Before I consulted with a surgeon about the tumor, I had other health issues/questions related to CMS that I had to iron out first (heart palpitations and genetic testing). It was frustrating having to wait because all I wanted to do was talk to a surgeon…
When it rains, it pours, right? Just hand me an umbrella…
In the midst of my appointments and waiting… I was trying to distract myself… Luckily I got to go see Kenney Chesney in concert around the time I was FULL of stress and anticipation of what was to become of my thymus tumor…
I’m usually a “glass half full” girl…
But sometimes, I need a refill! …And two shots of vodka or Fireball, STAT!!! Wait…not shots, that’ll make me sick. Make that two mixed drinks…something girlie and fruity! Mask the taste of the alcohol cuz I don’t wanna gag. Oh wait, two drinks will probably flare my CMS and then I’ll be stressed out AND weak…so, better just make that one drink…
Oh forget it. Just get me a Starbucks latte and call it a day. Ok.Where was I going with this???
Oh yes… Glass half full…
Please, if I go down a lonely road and start wallowing in my sorrows, just remind me…The glass is NOT EMPTY!
A wise friend told me on that Kenny Chesney night, as I complained about a sold out (hear me say AWESOME!) concert that was “packed like farting sardines”… Instead of sympathy, she smacked me back into the moment! “Hey! Glass half full girl! Sit back and enjoy the music!”
Damn. She was so right!
So, I did.
I danced (if you can call it that…😂)
I lost myself in the moment and enjoyed the evening as if I had no worries. …Then I lost the $60 I won on the Wonder Woman penny slot game I played before the show. Lol!!! But, you know what? I was ok! I didn’t beat myself up over it because I had a really good time with my husband at an awesome concert…oh, and STARBUCKS was still open at the Casino after the show ended😉 BINGO!!! I filled my glass that evening with Kenny and Starbucks!!😜
Footnote: Another great distraction at that time??? Movies! “Educational movies” are always a good distraction! “Magic Mike” for the win! Shhh! Don’t tell my mom I saw that movie!
It was a fun weekend. But then Monday found me again, and it was back to more appointments.
I needed to consult with him about the tumor but also my heart palpitations and whether I might have other treatment options for my CMS (since albuterol seemed to be causing annoying palpitations). I also needed to ask him whether he thought it was a good idea to have my stupid thymus/potential Thymoma removed and whether he could recommend a good surgeon. I don’t trust just anyone with a knife!
People with Myasthenia Gravis sometimes have their thymus removed as part of treatment. Surgery is not always successful in treating the symptoms, though. In my case we’ve been operating under the assumption that I have CONGENITAL Myasthenic syndrome. Not the autoimmune firm, Myasthenia Gravis. But there’s a strong family history of autoimmune disorders in my family. So we had to know for sure! Since there’s so little known about CMS, I was curious if taking out my thymus might help me, too? But my neurologist did not believe it would have any effect on my CMS. But since we never did any official genetic testing, we didn’t know for sure whether I had CMS, or could have MG…
FIRST we decided to do the genetic testing (DUH…knew that, but it was officially ordered and Athena Diagnostics was going to contact me in the next day or so to arrange someone to come to my house to draw my blood…gross!!! I mean, cool!!!!)
SECOND, he ordered a 24-hour Holter Monitor to record my heart beats to see what kind of palpitations we were dealing with. The Cardiology Dept. downstairs didn’t have any monitors for me that day (patients don’t always return them when they are supposed to) so I was scheduled to return to pick one up the next week…
The genetic blood test for a full CMS panel takes about 6 weeks for results and then we would meet again and discuss what to do based on the results…
The results also needed to be sent to a specialist who is studying my disorder at the Mayo Clinic in Minnesota so he can help us find a plan of attack! Is there another medication or treatment plan besides albuterol? I was hoping there would be!
We decided it was ok to continue on my beloved albuterol pills as my neurologist was not totally convinced the cardiac issues were related to the albuterol pills until he saw the Holter monitor results. We needed to rule out possible cardiac causes, first.
The problem is, hardly anyone takes albuterol in the pill form as often as I do and hardly anyone has taken it so often for as many years as I have…and certainly not for a neurological condition like mine (usually it’s prescribed for asthma) but, I’m super rare! We keep establishing that! Ha!)
So… In summary…I was looking at MORE WAITING!!! 😩😝😂😂😂😂
But that’s ok.
I was hoping, maybe in the end I wouldn’t even need surgery and I’d just need a new treatment and everything will be ok! That was the best possible scenario 😉.
At this point these were the possible scenarios I could think of:
Worst case: I need surgery AND need a new medication or there is NO other treatment besides albuterol.
Middle ground I need either surgery OR new treatment!
Or…I do nothing. I ignore everything. I go home and pretend life is grand, my thymus isn’t growing and my heart isn’t skipping beats! (Yep! That sounds like s winning combo…for someone who gambled with their life!)
No answers that day. BUT I really felt safe with the neurologist’s knowledge and approach versus my primary care physician who was flying by the seat of her pants and had never even heard of CMS before she met me a few weeks prior😕…
My neurologist and I discussed at length how rare I am. It’s not easy being a medical anomaly! But my specialists love me😉. I make their day! I am interesting! Maybe I should join the CIRCUS!!!😜
Oh and when I shared with him, that none of the neurologists present or on-call wanted to see me that day I landed myself in the ER, My neurologist stated: “that’s probably because they’re afraid to.. They don’t know anything about your condition …”
Wow.😳 Hope I’m never actually dying and need emergency care! Cuz apparently nobody wants to touch me!😢
As always, there’s comedic relief…
Here’s my husband’s reply on Facebook in response to my mother-in-law asking for prayers for me:
Gotta love my husband. His sense of humor is …well… You can see for yourself! He makes me laugh all the time and reminds me not to take life TOO seriously! You gotta find things to laugh about 😊❤️
Ok back to waiting and testing…
So, then I find out we were using the WRONG genetic lab!😢. The expert on CMS, who’s done years of testing and studies on CMS wanted me to use Prevention Genetics. Apparently, they have the best testing for CMS. Soooooo….I try to contact my neurologist to change genetic labs… No response. Great. Standing still again!
Meanwhile, back at work where everything usually falls apart in my life…I find an Email from supervisor…
Ok! Shall I take that as a suggestion? Go ahead! Leave! You need a break. Leave work behind and come back later. No worries!
Ha! That’s a funny one. If you know my supervisor and boss you’d be laughing too…maybe crying…and probably cowering.
Crap. Here we go. The meeting wasn’t until 2:00pm!!! My adrenaline was pumping all morning and afternoon. Felt sicker the more the time ticked away and the closer the clock ticked towards 2:00pm.
I didn’t do anything wrong. I had leave to use! (I remember those days fondly! Now my leave balance has a negative sign next to it and I owe the Feds at least a year of my life in sick leave…but I digress. I will discuss that in later posts about my life after surgery)
I was now under the spotlight. I’ve been red-flagged for using too much leave. Even though I was careful to make appointments during my lunch time so I saved myself a half hour of leave each time…
I sat down in my supervisor’s office at 1:58pm. He had a folder. Paired carefully and arranged nicely with a stack of papers…highlighted were my remaining leave hours. Highlighted in another stapled packet was all the leave I’d been taking!
More papers… Leave policies.
EAP (the agency offered counseling program) Are you feeling stressed out about something??? Well, DUH!!!
My mind was racing.
Him: “So, I wanted to sit down with you and talk. See if anything was going on?Medically!?”
Me: “Um. Yes. Remember I gave you the copy of the MRI order? I have THAT going on. Plus, something else! I just don’t have answers for you. I don’t KNOW what’s wrong with me, yet!” (Cue the freakin TEARS!!! Crap! Stupid dummy! You let him see you vulnerable and weak like this!?
Ugh. I need Kleenex…I’m frantically scanning his office for Kleenex…No Kleenex. OMG! Who doesn’t have a box of Kleenex on their desk? Where do I soak my tears and snot??? I don’t even have any sleeves!
I was a mess.
So there I was, wiping gross, slimy snot and tears on the back of my bare hands. Keepin it classy! Yada yadda yadda…
I’m eventually excused to go think about my life and what a mess it is.
I stop by my friend’s office to decompress afterwards and share what just happened.
I begin my story… but she abruptly interrupts me… “What happened!!! What’s THAT? There’s a BLACK THING on your face! Look! LOOK!!!”
I turned to her mirror. Mascara. Damn it. I sat in that freaking seat in my supervisir’s office, staring back at him looking like a MESS. Like a blubbering idiot with mascara all over my face. Damn mascara. I loathe you.
No, I loathe my inability to keep my cool and not control my waterworks when I get cornered!
When I get stressed…when I get angry…the damn tears flow freely despite every effort I make! Lip biting, fingernail digging, deep breaths, calming phrases, calling myself an idiot for letting him see me that way! None of it worked. None of that ever works.
So, there I was. Red nose and puffy eyes…and that damn streak of mascara across my face…my battle scar… War paint… No, it was proof I’m WEAK and always will be in these situations. No matter how big of a wall I build up. No matter how tough I act… I crumble when I’m in a confrontation. Damn it, Terra.
7/21/2015 still waiting fur new genetic test orders… I faxed new forms to my neurologist.
He didn’t get them.
He finally called me after hours to say they are ready! I’ll try to go pick them up tomorrow…
Holter monitor is ready to be scheduled as well. I’ll call tomorrow.
Meanwhile…I was feeling BLAH about everything and just wanted it done and over with already!!!
Blood test day!!! Finally!!!
My neurologist’s receptionist couldn’t find my blood test paperwork😕. The medical assistant finally found it.
I make my way downstairs to billing/check-in and my patient specialist was confused. Had no idea how to handje my paperwork fur the genetic test. …on phone to billing as I check in for genetic testing:
“Got another miscellaneous one! Never seen THIS before…(completely garbled the name of what I’m being tested for and I have to correct her). 20 minutes later they decide not to charge me anything and tell me to go ahead and do the blood test. They’ll figure it out later and bill me. Whatever.
–Meanwhile, down at the blood lab:
I have over my paperwork…”Never saw THIS before! I need to find someone who can help me so we make sure we do this blood test right!”
Tic toc tic tic…Everyone else has been helped and I’m still sitting there…I think she was having trouble finding somebody who knows what we needed to do😳 (despite me handing her detailed instructions from Prevention Genetics that tells them what to do!😕)
Geez! I feel so…unique…and a little uneasy! I gotta get back to work, people! Remember that leave meeting I just had??? Here’s another two hours I’ll never get back again. 😳
The Supervising phlebotomist was very nice. Told me I looked nice today, as I sat nervously in the chair watching them unwrap the syringe and gather tiny glass tubes with different colored tops. “Nice, Today?” Have we met on other days when I didn’t look so nice? I I got poked a few hundred times on both arms before they surprised the one remaining vein that wasn’t hiding (my body knows when it smells a needle and my veins go MIA…makes for very unpleasant experiences getting blood draws and IVs). Fill’er up!!! The test tubes of red liquid genetic information were packed carefully into a special cooler to get ready to ship to the Midwest… Hope that doesn’t get lost!
I was wrapped in pretty gauze and yellow “tape” and sent on my way. I stopped to ask for a letter for work. To prove I was depleting my blood supply and sanity at the hospital and not depleting my bank account and having fun at the mall… He signed it. As I left, he wished me luck…seemed sincere… Thank you, I probably need it!!!
At some point while I waited for genetic test results, I faced reality and started researching thoracic surgeons….
…Stay tuned for my next installment where I stop whining so much and work on finding a surgeon…
Dear “Doogie Howser” thoracic surgeon and robotic thymectomy expert extraordinaire who looks 12 years old, MD,
Please, take my oversized, possibly cancerous thymus and leave my gorgeous chest intact! Thanks so much!