Patience+Grace

It’s been a long road, far longer than I expected. My therapist consistently reminds me that I need to give my body the grace to heal and have patience with the process. Fuck!

With that in mind, this long road is brining you a long blog post today. So if you want the shortened version here it is: I’m good. I’ve got 6 months until my next set of scans. I’m starting to feel better and I’m exhausted, all at the same time. I’m back to work and grateful for a great employer.

For those curious about the longer story, check it out below.

I finished 37 rounds of radiation on December 9th. 37 rounds of radiation is a lot, A LOT! I am grateful that treatment was available to me in Atlanta, that isn’t the case for everyone. All of the people at Emory Winship Proton Beam Therapy Center (PBT) make a horrible thing as good as it can be. To thank them, I gave them each a split of champagne on my last day. Champagne Friday and really any day!

My medical team warned me that I would continue to feel terrible for 2 more weeks after radiation. So I started counting down. I’m a planner, timelines are important to me. My body had a different plan. I felt worse and worse and worse. At my 1 month check-in my doctor said, “you should feel far better than this” and scans and x-rays diagnosed me with pneumonia. Pneumonia is hard, and dealing with another health challenge, another specialist, more scans and even more drugs was even harder. I didn’t really emerge from illness until March, and some days are easier than others even now. But worse was the mental punch that I was still sick. I got very very blue during this time.

Prolonged illness takes a true toll mentally. I have been on an anti-depressant for years, but with all of this it was time to do more. I upped the pharmaceutical support with my psychiatrist. I reacquainted myself with my therapist, I even relearned to knit, to express the ‘trauma’ and to quiet my mind. One doctor called the scarf I was knitting “an anger scarf,” yeah, kind-of. I still have some work to do on the mental game. That is one of the reasons for this long post.

This blog can’t begin to unpack the mental toll when navigating challenges to physical health. And now that I’m feeling better and better, the challenge is the identity crisis I’ve experienced as a result of it ALL! So much so, I’ve been avoiding it. My therapist called me out on this (she’s good at that). She said I can’t put it in the corner to ignore forever, that it would sneak up on me and will be always be present, so I need to just embrace it and deal with it.

Here I go:

I have cancer.

I have MOG.

I will have them and a lifetime of treatment to keep me healthy.

Every time I say that out loud or just in my head I immediately follow it up with, “yeah but others are worse off” Which is true but that doesn’t diminish mine. I don’t know why I feel the need to compare. We’re all on our own journey.

What has been challenging for me is starting to move back into the world. (I’m 2 vaccines strong since March 30th.) Seeing people who have known from my FB posts or through the grapevine that I’ve been sick. Seeing people for visits that have brought me food, sent me gifts, been by my ‘side’ virtually in covid times. I’m still figuring out how to reconcile the person I was with the person I am. I am forever changed. I mourn who I was a year ago and it’s hard to put a welcome mat out for an unwanted visitor.

The other thing that keeps bouncing off the sides of my brain is this idea of ‘survivor’. I’m not a survivor, I’m just living. I am trying to keep my eyes forward and find my way into the new world. The new world on the other side of covid AND the new world for me.

I’m finding my footing again on how to live a big life. Each day brings hope! Oh and a trip to France wouldn’t hurt.

PS – after he’s proofed this for me, I just want to say I am eternally grateful for Andy. He is my BigLifeLove and has been with me every step of the way. To be that loved is truly a gift!