Month: November 2019

This is my little private corner of the internet. Therefore, I feel free to act as angsty as I want here.

Largely, I feel very good. The MS has been stopped, and it’s a new day, a Brave New World, full of possibilities.

BUT I have arrived at home with significantly more weakness than when I left. I would put my EDSS score at a 7 right now, which is completely wheelchair dependent. I rely on family to help me out, as I’m incapable of standing up on my own.

I had been told that this was a part of coming home, and part of the recovery process. The problem is, I don’t think I had been fully prepared for what it would entail

Now, in the past, we weren’t prepared for the full spectrum of possibilities that MS presented. And we were blindsided by how bad it got, how quickly. This feels kind of like the opposite problem. Even if you are unprepared for a situation, a new plan can be prepared, and executed.

I know, academically, that my job right now is to eat good food, and sleep. To help the machine rebuild itself. But emotionally, I also want to start PT. To get myself stronger, and gain back some independence. It’s an emotional struggle.

I will follow the rules, of course. But as one person put it to me before: “I want it all back right now”

Eyes on the horizon. I certainly don’t think I will have a hard time getting myself to the gym for PT when it is time for that, so that’s a good thing. 😀

Edit: Really what I’m saying is that I know the rewards are coming. I can feel that I’ve been even luckier than most. Its just that patience is hard 😉😂

So my blood work after isolation has been coming back in nicely. The good news is its bringing energy and I feel much less bedridden.

Today I will go out in the lobby, and reconnect with some of my siblings who have been stuck in isolation as well. I look forward to many hugs

Today I will receive an infusion of Rituximab. It’s job is to destroy the b-cells in the immune system. These cells are what contain memory of what the immune system has been supposed to be doing. I liken it to The Men In Blacks neuralyzer. It’s like telling the body “a lot of shit has been going on here: chemo, stem cells. Pay no attention to it, it’s all the light shining off Venus.”

That’s today. Tomorrow I have a long meeting with Dr Federenko. And then Monday, I wake up at 3:00 a.m. to get on a plane 🙄 I wonder if I’ll have trouble sleeping

Counting the hours to seeing everyone

So after my procedure with the stem cells. I hade a day off, a birthday party, and then brand new white pajamas were given to me for my stay in isolation

In here, masks are required by everyone. I have been on a lot of bedrest, since my energy level has gotten quite low. Unfortunately that also means that I have almost no core strength left, and my legs are almost gone. The initial high from having gotten control of my pelvic floor, has been diminished, as the abs are unable to maintain the support to help that out. It just means to me, that PT will be that more important when I get home. Given how much time I used to sit at home, I didn’t think there was much atrophy left. I can see that I was wrong now.

What’s also interesting is my hair is falling out. Not so much the hair on my head, although if you tug on that it doesn’t hold on very well. What I’ve been surprised with, is the hair in my nose, the hair in my beard, and even the hair down south. My eyelashes are still hanging on, which I’m told falls out multiple times during recover. So I have that to look forward to

Right now I’m just watching movies, and trying to relax. Some of my siblings in isolation in the other rooms, are not taking it so well, and getting serious cabin fever!

but I think we are all doing a good job of keeping the faith. I know it has worked, and take strength from everybody at home. Love you all

so I woke up wanting to make things just so. I decided to shave off a week’s worth of scruff. I knew I was close to neutropenic so I kept the shaving to the top half of my face, and kept far away from any nicks. Regardless, it made the people around me pretty darn nervous, which, guilty, I found a little amusing.

The transplantation procedure was a full-on procedure in the room. Doctors, nurses, machines to monitor my vitals. It was all very intense. Lots of monitoring how I was feeling in the sensations in my body. The seriousness was broken up a bit when the actual procedure occurred using what looked like an industrial turkey baster filled with tomato paste. By hand, he injected it into my infusion port. I don’t know if it was too thick to do normally, or if they just didn’t want to let it take the time outside of my body to infuse normally.

During the procedure they told me I had to stay awake. Even my dad got into the antsy game and was verifying that the name on my stem cells was mine. But I came through with flying colors, no need for any of the aids. Like I said, during the procedure they said I had to stay awake. Afterwards I napped for about 3 hours. I had this overriding feeling like they had put an extra thick shake in me and I was just processing it.

The next day I was given a day off. My blood work was mostly stable so I wasn’t put in isolation right away.

that night was a ceremony and birthday party for me and four other people, who had each received their stem cells that day. I had had a day to process, so I was the most alert.

Like I have said, there’s plenty to look forward to, and I feel blessed every day. Thank you for all the well wishes, and love and positive energy coming from that end of the world. It’s appreciated far and above what any of you can imagine.

The acronym HSCT is a bit of a misnomer. The real power behind the throne is the chemotherapy. The stem cells simply jump starts the rebuilding of the immune system.

As such, people often comment about symptoms resolving with the chemotherapy.

One of my problems of late has been something I think of in the electrical engineering terms of “noise on the line.” For example, to control a robotic servo, you apply varying amounts of voltage to achieve the desired position.

But if that input line had noise on it (a random amount of voltage always being added or subtracted), it would be really hard to maintain a static position. This is the kind of thing that I’ve been feeling lately. Muscle control has been a moving target. Standing has been difficult because I’m never sure how much effort to tell my toes and heels to apply.

It’s not much, but that feeling seems to be resolving. Motor control has been getting easier. I can still feel that my hands are weak, and my legs are weak. But what strength there is there is coming back under my control. Which definitely bodes well for my future. It’s just re-emphasizing the importance of PT.

In general, though, the chemo is certainly not fun. They have been pre-treating me with the anti-nausea medicine, and yet my appetite tends to hide. But my energy is certainly better then some of the other patients.

One day at a time

I’m behind on my writing, here’s something I meant to cover earlier.

Because of the nature of my trip, my impulse is to not worry about experiencing Moscow. But I realized, for me to fly halfway around the world and not get a picture in front of the minarets of St Basil’s cathedral, seemed ridiculous. So while I was in the process of mobilization, which involved morning infusions of steroids and night time injections, I had most of my days free.

There is a gentleman here named Alexey. He gives tours of the city, but he simply specializes in servicing the patients of the clinic. Alexey knows all the best ways to see the city while sitting or staying in the minimum number of spots 😀. He also has knowledge on tap of all the handicap bathrooms around.

So our day out consisted of visiting a beautiful Christian Orthodox church, visiting Red Square (Red doesn’t reference the communist party or anything, it translates to “beautiful”), including pictures in front of St Basil’s and the Kremlin, a river boat tour (which was really more of a 2-hour nice dinner, but we had our own tour guide to show us the sites), and capped off with a 1:75 miniature show of all the stuff to see inside the Kremlin.

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So that was my adventure into the city. Check! What occurred to me after I got here, that I’ve been quite enjoying, is what I call “food tourism.” I got a recommendation for food to try (pelmeni. Imagine a tortellini but 4 times the size), and I sent my parents out to try and find it. They enjoyed doing this so much that they started trying to bring me back other fun things to try. Meat pies, and peroge, and sausage rolls (hot dog roll)

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So the good news is that they were able to get all the stem cells they needed in one day of harvesting. So then the second day, when most people are still getting mobilization shots and going through harvesting again, I got the day off largely. No shots, and in the afternoon they took out my neckline!

Now, on one hand I had been sort of looking forward to them taking one neckline out and replacing it with another at the same time. I figured it would be one session full of stress. But the silver lining is that I got to sleep at night without anything in my neck. And in the morning I felt stronger, which makes me feel better that the weakness I’ve been experiencing is merely a temporary situation.

But now, also, I’ve been moved to a different room, inside the “Transplantation Ward.” It’s definitely smaller, but that’s the common refrain from people.

After my short reprieve, I also got another neck line. This one I will keep for the rest of my time here. Though, on the upside, everything happens out of it including blood samples and infusions, so no more holes have to be made in my body.

Tomorrow starts chemotherapy.

I realized I hadn’t made a post to update about the treatment so here goes.

I got here on Monday night and checked into the clinic. The next day was full of tests. All kinds of swabbing, and ultrasounds, and x-rays. The next day I had off while they read all the tests. And the day after I largely had off, and met with the doctors about the results of the test.

The day after that I started in on the treatment proper. Actually, it was a relatively easy part of the process. It wasn’t treatment per se, just what they call “mobilization.” For three days, I received steroids in the morning and received a shot at 11:00 p.m. and 3:00 a.m. These shots encourage the stem cells to leave my bone marrow and enter the bloodstream, where they will be collected.

Honestly, this part is relatively easy. You get your steroids in the morning, and then you’re done until the evening shots. This is typically when people do tourism (Even in the Mexico program)

I’ll share a picture of my new necklace, but be warned: this is the kind of thing that would drive me nuts to see

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