Well. Here it is. The final edition of Frank. An eviction process 18 months in the making. Yesterday marked the first of what will be many follow up appointments over a lifetime, but for Henry and I it finally felt like closure. In the past year and a half I’ve learned far more than I ever cared to about the workings of my health insurance and navigating around Boston’s best hospitals. I’ve felt suffocated, sore, and oh so tired, but today, today I feel resilient.
Eviction Notice Served
Turns out if you ever have something wrong with your health, Boston is a really good place to live. During the course of my diagnosis we saw six doctors, all of which were at the top of the top of their fields. All of whom were advocating for my best possible care.
A long synopsis made very short, the final decision to bid Frank adieu was radiation treatment with no surgery. To be openly honest, I was thoroughly looking forward to taking Frank out one way or another, but was a little disappointed that I would be caring him around like dead weight for the rest of my life. To me, surgery represented a clean slate. A proper eviction. A way to take charge as if to say, “GTFO, you are not welcome here, you never were. Take your stuff and don’t come back!” However, six months following a summer of radiation treatment, I’m happy to say my position has shifted.
The people who work at the Proton Center at Massachusetts General Hospital are 100% some of the most fantastic healthcare professionals you will ever meet in your life — but I seriously hope that you never have to meet them. Having to see them every day for six weeks, well, it wasn’t so bad when small talk is real conversations with genuine interest. When you can bust balls for someone’s particular taste in terrible music they chose to play in the treatment room. And when they know how much you despise putting that suffocating mask over your face, so the minute treatment is over they rush to take it off and refrain from making fun of the cheese grater impression that’s left on your forehead…most days. No really, it’s a perfectly mold mask of my face made of mesh plastic so you positively cannot move during treatment. I wish that upon nobody. But if you someday see a face shaped giant ice cube in the punch bowl, you can know how I made it.
After six weeks of daily trips to MGH, eventually the radiation starting to take effect on my body. My hair fell out in the area that they were radiating. My throat was very sore. Foods became carefully selected and my desire to create for HTP took a serious nose dive. Each day required an afternoon nap and I drank so much freaking coconut water trying to stay hydrated I seriously doubt I will ever be able to drink it ever again. None of those things were enjoyable, but in the grand scheme of things, I consider myself lucky. Our travel time was 20-30 minutes each day. Some people spend hours a day driving to the Proton Center and getting treatment. Or living in hotels just so they can be treated at only 1 of 19 centers like this in North America. Their patients come from all over the world, and heartbreakingly, the patients are truly all ages. So at the end of 6 weeks, when I got to ring that bell and get my little certificate of achievement I might have felt like total garbage physically but emotionally it was the best feeling in the world.
Frank will always be a part of me, like a bad tattoo on the inside – no one can see, but I can’t cover it up. But now he’s a radiated, zapped to death piece of tissue no longer changing the way my body works. The nerves that were crushed by his growth will never return. I’ll never sing (well) again, you still won’t be able to hear me in a crowded bar, my shoulder muscle won’t fully recover, part of my tongue will always be paralyzed and I’ll always have a harder time swallowing when I eat. A year ago, knowing that those things would never change was seriously upsetting, but after yesterday they are a part of me I own as this new version of me. The me that had a brain tumor and the me that has so many fun and exciting things to continue doing.
Hearing the confirmation that the tumor has not changed shape, the radiation treatment was successful, that there were no effects from the radiation treatment on other parts of my brain (though Henry begs to differ – har har), and that if we were to decide more kids are in our future that I wouldn’t have to worry about the tumor feeding off those hormones and cutting off my carotid artery, well, that was more than icing on the cake. It was like a triple decker chocolate cake with salted caramel filling, oreo cookie butter cream, with real gold flakes all over topped with baileys ice cream and a creamy, french toasty martini to wash it all down…hmmm…that gives me an idea.
In seriousness, it was like I had been carry around an encylopedia sized book struggling to finish the last chapter. And on December 29th, 2016 I was finally able to finish the last chapter, close the book and put it on the shelf.
It takes a village
The saying that ‘it takes a village’ is a practical application in so many ways. Raising a child most definitely takes a village, if not just so you merely don’t go crazy. This whole process from the first wishy washy, bland ‘there is a mass, but I can’t really tell you more than that’ diagnosis to the final ringing of the bell on the last day of treatment has 100% taken a whole village and maybe a few stragglers from a neighboring one as well. I would be no where in this life, Frank or no Frank, without my amazing husband. My wish for everyone would be to have a partner this loving and supportive. Who can make you laugh when you feel like a dumpster full of grossness and can just snuggle you the right amount right when you need it. Who can celebrate your success, be a phenomenal parent, be there for each treatment, each appointment, and still put in a 70-hour work week.
And it certainly doesn’t hurt to have a doctor in the family. Though having to explain to elderly family members every. year. at Thanksgiving that no, I’m not the doctor has at some times felt similar to sticking my hand in a running garbage disposal but mostly has become awkwardly funny. Regardless, if I hadn’t had my sister to translate every chart, every summary, and explain all those weird things you never understand in the actual appointment but never think to ask until you pull out of the parking garage, this would have been a much different and confusing experience.
Beyond the ties of sisterhood, my family is the bees knees. Both of them. My family that raised me and the family I married into. I am so lucky to be surrounded by such loving people. Real people. People that genuinely care about you and go out of their way to show it. Mothers and mother in laws that live in your tiny little 2 (and a 1/2-ish) bedroom so they can help out with the baby while you’re at treatment each day. That help you clean and do your laundry and physically make you go lay down for a nap because you’re just not very good at doing nothing. And friends, my friends are also family. Every text, every call, every word of encouragement, every positive thought – whether vocalized or not – it was felt.
Thank you to everyone for allowing me to be surrounded by such wonderful people. It makes me a better person each day, having such great people in my life. With New Year’s Eve just around the corner, please consider this a toast to all of you. Raise your glass – or if you’re reading this at work, pretend and remember to have a cocktail and mentally toast with me later – and allow Henry, Shea, Charley Brown and I wish you all the best 2017 has to offer and the squeeziest of hugs I could possibly send through the internet. Thank you for being you and being in my life, it would be a dreadfully dull one without you.
x0x0 – Lauren