It had been six months.
(No not since I put up my last blog post but it feels like it no?)
When I got the reminder phone call from the Mayo clinic that it was time for me to come back to rescan my tumor my stomach dropped. How could it be time for that so soon? Things were just getting back to normal.
I guess time flies when you’re not dying.
This time my mom would go with me (as always). We booked our flights, made our hotel reservations, packed the pink suitcase and my bear, and we were off. All of this felt mechanical. It would be our fifth trip to Mayo and we were seasoned vets. We knew the quickest car service, where the best restaurants were, and I could quite possibly find my way through those underground tunnels connecting the hotels to the hospital in the dark.
Something else that had become routine were the nerves. Since my diagnosis in 2012 I no longer felt like I could trust my body. It had proved unpredictable and defiant. I still felt status quo and could guess that my films tomorrow would not show any new growth but who really knew? I had been given six months by my doctors but would my body feel like giving me six more?
The next morning we woke early, showered, braided my hair into my Katniss braid, and headed down the street to radiology to get my MRI. As usual, check in, get your beeper, go back, change into your hospital gown, nope no metal in or on my body, get your IV, nope no metal in or on my body, wait for a few minutes, last chance, nope no metal, in the tube, nap time, out of the tube, contrast in, in the tube, out, change clothes, thanks! Have a great day!
We always did MRI in the early morning and then saw Dr. M in early afternoon so we went to our favorite diner and had brunch complete with apple pie and cinnamon ice cream. After that we poked around the many shops adjacent to the Mayo Clinic to kill time. One of the stores was filled with funny cards and pictures with positive thoughts and quotes on them. I remembered thinking that working there must have been a catch 22. To be nestled in this cozy little store surrounded by knick knacks and cards that had such positive messages but to know that the reason you were there was because of all of the struggle that was being experienced in the glass tower 500 feet away.
We heard the church bells from the Presbyterian church around the corner strike 2. Four visits ago my mom and I had wandered in the ornately carved doors on a walk out of curiosity and boredom. Back then we were in the waiting period between surgery and going home. Like planes in a holding pattern we had to stay in Rochester to wait and see if anything went wrong before we could go back to KY. Niether one of us had been seeking sanctuary but it is funny how a quiet space used for worship (whether you believe in a higher power or not) can create a moment of calm. Almost like the marble and stained glass use the thoughts and prayers of others that have been deposited there to create a space that can feel safe. No one was there but us and we took five quiet moments in that space to be quiet…and breathe.
Funny how such a serene place then could instill such panic in my mind now with the gonging of its bells! It was time to walk over to the Gonda building, zip up the elevators to the 12th floor and see what surprises my body had in store for me this trip.
As usual, check in, get your beeper, sit for five, beeper goes off, meet the nice lady at door B, follow her back to the room, wait five minutes, in walks Eli, camera up the nose, take some pictures, and since they have an even fancier new endoscope today (someone’s been filling out their grant proposals Eli!) some video. Eli asks how I’m feeling, I say fine. He smiles, ok I’ll go get the boss.
And then my hands get clammy. My head starts hurting, is that a sign? Do I really feel fine? I’ve had my symptoms for so long can I really tell anymore? What if things have gotten worse? I grip the armrests as I normally do and focus on my breathing. In, out, slow and controlled. I repeat to myself the phrase that I have said over and over again since March of 2012.
“Whatever happens, it will be fine”
Dr. M enters the room and I immediately crack up.
No I have not lost my mind from dealing with the pressure (physcial and mental) of having a skull base tumor. Dr. M’s appearance simply made me burst out laughing.
I have described him before as serious and to the point. He does not use four words when two will do, there is no chit chat about personal lives or emotions. When I meet with Dr. M it is to discuss findings and symptoms then to strategize about next steps. His appearance reflects this straightforward approach. He wears grey, black, and navy suits, with solid button downs and either bold or muted colored ties. No crazy patterns, loud color combinations, or bow ties here folks. This man is all business, clean shaven, sometimes I have seen him in square rimmed glasses but that’s about it for accessories.
Today was different.
Dr. M walked into that exam room in his normal uniform but his visage was partially hidden by a 5 o’clock shadow that was slowly transitioning into the beginnings of what appeared to be a beard! I hate to say it but my clean cut surgeon was looking down right scruffy this afternoon! Before I could stop myself I blurted out, “Whoa, late night last night?” and immediately turned a deep shade of crimson and gave myself an internal slap on the wrist.
You don’t joke with Dr. M Stephanie. He’s your surgical robot. Don’t scramble his circuits with laughter and emotion.
To my surprise this was one of the rare moments that Dr. M cracked a smile and even shared a personal detail about himself.
“I coach a high school lacrosse team and it’s tournament time. All of my kids are shaving their hair into mohawks but I don’t think my wife or my patients would find that acceptable so I told them as long as we keep winning I’ll grow out my beard.”
Huh. Lacrosse. I pictured him on the field with a bunch of 16 year olds surgically dissecting plays on a hand held white board.
Scalpel, I mean Sharpie please.
Until then I had not ever thought of Dr. M as a person really outside of the hospital. My surgical robot now seemed strangely human.
I had little time to reflect on this because as briefly as it had begun the small moment of reprieve from the medical world was over and Dr. M was running through the video Eli had taken as well as scrolling through my MRI. He turned away from the computer monitor to face me and I held my breath. 6 more months, that’s all I want, 6 more months, please god, I want more time.
Well Miss Fahs, everything here looks good. Your tumor has continued to regress in size. I think we should begin cycling you off your beta blockers.
I was jumping out of my chair in exultation only to be caught in mid air and slammed back into my seat. Cycle off my beta blockers? Why in the hell would we do that? They were my magic potion. Taking them had saved me from an exploratory craniotomy. We were winning! My tumor was even smaller today than six months ago. We had the enemy on the run, why on earth would we put our weapons down now?
Dr. M could sense my hesitation, “We will cycle you off slowly, if you feel like your symptoms are returning you can simply contact me and we will cycle back on. But I would suspect that these are making training difficult for you and from my standpoint, if you do not need to be on them then we should take you off.”
Don’t you hate logical thinking? I could not deny that being on the beta blockers, while saving my life was also diminishing its quality. Lightheadedness was an everyday affair and it is very strange to push as hard as you can for an interval of time on your bike and not see your heart rate rise in accordance. I agreed to cycle off in a manner equivalent to the armed forces draw down in Afghanistan. I would reduce the dosage slowly but there was no set plan in the immediate future to go cold turkey.
As we walked out of the Gonda building my mom pulled me out of my over-analytic state and said something she hardly ever does. Looking mischevious she pointed to a bar across the street and said “let’s go get a drink to celebrate” In all of my worry about going off my medication I had missed the most important part of the doctor’s visit. My tumor was smaller. I had been given the one thing I had begged for when I was sitting there waiting for Dr. M.
Six more months.
How had I missed it? I should be feeling elated not worried. I could not predict the future, but there was just as much of a chance of these next six months going well as going poorly. My friend Mary would inform me later that this is something called “awfulizing.” Getting caught up in all of the things that could go wrong in the future so that you can no longer enjoy the present moment. It, in effect, kills the engine before you can even kick start it to get moving down the road.
Luckily my mom was there to steer me in the right direction.
Across the street to the bar.
That night we had not one but a shocking two rounds of drinks and both went back to the hotel feeling bubbly just like the champagne.
I could not predict or control what the future would bring but I learned that night that it’s no use straining to see the horizon through binoculars, the real beauty of life is here and now, it can be seen simply with the naked eye.
Be careful not to miss it.