The next few weeks were the same as the month before. I spent an uncomfortable night and day in the hospital. Then hung around Rochester for a week while we monitored my CSF leak to make sure I did not develop an infection and that no complications popped up. That week was a blur. It was really just one big, long, oxycodone induced nap punctuated by meals, short walks, watching HGTV with my mom, and secretly reading “Fifty Shades of Grey” underneath the covers by the glow of my kindle app on my ipad.
By the following week we were ready to go home and I had a similar panic attack as we got on the plane. What if my graft hadn’t healed all the way? What if I contracted an infection and got meningitis? What if my tumor came back? I felt as though I was being forced to swim out into an open ocean and that I was leaving my lifejacket behind. I felt so much safer having a team of confident and efficient doctors just a 90 second walk away. It seemed crazy to get on a plane and put 700 miles between them and me.
But it had to be done.
Life doesn’t stop for tumors or brain grafts or CSF leaks. And it doesn’t care if you’re scared. It was time to go home and try this again. Time to try and get back to normal. As before I recovered at my parents’ house and then returned to work. And this time there was definitely no chance I was climbing any stairs…
Before I left Mayo Dr. M and I had discussed an “idea” he had had about the treatment of my tumor. He was unsure as to why my recurrence had happened and to try and ensure that I did not experience another one he proposed that I begin taking heavy doses of a beta blocker. He had read research about infants who suffered from the more superficial type of this hemangioma being treated with propranolol with great success. There was no literature, he assured me, that indicated that this could work for me, but there was no significant risk in taking a blood pressure medication except for its normal side effects. The most difficult ones being that I could experience some lethargy and lightheadedness. In the end we decided, what the hey? Let’s give it a shot.
The only problem with this strategy was that my blood pressure ran low anyway and now we were going to lower it even more. Some days it would drop as low as 82 over 65 according to the cuff that I keep by my bedside table. On these days I’m sure I plodded around my office in a similar manner to Eeyore meandering through the hundred acre wood being doused by a rain cloud. It made me feel like I was wearing a lead vest. I was so tired and heavy. During my lunch break sometimes I would lock the door to my office, lay on the floor, and take a nap. I was just so tired.
When I would wake up in the middle of the night and decide to head to the kitchen for a glass of water the sudden change in pressure from laying prone to standing up would make me dizzy and I’d crash into walls and knock over table lamps as I careened like the woo girls leaving Two Keys at 3am down the hall towards the fridge. It’s a good thing I don’t have a roommate or the poor thing would have never gotten any sleep. Constantly waking up to the sounds of an elephant crashing through the apartment who swears like a sailor when she stubs her toe on doorjamb.
Propranolol also lowers your max heart rate so I not only felt lightheaded upon standing but when I was finally able to attempt exercise it felt like I was trying to floor the accelerator with the emergency brake on. I could push my body as hard as it would possibly go and my heart rate would stay at an even 130-140 bpm. And if I pushed too hard I passed out. It reminded me of the electrical wiring in our old house growing up. If my mom was vacuuming and my brother was on the computer and I plugged in a curling iron and was then foolish enough to try and turn on the blow dryer all on the same circuit the breaker would trip and we would all be in the dark. My body was the same way now. Try to run too fast too quickly and it was lights out.
Unfortunately I only have two speeds. Fast and stop. And I had been at full stop for two months now. I was getting out of shape and feeling unhappy. I wanted to move. I wanted to train. I wanted to feel strong. And I wanted it all right now! When I felt that I was ready to train again I hit that accelerator and pressed it to the floor, and then of course my body “made me” slow down by passing out. So I waited a few days and hit the accelerator again…and again I was forced to come to a screeching halt….I tried this quite a few times with similar results. Why I thought a few days rest in between would make a difference I’ll never know. To an outsider watching it was probably similar to a 16 year old learning how to drive a stick shift who cant’ get the hang of the clutch. Start. Stop. Start. Stop. Again and again until both car and driver are beginning to fall apart but they won’t stop because the intangible freedom of the open road is within reach.
I remember when I was sixteen I was dying for the liberation contained in those four wheels. Now I was dying for the freedom of a body strong enough to climb three flights of stairs.