aplastic anemia Archives - 100 Days with MK

Do You See What I See?

July 25, 2016

Guys. Do you see it? Look closely at the picture…

My white counts are up! And I have Neutrophils! After 12 days of none. This means the transplant is working!!! And working very quickly. Today is day 11; they say that for many people, counts don’t start coming up until day 14-21. This is awesome!

You know what else is awesome? I am doing so well that I might be discharged TOMORROW! Normally they do not discharge people this early. But since we live a mere 30 blocks away, I was told from the get-go that I may be getting out early. Since I can be at the hospital in less than 10 minutes should something go wrong, they feel ok about letting me go. And I really have been feeling fine and very much like myself for the last week or so. I’m basically just hanging out here watching TV and getting my meds. And since most of my meds can be switched to oral versions, there really isn’t too much keeping me here. So barring any fever or other complications between today and tomorrow, I will be sleeping in my own bed tomorrow night. Yay 🙂

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July

Hair Today, Gone Tomorrow

July 23, 2016

I’m not sure how many men out there are manly enough to shave off their wife’s hair when they request it, but I’ve got one of them. He is my champion. The Red Viper to my Tyrion Lannister in a trial by combat, except successful (spoiler alert for Game of Thrones fans! Sorry!). He handled the buzzer with focus and experience, though I can’t imagine it was easy to approach me with it. And Jenn was there to step in with the scissors when my lions’ mane was too much for the buzzer to handle. In the end it was a successful feat. My hair is mostly gone, save a quarter of an inch or so.

It wasn’t a fun experience, but it was an experience. And I’m glad my handsome champion was by my side, doing the difficult thing that had to be done. And it did have to be done. My beautiful hair was falling out in consistent handfuls. It just became too much. Too messy and too difficult to keep experiencing minute after minute. So now it’s done. I’m bald. And I’m told, two baldies are better than one! Yes, I was told that by my fellow baldie.

It’s certainly weird being bald after having longish hair for the better part of 35 years.

Here are some baldie observations:

(1.) It’s cold in this world! Holy moly! It was the first thing I noticed as soon as the hair came off. I was freezing! I know you all are going through a heat wave and all but it’s been a lovely 74 degrees in here for the last 2 weeks. And 74 degrees with hair and 74 degrees without hair is are two very different things.

(2.) I shaved my head yesterday, so I’ve had one night of sleeping on it. It was basically like I was a porcupine and my spikes fit perfectly into the little spaces in the fabric of my pillowcases and pillow. It was weird.

(3.) It only takes me 5 minutes to shower (one handed might add, since I have to keep my port dry).

(4.) In reality I don’t really feel terribly different, but in pictures, I feel like I look like I have lost an appendage.

(5.) I also feel like Katniss Everdeen. I know, I know, Katniss never shaved her head, but the Hunger Games is on TV right now and I feel pretty badass! So Katniss it is. Where are my bow and arrows?

(6.) I have an evenly shaped head with no significant canyons or ridges. God is good. Sorry to my nephew Matt if you are reading this! I love your head 🙂

Here is a quick photo tribute to my hair. See you soon friend…

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July

Spreadsheet!

July 19, 2016

Hi guys! Sorry I haven’t written in a few days. But it’s really because there isn’t much to report. I’m doing really well. If I was at home and not hooked up to Poley McPoleface, I would mostly feel like myself. Maybe just a sleepier version of myself. I am having a little back pain today, but nothing we can’t stay on top of.

My doctors are really happy with the way I am progressing, and as far as I can tell, the worst is behind me. I do know that one of the drugs I am taking, Methotrexate, can cause mouth and throat discomfort. I do feel a tiny bit of a sore throat, but nothing that I would even consider taking a Halls for yet. But we remain on the lookout. I am told if it gets bad, I get to have one of those pain drips that I can control at my fingertips, so that’s not too shabby. But the odds are just as good that it will stay as mild as it is today.

I had physical therapy just now, and while I have been (mostly) doing my exercises as told, it’s good to have someone here pushing me. It is just too easy to fall down an HGTV rabbit hole.

Today is Day +5 and I wanted to show you some of my blood counts. The major ones we are waiting to recover right now are the White Blood Cells (WBCs) and the Neutrophils, which are a type of WBC that are the first to respond to infection. Right now, since my WBCs are so low, they can’t even count the Neutrophils. Once my Neutrophils reach certain milestones, I can (a.) walk the halls again (I’m currently confined to my room), and (b.) leave the hospital! So those are key counts to watch. Once I engraft, meaning Nan’s bone marrow has taken hold, then those counts should start to go up. It’s just a waiting game at this point.

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