Yep, Day +14 – (ANC 60). I KNOW. WHY? Come on, white blood cells… here white blood cells, here, here, white blood cells.
I don’t want to jinx it, but I hear I’m getting out on Friday. That’s the good word. But, knowing what I know and seeing what I’ve seen, they’re not going to let me leave with an ANC of 60. I’m boring the nurses… I’ve only thrown up once. I haven’t fallen at all and I take a shower with the recommended sterilizing pink soap every day.
I will tell you that I’m going to be careful. If I see you out and about, I will not hug you. I will wear a mask. I may wear rubber gloves. However, I will fist bump the shit out of you.
Today was a little rough. I knew that my friend Kelly was coming by to deliver the tastiest healthy cookies ever and some On Guard essential oil. But, I couldn’t hold my eyes open even by 11am. Then, a friend of mine who comes to this hospital every week to do amazing things for people with through the Dear Jack Foundation stopped by. She talked to me until I could hold my eyes long enough to see just one of her and then she had to run off and do some more amazing things.
Then, I was mostly awake for Kelly. She stayed to color… which I truly enjoyed. I colored a picture of a parakeet and she did an abstract picture of what looked like cells (to encourage my cells of course) and asked me if I could name the moments that most filled my heart. The answer was easy… all of the little stuff. Like when Phil Palisoul brings me anything that my heart desires or simply writes egg-cellent messages on the hard boiled eggs he and Nora would bring. That Nora and Emily check on me daily, like that moment when Kelly came to bring me oils and color or Sabrina having sleepover parties with me. Then there’s the bigger stuff where Phil and Nora sterilized a part of their house so that I could come over. Or, all of my co-workers donating their time off. I didn’t know for about a month that Comedy Works was collecting buckets to help me with my bills. And now, friends will be at a show and hear the emcee talk about the bucket and me, anonymously. My friends will ask whoever is holding the bucket for me if it is in fact for me and to hear that the comic smiles and winks. Or, to hear that a Lyft driver and Chuck Roy took a moment to pray with me when the driver mentioned me and Chuck updated them on my status. There are so, so many things. Cards… I got a beautiful letter today from Justin’s Step-Aunt who I’ve only met twice (once while I was on way too many painkillers). Or that a woman who I left on terrible terms with, Marsha, an old boss and friend, sent me a book I’ll keep forever and we once again became friends. That my mom, who I haven’t always had a great relationship with, sat with me on my worst days. That Mindy, my brother, Brett and Mark, and Vicki all came out to do nothing else but take care of me. That my brother and his wife stayed with me for a week and saved my life with stem cells the first time. And now to get to where he gets to fight with these new cells to help save my life again. There are too many… too many times that my heart felt a tickle of complete fullness.
The things I appreciate now, are not all that different from what I appreciated before. The thing I miss most is the ability to help others. I’m just in no state. We threw a birthday party for Justin and I had to take a nap halfway through. I can’t wait to get out of this room so that I can get to a little bit more normalcy. If someone would’ve asked me if I’d ever need to use Long Term Disability, my answer would’ve been no. And now here I am, unable to work full time after a literal dead stop at the grind to find out my life had to change… for a little while.
My day ended with my acupressurist Rachel Rose, who came to me here at the hospital. I was barely able to get out of bed all day. Every inch of my body hurt. And now, I’m going to bed without my nighttime dose of Dilaudid because I don’t hurt and because she was willing to come to me, listen to my pain and help me in her way. And help me to continue to open my heart with vulnerability and hope.
There’s so much more to come… I’m just a little bit ahead of my body.