I was just expecting to have labs drawn, liver enzyme numbers checked and a quick office visit on Monday. My results appointment for the 6 month scan and biopsy I had done on the 17th was scheduled for Halloween morning. But the results were in, so I got the news early. I think the doctors really like to get to give good news.
My scan was clean.
All of the nodes that were still enlarged or showing activity a few months ago have shrunk and are showing no active disease. My bone marrow biopsy showed no evidence of Lymphoma.
Which means that we have done exactly what we set out to do: we bought more time. I'm okay, right here, right now. And I am so grateful I could burst. To be able to have more days, months, years watching Jazz grow into an incredible human. More time to keep finding more and more to love about my husband.
I am still dealing with Graft vs Host Disease. I had it initially in my upper GI tract, then on my skin, and now in my mouth, lungs and liver. So, I use a steroid rinse for my mouth (it helps make my mouth feel less sand-papery, but I still can't taste much,) take a very high dose steroid and inhaler for my lungs (I was down to 68% lung capacity, and am breathing well now,) and we are keeping an eye on my liver numbers, which are slowly moving down, thanks to those high-dose steroids I mentioned.
So, in short, sinus surgery is no joke, fungal infections are unpleasant, fatigue is a bitch. It's been a lot of medications and nasty side effects and a surprise hospital stay last month, thanks to the GVHD of the lungs and some sort of bug. (The vomiting, the coughing, the blown blood vessels in my eyes...) But I've made it so far. And I'm starting to feel good for the first time in so long.
I will never use the word "cure." I don't talk about "remission." I know that I am living with this disease for the rest of my life. I will always be touching my neck, watching my clavicles, waiting for that lump to pop up again. Waiting for life to be interrupted again, possibly discontinued. But today is not that day. And all I can say is that I am so happy to have more time. I'm okay right now. And now is all we have.
Today, I find my mind cautiously wandering into almost hopeful territory. Dreams, resurfacing. Like dipping my toe into a cold pond, I hesitate, but for the first time in a year, allow myself to think about the unthinkable "someday." Finishing my degree, having a full-time job that pays enough for us to live on, maybe that little farmhouse on 3 acres, maybe a little sister or brother for Jazz. God, hope is such a hard thing to have, after it all. But nothing can squash it completely. It's just an ember right now, but it still burns. Hope. That thing that simultaneously carries us on and destroys us slowly.
On Friday, I will find out my chimarism. (The percentage of Laura's cells that have taken over my bone marrow and replaced my immune system.) We are hoping to see it at 100% or very close to it. So, fingers crossed.
Now, back to living.
