband & they shake hands. She is beaming.

We exchange names & promise to keep in touch through Facebook.

She leaves before we do & there’s a spring in her step … a good news spring & I wonder if I have that same step … but I’m sure I do.

This morning the size of my family has increased & that both makes me glad & saddens me. I’m glad to have shared a moment in time with a waiting room full of special woman but my heart aches for every one of us who has ever or will ever hear those words, “You have breast cancer.”

Before my new friend leaves, I tell her I hope all the women we shared the morning with are cancer free & she agrees, even though we both know that is unlikely. We HOPE because our family circle has increased & we want the best for all of them … our new sisters.

And so we HOPE ….