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Incommunicado

Posted May 03 2010 2:23pm

I am home after first meeting with the sarcoidosis expert in Ohio and then from a few days of vacation with my sister. I had such high hopes for myself in terms of writing during this trip. I wanted to post a daily update on this blog, so that I could convey the expert’s treatment recommendations. It seemed like such a small goal—to write a daily essay about my medical pilgrimage. I am fortunate to have loyal blog readers—people who have kept coming to this site even after I’ve disappeared for weeks, or when I’ve had nothing but doom and gloom to report.

This trip, I had good medical news to share. Even better, I had non-medical good news to share. Andrew and I were able to have a vacation together with my sister—after I was done with doctors and Jay had to fly home for work. For the first time in many months, I was responsible for my six-year old son, and our only mandate was to have fun. It felt like a milestone I wanted to share with all of you who have stayed steadfastly by my side during two years of chemo, three years of neurosarcoidosis, and many months of difficulties.

But I wasn’t able to write regularly on this trip. Thankfully, I didn’t rupture an ankle ligament (or two) or break a few foot bones (as I have on my past two trips to Ohio and our previous attempt at a vacation). My inability to find the time or the energy to write was much more prosaic and less cataclysmic. It was almost fun to show Andrew the different street corners where I’d popped ligaments—because I’ve gotten so much stronger and healthier since then. But I also realized on this trip how weakened the two years of chemo and the many years of disease have left me. It took all of my focus and all of my willpower to make it through my appointment with the sarcoidosis expert. Then, I had to restart all my internal engines and dig down deep inside myself to summon up energy to have a vacation—first with Jay and Andrew, and then with Andrew and my sister.

After a day strolling around the zoo (or even packing up our stuff and catching a ride to my sister’s), I felt like I had hiked for twenty miles. I looked meaningfully at my computer every evening—and felt guilty that I wasn’t updating readers—but I lacked the energy to pull the machine out of its case, much less try to write.

And then, on my first day back in Montana, I followed the expert’s advice and got one more Cytoxan infusion—while I wait for a new medicine called Cellcept (which will hopefully replace Cytoxan) to build up in my system. This last dose of Cytoxan has been especially brutal—maybe because I was tired from the trip, maybe because I was sad because our dear cat died the day we came home, maybe because the Cellcept interacts with Cytoxan…who knows? I have had energy for nothing but sleeping and nausea.

I am emerging from this dark place. Please know that I’ve been thinking about writing, meaning to write, planning to write, but I just haven’t been able. All is well. I have a new treatment plan. I might have found a way around some of the communication issues that make it difficult for my local doctor to work with the sarcoidosis expert. I am recovering from what I hope is my last dose (ever) of Cytoxan. I will return here tomorrow or the next day and give you the details.


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