I found out on Monday that my ITP (Idiopathic Thrombocytopenic Purpura) has relapsed, and my wonderful 10 month remission has come to an end. My blood platelet count was down to 70,000...about 50% down from where it had been riding. I had two flares in December and apparently those are the ones that got me. The Rhuemy called me at home to tell me, I don't think I can express in words how bummed out I was to hear the news. It's one of those moments when the air gets thick, time seems to stop for just you...you stop listening properly because you're still stuck on a few words...but the Dr. keeps talking. I looked across the yurt at my husband, and he was watching me. He set down what he was doing.
I made all the necessary phone calls, which I hate doing. My In-laws, my daughters...not my son cuz that's too hard. I let Daniel do that one. Not my brother, I let my daughter do that one. I called the neighbors. And then the worst for last, Twilight. Then I started prepping my bag for the hospital. But I have to take this opportunity to rejoice in my support system...my mother in-law immediately responded with "I'll call my evening prayer chain right away!" My neighbor responded with "I'll feed your dogs if you don't make it back right away." Twilight didn't skip a beat, she said "I'll be there to pick you up and drive you if your car doesn't start." Our good friend in Santa Fe, JP, said "Daniel can stay at my house as long as he needs to" (just a few blocks from the hospital) All the bases immediately covered for me without even having to ask. Plan B was in place.
Tuesday morning we headed to Los Alamos Medical Center, where the specialists are. I got more blood testing, and they said we had to take immediate action. Immediate action means super high doses of Prednisone, for right this minute. We have to make my body produce blood cells faster than my body can kill them. I started to whine and complain...the side effects are still fresh in my mind. I still haven't dropped the weight from the last time we had to do this. I was thinking "bloating, pimples, weight gain, emotional instability, exhaustion, and confusion". The Doctor looked me right in the eye with an expression of compassion and firmly said "this is the only thing we have to save you". I was rocked! We went on discussing a new treatment plan, because the bottom line is that my current regiment isn't working anymore. After we had all agreed upon a plan....The doctor stood up to leave the room, she gripped my husbands shoulder, she looked me in the eye again and said with conviction "We will save you".
There it was again. Save me? Oh yeah, save me from death. Right. That's the issue isn't it? That's what everyone was already thinking except for me. Ahhhhh!! Yes, of course. I'm sure there's a good art piece waiting to be made over these obscure feelings I have.
But the good news is that I'm back at home, and I'm taking the Prednisone, and we have a treatment plan in place. Cellcept. Which thankfully, knowing we were exhausted, Twilight and Thebes sat all last night and thoroughly researched for us.
Daniel and I, being too mentally tired to talk to anymore, cranked up our music as loud as it would go...danced all around our yurt like crazy fools, headbanging and doing the twist....singing corny lyrics at the top of lungs...just feeling our blood pump, and our hearts beat wildly. And because it's the very most life affirming thing a couple has, we made love late into the night until we fell asleep. Life continues!!!! There is art to be made!!!
1 month ago