If you would have told us in May what we'd be going through, I think we may have been paralyzed with fear or turned into a puddle on the floor. As it is, we have had those moments throughout this rollercoaster ride. But since this has become our reality, we've just been dealing with things one day (sometimes one hour) at a time. And it's not until we look back, that the magnitude of what we're going through really hits us.
Most people would say I'm a glass is half full kind-of-guy. Well, I saw the bottom of the glass several times throughout October and November, and it SUCKED! I was put on a high dose of steroids, then had to ween off of them weeks later, was given new meds, and more meds to deal with new symptoms from those - it was a lot to deal with and really messed me up. On top of that I was still trying to get used to my new Optune device, an awkward, heavy, constraining reminder of my disease, I almost gave up on it. I was not in a good state. Worse than that, I didn't feel like "me" and was doubting things I've always held true. I felt like I was fighting on all fronts: mental, spiritual and physical. Truly the darkest time of my life.
After meeting with the palliative care team and getting an outside perspective, changing some meds we finally found some balance and I got my "Ed-ness" back. Take home from this: you are your best advocate, nobody will fight for you as hard as you will.
Wrestling with identity
What do I have to offer now that I can't work, run marathons, ride motorcycles, play softball, work with my hands, dance and act with my theater peeps, or even play soccer with my boys? Who am I now that I lack some of these abilities? I'm frickin' Ed Harowicz, that's who. After some soul searching and pride shifting, I realized anything I was/am/will-be good at isn't the end goal, but the catalyst for relationships. All my skills, talents and abilities are/were temporary and my identity is firmly grounded in my faith in Christ and my hunger for community. Which is awesome, because I still have a pretty full tool chest of personality, sense of humor and compassion to foster relationships.
I'm frickin' Ed Harowicz, that's who.
It's hard not to compare what life was like before May 22nd to now, but all that does is take away from today and tomorrow. Even my physical and mental limitations are small compared to what I still CAN do. My job/privilege now is to be the best husband, father, family member and friend I can be. This starts with being a good patient, if I'm not around I can't be any of these.
We've been fortunate to have a great care team going to bat for us. Some worked alongside us closer than others, but do to me no longer working, we needed to switch my insurance which meant switching our entire care team. This was very stressful at first but the timing felt right with my treatment plan. I'm now a patient at the Alvord Brain Tumor Center at the UW and at the Seattle Cancer Care Alliance, some of the best cancer treatment around.
I had an MRI on New Year's Eve and it showed no growth in the spots we’re watching but still some swelling around the area being treated - which is about as good as it can be going with my particular brand of cancer. I started my final month of chemo on Wednesday, the cumulative effect of fatigue is a drag, but considering what my body is doing/fighting I'll put my big-boy pants on and deal with it. I will continue with the Optune (magnetic field therapy read more here) since it is highly effective at stalling cancer growth. I will get an MRI every two to three months to make sure it’s not progressing.
Thank you for thinking about us and praying for our family, it’s amazing to think about all of the support we have and the incredible people we have in our lives.