My HSCT Journey

So here we are a year and a half post-treatment. To be honest, I kind of thought I would be feeling better right now.

I think that I have been dealing with a longer, gentler “roller coaster.” While some of the tone has died down, like I documented the last time around, some of the new symptoms I’ve experienced since the treatment are still around. Although one painful one is getting better.

I have also been experiencing some increased weakness. But I think that is due purely to how much I’ve been sitting.

The MS Gym has also reorganized itself. Their feedback has been largely positive, but I’m not sure that it is the best thing for me.

I have also become more aware, that the scale for recovery post-treatment doesn’t go from “lots of reversals” to “stayed the same.” There are people that experience worsened symptoms. I am just hopeful that any increase of symptoms continues to improve.

What I have been finding is the amount of time my Fitbit says I spend in REM and Deep sleep has gone up from pre-treatment. I’m hopeful this will continue to climb until I’m sleeping normally for my age. And I have had a couple nights where I slept for six or seven hours straight without getting up to use the bathroom.

I’m thinking, also, many people report this year to be their worst year. Hopefully with the pandemic and everything else in the rearview mirror, things will continue to improve.

I know this sounds a little doom and gloom, but I am still hopeful. And on another note…

Kaiser finally bought me my Bioness devices!

I got the confirmation just shy of 2 years after having found out about their existence. It was a long process of finding the right person to prescribe it, renting them, getting my PT to document the improvements, and finally having her write her referral.

When I first put them on all that time ago, it seemed to dial back the degradation of my gait by about 8 months!

they are what is known as FES (functional electrical stimulation). I like to think of it as what Star Trek calls a neuro-stimulator. They sit on top of my nerves, and when the accelerometers in them detect the correct part of my gait, they stimulate the nerves to lift up my toes.

They aren’t cheap. That’s why Kaiser want you to use braces instead, that wrap around the calf, and hold the foot bed up. They never worked too well for me, and even if they did, it just seemed to me that it would cause the muscles to atrophy. In this case the muscle is actually being used!

Even with them, I’m not back to where I was before the treatment. But my hope is that with their help I’ll get there.

I figured it would be a good idea to write more on this blog outside of once a year. 🙂

I have been doing well. Little, it seems to me, of the “roller coaster” that is usually described.

I have been dealing with a couple of things that makes me say “I’m not back to baseline yet.”

First is weakness. I am still using a wheelchair most of the time. I can use my crutches to walk, but only for short distances. Now, I also acknowledge, that I was probably using crutches past when I should have been using a wheelchair, for safety reasons, before the treatment. But I also have appointments, and confidence that Kaiser is going to pay for walk aids for me. So once I have those, it will make things a lot easier to move around.

The other things I have been dealing with, are muscle “tone” and “clonus”. I may have spoken about these before. Tone is when the muscle flexes and won’t let go for several seconds. This happens to me with my quads. If I get close to straightening my knee, the quad will spasm, and not release right away. Certainly not in a way most people expect to be able to “tell” it to release. Clonus is where the calf contracts and relaxes rapidly, causing my heal to bounce up and down off the floor. It’s apparently a flawed manifestation of the bodies natural defensive reaction to flex a muscle it detects is about to be over-stretched. It was cute when I could trigger it when Samantha was small, and use it to bounce her on my knee without feeling fatigue. Now, though, it impedes standing and walking.

Both of these symptoms have gotten worse since the treatment.

In the past few months, the tone seems to have gotten less painful at the very least. I’m hoping this means it’s exacerbation is on the way out.

The clonus is a bit harder to pin down. It gets worse the tighter my calf is. And by the time I have my next massage, it will be 2 months since she’s been out. Normally, if I concentrate on pushing down through my heel and not being up on my toe, the clonus doesn’t tend to show up. The last time I went in to work towards getting my walk aids, the clonus didn’t show up at all. So I am hopeful with more movement, and time, the clonus will become less of a problem.

I also haven’t been able to “wall walk” again. I have gotten more crunched down, and it’s harder to stand straight up. But again, that sort of thing is commonplace when I haven’t had a massage for this long.

In total, I think there is still some hope that the rest of this year can result in more relief of symptoms that were exacerbated by the treatment. But as opposed to how hopeful I was right after the treatment, that I would be able to walk without aids, I think that is a long ways off, if it’s going to be possible at all.

On November 12th, 2019, I had my stem cells reintroduced to my body. They consider this my new birthday because I was given a new immune system (some people even consider, I was killed off, and my twin was brought into existence).

So, to begin with, chemotherapy is inflammatory. Which is not usually a problem, unless you have an underlying inflammatory disease (MS). The first couple years after the treatment, is called “the roller coaster” because there are many inexplicable ups and downs. Often, your MS symptoms get worse during this time. But the recovery process is often illustrated with the following highly unscientific graph

So I’ve been holding off writing anymore on my blog because I don’t really know what feelings I’m feeling are permanent or portend to anything. It’s a lot of unknowns, and I haven’t really wanted to speak about anything and jinx it.

Very early on when I first got home, I was very weak. But because I was very weak, all my muscles stiffness, muscle Tone (where a muscle flexes and won’t release. This most often happens with my quads, and my leg will stick straight out of my knee.), and spasms which is a big part of my disability, seemed to have gone. I thought, with the stiffness gone, and only time ahead, I would get stronger and everything would be better. But this was a head fake. As I got stronger, the stiffness returned, so I really didn’t know what to think about any improvements that I thought I was feeling.

As an example, a couple of months into the recovery, the amount of time I could stand started to actually go down. Only at about the +9-month mark did it, slowly, start to go up. Even, at times, my knees will stay straight, and it’s only my balance that is limiting me. Other times my knees can’t hold me up, and my ability to stand is greatly diminished.

But still, I have some small notable improvements since the treatment. My fatigue seems to be gone, and my heat intolerance seems to be greatly reduced (I think. I haven’t been walking full time [I’m using a wheelchair], and certainly wasn’t during the summer. I’ve also kept my hair short, which certainly seems to decrease the amount of heat that I feel). My concentration is about the same, but there is also a phenomenon known as chemo-brain, that can be expected to dissipate.

I haven’t seen much physical improvements, in terms of strength or coordination, but…

I’ve joined a PT site called the MS Gym. www.themsgym.com. I’ve known about the MS Gym for a long time and heard many good things. I always meant to join, but also managed to put off joining. I then read a post about somebody who had gone from an EDSS score of 6.5 (That’s using two forearm crutches) to a score of 3.5 (That’s mainly based on walking distance. Anything lower than a 5.0 is not using any walking aid, whatsoever). A kind of off-hand part of that post was a caveat, that this person was pretty religious about the MS Gym, so results may vary. That was enough to push me over the edge and join.

I’m about 6 months into my membership. At first, the results were pretty dramatic. My balance seemed to improve greatly at first. My strength is definitely improving, albeit at a decreased rate than when I first started. But that’s always the case with a new workout routine, right?

I have a new positive outlook that I will continue to improve. I am hopeful with more time, more training, and maybe even some more improvements from the treatment, I will continue to get better. Whether those improvements are solely from the treatment and the continued decrease in inflammation, or from strength training at the Gym, I probably won’t know. Nor do I really care. This new positive outlook is a whole lot better than most MS patients just hoping not to have their MS degrade.

I’ve seen some people say recovery really takes 2 years. I’ve even seen some people say they’re still feeling improvements after 3 years. I’m just hoping it continues to get better because right now I worry that I’ve gotten everything that I’m going to get.

I wall-walked for two steps the other day. That means none of my weight was being supported on my arms with crutches or anything like that. Just my balance was being assisted with my hand on the wall. My legs completely bore my weight. Was this luck? This week I’m back to barely being able to stand up out of my chair without holding onto something. Will I continue to improve my ability to keep my knees straight? I don’t know.

I have witnessed posts from 18-year-olds, and people with low EDSS scores, talking about how they feel cured three to four months post. I think with my disability load and how much damage already exists, and coupled with my age (ah, to be 18 again), I’m probably not going to see much inexplicable, magical reversal of symptoms from the treatment alone, certainly not to make me use the word “cure”.

It just goes to reinforce, this treatment is more effective and more successful, the earlier in the disease progression it is administered. It is starting to catch on as a serious option In countries that have national health coverage. Because they know curing the individual saves on a lifetime of disease-modifying “treatment” costs. I wish I’d known about it years ago, but I’m happy that I had it at all.

I hope only more people learn about it, and it becomes something to be taken seriously. Raise a glass, to The Revolution!

So it’s been 12 weeks since I came home. I figured I should update, to, at the very least, explain why I haven’t been updating.

Prior to the treatment, I had a number of symptoms. Or at least I thought they were different symptoms. I had a great deal of muscle stiffness. Mostly this manifested as “muscle tone,” which is what they call it when the whole muscle flexes, and won’t let go. For example, my quad will often do this, especially if I haven’t moved in a while. The knee will straighten, and I have to wait a few seconds to get control of the muscle again. I also had problems standing for any length of time and in the bathroom getting my muscles to relax.

When I got home, my muscles were very weak. I couldn’t stand, and I had minimal bathroom control. But as I was sleeping 15 hours a day, and eating the rest of the time, things seemed to improved quickly.

But it seemed at the time, that many of my symptoms had gone, and with time the strength would come back. I was looking forward to the best of both worlds. I was able to sleep without my legs getting cramped up. And when I was trying to move around, I wouldn’t get the muscle tone like I did before.

Then as the muscles strengthened, I noticed some of the old symptoms coming back.

Now the stiffness has returned in full force. But, I am sitting in a wheelchair most of the day, so I don’t know how much is a carryover from the MS, and how much comes from just not moving much. It also makes me think, much of my problems before came from not moving much.

So here I am. with a lot of the disability that I thought had gone away, slowly creeping back in.

There is still hope. There is anecdotal cases where symptoms got worse right after treatment, and then got better later on. So there is a chance that is what’s happening to me. But there is also (probably a better) chance that I just got to experience what it would be like without all the muscle stiffness. So the reason I haven’t been updating, is because I’ve been holding my breath, trying to see what was going to happen. What I thought I knew, turned out to only be the way it was in that moment. I feel like much of the next year will be spent hoping. But the problem is, in that time, at no point will I feel confident that what I am experiencing will last. Everything during this recovery period is so individualized. There’s no map. I’m just trying not to go too far in that direction, I’m told thar be dragons.

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