The past two weeks have been an absolute roller coaster. There were highs and lows- even a few actual nausea bags, thrown in for authenticity.
May 3rd – Setting the Bar Low
I had my root canal. Even though it was unofficially ok’d in a message, the oncologist’s office never sent the forms over to the dentist, so I spent 35 minutes playing Nancy Drew trying to find someone to write a letter stating I was approved. The office was none too pleased.
* This is an important thing to remember if you know anyone with any kind of chronic health issue: we spend LOTS of time on the phone tracking down doctors, paperwork from doctors, or obtaining authorization to see doctors. Please give us a pass if we get off the phone and seem irritable and/or frustrated.
Thankfully, my mom reached someone at UPenn around 9:30 and an official approval letter was sent via email. (My oncologist, who is great, later sought me out to give me an apology over email and in person. ) As soon as I let the staff know “the letter’s on its way!” they stuck the numbing QTip on and got to work.
The root canal was exactly as you expect it would be: painful and awkward. Let’s not spend too much time lingering on this event, lest we conjure up any memories of dental work past.
I left and was back at work by lunchtime to run a rehearsal for our fourth graders.
May 4th – Climbing to New Heights
I watched my fourth graders take the stage in The Lion King KIDS. Let me tell you, it was remarkable. (I don’t consider this a biased stance, because I had very little to do with it. The way I see it, if you do the right kind of work as a director, you mostly pose questions or considerations and run away, leaving the actors to find the right solutions.)
I mean, c’mon, look at these photos!
They made me very, very proud, and I was very, very happy.
May 5th – Still Ascending
May 5 was my 29th birthday. I checked on the DTRF donation page and was blown away. My little $500 goal had been met – seven times over.
I don’t have the email addresses for everyone who was generous enough to donate, nor the time to thank each of you as personally and as thoroughly as I’d like. Please believe me when I say, each and every donation means so much to me. I just don’t have the words to thank you enough for all you’ve given. I am eternally grateful and indebted to your generosity.
May 6 – The Peak
I threw myself a ridiculous unicorn-themed brunch to celebrate what I’d like to call the “Victory Lap” of my 20’s (aka, age 29). I wore an outrageous unicorn crown that I made, ate unicorn cupcakes and other rainbow-themed food, and felt the love of being surrounded by family and friends.
May 7 – Freefall
Overnight, I caught a lousy stomach bug. After a few hours, it passed, but I woke up feeling tired and irritable. I had arranged for a substitute teacher so I could take the day off work and attend a follow-up appointment with my oncologist.
On the way to the appointment, my Mom voiced her concern that my tumor appeared larger. I honestly have little way to gauge the size of it: I see it every single day. During my appointment, my oncologist agreed that it looked slightly larger. He agreed that I needed to get an MRI, preferably that week. The doctor also said I had a decision to make. Either stay on Nexavar if I could manage the side effects, find an alternative oral medication, or head to surgery.
This made my stomach drop. Really? We were still talking about surgery? The tears began to make an appearance when I told him, under no uncertain terms, did I want to try surgery before exhausting my other options. Thankfully, he wholeheartedly agreed. I decided to stay on my current medication and adjust my expectations for my lifestyle. I’ll take tired, sore, and nauseous over cut open, please and thanks.
The ability to hold to that decision, however, was contingent on the results of that week’s MRI. My insurance required pre-authorization on the request, and once that was in, I’d be good to go.
May 8 – Another Drop
Tuesday started as a normal day. I went back to work, had a normal breakfast and lunch, but by the afternoon, I was locked in a heated battle with my insurance company. They directed me to an outside company which handles authorizations, and that company rep claimed that they did not have the information needed to process the MRI request, even though UPenn had already sent over office notes. I then made numerous calls to both the authorization company and UPenn. It was infuriating.
*Remember what I said earlier? Please be patient with your family and friends who have chronic or severe health issues. They make these phone calls weekly, if not every day.
By Tuesday night, I was feeling tired and not too hungry. By midnight, that “not too hungry” became violently ill. This thing took hold of me by the ankles, shook me violently, and left nothing but the good sense to send a text to my mom.
May 9 – Leveling Out
My mom arrived on the scene by six AM, with cleaning products, Coca-Cola, Gatorade, and bread on hand. She gave me a bit of flat soda to make sure I could keep down liquids, then drove me back to my parents’ house where I could rest and not worry about taking out the dog on my own. (Valuable, as I couldn’t stand straight.)
I don’t remember too much about that day, other than my family taking care of me. I won that family lottery, in case I don’t say it enough.
The only silver lining of that day: I got an appointment for an MRI the next day.
May 10 – Beginning to Climb Again
I had my MRI. It was quick and relatively easy. I listened to some Michael Jackson on a Pandora playlist and held my breath when the technician told me to, and then it was over.
I kept down a few pieces of sourdough toast, some water ice, and by evening, even some rice and beans. (My sister, the insightful nursing student, stopped me from adding sour cream.) I got back to my apartment that night for another solid night’s rest before heading to school the next morning.
May 11 – Another Peak
What a beautiful day, right? I was feeling able to eat for the first time in a few days and put on my favorite dress to celebrate.
I kept myself busy while I waited for the phone call with the results of my MRI. At 3:30, as I was leaving work, it arrived: my oncologist confirmed there has been no significant growth of my tumor. (Cue the confetti!) He said while it may have grown a hair, it’s essentially still the same, so his recommendation was to stay the course with my current medication and get scanned again in three months. I happily agreed and said I’d see him for my monthly appointment in June.
For those of you without great calendar skills, three months of treatment puts me as due to be scanned in the middle of August. Other desmoid patients who have been treated with Nexavar have seen results between 6-9 months, so this scan might not show anything significant, which would still be OK by me. Let’s be real: is this truly great news? To a cynic, probably not. (I see your point, I’d rather not have this tumor, quite frankly.) But after the low bar of achievement was set, on top of thinking I was headed to the operating room, this was like finding out I had won the lottery.
Exiting through the Gift Shop
I’m still making sense of this whirlwind of two weeks. For now, here’s what I’ve got in hand:
- A fundraising campaign that’s far surpassed all my expectations
- Another musical production under my belt
- Reassurance that my family and friends are not going anywhere
- The knowledge that my tumor’s just fine, for the time being
This weekend, I think I will celebrate. My body’s not quite ready for champagne, so for tonight, it will be some of my other favorites: a great book, some self-care, and my pup at my side.