A day or two after the procedure, when I was getting more of my wits about me and accepting the barbed wire hose down my throat, I started asking for “the picture”.  My nurse told me it was in my chart, but she really felt that my surgeon should be the one to show it to me so she could address any further questions I might have.  What? Me? Questions?!?!  It wasn’t too long after that when Dr. O came into my room and said she had the picture.  She handed me this:

She was happy that it made me laugh.  I love it that my surgeon has a good sense of humor and can communicate so well with me. It really makes all the difference in the world.  At least in my little world, it does.  I had just told her the day before about the “zebracorn” when she saw the stuffed zebra  sitting in the corner of my room – a gift from my co-workers to hold against my abdomen after surgery.  I didn’t expect her to even remember the story, since it was one of those personal quirky things that I thought only mattered to me.

Then, she gave me this one:

Kind of looks like a brain.  A 7cm (approx. 3″) brain  ************************************ (actual size) (on my laptop, but, probably not on a smartphone)

She also had the letter from Clinical Laboratory of the Black Hills to Mayo Medical Laboratories that they sent with whatever it is they send when testing this kind of stuff.  The letter states that the sample is an “……..epithelioid appearing tumor.  I considered an epithelioid GIST; however, the CD117 is only weakly focally positive.  I look forward to your consultation on this case.” My surgeon had also originally suspected a GIST (gastrointestinal stromal tumor) when viewing the CT scan.  Although, she also said the consistency of this particular mass was not similar to other GIST’s she had removed.  She also reminded me that she had previously only seen a few of this type of tumor because they are pretty rare. Upon reading the letter, my thought was that if the CD117 (some scientific thing present in GIST tumors) is even only weakly positive, wouldn’t that mean that it was still “positive”.  And, what does that mean? Part GIST, part zebra, part unicorn?  Then, I put it out of my mind and figured I would just wait for the expert opinion from Mayo.

I have a unicorn tattoo on my shoulder that I got 29 years ago.  I think I may have some stripes added to it.

The mass (otherwise fondly referred to as the “Zebracorn”)  was not specifically attached to the stomach or small intestine but on a vascular pedicle (like a skin tag) to the stomach.  They had to make a small cut in the stomach to remove that.  Otherwise, Dr. O. said it was right there waiting for her when she made the incision and she scooped it out.  She describes it as the consistency of jello.  (if this is too much info, stop reading at any time – it’s not going to get any better!!).  So, back to the hospital room……I wake up and it’s hard to swallow.  Hurts like severe strep throat with a golf ball sized wad of mucous (told you it wasn’t getting any better!!!) stuck in my throat.  I’m literally gagging, choking, whining.  I’m told I have an NG tube.  Short for nasogastric but I say short for “no good”!!   I was assured that the result of not having it would be much worse than the short term discomfort.   I immediately offered $20 to remove it.  No such luck.  Have to keep it in to drain stomach since they had to make a small cut and stapled it.  Without the tube, I’d be throwing up.  The thought of that was definitely, most very definitely, disturbing.  Thanks to the epidural, I could barely feel the long incision in my abdomen, but that tiny tube in my nose and throat draining out my stomach contents was going to be the end of me.  Within a couple of days, the foley catheter was out, the O2 was discontinued, the epidural was removed (replaced by IV Dilaudid) and I was walking the halls with determination (and assistance). But that terrible, awful tube was still in there and I was up to offering $350 in bribes.  I whined like a baby and they all gracefully validated my moaning.  A few RN’s even had to push it back down in when it would sneak out a bit and I could tell they felt just awful about having to do that.  Evidently, it’s not fun on either side of the NG tube.  On day four, it finally came out.  Praise Jesus and all the angels.  I felt a freedom that I can’t explain.  I felt like healing could really, truly begin!!  I have had the most amazing care.  I’ve met nightshift aides and nurses that I’ve never met before.  Everyone is wonderful.  Seriously, wonderful.  So many departments are involved in patient care, including those most don’t think about……like, Materials/Supply!!  Although I will never feel the same about stocking those NG tubes now that I know how they feel!

So, I started it all with this Facebook Post:

I was hoping to have the pathology reports before bringing this up on FB, but it may be awhile and enough people are starting to find out about it and its out there in that “vague” Facebook way that is so frustrating for anyone who wants to “know more”. So, if you want to know more, here’s the scoop: I’ve had a pain, more like super discomfort, in my upper abdomen for a few months. My best description is I felt like I had a tennis ball in my sternum. I noticed it the most when I was off earlier this year to spend a few weeks with Dad. I guess because I actually sat when I was with him. I felt it the most after eating and when sitting. I finally made an appointment with a surgeon in April, thinking I probably had a hiatal hernia. I also started eating better and exercising more. The weight loss seemed to help and I almost didn’t make the appointment. My surgeon scheduled a CT Scan and an EGD. When she called me just hours after the scan, I knew something was up. Neither of us expected anything from the scan – just precaution. Well, there was a 7cm mass in my upper abdomen between my stomach and colon. (I’m not good with metrics, so I grabbed a ruler – 7cm is a touch bigger than a tennis ball). Not in an organ, but in the space between them. It appeared to be pushing on my stomach and my colon was curving around it. The mass appeared perfectly round and encapsulated on the scan. Dr. O (my awesome surgeon) thought it might be a GIST (gastrointestinal stromal tumor), but it’s not common and she really wasn’t sure what it was. She referred to it as a “zebra”. “It exists, but we don’t see them very often.” I asked my usual slew of questions: “Could it be a cyst”? “Could it be something left in me from a previous surgery”, etc. I was assured all of those things would be a “unicorn” and this was definately a “zebra”. This woman speaks my language! She consulted with several other surgeons and interventional radiologists. Together, we came to the conclusion that an initial biopsy would be unnecessary, the thing just needed to be removed and could be biopsied then. If it was “not-benign” (much better term than malignant!), then we would deal with it when the thing came out. My co-workers and I decided it was a “zebracorn” – because I do believe in unicorns and since no one was sure; lets just shake it all up a bit! It’s already really rare, lets just rare it up some more! They moved up the scheduled EGD to see if the mass had invaded the stomach. It was undetectable in the stomach – there was no sign of it from the inside. Very good news!! I did have a few polyps that tested negative and a small hiatal hernia. Actually, enough to cause my symptoms. So, at this point I’m enormously grateful that Dr. O. had also ordered the CT scan otherwise we may not have known until it had grown even larger and caused more issues. They scheduled my “liberate the zebracorn” on a day when the pathologist would be on-site so a cross-section could be tested immediately while I was still on the table. Tuesday, May 19th. I did not hesitate to schedule the procedure at the very same hospital I work at, Spearfish Regional Hospital. I work with amazing caregivers, and had the utmost confidence in the care I would receive. Anyone who knows me, realizes this is a huge thing for me. I have been in health care for almost 30 years and really try to have procedures including anesthesia, narcotics, full nudity and intimate details with complete strangers rather than people I see every day!!. Before going “under”, I gave explicit instructions to take a picture. I wanted to see this thing when I woke up. Best case scenario would be that the thing would just peel off the stomach and colon and pull right out. Worst case would be that it had attached to the organs and would have to be cut out and then repair the stomach and colon. So, my surgeon had one of her partners join her during the procedure. We knew it had to have a blood supply, but didn’t know yet what that was. They gave me an epidural (didn’t have one with either of my babies, but they are using them for some general surgery now, too – especially abdominal stuff), and the next thing I remember is waking up in my hospital room with an 8″ incision from sternum to belly button and approx. 25 staples. It was not a suspected GIST tumor and the pathologist was unable to identify it. It was sent to another lab in Rapid City and they also were unable to identify it. All we know right now is it “appears” to be an epithelioid tumor. So, it’s been sent to Mayo Medical Laboratories now and we are waiting on their expert opinion. I have absolutely zero anxiety or concern about this. I am totally, 100%, at peace. God is so very present in each moment that all I really feel is Blessed. Since there is more to learn and I’m off for the next 5 weeks, I’ll probably just start a blog or something. I really don’t think Facebook is the right forum for this kind of stuff. If I decide to start a blog, I’ll post a link to it here. I spent a week in the hospital and that was an exciting time that I’ll write about in my new, yet nameless, blog. I’m home now, and that’s exciting too. My dog is happy. And, I have a comfy chair. All is well.