My time in Philly has been both sweet and sour. My last blog covered the majority of the sour, but the fact that my treatment has come to an end sets a sweet tone for today's post. I am completely finished! On top of that, I’m flying back to the friendly hand of Michigan today! Here's the video of me ringing the bell, something each patient does on their last day of treatment.
There is only one way I pulled off the past six weeks. My sister, Angie and her husband, Jamin, have been lifesavers. The two of them have somehow managed to schedule my pick-ups and drop-offs every single day. And all without a single complaint. They gave me THEIR room, with my own bathroom and writing desk. I felt so fancy! Most days Angie and I would take the train into and out of the city. And other days Jamin would drive me in with their two girls, Lily (9) and Annabelle (6), jabbering on and on from the back seat. Over Easter, my oldest sister, Leslie came into town with her husband Chris and their two kids, Lauren (14) and Jason (12). The combination of two out of three sisters brought so much joy to my Easter weekend. My family has been my only tie to home and, as I just noticed in this photo, has huddled around me, protecting me like a shield throughout my treatment.
Jamin does such a great job with his girls. In order to get them excited about going to the hospital nearly every day, we needed them to get behind it. And while “Proton Therapy” might be an interesting name for adults, it doesn't pull weight with the girls. So Jamin renamed it the “Magical Mustache Treatment”, which they approved of, but when it they realized it could be shortened to M&M treatment they loved it! I’ve been so pleased to spend time with my two nieces. They are a hand full, for sure, but I loved the many night we cuddled up on the couch together and read through The Lion, the Witch and the Wardrobe.
I introduced Jamin to Peaky Blinders, which he immediately fell in love with. If you haven’t heard of it, it’s incredible and available on Netflix. Next we forced each other to watch movies from our childhood. Angie chose The NeverEnding Story. I selected Clash of the Titans and Jamin dragged us through The Night of the Comet. It was a struggle to watch these movies as adults, but we had fun remembering our emotions when we watched them as kids.
Last weekend, we went up to New York City where we visited the Guggenheim and the MET. It had been a few years since I’d been to New York so it was great to be back. I was blown away by the work of On Kawara. His exhibition at the Guggenheim was entirely boring yet incredible at the same time. By the end of the exhibition, it hit me that he was the "first" Twitter user in the late 60’s. Check out his work here if you aren't familiar.
We managed to catch Pastor Tim Keller preaching after contacting some insiders (Kara Syverson!) to figure out which location he would be speaking at. I would have have loved to go and say Hi to him after, but he’s an in and out pastor preaching multiple services a day. He really is such an amazing man. He’s full of an incredible amount of knowledge, yet his stage presence was similar to sitting across the table with an old friend. His message this week was so applicable to my current scenario on my search for healing. Almost like he'd known.
Speaking of healing, I was told by my doctor that by going through this treatment I would have a 50% chance of increasing my life by ten years. And if I did chemotherapy after, that would extend my life another seven years. That sounds incredibly exciting. But then again, I’ve also had doctors tell me that I should be dead by now. Or tell me that I’ll be dead in a few months. Or tell me I’ll be dead next year.
And I’m not joking. My doctor from Mayo, the same doctor whose face was plastered on the front cover of Time Magazine, told me my face should be dead by now. I hate to say this, but despite all the charts and graphs filled with shiny results, every one seems to be reaching blindly on a disease we are still trying to wrap our arms around. I know I should be trusting my gut, trusting God, on which types of treatments I should pursue. It’s worked well so far. Nevertheless, I'll have an MRI done in the next few months, and share the results of this Proton Therapy. Hopefully, my flipped quarter will land on heads, the right side.
At the beginning of this treatment, I was told by my doctor that I *might* notice some hair loss at the points of beam insertion. As I previously mentioned, doctors always say it’s a little, but it’s always a lot.
I met with the doctor this week and chose to be completely straight forward. I told him he should have been blunt with me, to my face, that based on my beam injection points, I’m going to lose half of my hair. Just tell me straight forward. Don’t give me this ‘I might notice a little bit of hair loss at the injection points’. That's complete bullshit. But, then I thought, maybe he didn’t actually know. So I asked my technicians who handled the Proton Therapy machine throughout my treatment. I asked this sweet young blonde if she would have been able to predict my hair loss on day one. She quickly replied, “Of course!”, in a overly-chipper voice I took mild offense to. She explained that they see head treatments every single day and the results are always the same. In the end, nearly every patient comes out blazingly bald on one side or the other. I told them they should inform the doctor about how he presents this to patients but they looked at me as if I was crazy. “Um, we don’t tell the doctors what they should or shouldn’t share with patients.” Okay, fair enough.
People told me I should have just shaved it. That would have been much more convenient. But I remember when I said I wanted this blog to be an honest look into my cancer experiment. Somewhere, someone, is considering undergoing Proton Therapy to their head. This is what happens. In the end, I’m not upset by my loss of hair but I was devastated when it initially happened. I feel future patients need to prepare for their hair loss in advance. I surely needed it. It would have been immensely helpful for me to see the typical results of this treatment. I would have prepared myself for this, as opposed to pulling out masses of hair in the shower one Monday morning, angry at my doctor for seemingly lying to my face.
But nevertheless, I am going home today and I can’t wait. Thanks to Corporate Angel Network, who partners with local businesses to offer free flights to cancer patients, I’ll be gliding into Michigan with many DOW employees at 12:45. I’ll be met by a beautiful and extremely pregnant brunette who will drive me directly to the daycare to pick up my sweet (and also bald) Marian. I can’t wait to sneak in and whisper her name. Who knows what she’ll do?! She could be thrilled! She could be pissed! But I know it will be so wonderful to return home to increasing temperatures, as flip flops are dusted off, shorts are carried down from the dusty attic, and blooms begin their slow-motion process of delicately revealing themselves.
I pray my return home will serve as the beginning of a new Spring for me. A restart for my health, my spirit, my work and my new baby! And I hope this Spring's MRIs will also reveal positive results against this past dreaded Winter of cancer. I can't help but feel these changing seasons of this planet are quite similar to the changing seasons God allows for our lives. We all have times of joy and life, that are equally matched by struggle and death. It makes me wonder why I’m constantly surprised when my Winter, my personal struggles, start slowly falling from the sky to trap me yet again. God's weather almanac tells us exactly how to prepare for these moments, but apparently I never take the time to pay attention to the forecast. And don't even get me started on all you sun-loving bastards on the West coast. Ya'll know nothing about real life!
So, here's to the end of another winter, another chapter. And here's to tomorrow, the beginning of a new Spring filled with clean blank pages waiting patiently for us to do something, to tell the stories of our lives.