Where to begin. What do I want my blog to be about now as I move away from HSCT? I’m still tracking my body, I still have MS, I’m still resolving SIBO. But more than anything, I want to begin to write something comprehensive, cohesive, impactful perhaps.
Where am I sitting right now? I’m thinking of this journey, this writing journey, as a description of healing the body in a society that doesn’t look at factors of healing other than allopathic medications and interventions. When allopathic medicine runs out of answers, then what?
I’m looking at healing my spirit, healing trauma, healing relationships; caretaking little molecules of discord that circulate in the body, intercept with cells, and ask them to work harder and dance out of step with their intentional way of being in the body.
I’m writing about healing from all angles with the curiosity of what is possible. I’m also navigating my own relationship between logic and reason and spiritual seeking. Though I don’t feel totally comfortable with that word, spiritual. Holistic seeking perhaps – ways of looking at healing that aren’t always explainable, don’t have evidence-based research papers, don’t get the validity in the world of science. A way of exploring healing that asks for the word surrender, letting go of the reins, giving up the belief that I have control.
I have no doubt that one connection as it relates to healing and health between the emotional world, the psychospiritual world, and the physical anatomical world, is the pressure of stress. That makes sense to me.
But can you unravel stress? Can you go back in time, take that DeLorean back to the future? Is it possible to find the initial threat(s), trace the breadcrumbs back through time to the origins of things? Does it ultimately even matter? I think that is my question, what I’m wondering.
I’m looking to poetry, to counseling, to naturopathic medicine, to psylocibin and psychedelics to learn more about my origin story. I am exploring psylocibin micro dosing to see what is possible there. The brain has the capacity to bind and connect psychedelics with evidence-based research into medicinal mushrooms other than psylocibin – open the brain through psylocibin, and then let the molecules of other fungi in to help build new neuronal pathways.
What I’m seeking is healing. What that means I am uncertain about. On one level, I want healing to mean everything. Full complete restoration of body, a return to the place I started where I could dance, climb, work hard, contribute physically.
At the same time, I’m wondering if healing is coming to a place of wholeness within acceptance of what is – living inside this body, the way it functions, the way it moves, the way it has limits, and still feel alive, full, and whole.
And maybe it’s somewhere in between. Maybe there’s a way that the work – the digging, the origin story search – finds some recuperation of lost function to the point where there is a balance place where I can live with less grief and loss.
Perhaps it is living inside and through the grief that offers a doorway, a window, a portal – an opening to something new – something that I cannot control, plan for, or orchestrate with the tools I currently have.
I have been thinking about the muscles I have developed to cope with this world. The strongest, most developed, is the muscle of competence. I can get things done, I can keep track of things, I can pay the bills, I can make the appointments, I can keep moving forward and keep all the ducks in a row, I can keep the ducks of others in a row – competence, I’m a bag holder.
I have the muscle of articulateness, the ability to use words spoken and written, in ways that others comment on, commend me for, admire me for.
I am a doer and a communicator.
So, what does that leave? Which muscles are atrophied? The muscle to live wholeheartedly, to be open enough to risk being wounded and hurt. The muscle to speak honestly and clearly in the face of fear of rejection and disappointing others. The muscle to be my own voice, not the voice of appeasement and smoothing things over.
The muscle of joy is weak as well. The muscle of being open to and experiencing joy and delight. The muscle of feeling tickled, giggly, silly, playful, messy, childlike – open to awe and wonder.
Where does that leave me in something like this, a blog post to others? It leaves me a human living with MS, wanting to share that story, but not wanting it to be the whole story of either this blog or of my life. I do not want to dwell here, I do not want to live here. I want to live in a house with more furniture than that. I don’t want the story of MS to be the walls of the house, that’s too much space for it to take up, too much structural integrity. I’m not even sure it is a piece of furniture. I think it’s a roommate, one that is sometimes an ally and sometimes an antagonist.
I want to describe my experience of living with MS and how it fits into the picture, but I don’t want to tell the story as if MS is everything, and I don’t want to live as if MS is everything. I want to find the proper place and space for it in my life. I can’t ignore it, ignoring it is as dangerous as letting it take up the whole space. What is the balance? I think the balance shifts depending on the day, depending on the degree that it is shouting or the degree that it is in the background. That is the snowflake nature MS, it is not a constant it is always changing, always elusive, always here, but not always loud.
So, if you are patient with me and interested in this story in all its shapes and sizes, I thank you for sticking with me.
As I’m sitting here now, today I seem to have found a good mix of medications and movement. SIBO appears to be abating, I feel stronger. That’s the story right now. If I were to try and do a blog post every two weeks, it would be stories like this. Where am I now? What am I learning? What am I integrating? Where is my grief? Where is my joy? Where is my deeper connection to life? How do I celebrate? How do I build and contribute? How do I connect.
I wrote this post almost a month ago. I then went through a very dark time related to SIBO and finally getting COVID after avoiding it for almost 3 years. I have come out the other side of that tunnel and am back at this place as I described above. I have decided not to go into detail about that journey because I don’t see the point in reliving it. I say this only to explain how long it is taking me to create this post.
Today is the one-year anniversary of the birth of my new immune system, the day they put my stem cells back in my body to begin the process of rebuilding an infrastructure free of the memory of MS, hopefully. So, I thought I better get my butt in gear and write!
February 14, 2022 (a new meaning to Valentine’s Day) was the day they reintroduced my stem cells. February 14, 2023, my 1-year “stemmie birthday´. Also the day Kira and Zac leave on a three month trip to Southeast Asia. Grand adventures on both counts!
I also want to say a big and beautiful “happy birthday” to Kira who turned 24 on February 8th.
This post is playing catch up, so it is a long one…
Month 10
Ditto Month 9 – it sucked.
Month 11
The summer I turned 16, my grandmother took me on a three-week trip to France. We boarded a plane leaving from Seattle and landed at Charles de Gaulle airport in Paris and while the Airport was majestic, the surrounding part of the city was grittier than I expected Europe to look. I remember being nervous that Europe, and Paris in particular, had been overhyped. As we arrived in Paris proper, the majestic was restored many times over.
We spent a packed and beautiful week in Paris where we met up with my uncle Rob – a seasoned expat who spoke fluent French. Together, they took me to a sweet little restaurant, Au Franc Pinot on Île de la Cité, to celebrate my 16th birthday. To get to our table we had to walk down three flights of stairs underground. My memory tells me the walls were earthen – moving and alive – with carved out shelves for candles. As we descended deeper and deeper into the underground bowels of Paris, I expected our waiter to be otherworldly or at least suspect. That dinner was the first time I tasted (or had even heard of) foie gras – which I enjoyed tremendously and chased down with my first Kir Royale.
The morning after my birthday dinner, my grandmother got up early, before I woke, and bought a watercolor painting from a street vendor. It depicted the exact corner with the restaurant where we had celebrated my birthday. I carefully carried that painting through the rest of our trip. I have brought it with me every place I have lived since – Eugene, Boston, New York, Seattle, and now here to Indianola.
I fell in love with Monet on that trip. We had bags of flour thrown on us from a bridge over the Seine while we rode a Bateaux Mouches. We stayed up late and walked the Paris streets, ate dinner at street cafés, toured museums including the Louvre where I was disappointed by the Mona Lisa – so small. Because we were in Europe, my grandmother didn’t care that I was under 21 and I had wine, beer, and champagne freely.
Bateaux Mouches
We drove through Arles, Avignon, and St. Tropez where we shopped, ate, and explored. With the help of my uncle, we enjoyed a week on a barge through the burgundy region of France – Dijon to Beaune. I was closer, by far, to the age of the crew than I was to the other guests, but it was magical. We took a horseback ride, toured chateaus, ate the most amazing food, and tried without success to take a hot air balloon ride – the weather conditions were sadly never right.
Me and the crew on “La Litote”Crew on “La Litote”, bestill my 16-yr-old heart!Bill from Bath, my biggest crush!
At the end of that boat tour we visited a wine cellar, Marche Aux Vins – a multi-floored cavern with candle sconces on the walls and rows and rows of oak barrels. We were not skilled at the spitting part of wine tasting, which was probably their plan all along, and were more than tipsy by the time we reached the “purchasing room”. My grandmother bought multiple crates of wine to be shipped home and I bought a couple of bottles to take home with my teenage self.
Wine tasting “cup” from Marche Aux Vins.
I share this now because my grandmother passed on Dec 12 at age 96. She was surrounded by family – her daughter and son In-law, two of her grandchildren and their spouses, and a squirrel’s nest of great grandchildren. She was ready and her passing was without pain.
The memories of that trip to France are vivid for me and I know they were vivid for her. Over the years and decades since then, we talked about them often. In October of this year when I visited her, almost 40 years since the trip, we still talked about it as if it was yesterday.
Last night as I was walking downstairs I looked at photographs of her that hang on our stairwell wall and it hit me that I’m the only one who still holds those memories. My co-author of those stories is no longer here. They only live inside me now and I miss her. It reminded me of what she said when my grandfather passed, at his memorial. She shared that the thing she missed most was having a person in her life who knew all the stories. The stories of their marriage, good and bad, the stories of raising their children, the stories of their travels, of their friends, the houses they’d lived in, the meals they’d shared, the decisions they’d made — the minutiae of life. I get that now.
This morning is the misty gray that comes with living in the Pacific Northwest near the ocean. It is quiet, my house is empty. I will offer this cliché… It’s been a long time since my last blog post. I skipped right over a month 10 and find myself now at month 11.
Between my last post and now it has been rough. My spasticity was so intense that I was in bed a lot, not really functioning. It was a dark time which I recognize now correlates, somewhat symbolically, with the darkest days of the year and the stress of the holidays. I lost all interest in writing.
Over the past few weeks, it seems that medication management is starting to work. I feel connected again to the world. I can dream about the future, do physical therapy to get stronger, comfortably participate in social activities. I can sit at the table and play games.
I am not sure what exactly is different. I have tried these medication combinations before with little effect, but now they seem to be making difference. Some days are still rough – two days ago I was in bed all day – some days I feel relatively effortless. Most days are in between.
I have been able to start my day feeling that I can move things forward; that I can contribute. I have more capacity to participate. I am taking on volunteer opportunities in my community and connecting more with friends for conversations and catching up, I feel like I’ve lost time with people.
As I close in on the one-year mark I’m having difficulty wrapping my head around the fact that that much time has passed. In a few days it will be a year since I stepped on the plane to Mexico. Am I better? Did HSCT work for me? More on this at the actual one-year post…
Month 12 – 1 year
Our crazy cohort
Where am I at the one-year mark? Cautiously hopeful. Still in pain but working on it. Still experiencing loads of spasticity but working on it. I would say I’m in the middle of things. I’m on the upward arc from the nadir, I’ve seen the darker parts and I feel they are behind me. Am I back to my baseline? Not yet. Only because my spasticity is still higher and different than before treatment. If that were to go away, I’d be back to baseline or better. My bladder is better, my fatigue is better when I’m not medicated to high heaven. My mood is balanced. Some days are still hard, but those days are fewer. More days are good.
I’m feeling optimistic. I have this sense that there is a strong, fluid moving skeleton underneath a façade of spasticity, waiting to emerge. I feel strong inside. In those rare moments where my spasticity eases, that strong understructure comes forward and makes itself known enough that I can trust it’s there. I feel stronger and more centered than I did in the dark of winter.
I continue to turn over all stones of therapies, modalities, and medications. Under one stone, I found that Swedish Medical Center, here in Seattle, offers a free music therapy zoom group every Wednesday morning. What a fun discovery! It is both meditation and movement therapy – using music in connection with movement and emotional exploration. It connects the mind and the body in a way that makes sense to me. It is both science and heart.
Am I done? Not yet. Am I hopeful? Mostly. Do I regret treatment? Not yet. I think if this spasticity does not relent I might wonder if I did the right thing, but it is still early for that. I don’t think I will regret this even if that doesn’t happen. There’s no way to know if the spasticity wouldn’t have happened anyway. Also, if I hadn’t tried HSCT I would’ve always wondered. And since there are no other options, the risk wasn’t really that great.
I’m feeling at peace. I am starting to have more in my life than just my MS, though it does still take up time and thinking. It will continue to be my “job” for the rest of my life most likely.
So, what am I doing? Learning to use Spotify and Photoshop, volunteering with my local community, reading, loads of physical therapy, counseling, music therapy, writing, spending time with my family, supporting my smaller circle of my intentional community (wise acres), making granola and yogurt – I’m staying busy.
I feel on the cusp of something, some internal revelation maybe, some sort of quantum leap. I’m open. We shall see what the next year holds. Happy one year “birthday” to me. If you are still here, thank you for reading along.
“Birthday” card from Kira.
Symptom Update
Walking/legs/spasticity:
This has been my focus since the start of recovery. I’ve mostly covered this above. It is still rough, still very much present, but significantly more managed than before. I am motivated and energized to do physical work every day. Over the last few months, it has been difficult-to-impossible to do simple exercises, even though I was motivated to do so. Now I get to be creative, enjoy my body more, I get to build. That ability to build gives me hope. I am willing to do the hard work that needs doing if I know things are moving forward. Working with my Physician, I am planning to attempt Botox again on my leg to see if we can impact the correct muscles this time.
Arm/hand:
I have slowly begun to do work here after ignoring it for such a long time, this work is hard – the hardest of all the work I do. I am using a contraption (Saebo Reach), prescribed to me by my occupational therapist (OT) years ago. It was designed for stroke survivors to reduce their arm spasticity and regain function through neuroplasticity. I recently started using another product from Saebo – the Estim Micro, that I wear at night along with the Saebo Stretch the I have had for years. These therapies are not a quick fix. They are awkward and cumbersome, but a trust that over time and with a ton of committed intention, my arm and hand can improve.
Saebo ReachSaebo Estim MicroSaebo Stretch
Bladder:
My bladder function continues to be mostly normal, thankfully. I can live like this forever, even if it isn’t perfect.
Bowel:
Trigger warning: skip to the next section if you are squeamish about scatological things.
By and large, my bowel function is normal. Regular, constipation managed, not too loose, in the sweet spot. However, I recently had an episode that many people with MS will relate to. I had been increasing my magnesium dose to see what my body could tolerate – this can lead to loose stool. I drove to a medical appointment, got out of my car, and preceded to unload my walker to assist me getting into the building. As I am bent over to lift the walker, I felt a sudden bowel movement urgency and simultaneously felt that my anal sphincter was unable to hold in the impending poop. It just slipped out into my underpants. Thankfully, I am perpetually early to appointments. I had time to clean up.
I entered the facility and went directly to the bathroom. I took off my shoes, pants, and then carefully took off my underwear. Thankfully it had been contained and my pants were spared. But oh, what a “shit show”! And, what a cleanup! Scads of toilet paper, hand towels, and huffing and puffing before I was “shit free”. I flushed the toilet paper, put the hand towels and my underwear in the garbage bag, removed the garbage bag from the container and tied it shut, put my pants and shoes back on, and went to check in. Embarrassing, humiliating.
I have had a small handful (thankfully) of moments like this over the last 15 years, but this was by far the worst. It reminded me that there is still some MS vulnerability in this area. Note to self, back off the magnesium.
Hair:
Still in the awkward grow out phase. My hair continues to grow up before it turns downward. Still curious and patient.
While my MS fatigue continues to be at bay, the combination of medications that I am on have fatigue as a side effect, so we’re playing with different medications to find a combination with the least downsides.
Medications
I have a strong drive to be on as little medication as possible. I think it is a fear of polypharmacy, learned in graduate school. Too many medications = bad things. I reassure myself that my underlying cardiac health is strong, my kidneys are working well, my pulmonary system and liver are healthy. I don’t have an issue with blood sugar regulation. So maybe I’m less at risk than I think.
I don’t plan to rock the boat, even though it is my impulse to wean off medications that I don’t know concretely are working. Spasticity is there underneath the medication like the proverbial sleeping tiger. It could make itself known if provoked.
Current meditation cocktail:
Baclofen: Maximum dose – 20 mg, 4x/day.
Lyrica (Pregambalin): 150mg, 2x/day, 75mg 2x/day. This is a medication that can be used interchangeably with gabapentin. It is metabolized somewhat differently and is known to have a gentler side effect profile. I am two weeks into this, and the jury is still out as to whether or not my fatigue is better with this.
Tramadol: I have been down to 25 mg at night and one night I used none. That night I slept very poorly and had a rough day emotionally. Still sorting this out. I don’t like being on an opioid, but it makes a difference with sleep and weaning off, even at this very low dose, is impactful.
Duloxetine (Cymbalta): I have been on this for a little over two weeks at a moderate dose. This is an antidepressant that has been shown to have beneficial impacts on pain.
“Duloxetine is also used to treat pain and tingling caused by diabetic neuropathy (damage to nerves that can develop in people who have diabetes) in adults and fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep) in adults and children 13 years of age and older. It is also used to treat ongoing bone or muscle pain such as lower back pain or osteoarthritis (joint pain or stiffness that may worsen over time) in adults. Duloxetine is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs). It works by increasing the amounts of serotonin and norepinephrine, natural substances in the brain that help maintain mental balance and stop the movement of pain signals in the brain.” Source: https://medlineplus.gov/druginfo/meds/a604030.html
The idea here is that it can increase my pain threshold, so I am less triggered by pain as a source of my spasticity. It may replace Tramadol to help me sleep the night, and, as a side bonus, it may give me an overall sense of well-being. I am interested to see if this might be beneficial. Not noticing anything yet as relates to decrease pain, but I do believe it may be having a negative impact on fatigue during the day as well as some blurry vision
Cannibis: I am currently only doing this at night to help me sleep. During the day it is inconsistent and its benefit to spasticity and consistent in making me feel high, so I don’t use it very often.
Seven months in, more than half a year since treatment.
I am on Facebook groups related to HSCT: HSCT in Mexico, HSCT in Russia, HSCT in general. The posts in these groups are mostly people considering HSCT at the beginning of the process. They are in the questioning phase, trying to get information, looking for certainty and guarantees where there are none. How much does it cost? What should I bring? Where is the research? Will it work for my specific snowflake of symptoms and diagnosis? How many people had it improve their walking/pain/fatigue…? For how many people did this not work? Did you regret it? Reaching for hope and afraid of the future no matter which choice they make.
Many will never make it happen – because of fear, because of money, because of family demands, because it just isn’t right, because they are not willing to face disappointment, etc.. I was there, I remember how that felt. I had all the same questions, though I did do a better job of searching the page history before asking a question that had already been asked over and over. I trolled the comment threads. I read through the files. I dug up the research – less research than I wished there was. I wanted stone-cold guarantees and clarity. I ultimately had to find my way to make the choice inside the discomfort of ambivalence.
And then I did it. I went to Mexico. I spent a full month there. I went through treatment that was simultaneously hard and brief. I spent the money. It is done, in the rearview mirror. Now the calendar is back to spinning forward faster and faster and when I look in that rearview mirror, the memory of that time is fading fast.
After I got home, I followed the blogs, private Facebook groups, and Instagram pages of people who were in the cohort right behind me. I paid close attention to their journeys, and I had personal connections to some. The next month came, and I paid a little less attention, the next month even less. Now I am no longer following the stories. I pop into the FB groups of people asking the questions at the beginning and answer things where I can, where others haven’t already answered the same questions a million times over.
I am currently in a Facebook group of people who have completed the treatment with the questions we all ask now. How long did you feel this way? When did things change for you? How long was your roller coaster? What did you do to get through it? We are all looking for stories that match ours, for a string to hold onto out of the maze. There are many for whom this time is now far in the rearview mirror. They pop in less and less to offer stories and advice. For now, I am of the ones asking the questions, seeking stories that match my snowflakes self. There will come a time when this phase is in the rearview mirror for me as well.
Legs/walking:
These days I am feeling stuck in pain. Spasticity is a bitch. It seems to be getting harder, even though I felt like it was as hard as it could get already. I hope, I trust. I hope, I trust. I hope, I trust? that this is just a tunnel to get through. I have to believe that. These are still early days, 7 months into a recovery arc that lasts up to 24 months for some. However, when I live in this body day by day, each day can feel eternal and the next seven months inconceivable.
Occasionally there are moments where I feel like I could dance. These moments come out of nowhere. I don’t know what causes them and I don’t know how to re-create them. But they arrive and give me hope; if my body can do this at all, it’s capable of doing this more. The connections aren’t lost. The structure, the skeleton of movement, is there waiting to be released. These teaser moments are a gift. Water in the desert. They take my breath away. They are joyful. They are too brief.
In the meantime I continue to do physical therapy, massage therapy, cardiovascular exercise to the best I can, and the MSgym. My goal, my mission, is to keep that skeletal under structure strong and resilient for when the spasticity eventually subsides.
The Mollii Suit
A woman from the UK, who is about two months behind me and dealing with the same degree of spasticity/spasms, recently posted a photograph of herself in what looks like a wet suit.
The Mollii Suit
It turns out it is a rehabilitation apparatus full of electrical impulses, “functional electrical stimulation”, called the Mollii Suit.
“What is the Mollii Suit?
The Mollii Suit (formerly Elektrodress) is a functional garment that consists of a pair of trousers, a jacket and a detachable control unit which sends electrical signals to the user via electrodes on the inside of the garment. Mollii is an assistive device that people with muscle stiffness (spasticity) or other forms of motor disability can use in their home environment. It can help to reduce undesired reflexes and stiffness, thus enabling an improved posture, range of motion and functional ability. It can also reduce certain types of pain and improve sleep patterns.
How does it work?
The suit has 58 electrodes which can be combined in various ways. Mollii has a control unit which is individually programmed for each user. The person prescribing Mollii uses a computer program to adapt the active electrodes and the intensity (which muscles are to be activated by means of current). The settings are then saved in the Mollii control unit making it simple for the device to be used at home. Mollii uses low level electric current to produce basic tension in the musculature. The current stimulates the antagonist to the spastic muscle. If, for example, the biceps is spastic, the tricep is stimulated which in turn makes the biceps relax. Relaxing the muscle enables active movement and a gradual improvement in function. The physiological mechanism is called reciprocal inhibition.
Who can benefit from using it?
Mollii can be used by adults and children with neurological conditions such as multiple sclerosis, cerebral palsy, acquired brain damage, spinal cord injury and stroke. Mollii provides tailored rehabilitation in the form of a garment with electrotherapy programmed according to the individual’s requirements.”
This woman reported that after a short time wearing the suit it greatly relieved her spasming. The relief doesn’t last forever, but it is meaningful relief that can be repeated. This suit is not available in the fucking US because of the fucking FDA. Even in the UK, on the NHS, I don’t believe it is free. At this point, if it worked, I wouldn’t care if it costs something. I want this suit.
Arms/hands:
I’m still not putting my focus here because the spasticity in my legs and the pain in my hips are so on fire. Someone in my online physical therapy group mentioned she noticed she was deferring to her stronger hand/arm because things were getting harder with her affected arm. Because the brain reinforces what you do it every day, through neuroplasticity, she was making it a practice to embrace the struggle and use her challenged arm even though it made things slower and more difficult. Use it or lose it. Challenge accepted.
Fatigue:
Fatigue continues to not be an issue, at least not MS fatigue. I can feel exhausted when my muscles contract all the time, but that is different and hopefully solvable. I don’t have hours or entire days where I just have to lie down and take a nap for no apparent reason like I used to. I’ll take the win.
Bladder:
Ups and downs here. I’m noticing a correlation between increased overall spasticity and increased urgency. Mostly this isn’t a problem. I no longer worry about being out somewhere and having to find a bathroom quickly.
Hair:
A picture is worth the proverbial 1000 words. I will add some words, however. I am reaching the uncomfortable part of growing out one’s hair. Decisions need to be made – stay the course through the awkward growing out phase, or cut it short again and never know what the future could hold. Given how tightly curled my hair is right now, I imagine it will be going up in all directions, for a while, before changing tack and heading south under the weight of gravity. My curiosity for what it will look like after chemo is keeping me from cutting it even though it is so easy short, the practical choice certainly.
Medication:
A lot going on in this category this month. I continue to be on Baclofen and gabapentin at their maximum dosages, I’m not sure they’re making any difference at all. Beginning this week, I am weaning myself off the gabapentin. I am doing this for the most part because I don’t think it’s helping, at least not very much and definitely not enough. I am also doing this because I’m pretty sure it is causing weight gain and digestion woes.
Baclofen, I’m coming for you next! Hopefully this doesn’t screw me over the way it did last time I tried to wean off a medication.
About three weeks ago my physiatrist injected Botox into my right hamstrings and calf muscles to see if that would reduce the spasticity. It can take up to four weeks for this to fully take effect but so far, I’m not noticing anything. It is critical to start low with this medication. Too little and you feel nothing for three months. Too much and your leg is a noodle for three months.
The process of injecting botox into the muscle is fascinating. The practitioner has a device attached to a very thin needle that delivers the botox. The device can “hear” the activity/contractility of the muscle. The practitioner literally fishes around with the needle inserted into the muscle, looking for the highest amount of “sound” the muscle is making and then injecting at this location. It is like standing behind an old television set, adjusting the rabbit ears trying to get the TV signal to come in. Or like moving around the room with your phone trying to get better signal when you are at the limit of the range.
Botox device and accoutrement.Injection sites
Last week I started taking LDN (low dose naltrexone). According to the National MS Society:
“Naltrexone is an opiate antagonist that is taken orally to block opioid docking sites (receptors) on cells. It is approved by the U.S. Food and Drug Administration (FDA) for the treatment of addictions to opioids and alcohol. At significantly lower doses, low-dose Naltrexone has been used off-label as a treatment for various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases.”
I am now at the highest dose possible for this, 4.5 mg per day. The hope for this is decreased pain in my hips and back. So far not noticing any benefit here either. I will give it another couple of weeks.
We are lucky to live near one of my HSCT cohort patients and his wife – Bob & Kandace. We got together for dinner a few weeks ago, so sweet!
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.
This is the post where I document, on mostly a monthly basis, the experience/progress/reality of my symptoms; tracking how things are moving. I resisted writing this post because I find myself in the long tunnel of recovery. This is the place where things get worse before they (hopefully) get better. I would like to able to report linear progress and tangible outcomes. That’s not how this works
I knew going into treatment that the first year was likely going to be rough. I knew that many people encountered significant increased spasticity. I knew the beast was coming. This beast doesn’t move through quickly. It doesn’t sit down and rest quietly by the hearth. This beast is vigilant, relentless, and resistant, impervious to the slings and arrows of my outrageous fortune. So, I do the best I can. I search out tools and tricks to settle the beast down, to distract it, to make it sleepy, if even momentarily.
My sorceress bag includes gabapentin, baclofen, tizanidine, pot, physical therapy, acupuncture, the swimming pool, zero gravity bed positions, pure wave massagers, tiger tail rollers, therapeutic massage, mindfulness meditation, magnesium glycinate, pelvic floor therapy, vibration plates, lion’s mane mushrooms, Valium, Tramadol, sheer force of will.
Medical Experimentation:
Over the last two weeks I have started gabapentin and titrated up to a current dose of 900 mg three times per day. I started at 300 mg three times a day and thought, “hmmm, I feel something. A tickle of relief.” But it wasn’t enough, and I slowly increased to 600 mg three times a day. At first it felt miraculous. It wasn’t perfect, but I could move more fluidly, more freely, I could feel my legs – they belonged to me. But it was fleeting and inconsistent. I read research that reported the sweet spot dosage of 900 mg three times a day. So that’s where I am now. If I want to, I can go as high as 3600 mg (1200mg 3x or 900mg 4x) per day. I will hang at this dose for a while to see if it settles in and evens out. It seems to not work very well in the morning, only coming online mid to early afternoon. I find I feel best in the evening before bed and the worst in the morning getting out of bed.
Research also shows that it can take up to four weeks for the full impact of the medication to take effect, so I will be patient. If I find it gives me relief more often than not, I will begin to wean off the baclofen, carefully this time, and see if I need to be on both.
I am also doing a more scientific, patient way the use of the different RSO (cannibis oil) strains I have found to be valuable. Here is a little of what I’ve learned:
Milky Way RSO: seems to give some relief but also makes me weirdly high, uncomfortably so. It is not a good high, but a paranoid disconnected one. I don’t understand why because it has very little THC. I want this one to work for me because it has a high CBG content and that is supposed to positively impact many different areas. So far, I kinda hate it but I haven’t quite given up yet.
Sour tsunami RSO: this one does not make me feel high until I take a very high dose. Its THC content is the same as Milky Way so I do not understand this. It also doesn’t seem to have the same intensity of impact in terms of relaxation. I am trying to pay attention to it more subtly by doing it throughout the day. The jury is out.
Critical Mass RSO: this one is magic. It absolutely relaxes my body. But it can also make me quite high. It is a lovely, floating, tingly, soak into it sort of high. A lie down with your eyes closed feeling every tingle of the body type of high. It is very helpful with sleep, but too drowsy making for daytime use.
The other thing I’m aware of in writing this post is how difficult it is to express the internal feeling of the body in a way others can understand. Each walking video I provide from month to month likely looks exactly like the other to an observer. But the feelings in my legs, in my knees, in my hips can be wildly different, hour to hour, day to day. My walking is hard right now. My spasticity is through the roof. The pain in my hips and sacrum are constant. But you can’t see that in a video, and I try hard not to dwell on them.
This is one way recovery can look almost five months in. This is the dark part of the heroine’s journey, the place of challenge and fortitude, slaying dragons and monsters, holding faith, holding on, holding hope.
In summary, my spasticity is very high. It is known and expected. It is likely to quiet down, though it can take time – months to years, and for some never. So, I’m living in that belief that I am of the many who just have need to hold tight to the wheel through the big waves to the restful pool at the end. The brain is a powerful thing and can write the story. I intend to know that I did my best.
Symptoms:
Walking and legs: this is pretty much covered in the writing above. High spasticity, hip pain, lots of experimentation.
Arm function: ugh. All my energy and attention has been focused on what’s going on in my legs and I really don’t have bandwidth to put the spotlight here.
Bladder: I feel like this is getting better. I can go longer between trips to the bathroom. I still feel urgency and some leakage. I see a pelvic floor therapist this week and I’m excited about that. More to come.
Bowel: Mostly continues to be normal. For some reason I don’t understand I’ve had significant bloating last couple of weeks.
NEW SYMPTOM – Hot Flashes: I have been postmenopausal since 2017. I had minimal hot flashes throughout the menopausal process. Lucky me, they are back! It is a known thing that the chemotherapy agent cyclophosphamide impacts hormones and can put women into menopause early. Given that I was already postmenopausal, I didn’t think this would impact me. Well, it did. I’m having more hot flashes than I was during menopause. Fun.
Hair: Hair growth is to the point I no longer look like a cancer survivor. I am fast approaching the decision point of whether to keep at it this length or grow it out. I’ll leave you with that cliffhanger!
Musings for this month. It’s been a whirlwind since I last wrote. Not even sure exactly where to start. My daughter and her boyfriend moved back home after college graduations to live with us for the next six months or so – lots of transitions and moving parts. Shortly after their arrival my daughter’s boyfriend went into the hospital with a ruptured appendix and we all had that as our focus for about a week.
We got to breathe for a couple of days and then on my birthday, On Monday, June 20, we woke up to Cassie, our 14-year-old beautiful mutt of a dog, drooling and panting, obviously in distress. “The kids” had made a beautiful birthday and Father’s Day breakfast for us which got lost in the upheaval. We had to grab food and eat on the run as we took Cassie to the emergency vet clinic.
We learned that Cassie had cancer on both her spleen and liver. It also appeared something had ruptured and she was bleeding into her abdomen. They gave her medication to keep her comfortable and to hopefully stop the bleeding and sent her home. She was comfortable that afternoon, through the night, and into the next morning.
When we woke, she was extremely lethargic. With any real movement or exertion, she would breathe heavily, pant, and drool. Around noon, Nils and I looked at each other, both wishing we had more time, knowing we didn’t. Kira came home from the farm at lunch, and we all spent the afternoon petting and laying with Cassie, giving her bites of anything she wanted to eat, crying, telling stories, saying goodbye.
We were lucky to find a vet who could come to our home to help us let Cassie finally rest. It was solstice, a day of transition that pulled on our hearts at with a deeper meaning this year. The day with the most light and the least dark is the day our girl chose to say goodbye. She was nothing but light in our lives and the lives of anyone who met her. Around 6 PM on Tuesday, June 21, sweet Cassiopeia Rain left us with cavernous and tender heartbreak. She also left us with the gift of 14 incredibly beautiful years.
I’m here now little over a week later still grieving and feeling the weight of loss on my heart. I hear her many times a day as a gentle exhale, tags rattling, nails on the floor. I look for her at the door to come inside or go out. She was my shadow and I feel her so nearby still.
Add to this the political landscape of my (and all women in this country’s) personhood and body becoming even more of a second-class citizen without autonomy, less restrictions on the unnecessary weapons of intimidation and murder in our communities, less legal ability of our government to fight devastating climate change, the insertion of religion into our school system-the merging of church and state in the context of our children’s learning – to name only the most potent of the gut punches of the last two weeks to an already stressed out, running on fumes body.
The Body Keeps the Score
I share this as a segue into my body and recovery. The body holds grief, stress, and trauma in its cells, in its tissue, in its fluids. This is true for all of us, whether we notice or not. Living with a chronic disease makes it impossible to not notice. All the challenged, vulnerable places become more intense; it amplifies the disconnects, it amplifies the tightness, it amplifies fatigue. It increases the heat, and it brings pain more to the surface, louder, more complaining.
That is been my body these last weeks. spasticity more intense, hip pain more, many things resonating at much higher, uncomfortable level.
The other factor that is hard to quantify is the degree that this increase, and rather sudden change, in spasticity is chemotherapy related. This is the theory I am choosing to invest in because of the way the spasticity is showing up; it is very different than what I had prior to treatment. With this theory in mind, it is also likely transient and will let up at some point, even though that “some point” could be eight months to a year.
My physiatrist is having me try different medications to find a cocktail that works to get my spasticity and pain better managed. I am becoming more patient and scientific with medications and anything else I am trying as an intervention. This means trying one thing at a time instead of throwing everything on it frantically, all at once, which has been my instinct when things are so uncomfortable. Pain makes it difficult to be patient.
My doctor’s first instinct was to figure out how to help me sleep better. Perhaps if I slept better, more deeply, would that help the symptoms quite down. We tried Valium 5 mg at nighttime. I think it maybe helped some, though not dramatically enough to feel excited or that it was worth it. I tried it for a week, then I did a week without it, then tried it for a couple more days. Maybe?
We are now trying gabapentin. This is an antiseizure medication commonly used for nerve pain. I am starting at 300 mg three times a day. I started on Monday evening and immediately felt benefit. I also felt more energy, more lightness. That held true the whole next day. Wednesday I instead felt a crush of fatigue, which is a common side effect of gabapentin, and I also felt less benefit.
It is now Thursday, and I am feeling somewhere in the middle. It is hard to tell if it is the gabapentin or two nights of poor sleep. So many complicating factors. I plan to give it a week at this dose and then begin to increment up. I’m optimistic based on the first couple of days. The upper limit of gabapentin is 1200 mg three times a day or a total of 3600 mg per day. All depends on how you tolerate the side effects. I am carefully weaving in the strains of cannabis have found make the most difference in trying to find that careful balance between benefit and “high as a kite”. I have also fully weaned off of tramadol at night for pain.
Something deeper?
Today I had a significant mind shift. I have been thinking, unconsciously and habitually (my Gemini nature?), of my body as something to be pushed, cajoled, tinkered with, fixed. I have schedules, routines, targets and goals, urgency, and desperation. This is an outside looking in perspective. I am doing things “to” my body with an ache to get back what I’ve lost and a grasping, time-is-running-out, energy.
I am not sure why today, but I stepped in to surrender (at least for now) and a quiet pause. Today I chose to relate to my body like I’m learning an instrument, or courting a lover, or making a new dear friend. This means slowing way-the-fuck-down to take stock. This means breathing deeply with each movement. This means sometimes leaning into pain with gentleness but also persistence. This means letting up when my body says “that’s enough”. This means being present enough to notice the difference.
This means no longer tracking repetitions or hours or exercises. This means getting down on the floor or sitting in a chair or standing against a wall and listening as my body says what’s next. It is a sacred humbling.
I had tears move through today as Cassie came into my mind and heart. A quiet moved into me as I felt things settling in to place. It feels like an important shift, like a caretaking, loving hand, a safe place. It feels like a place I don’t spend much time and it would serve me to learn this place better.
Saturday is three months since returning from Mexico. My experience of time passing is both slow and sudden. I cannot believe it has already been three months and at the same time every day feels long and drawn out. It reminds me of how I felt the first year with a newborn.
I have been putting off writing this post because I’ve been struggling a lot in my body. Depending on when I sit down to write, I seem to be either morose and hopeless or excited and hopeful. Today feels more balanced leaning a little towards excited and hopeful. I have had days that feel so hard it breaks me and I sob. I’ve had days where I’ve written in my journal, “this was a fucking good day!” Big swings. This is a boot camp training in Buddhist nonattachment.
I am writing mostly to document the HSCT process and to be able to see changes over time. For that to be useful, I need to be honest and objective about my experience when it is my nature to write an optimistic, future forward, triumphant version of my experience. Well, the last couple of weeks have sucked. My spasticity is still rough. Often, I have periods of spasms so intense and painful that I can’t think of or do anything else.
Typically, in the morning, my right leg wants to go into “extensor spasms” where my leg muscles all push simultaneously to extended/straighten my leg as far as it possibly can and with immense force. This hurts. It makes muscle fibers burn and I can’t get it to stop. On the flipside, in the evening, my right leg goes into “flexor spasms” where the entire leg from hip, to knee, to ankle) flex upward suddenly and fiercely, like regimented marching, over and over. This also hurts and makes it next to impossible to do or be anything else.
I continue to experiment with different strains, delivery methods, and dosing of different cannabis products. I’ve added more use of ibuprofen, a topical cannabis salve that is remarkable for pain, and topical Voltaren – also for pain. Sometimes I feel like I got it dialed in and then I’ll try the same combination that it won’t work at all. I keep a daily log on my phone to try and find patterns.
“If I take ibuprofen and half a gummy at 5 AM in the morning, does it make it easier to get out of bed?”
“If I make sure to dose with cannabis every two and half hours, do I stay ahead of the spasticity train?”
“Is ibuprofen and topical pain relief more effective?”
“Does it work better if the cannabis is high CBG? High CBD? High THC? Half-and-half?”
It would probably be faster learning if I did this more scientifically, but I want to feel better fast, so I tend to throw things at it with well documented desperation.
I recently ordered a book on managing MS symptoms and found a passage in the spasticity section that outlines “paroxysmal spasms” and describes exactly what I’m feeling. The physician author recommends an anticonvulsant medication, Tergretol. I met with my physician this morning and she has prescribed a similar medication for me, Oxcarbezine, to see if it makes a difference. In her experience this medication is equally as effective with less side effects. I will pick up this prescription this afternoon and get started. It can take up to two weeks to know if it is effective at all and if we need to do any dose changes before determining. Fingers crossed.
Thought process on spasticity causes/triggers:
MS causes spasticity and I had it prior to treatment. Experience then was of a constant moderate stiffness and difficulty bending ankle, knee, hip on right side. That was pretreatment baseline.
Increased spasticity, often lasting 6 to 12 months or longer, is common after chemotherapy with cyclophosphamide. Typically people report it starting closer to 8 or 10 months post treatment, but a meaningful contingent have it kick in around 2-3 months post treatment. Maybe I’m in that bucket and that’s why the intensity has increased.
Decreasing baclofen can cause rebound spasticity. It is unclear how that process is impacting my experience.
The last couple of weeks have been getting ready to travel to Colorado for Kara’s college graduation. This is a big deal for me three months post treatment. I’m still definitely in recovery and this will take a lot for my body. But it means so much to me to be there that it’s worth it. Is the stress about future events triggering my body to have more spasticity?
Pain in the muscles of my hips and low back, both caused by spasticity and triggers spasticity. This is why pain management is an important part of this picture.
Two important insights/learnings from the last couple of weeks:
More is not better. Because of my personality my instinct has been to try and do as many reps of PT exercises as I can and to increase what I can do every couple of days; ultimately to “push”. The more I can do, the faster I will heal right? This is paradoxically untrue. The harder I push, the more my body fights back. I’ve been learning this lesson the hard way. I have made it my practice starting last week to be gentler and to let my body go through the long process of healing. And it is a long game.
I have had an AFO (ankle-foot orthosis) for a few years, but barely used it. The device holds my foot in a flexed position (or at least 90° to my shin) and I was nervous that this would increase compensatory movement or cause my ankle muscles to weaken. I started using it over the last couple of weeks and I noticed that it decreases my spasticity and increases stability. For lack of a better description, it makes my brain feel safe and so it makes movement more natural. I have now learned that when I take it off, regardless of what I’m doing, the spasticity can kick in hard, like it was just waiting to spring. My best understanding of this phenomenon is that my brain no longer feels safe when it comes off and it goes into a protective mode. I wait until bedtime, right when climbing into bed, to take it off or the spasticity goes through the roof.
This product is amazing!
Key Moments:
Baclofen currently at 10 mg per day (5mg AM and 5mg PM). Will decrease the last 10 mg after returning from care’s graduation.
Met with my PCP on Monday and have begun decreasing tramadol (used for lower back and hip pain for sleep at night). Cannabis “wonder rub” is working wonders, no pun intended. This taper will take approximately six weeks, this is week one.
5/17 I clearly felt sensations in my feet that I haven’t felt in a while. Peripheral neuropathy has made the mostly numb, but yesterday they felt more normal like I could feel blood flow through them and I could feel toes move individually. Felt very energetically different.
Also 5/17 had one of my most difficult mornings where I didn’t know how I would get out of bed and get dressed. The spasming was so painful that I just sobbed. I called mom and she came right over. By the time she got here some of my medications had kicked in, or my body had just come online or something else happened, but I became able to move more freely and find equilibrium again.
I have tried acupuncture twice over the last two weeks and it has been an uncomfortable experience. My spasticity is so trigger-happy that the needles and the energy created by the acupuncture, whatever’s going on there, explodes the spasticity. Need to keep thinking if this is a helpful path forward.
Well, I still have MS. Not that it was ever supposed to go away, but there is a part of me, and probably a part of every person who undergoes HSCT, that held on to a glimmer of a possibility that I would get home and miraculously everything would disappear, return to the before MS reality, be the one-in-a-million miracle case. To be honest, every morning there is this time between waking and moving where it feels entirely possible that movement will be “normal” – like waking up from a dream. I will swing my legs over the bed and be strong and stable. I will reach for something with my right arm and easily grab hold. This hopefulness is essential even if it is devastating.
The first few weeks that I was home I was surprised at how normal I felt, not that much different from how I felt before I left. I was thankful to have more energy, not need to sleep all day, and feel motivation to do things. Now, the long game is settling in. I still have more energy than before treatment and I still am motivated to do things, but the novelty has worn off. In addition, these first months of intense carefulness with infection risk comes coupled with isolation and loneliness. By necessity I am by myself a lot which leaves too much time inside my own head.
Other than my subjective experience, I won’t know if HSCT “worked” to halt my disease progression. And I won’t know, even subjectively, for one-two years. I have chosen to act as if it worked which feels like the only way to move forward. Therefore, my daily “job” is the tediously slow work of building new neuroplastic pathways for better mobility and function. This job doesn’t have coworkers or a water cooler culture. It is very solitary. And I’m not gonna lie, it isn’t fun. Each movement I practice is hard and I find myself in a resistance-acceptance-resistance cycle. I do some exercises, then distract myself with some other task, or game on my phone, or YouTube video, then knuckle down again for the next round of exercises. Progress is almost imperceptible, but it is happening enough that I continue. I have to remind myself all of the time why I do this, why it matters. Being active in the outdoors with people I love is my biggest motivation. And, as sappy as it sounds, the possibility of being an active grandparent is a motivator that brings tears to my eyes every time I think about it (no pressure on Kira to ever have children!)
Identity
Ironically, my reality before I left for HSCT is still my reality now that I’m back. Over the last 5-6 years as my body has changed and my ability to move has become more challenging, my world has become smaller – closer to home. Simple ways to connect with others, “hey, let’s go for a walk!”, “Let’s go hiking this weekend!”, “Let’s go to the beach for sunset!”, “It would be fun to cook dinner together!”, “There is a fun (band, comedian, play, etc) coming to town and I’d love to go with you!” are not so simple when movement requires a mobility device and walking from my house to the car is a significant undertaking. I try hard to focus on what I can do, but there is a cold hard reality to what I can’t do that can’t be ignored. An unintended side effect of the pandemic, and our society-wide need to retreat, was that it made the lives of everyone else more like mine, if even for a little while.
With this reality, I keep bumping up against questions of identity, meaning, purpose. How do I connect? How do I contribute? How do I play? How do I build something? How do I explore? How do I have fun? How do I navigate all of this and not have a morose pity party?
I am wanting ways to answer these questions that don’t involve a huge amount of effort or hard work and it honestly seems like a contradiction in concepts. Getting out of bed in the morning is work, taking a shower is effort, my physical therapy, occupational therapy, sitting up in a chair, and handwriting practice all ask me to push hard both physically and emotionally with barely perceptible results. Once again, it is all a leap of faith. All the work I do to hold onto and try to regain mobility marinates in my ability to hold hope and optimism.
I want to find ways to play and have fun that don’t ask me to work hard, I want relief and respite from work. However, everything I think of has a learning curve, a challenge that requires effort and work. Learn to play ukulele? Explore art making? Learn a new language? Read a bunch of enriching books? Write a book? I am searching for something that metaphorically feels like falling into fluffy clouds made of laughing gas. It’s a work in progress. Somewhere in there is a mindset shift where the effort and work along the way are fun in their own right.
To Baclofen or Not to Baclofen
The last couple of weeks has also been a brutal reminder of body and medicine chemistry. I have been on a medication called baclofen for several years now and it is never quite clear if it is really doing anything. Its purpose is to decrease spasticity, but it is very hard to tell how effective it is. Spasticity has a natural fluctuation in intensity by itself – over the course of a single day or from one day to the next. Is my spasticity better because of baclofen or is it just a better day? Baclofen also has negative side effects – it causes fatigue and creates muscle weakness. A devil’s bargain, possibly less spasticity traded for weakness and loss of muscle. How am I to build strength, muscle, and endurance if I’m fighting against this medication?
Getting off baclofen is no small deal. You must go very slow because withdrawal symptoms are no joke. Baclofen withdrawal has been compared to withdrawing from benzodiazepines. Specifically, there is an emotional/mood impact that feels like intense depression and there is a strong likelihood of “rebound spasticity” which is a crippling exacerbation of MS spasticity. If a person weans off baclofen too fast, it can cause cardiac arrest.
I am not a patient person. At the beginning of last week, I decided I wanted to wean off baclofen to have a better understanding of my baseline spasticity without medication. Without doing due diligence research, I decided to cut my baclofen dose in half right out of the gate. I went from 20 mg three times per day to 10 mg three times per day. About two days into this process, I started to write this blog post and noticed that the world was a gray, nihilistic, teary landscape – I mostly scrapped that writing. Three days in the rebound spasticity kicked in like pissed-off wild horses and I could barely stand up.
I did me a little research and quickly brought my dose back up to my usual and the world stabilized. As of this writing, I have started a more gradual baclofen taper because I really do want to know the state of my body without it; what is my baseline. I am all for having as little medication in my body as possible. Fingers crossed for better success this time around.
I have been home a little over two weeks now. The time has flown by and the time that I spent in Mexico feels like a dream, an otherworldly experience that I was immersed in, a fairyland of sorts. I know it was very real and it did happen, it just feels like a strange blip out of normal life. Now that I am back home things once again feel familiar and routine for the most part.
Nils was able to be home full time for the first week. He went back to work half-time for the second week and as of Monday of this week he is back to work full-time. It was incredible to have him here as we figured out this new lay of the land.
These two weeks have been about reintegration, figuring out how to set up our day-to-day life and our home to keep me protected from infection, and just getting my bearings in general to figure out what’s working, what’s not working, and how to settle in to the long-game of recovery. It’s like stepping out of the vehicle after a car crash in checking that you still have your arms, legs, hands, feet and that you’re not bleeding. What is the damage assessment, how bad is it?
My assessment is that I’m doing well. Unexpectedly, my energy is better than it was before I went for treatment. The lifting of my MS fatigue that I experienced during treatment seems to have held. All my reading says that it will take a year to get back to my pre-HSCT baseline, that it will be a roller coaster of good days and bad days. At this point I feel pretty close to my baseline already. My muscles feel weak, and my endurance/stamina is perhaps a little less, but the increase in energy gives me the ability to do the physical work I need to do to get stronger and I already feel like that is happening. I need to be prepared for the roller coaster and I also need to be prepared how slow this process of rebuilding strength is likely to be. Impatience is my kryptonite.
My days consist of a rotating physical therapy routine which includes the MS gym, physical therapy exercises from my PT, hand/arm exercises from my OT, handwriting practice, and mindfulness meditation. I’m also keeping track of MS symptoms in a more concerted way than I have in the past. My goal for this blog, as I’m thinking about it right now, is to post every two weeks. I will track my PT/mobility progress and symptoms monthly to help me determine how things are changing, or not. The other post I plan to do monthly is a check in on mindset, motivation, life in HSCT recovery, identity, finding meaning and purpose in a differently-abled body – musings, for lack of a better description.
PT & Symptom Tracker
This post is going to be the progress and symptoms report.
Mobility/Walking/Legs
As of today, I have been consistently doing the mobility plan I laid out for myself six days a week. This consists predominantly of seated and supine exercises aimed at building core strength and hip mobility. I have taken a video to document my walking, my hip flexor function and spasticity levels in my right leg, and how my right ankle is functioning (or not). As I mentioned before, I feel pretty close to my baseline before HSCT and the post I created pretreatment reflects this.
Arm/Hand/Handwriting
I decided to start using the Saebo Reach device prescribed to me by my OT a couple of years ago. This is a device originally designed for stroke victims to regain arm and hand strength and function. Ideally they want you to use it six days a week for an hour, but I’m committing to about 30 minutes three times a week right now. I had done it in the past for about six months and it did help to increase my strength so I’m willing to give it another shot.
Saebo Reach torture device
I’ve included a video showing how my hand and arm move currently.
I’m also spending some time every day practicing my handwriting. I have picked a random structure for doing this that includes writing the alphabet in upper and lowercase, practicing my signature, doing some shapes that exercise my hand, and practicing the sentence I remember learning in grade school, “the quick brown fox jumps over the lazy dog.” My handwriting was never that legible to begin with so not hoping for a miracle there, my goals are to have it feel like I can write for longer without my hand fatiguing and to be able to comfortably fill out cards, forms, checks, etc.
Handwriting Practice
Fatigue/Energy
As I mentioned in my initial post about my symptoms pretreatment, fatigue has been one of the most debilitating parts of having MS. On any given day fatigue would be this background soundtrack, sometimes very quiet and sometimes exceedingly loud, but always there. During treatment, when my fatigue seemed to disappear, I was able to get clear on the distinction between MS fatigue and being tired. I still feel tired when I don’t get enough sleep or when I’ve pushed my body, but it is a very different feeling than MS fatigue. This has been incredibly hard to explain to people in my life who haven’t experienced it. There are a number of us in my cohort who have had this experience and we all agree that this distinction is important. When MS fatigue is present it is like a weight in your chest, in your head, in your arms, and your legs that saps motivation and the ability to move anything forward. Now my energy is consistent, even if my body is tired or weak, I still have the motivation to keep moving and building.
Bladder
This is one area that is still pretty much a bummer. Since having the hemorrhagic cystitis during treatment my bladder continues to be cranky. If you remember, this is the area where we quickly get into TMI. Please feel free to ignore this section. I am tracking how frequently I have to urinate and it appears to be anywhere from every 30 minutes to every 1.5 hours, average of about every 45 minutes. And it’s typically a pretty full bladder and I don’t have a UTI. I am currently getting appointment set up with a urologist and I hope this improves!
Bladder Tracking
Bowel Function
On the flipside, this is an area that seems to be pretty darn normal of late. I was so nervous about the possibility of getting severely constipated during treatment that I used every tool in my dietitian handbook to make sure I erred on the other side. Since coming back I continued to do daily Metamucil and 2+ liters of water per day and things seem to be nicely unremarkable.
Hair Growth
Shortly after I got home Nils did a really thorough cleanup of my head, so everything is now even all over. I’m excited to document how it grows back! Will it be curly? Will it be straight? Will it be more or less gray? Can’t wait to find out!
On a final note, getting outdoors, spending time at the ocean, and just immersing myself in the beauty of where I live has felt so essential since I returned home. It is still winter but we’re trying to take every opportunity we can to spend time outside. We are just waiting for the day when we can get out on our trikes!
The last few days at Clinica Ruiz in Puebla, Mexico were a flurry of final details and goodbyes. Friday, the last full day we were there, was one of those fully depleted, need to stay in bed sorts of days. I spent some time in the morning with our cohort, then went to bed for most of the afternoon. The last person in our group to complete his rituximab infusion was able to do that successfully, in the nick of time and our whole group was complete, “all for one and one for all!” was our motto. No one was leaving until everyone could leave.
As a very nice surprise Dr. Richard Burt of Northwestern University, the physician responsible for the only research study in the US for this non-myleoablative treatment for MS, happened to be visiting Clinica Ruiz and came up to the roof deck and spent an hour talking with all of us. He is a bigwig, but very down to earth and a strong advocate for access to this treatment in the US and around the world. It was very generous of him to spend so much time with us.
Dr. BurtDr. Burt, Dr. Ruiz, Dr. Juan Carlos and Our Cohort
That evening we all met upstairs for the final time we would be together. The kitchen had generously made us cake to help with our celebration. Many stories were told, well wishes were made, and tears were shed. We had all been through something extremely intense together and we were about to scatter ourselves around the planet. Everyone was aching to get home and simultaneously sad to leave the company of the only people in our lives who would really get what we had been through.
Alex and I both have significant right hand impact, but we can both activate our middle finger.
Tracy bought all of group 2 patients embroidered Puebla hats. Andrew is missing from this picture because he had gone to bed.
8:30AM Saturday morning the first four people loaded up in a van to head to the airport in Mexico City and a bunch of us came down to see them off. The next four people piled into their van at 9 AM for the beginning of their journey home. Mom and I were next at 10 AM. The remainder of our cohort were the Europeans whose flights didn’t leave until the evening. There is a map in the entryway to the clinic where you put a pin to show where you came from. We added our small tokens to the evolving story of this clinic and prepared to say our goodbyes.
Patient MapFirst Group LeavingSecond Group Leaving
Our van trip went quickly, and we arrived at the airport in Mexico City with tons of time to spare before our flight. Because of my disability I requested wheelchair service on both ends of the flight which made travel through the airport incredibly smooth. I didn’t get pictures of our wheelchair angels, but they handled everything including all the paperwork necessary for travel, checking in, getting our boarding passes, getting us through customs, all of it. I was especially thankful for this because it allowed me to spend as little time as possible amongst crowds which is particularly risky for me with the degree of immune-vulnerability I have at this point.
The flight went smoothly, getting through customs on the US side was fast and we were scooped up by Nils and Lloyd when we reached baggage claim. So sweet to be connected again to my love. Nils put his hand on my shoulder, and I felt an intense feeling of relief and safety and burst into tears. I hadn’t realized how much I’d been holding until that moment.
We drove through the rain and air that felt so fresh and clean. We arrived home at close to 10 PM, did the minimal things needed before climbing into bed, and I slept deeply and peacefully and comfortably. So beautifully surrounded by home.
Because of the time difference I woke up around 5 AM and remarkably felt refreshed and alert. I expected to feel beat up and worn out after such a long day of travel, but I felt great. We woke up slow and had a lovely breakfast. Nils had invited our community to come say hello at 10 AM. He had expected I would be only be able to wave from the window, but I was easily able to go out on the patio and talk with people, connect and feel alert and strong; way more capable than I expected to be after treatment. I’m blown away with how okay I feel. It was lovely to see everyone in the beautiful blue-sky window that happened on Saturday morning, before the atmospheric river that descended upon us that afternoon. Nils and I kept remarking all day long how much different this reality was than we expected. One of our neighbors made us a beautiful dinner and we had a quiet and relaxing evening at home together.
Community Welcome
Now it is Monday. I am again feeling pretty okay. Nils and I are spending these days figuring out the new normal in our day-to-day home life. My immune system is nascent and fragile. Surfaces must be kept clean, hands have to be washed constantly, food has to be carefully navigated to protect against foodborne illnesses, and though I see people I need to be very careful about all the viral and bacterial invaders that are out there.
Last evening on the roof
Now begins a long journey of recovery. I will begin to incorporate movement, physical therapy, gentle exercise, all the pieces to begin to rebuild my body with the hope that I am no longer pushing back against the tide of disease progression. It is a long game. It will likely take a year or even two before I will know how effective this whole process has been. These are early days and my work is to maintain a mindset of optimism, motivation, and commitment to success. Part of this is in the hands of fate and faith and part of it is in my hands.
I plan to continue this blog through recovery for those who are interested, mostly to document my own journey, but also for those who may be following this same path. Thank you to everyone who has supported me through the most intense phase of this process. I was sustained and held more powerfully than I ever could’ve imagined and there aren’t words to describe the depth of my gratitude. I love you all!
Today is the one-year anniversary of the birth of my new immune system, the day they put my stem cells back in my body to begin the process of rebuilding an infrastructure free of the memory of MS, hopefully. So, I thought I better get my butt in gear and write!
