Cut Me, Mick

WEDNESDAY, OCTOBER 7, 2015

Thursday, October 1st. It’s MALS release surgery day, baby!

I had to be at the surgery center in downtown Cleveland at 5:15am, so my morning began at the ass crack of 4:00. My alarm went off and even the dog didn’t move. I hopped in the shower to get ready to go. I had to extend my “summer maintenance” for a few more days and shaved all locations necessary in the southern hemisphere. (You’re totally welcome, surgeons.) Just after that, I applied the antiseptic stuff the doctor had given me to my abdomen. Two pretty big hits of the runny red liquid. I realized I should have shaved after applying the cleanser. It burned. I later read the directions which said to apply a small amount only to the area of the body being operated on. Glad I didn’t go with my original plan of dousing my entire body, figuring I’d rather be safe than sorry.

Ready to go and we fly downtown. Zero traffic and we make it there in plenty of time. We check in, take our seat and wait to be called back. (“We” is me and my husband, whose response when I originally told him what time I had to be there was “Good luck with that.”) #insicknessandinhealth

My oldest sister has now arrived and I’m back in pre op. I had said to my mom the night before that the only thing I truly get a little stressed out about when it comes to pre op is the insertion of the IV. I have zero fear of needles, but for some reason, an IV causes my ass to pucker and I get a little skeeved out. Along with sharing my anxiety, I also related that I’ve always had good luck with them. Never once have I had an issue. That was a very stupid thing to say out loud the night before a pretty major surgery.

The IV lady comes in to pre op and asks which vein I’d like to use. While I appreciate the thoughtfulness of  that question, my answer is always the same: whichever looks the flipping juiciest. I don’t care. Just hit it. She finds one that “might work” and injects, noting that I’m pretty dehydrated so my veins are almost non existent. Right side, back of hand: MISS. With that, she leaves, saying it’s protocol to give the patient a little breather after an IV miss and that she’d send another nurse in for the next attempt. Sweet.

IV lady number two comes in and she is armed with a needle full of numbing medicine and an IV needle the size of Rhode Island. SONOFA! She hits me with the “pinch and a burn” numbing medicine and I’m cool. Then before I know it, the IV is in. What the what?! I didn’t feel that. At all. Why not just start with the numby numby goodness? Left side, back of hand: HIT. (I’m later told just before wheeling me into surgery that I’m going to have 3 more IV’s inserted and that one might be into the artery in my neck. *ass pucker* In recovery, I learned that these were the moves they made: left side, back of hand #2: HIT; right side, under side of wrist: HIT; and right side, bend in the arm: HIT.)

I remember saying “hi” and “good morning” to everyone in the operating room. From their reactions and responses, I don’t think they get that very much. (Nor does every… single… other… person we passed in the hall on the way to the OR.) As they rolled me up next to THE table, I look up and see the clock. Surgery was scheduled for 7:45:00 and the clock read, I shit you not, 7:45:03. I immediately noted the time, told them how impressed I was and asked if there was some sort of comment card I could fill out. Maybe they laughed? I don’t really remember. Anything after that…..

Panic #2 for me (after the IV) comes in post op. Two words: bed pan. I’ve never used one and come hell or high water, I am not using one today! I heard I had a pee catheter in me during surgery and that’s totally fine, because I didn’t know about it. And while I could have gone the rest of my life without knowing it, I’m fine with that. But a bed pan? Awful. It’s now 4:35pm. (I think.) I’m finally awake enough to kind of look around the room, see what’s going on and realize “Oh, garbage. I have to pee.” So I wave down a nurse and say “I need to use the restroom” to which she replies “I’ll go get you a *gulp* bed pan.” (I swear to you she gulped! OK, maybe not.) With every ounce of energy I can muster, I eek out “No! I can walk to the bathroom.” Alien stare. “I’ll have to check with your nurse to see if that’s ok.” *please be ok. please be ok.*

I get the green light to get out of bed and walk to the bathroom. I can only imagine that I looked like a drunk on the street trying to pass their sobriety test while on my way there. Holding on pretty tightly to the IV stand with one hand while making sure my ass isn’t hanging out of my Diane Von Furstenberg with the other. (No, really! I found out she designed the gowns at Cleveland Clinic. *or maybe I was punked with that*) I somehow make it there and back without falling over or having to tap out by pulling the red “help me” cord. Success! And I take comfort in knowing that this will be another hospital stay down without the use of a bed pan. And this is a very big deal for me.

They find me a room around 5:00pm and I’m whisked away to what turns out to be the equivalent of a room at the Belagio. I tell you, Vascular Surgery Step Down’s got it going ON. I lucked out and got a private room with a nice TV and a lovely window. There was a comfy (I assume) Lay-Z-Boy chair, 2 other chairs and a bench that pulled out to a bed. And the nurses?! Oh my world, they were ON POINT. Leslie, Elarry, Marina and a CSU nursing student, whose name is eluding me right now. (Yikes.) I was given tremendous care.

But no one has cared for me like my mom. She puts her life on hold to help me with mine. Taking time away from my dad, her own house and her own commitments to make sure that I can function every day. And that my house, my family, even my dog, function every day. She is amazing. I am so incredibly blessed to have her and there are no amount of words I could ever say to express to her how much I love her.

So now we wait. I’m 6 days post op and feeling all of the normal wear and tear of a surgery. Things ache. My lungs hurt. My incisions are sore. I’m tired. I can’t walk very far or sit up for very long. ….and I’m nauseous at times. These are typical post op symptoms that are getting better as surgery gets further in the rear view mirror. So I guess I’d say my status is “day to day”. But aren’t we all.

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NOTE:
A huge thank you to Dr. Gabbard (GI) Dr. Kroh (GI Surgeon), Dr. Park (Vascular Surgeon) and all of the nurses and staff who helped me at the Cleveland Clinic. Those people are truly heroes and angels for what they do to help people on a daily basis. All my best and love to you all… and may I never have to see you again. 😉

CARLY!!! That was the CSU nursing student’s name. Carly. Thank you, lady.

An Interview with Myself

SUNDAY, JULY 26, 2015

I’d like to say that my GI Journey is complete, but alas, it ain’t. Shortly after the removal of two, granted unnecessary, organs, I started getting sick again. And since then there have been a lot of questions… by me… my family… friends… so on…  I thought I’d do a little interview with myself to answer them. Some questions you’ll know the answer to. Some you won’t. Some you won’t care about. But in my head, these are the things that people have been either outright asking me or have been wondering in their own minds. I may get gross. Deal with it. Or don’t. Either way…

Q: You say you throw up, like, “all the time”. Daily. Sometimes multiple times a day. And since May of 2014. If so, then why aren’t you rail thin and on a feeding tube?

A: I don’t know. And I maybe do know. I don’t know because I, like you, find it odd that I don’t weigh 80 pounds. I do, in fact, throw up daily. But here’s the kicker. I don’t always throw up food. Sometimes I just retch. Sometimes I throw up only a small part of what I ate. Sometimes it’s the whole shebang. This is the only reason I can think of for my lack of a dramatic weight loss.

Q: What’s the best thing to throw up?

A: Bacon. Hands down. It is the same salty goodness coming up as it is going down. It really is true that everything is better with bacon.

Q: What is the worst thing to throw up?

A: There are different levels to this answer, based on various categories. There are things that just outright taste like garbage coming back up. (chips, salsa and a strawberry margarita) There is also the terrible texture element. Things that cause some physical pain as they export the esophagus. (popcorn) Some things burn and are unnatural tasting. (Ensure. Ever chew a pill you weren’t supposed to? Or let an aspirin sit on your tongue a bit too long? That’s the taste of Ensure on the rebound.) But the all time worst thing ever, in my humble opinion? Anything dairy based. Instant rotten milk. It’s a nightmare.

Q: Where’s the worst place to throw up in public?

A: Oh… so many to choose from! Really, any public place sucks, because it is embarrassing as hell. I assume everyone who has ever heard me thinks I’m hung over. Unless I’m at a restaurant, then I assume everyone thinks I’m bulimic. But probably the hands down worst place was the Elyria Walmart. It’s a friggin Walmart, for crying out loud. That was my rock bottom. (Sidenote: I threw up at The Memorial Golf Tournament at Muirfield Village Golf Club this summer. Air conditioned port-a-jons. Pretty classy!)

Q: You sure do talk about barf a lot. Don’t you think it’s kind of gross and inappropriate?

A: No. It’s been my life for over a year. My world revolves around knowing where the closest bathroom is. Knowing when the teachers have their lunch breaks so I don’t use the lounge at that time. Worrying about the health of my esophagus, tooth enamel, whether there is back splash on my tank top. So no. I make a joke out of it. And I laugh at it. Because if I didn’t, what is the alternative?

Q: You are really pretty.

A: Why, thank you.

Q: OK, so what now? Where do you stand?

A: I have been diagnosed with MALS (median arcuate ligament syndrome). I had a Celiac Plexus Block done just about a week ago that is supposed to help solve my problem, and much to my delight, I have only been sick one time since the procedure. If it continues to work, I will speak with a surgeon about fixing the problem *permanently*.

Q: Last one for now. We always want to leave our readers wanting more. What has been your lowest point and what has been your highest?

A: Lowest, by the sum of one gazillion, is shitting myself… alone… at the Cleveland Clinic after one of my tests. But now, months later mind you, it’s also one of the funniest. My highest point? That happens daily. It happens when I wake up every day and live my life as if I don’t throw up all the time. It happens when I do a Color Run 5K with my kids or go on vacation with my friends and family. It happens when I write a blog post and laugh at myself and share things with people that are happening to me. I just keep going. And that keeps me high.

My GI Journey

FRIDAY, JANUARY 23, 2015

It began in late May 2014 with what I thought was a 24-hour flu bug and ended on January 14th, 2015 in an operating room having two organs removed. I went through 8 months of nausea, almost daily vomiting, weight loss, weight gain, feelings of being full all the time, pain, discomfort, constipation, heartburn, and reflux. I suffered an all around gastrointestinal nightmare from the bottom to the top.

My “GI Journey”, as I’ll now lovingly call it, started simply enough with a trip to my family doctor to discuss my symptoms. His reaction was that I was having gallbladder issues and ordered an MRI. The results came back and much to my delight, I was told I had a polyp obstructing the opening of my gallbladder, causing my issues, and it was recommended I have it taken out. Hallelujah!! I was convinced that this would become a long, drawn out, test-after-test process and they may never find out what was wrong with me. To hit the diagnosis out of the ballpark on the first swing at the plate?! Sweet! From a copay savings perspective alone, I was over the moon.

I scheduled my appointment in mid June 2014 with Surgeon #1 and whistled my way there. I’m getting my gallbladder out! Woohoo! No more “Hold on one second, kids. Mommy needs to throw up real quick before we head off to school.” Life was going to be good again. Until Surgeon #1 broke my heart with one simple phrase: “It’s not your gallbladder.” What the what?! With a referral to see GI Doctor #1 and 2 prescription slips in my hand, I left Surgeon #1’s office, tail between my legs.

Now from June 2014 to January 2015 was just a ginormous cluster. If I went in to every single detail, this would quickly become the length of a novel, so instead, I’m going to break it down by the numbers. Over those 8 months, I saw 5 different doctors. I was diagnosed and/or misdiagnosed with 4 different medical ailments: gallbladder, Gastroparesis (for which GI Doc #1 wanted to insert a pump into my stomach), GERD and Functional Dyspepsia. I went to 8 different medical facilities where I had 11 different medical tests performed: 2 MRI’s, 2 endoscopy’s, 2 gastric emptying scans, a HIDA scan, a small bowel series, a brain scan, a hydrogen glucose breath test, and an upper GI. I’ve been on 6 different medications and had 2 trips to the ER. I even collected 3 different cards to carry in my wallet stating that I was radioactive from the dye injected in to me. (You know, just in case I needed to get through a metal detector any time soon.) I drank what felt to be gallons of barium and spent countless hours having the tests performed. (The quickest was done in 45 minutes while the longest took upwards of 4.5 hours) I had 5 IV’s and 5 rounds of bloodwork. The financial cost? I honestly don’t know. And for the sake of my sanity, it is probably best that my husband keep handling the bills that arrive.

With GI Doc #2 now admittedly stumped, he passed me on to Surgeon #2 in the beginning of January 2015. Surgeon #2 listened to me, looked at the very first MRI taken of my gallbladder and said “I am convinced this is your gallbladder and it should have come out in June.” A short time later, he followed that magical phrase up with another fantastic line: “You’re not crazy.” I wanted to marry the man. He believed me. He had seen “me” countless times in his office. Poor souls like myself who had been through the ringer, only to have every test show that that are “healthy”. My symptoms lined up to a tee with the useless organ that causes those symptoms, so he wasted no time in scheduling my surgery. Six days after that appointment, it was so long gallbladder… oh, and appendix, too… which was also very unhealthy and would have ruptured.

I can look back on certain things now and laugh a little. Laugh at things that were ultimately the lowest points in a very low point in my life. Like running over to the school’s gym a few times a week to throw up in the back bathroom so I could have some peace while I puked. Or the time I threw up in the Walmart bathroom. Lowlight. Or that one fun the time when I crapped myself at Cleveland Clinic’s main campus after one of my tests. I had spent 4 hours drinking barium, then walking, then an x-ray. Every 20 minutes. Drink. Walk. Picture. And then topped it off with a shot of some liquid fungus (that tasted like absolute shit) that was supposed to get things moving faster through my system. It did, but unfortunately at a very wrong time and left me stranded in my poo-pants in the middle of a bustling Cleveland Clinic building… FOR TWO HOURS. Just when I thought I could make it to my car, noooooope. And back to the bathroom I went. I can only thank God now that it was winter and I had a long’ish enough coat on to cover my rear.

Horrifying. From start to finish. From being given an answer out of the gate to then being told no. Being misdiagnosed or what was maybe even worse… undiagnosed. It’s a hard enough game physically to go through, let alone the toll it takes on your sanity. You follow the direction of the doctors you put your trust in. And as I found out, you just can’t always do that. So I learned. I learned that any time someone tells you that you need surgery (or in my case, that you don’t), you get a second opinion. And you CERTAINLY find that second opinion before someone puts a pacemaker in your stomach!

I’m 9 days past my surgery now and I’m feeling human again. I have a bit of a kick back in my step and color in my face. Color that my parents said they haven’t seen in months. I have thrown up twice, but it was totally my own fault. “Don’t eat spicy food, fatty food, fried food or dairy” is what the surgeon recommended for a few weeks until my body learns to function again without a gallbladder. My first offense was my dad’s spaghetti, which I can never pass up. The second offense came on my daughter’s 9th birthday when I ate a piece of her ice cream cake. (That one, I’d absolutely do over again.)

I’m looking forward to starting running again in about 5-6 weeks and getting in to regular yoga at home, which is a 2015 goal of mine. And mostly just learning to find the fun again.  It puts in to perspective just how incredibly crappy you’ve felt when you finally start feeling good again.

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NOTE: Dr. Brent Bogard with the Cleveland Clinic is “Surgeon #2” and the man I wanted to marry that day in his office. He is a great surgeon… patient, kind and genuinely cared about me and making me feel better. Before he left my side prior to my surgery, he grabbed my hand and said to me “May God be with you and watch over you.”.  I can not say enough good things about him and the quality of care he provided to me.