Life feels like it is on hold right now. Sure I’m still doing all the stuff I normally do, but in between all of this, I’m waiting.
I’m waiting for phone calls, appointments, follow-ups and decisions.
I need an MRI to find out if there is anything “funky” happening in my spine that could be causing this ridiculous nerve pain in my right quad and the pins/needles/numbness in my left quad.
I’m waiting for my surgical consult. I met with my gastro doctor on Wednesday and a lot of decisions were made. I’ve stopped taking Entyvio (new medication that I started in September). I’m going to have surgery and have my colon removed. I’ll eventually end up with a j-pouch (part of my small intestine is used to create a new “colon”). This requires two surgeries and a good chunk of recovery time.
Because I’ve stopped taking Entyvio (which was the last really good drug choice I had), I’m taking two other drugs in hopes that these will keep me in a “remission” until my first surgery date. No one knows if these drugs will keep me stable long enough. There is a plan if I do end up “flaring” before my surgery, but we really don’t want to go down this road.
It’s now that I really feel deeply the impacts of this disease.
All of these unknowns and waiting for appointments and dates, mean that Marc’s life is also on hold. There might not be any riding in France for him this summer (though I think he should still go with his Belgian friends (hint, hint)), his summer racing plans and training are likely going to be impacted, and who knows about cyclocross season.
But, the reality is we can’t just sit and wait. Life has to keep moving forward. So until we have results and dates, we have to keep doing what we do.