I've spent the last 16 days inpatient at NIH. I had a fungal infection that invaded my mouth, esophagus and stomach. So eating sucked. I could barely shove apple cider donuts down my gullet without extreme pain. (It did not stop me from trying.) Eating jalapeno chips was excruciating too. Tip: if your mouth is filled with open sores and thrush, don't try to eat jalapeno anything. It is not worth the tears.
It's been awhile, and I suppose I had forgotten how to exercise this muscle, which will atrophy if not used properly. I write long Instagram captions, and I try my mightiest to make my doctor laugh in the emails we send each other daily, and it definitely works but...opening up a Google doc and writing became hard. Some of that was medication, an anti-migraine med that worked to dull my edges and had me forgetting simple words and the definition of the word histrionic. Another thing was that I was at a loss to explain what was currently happening to me. It was hard to grasp. It has not been easy.
But I've also been having a helluva lot of fun. My doctors always joke that they would feel a little bit better if I had 20% less of a social life. They want me to stay in and read sometimes but I can't, not when there's bonfires on the beach and music festivals in my backyard. There is too much to do, and after spending so long on the shores, I needed to jump in. I made so many new friends this year, a thing that is hard to do when you're in your thirties, but a thing I needed nonetheless.
These last 2 weeks have been hard, and every month, when I visit NIH, I am reminded that a bigger hurdle lies ahead. The dreaded bone marrow transplant. We were all ready to do it April 27; we literally had the OR booked to suck out my brother's marrow (he'll be okay), but I freaked at the last minute. And with good reason. I don't want to spend four months in DC, most of them inside this hospital room where hardly anything good ever happens. Bad news is delivered bedside, baby, and there's no escaping that.
So we held off. I intend to keep holding off for as long as they will let me. Which looks like 6 months or more. I don't want to miss my best friend's wedding, and I would be loath to miss summer, my favorite season but I eventually have to do this giant thing that's scary. I am certain I will survive; I have the fight in me, I have the support behind me, I am strong. I am weary, but I am strong.
This blog was supposed to be an update but it's also a love letter. To my family for their steadfast love and commitment; it's never a question of if they will support me. They are there, they are priceless. For my nieces who literally keep me going; there have been dark nights where their faces seemed the only flicker of light, and I will always keep on to be there for them. For my friends, new and old, who envelop me in love and support. From gift cards to their kids sending me videos, it all means so much. So so much. And everyone who has followed this blog from its' nascent beginnings in 2008, and to now, 10 years later on Instagram and Facebook. Thank you. Every message lodges a meaning in me: you are beloved, you can keep on.
I promise to update more when it becomes available but for now, we are hopefully on a steady course toward eventual transplant. Fingers crossed another viable cure surfaces before then but if not, I know we will go through this together.
With love and so much appreciation,
Kelly