While I managed to remain upbeat, energetic and mostly positive throughout the radiation treatments, these last three months have been quite the opposite.
It’s had me thinking about how we approach things. How we use our current perspective to set our sights on where it is we’re hoping to go. How we talk about the journey in relation to the milestones. How the day to day is largely unknown and thus not really discussed. It’s what I did.
I knew I had a set number or radiation treatments that would require schlepping back and forth from Johns Hopkins Hospital in Baltimore. I knew I would grow increasingly tired as the treatments went on. And I knew the treatments would be followed up by subsequent 3-month and 6-month MRIs to set a new baseline to determine whether or not the tumor was impacted by the treatments. I also knew I needed to continue getting bloodwork every two weeks and that I needed to maintain the medicinal regiment I had become accustomed too. I understood it could be at least a year, if not two or three, before I would start to see any relief from these treatments. I therefore expected the day to day to be no different then before the treatments.
I had spent a fair amount of time discussing these details with my clinical team, with friends and with family.
We celebrated following the final radiation treatment and I focused on getting stronger by doubling-up on my time at the gym and in yoga studios. I continued to avoid sugar (except for ice cream) and alcohol and I ate as healthy as I possibly could. I approached it as project and attempted to manage every detail – I had clearly defined goals, a timeline and a carefully coordinated schedule to make sure Eddie, our twins, and my business were squarely a part of the plan. Little did I know I wasn’t in control and that my body was already setting another course. In fact, my body started to respond to the radiation treatments in a far greater way then imagined.
After a few of weeks, I noted that I was continually tired, my headache had returned (and with a vengeance) I was beyond moody, my body ached everywhere and I had absolutely no energy. My lack of energy and patience stole the fun from family time with twins, it made it challenging to push through at the gym and it made it hard to remain focused on work for more than 90 minutes at any given time.
Finally, while Eddie was traveling for work, I admitted how I felt. Having sole responsibility for my families morning, evening and nightly routines proved beyond challenging. By Wednesday of that week I was going to bed at the same time our as our three-year old twins and was dragging myself out of bed by 6:30am to make their breakfast of scrambled eggs or oatmeal. It was Thursday morning when Mr. P, Eddie’s dad, texted and asked how I was doing and, without any energy apply a positive spin, I responded quite simply, ‘miserable’.
It was the honesty I needed and it spurred me into action. I immediately sat down and drafted an email to my endocrinology team explaining my symptoms–of which, miserable was really the only way of summing it up–I detailed my overall fatigue, body aches, lack of appetite, odd tingling feelings in my arms and chest, inability to achieve quality, restful sleep, heavy bags and dark circles under my eyes, and just altogether how I everything seemed to feel completely wrong.
Within minutes both Dr. Wand and Dr. West responded and I was scheduled the next day for an adrenal stimulation test followed by a complete endocrine blood panel and my 21-day treatment injection. Later that afternoon I was diagnosed with hypothyroidism and adrenal insufficiency. Both diagnosis suggested my pituitary gland was damaged during the radiation treatments.
The day I took my first morning dose of hydrocortisone the day after. It was like taking a magic pill. My mood changed, my energy surged and within an hour or so I felt again like myself. Not only did I need the steroid to live, but I realized too how badly I needed to feel like myself. I realized how feeling like me would make everything feel better. And it did.