I am way behind my own arbitrary schedule for writing this blog post. I am now six months post treatment, six months through the roller coaster first year. This is the middle of the tunnel, the part of just getting through it. I think that’s why this has been so hard to write. There is no new news, no big breakthroughs, no major changes, nothing sexy to talk about.
My original goal was to do a post every two weeks. One post that was musings (thoughts on this HSCT journey) and one that was a detailing of symptoms. So, I’m conflating the two into one this month.
Legs and walking: I hear a vinyl record skipping over a scratch in the grooves, playing the same lyric over and over. That lyric is spasticity, and it is getting as old for me as I imagine it is for you, the reader. The spasticity in my right leg continues to be intense and difficult to describe. My massage therapist is trying to identify which specific muscles are the biggest complainers, the biggest overreactive players. To me it feels like a chain reaction that starts in the upper thigh, crosses my knee, continues down my calf and echoes all the way through my foot. The muscles system itself doesn’t work that way, but my physical therapist has explained that there is a neurological chain that does map to my experience.
We have identified two muscles in the thigh that are the big bullies in this system – gracilis and adductor longus. I have an appointment with my physiatrist for Botox injections into those muscles to see how far down the chain it will impact.
Side notes on Botox: though commonly understood to be used to make your lips fuller, your face wrinkles go away, and overall freeze your face into an unmoving glamour mask against aging, it is also very useful with overactive muscles. Using it, however, is a careful balancing act between relaxing the muscles just enough to be able to use the legs (or arms, or bladder, etc) more freely and making the muscles too weak to be useful at all. About a year ago I had Botox into my right arm bicep which helped that muscle unfold and become more comfortable. It also made my arm and hand too weak to do much else. With the legs, this dance is even more critical. Too much and I won’t be able to walk. Thankfully it only lasts three months.
Because of spasticity, my hips and low back hurt. Both sacroiliac joints and the muscles that reach out from there around the outsides of my hips ache night, and day. I am retraining my body to use my gluteus muscles (asleep and weak for years) and my adductors and abductors in the jobs they were meant to do with walking and stabilization. This retraining includes reminding my hips of the appropriate position to support everything else – tucked under. This retraining also has the side “benefit” of increasing overall pain in the area. I honestly don’t know if this is ultimately a good thing on the way to less pain as the muscles wake up and work out the kinks (my hope) or a more chronic problem that will need another intervention at some point.
I am always looking for new tools to decrease pain and increase strength. I recently purchased a vibration plate that has a good track record among other people with MS for decreasing spasticity and hip pain. I am learning how to use this, and it seems positive so far. More to report later.
There is a difference between my outside presentation and my inside experience. I often look like I’m going to fall. I stumble and lurch, I am entirely ungraceful. But I don’t fall. The work I’ve been doing with physical therapy has created stability in my core muscles. From my shoulders to my ankles there is a strength I feel with every movement. I am in a holding pattern waiting to reach the end of this tunnel when I shed my spasticity like a snakeskin, Clark Kent becoming Superman; underneath is resilience and steel. This underlying strength gives me hope for the future.
Medication update: I am on the highest dose of gabapentin and close to the ceiling with baclofen. I think they are helping somewhat, but not a miracle solution. I continue to have a love/hate relationship with these medications. I am still using pot, mostly at night for sleep. The 6 month mark also means I get to drop one medication, daraprim, the pneumonia prophylaxis.
Arm/hand: I’m leaving this heading in to remind me that I care and to not abandon hope that this can get better. Right now, legs and hip are on fire, and I only have limited time. The squeaky wheel…
Fatigue: Still gone. I am thankful every day that this symptom has resolved.
Bladder: I am still wrestling with some degree of urgency. I’m not gonna lie, I’ve had a couple of peeing my pants incidents, thankfully not when I was in public. The game I am playing is to push the boundary of time from the feeling of needing to urinate to going to the bathroom and occasionally, I miss the mark. My pelvic floor therapist has some quick phrases for this game; “sit still and chill” (slowdown and consciously relax, remind the bladder that it is OK and has room) and “take five” (take five deep breaths, relaxing everything on the in breath and pull up the pelvic floor on the out breath). Work in progress.
Bowel: A little weird. No details here, you wouldn’t want them. It did want to note that I’ve been dealing with bloating which coincides with starting gabapentin.
Hair: My hair is definitely growing back curly, but it was pretty curly before so it is hard to know how much the chemo impacted this. I am at a crossroads of sorts, curious to see what it looks like as it grows and at the same time liking the ease of it being short which would mean a haircut. I haven’t reached the haircut point yet.
