It has taken me way too long to sit down and write this update. In reality I am more like 3 ½ months post treatment. This last month has been incredibly challenging dealing with spasticity and pain. As was true with last month’s symptoms post, if I had written this a few days ago, I would’ve sounded hopeless and morose. The last few days have found more balance and comfort.
This first year post treatment is frequently referred to as a roller coaster but I’m not sure that is quite the right term. Roller coasters are fun and exciting they have ups and downs but ultimately, they are exhilarating. I feel it is closer to a hero’s journey full of beasts to be fought, lessons to be learned, loves to be found and lost, long stretches of solitude, moments of despair and hopelessness, moments of beauty and insight, and ultimately the attainment of a goal, though that goal can be elusive and ever-changing.
The upside of hitting this three-month mark is my immune system is more robust giving me the ability to engage in life more. My blood labs reflect that my baseline immune system has for the most part normalized. I still have somewhat anemic lymphocytes (B cells and T cells) and that will likely be the case for a while still. This means that if I get a cut or infection my first line of defense, my innate immune system, will kick in as normal and likely be effective. If I get exposed to a virus, it won’t be life-threatening, but my response will likely be sluggish, and I may get it more intensely than I otherwise would. Also getting a virus of any kind will suck because it would flare up my existing MS symptoms intensely. I can now go to the grocery store, to physical therapy, to small group gatherings where no one is actively sick, to see the new Top Gun movie wearing a mask, to begin to normalize life.
I went to Kira’s college graduation at the end of May which involved flying and being in crowds. I did so carefully, wearing a mask everywhere, and taking a lot of downtime. It meant a lot for me to be able to be there and partly why I timed my treatment for February.
I continue to do daily physical therapy and I can get out on my trike a lot more now that the weather is marginally better.
Mobility/Walking/Legs
You may recall that I had been weaning myself off baclofen, a medication prescribed to reduce spasticity, to see if it was doing anything for me and to know if it was worth tolerating the side effects. Well, turns out it is. I had weaned down to 5 mg in the morning and 5 mg at night prior to getting on the airplane to Colorado. By the time I arrived I was experiencing intense spasticity, paroxysmal spasms, and pain. Nothing I tried could alleviate the discomfort. I had to rest that first afternoon and evening and missed Kira’s Phi Beta Kappa induction. The next day, Saturday, I had to miss her department graduation celebration as well as the school’s baccalaureate. By that evening I was so uncomfortable we took a trip to the emergency room where they provided me Valium and gave me baclofen to increase my dose (I stupidly hadn’t brought extra). Thankfully that worked and I was able to attend the graduation itself on Sunday morning and all the celebratory events the rest of the day.
Lesson learned. I am now being a better patient and also more “patient”. I’m slowing down my experimentation so I can learn more clearly what everything is doing. My physiatrist has me taking 20 mg of baclofen in the morning, postponing my midday baclofen of 20 mg to 2 or 3 PM to stave off evening spasms, and 10 mg at night. She added 5 mg of Valium at night to help with sleep. I am to try that for a week to see if it makes a difference. I hadn’t noticed any benefit for the first two days and was ready to stop but received good counsel to give it the full week before deciding. Patience, patience, patience. Things are definitely better, though there is room for improvement for sure. The next step will be to add gabapentin.
I am also almost weaned off tramadol at night. The goal there was to decrease hip pain for sleep, but I have found that “wonder rub” is equally, if not more, effective. I have also found that if I get out on my trike it limbers up my spastic hip and adductors as well as increases energy/decreases fatigue. If only it would stop raining.
Finally, I have taken to wearing my AFO full-time and it makes an important difference in my walking gait. Here is this month’s walking video:
I wanted to give the product shout out to Kizik shoes for any fellow MS followers. They are “No hands” on and off with an “uncrushable” heel, lightweight, very comfortable and stable base, and not horribly “orthopedic” looking.
Arm/Hand/Writing
I have not done a thing here over the last month. No arm, wrist, or hand exercises, no handwriting practice. I seem to be very resistant to this work. My focus has been entirely on dealing with spasticity and pain in my legs and hips. I have continued to play ukulele, so that’s something. This month’s hand/arm video:
Fatigue/Energy
After having gone down to 10 mg of baclofen, I went back up to 50 mg per day and then my physiatrist recommended I try the top dose of 80 mg per day. After having done that high dose for a couple of days my fatigue crushed me. It took everything I had to not sleep all day and I felt emotionally miserable and there was no notable difference/benefit with my spasticity. I went back down to the 50 mg per day and the fatigue has resolved. I feel back to my fatigue free self!
Bladder
I met with a urologist, and she was able to confirm that indeed I am no longer having urinary retention – yay! She had me do a very specific tracking protocol for three days and determines that I have “overactive bladder (OAB)”, but not a very severe case. She prescribed Phenazopyridine, the medication you get to relieve UTI symptoms that turns your pee orange and then gave me instructions on doing “bladder training”. This is where you employ a “urination schedule” and urinate at set times, such as once every hour, whether you feel the need or not. You then slowly extend that amount of time until you can hold your urine for around three or four hours which is a more normal pattern. I am currently doing an every two-hour interval. Also, a lot of kegels and “urge suppression”. If this doesn’t succeed, I will see a pelvic floor therapist and/or try different medication. I’m feeling optimistic this will be effective.
Bowel Function
Going swimmingly, normal, no issues.
Hair Growth
Look Ma, new hair!
I am really enjoying this hair length and may keep it pretty short for a long time. I also got cool new glasses. I am curious to see what it looks like when it grows back. Will it be super curly? Will it be straight? Chemotherapy has an interesting and unpredictable impact on hair texture. I had very curly hair going into this, what will it be now? That’s one reason to let it grow longer at first. We shall see…