sloan kettering 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 🙂

view post

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.

view post

July

Platelets, Ports & Hives, Oh My!

July 8, 2016

So today is my admission date and also the day I received my port. This official name for this port is a Triple Hickman Line or Central Venus Catheter. My doctor actually knows Dr. Hickman who created this port for children. The line was so incredibly effective, that it is now the standard of care in transplants.

The purpose of the port is to for me to be able to receive medications/treatment, hydration, and to serve as an access point for taking blood, which will be done at least daily. This avoids me having to get an IV every time, which I am totally in favor of. The line is threaded into a vein in my chest and has 3 lines hanging out of it where they will hook up my meds or draw blood. These lines are actually called Lumens. My sisters and I were saying the other day how pretty the word Lumen is. Like if a restaurant was serving a Sparkling Lumen Cocktail, I would order that.

Placing the port in my chest is a minor surgical procedure. However, for me, even minor surgical procedures require a platelet transfusion, which I got this morning. I have received at least 10 platelet transfusions so far and only had a reaction to the first one. I got a tiny little hive on my chest. Not a super huge deal but one that has to be addressed. I was given Benadryl and the hives subsided. Because of that little hive, I now receive Benadryl every time I get a transfusion. It’s at the point where I don’t even mind getting them because I know a little nap with coming them!

The protocol was no different today; I received my Benadryl and got my platelets. However, as soon as they were done, I started to get really itchy and notice hives on my chest and neck and all over my back. Yucky and itchy! So everyone was quickly alerted and more Benadryl was ordered, IV this time.

Hives

The hives eventually subsided but the port placement that was supposed to be at noon is now at 4PM. This is important to note because I hadn’t eaten since 10PM last night!! So by the time the procedure was done and I woke up from my crazy Fentanyl and Versed dreams, and declared fit to eat, it was like 7PM. I was ready to start munching on one of my lumens! Luckily the sweet nurses took note of my starvation and ordered me some food, which of course, was the most delicious thing I have ever eaten in my life. They also have Marino’s ices on the menu here!! This place rocks.

So as I type this, I am just here, hanging out with my lumens, waiting for my room assignment.

Port & Lumens

Sully went to run home to pick up the rest of my stuff. We brought one suitcase with us this morning, but didn’t want to hump the rest of it around the hospital all day. You know you’re in for some shit when you check into a hospital with a suitcase, some other bags and your pillow. Boo. I’m ordering a Marinos ice every single day I am here.

Marinos!

view post