The biopsy results are in, and the leukemia survives. Ideally, we would start treating the leukemia immediately with something new.
In the less-than-ideal world I'm living in, we can't do that. Complicating matters is the fungal infection that the surgeons think they were able to cut out of my sinuses six days ago. The thing about infections is that they are hard to totally remove physically, which is why I am still being flooded with antifungals.
This means we are trying to pick our way through a tricky and narrowing path.
Even though I barely have an immune system, I do have a trace of one, and it is presumably fighting any infection I might have, including any residual fungal infection. If there is any infection lurking, attacking the leukemia would wipe out what little immune system I have and unleash infections.
So, we will be monitoring me for signs of infection, beginning tomorrow when the ENT surgeons revisit my sinuses. In keeping with the tone of the day, I learned about this plan in a less-than-ideal way. Someone from anesthesiology stopped by my room early in the afternoon to talk about her role in the upcoming surgery that nobody had yet discussed with me.
Ideally — and I feel like I'm due some news from the ideal column — they don't see anything bad and they are able to remove the packing and other stuff that has stuffed up there for the last six days. Then the oncology team and the infectious disease team weigh the confidence in there being no infection against the risk of leukemia getting out of hand. At some point, and this is what passes for ideal these days, I get another round of chemotherapy, I think in preparation for transplant.
The negative result is that they see more fungus and have to do more surgery, which means I'm further from being able to treat the leukemia, which would give the leukemia more time to grow and cause trouble.
My doctor was pretty somber when delivering the news. It felt like a transition from the odds being with me to the odds being against me. For all I know, that transition happened a while ago, but this is the first time I felt it.
Odds are about populations and probabilities. My case is about me. I feel healthy and hopeful, taking the next step, and then the one after that.
Joe,
ReplyDeleteMy thoughts are with you, my fingers are crossed, I'm knocking on wood, playing hymns, playing Bach -- hell, I'll try anything.
Here's to feeling healthy and hopeful.
Lots of love,
Little bro
As somber as this news is it is good to be clear on what is going on.
ReplyDeleteAnd at the risk of stating the obvious, we are with you in spirit!
Much love,
Lauren
Love you, Joe.
ReplyDeleteI like your last comment about populations and probabilities. Thanks for taking one step after another, no matter the odds. The song that's playing in my head now is from one of those Christmas specials that we used to watch together - 'Put one foot in front of the other, and soon you'll be walking cross the flo-o-or, put one foot in front of the other, and soon you'll be walking out the door!'
ReplyDeleteBig air hug, and lots of love, and how about a good night's sleep,
oxoxox,
~m
Sending oodles of loving compassion silly limericks and long scrabble words your way
ReplyDeleteSending Love and repeating positive mantras to speed your recovery. and wishing you some uninterrupted restful SLEEP to help you heal. Lisa and Rick
ReplyDeleteThis Gould essay is worth reading, if you haven't already (though you probably have). I happened to find it first at an oncologist's web site, though original publication was probably in Natural History.
ReplyDeletehttp://www.drsteventucker.com/wp-content/uploads/2009/04/median-is-not-the-message.pdf
We're all rooting for you - hard.
- Jessica Bolker (Ben's sister)
Jessica,
ReplyDeleteThanks so much for sharing that article. What a helpful perspective, and it highlights how important Joe's positive and feisty attitude is.
Last night's news was pretty hard to swallow. Gould's article provides some welcome encouragement.
Joe,
ReplyDeleteStay strong, one foot in front of the other, I know you can do it! Hang in there, everyone is rooting for you!!
Deborah
I'll second Mara's post. Putting one foot in front of the other beats the alternative
ReplyDeleteJNR
Hey Joe, I was saddened to see that you have been having problems. I'm lifting you up in prayer, and praying that you are able to be completely healed. Until that time, I wish you peaceful sleep at night, and comfort during the day. God bless, Broch
ReplyDeleteWe're all hoping you've kicked the fungus, Joe, so you can get back to fighting for your blasts.
ReplyDeleteChin up -- don't turn the corner away from hope!
Julia
I truly love your spirit through the crazy climbs, drops, and turns of your constant roller coaster ride. I’m praying for the roller coaster to stop and let you off so you can begin healing once again. Until that time, I will pray for healing, comfort, and restful sleep for you.
ReplyDeletePatty
Hang in there, Joe. Even a narrow path can get you where you want to go.
ReplyDeleteCoincidentally, my daughter is a freshman at U Chicago and therefore only a few blocks away from you. So - is there anything you might like to have that she could drop by the hospital for you?
Sarah (Longson)