Clinica Ruiz – A Life with multiple sclerosis

February 14, 2023

Post HSCT – 1 Year “Birthday”

Mom and me 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.

Kira blowing out birthday candles

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 16^th 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.

Watercolor painting of Paris street corner

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.

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" — Me and the crew on “La Litote”

Crew on "La Litote" — Crew on “La Litote”, bestill my 16-yr-old heart!

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 — 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

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. — “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.

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.

Hair 7 months front view — September 2022

Fatigue:

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.

September 28, 2022

Post HSCT – Month 7 Symptoms

Number 7 graphic

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.

Mexico FB group

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.

Life after HSCT FB group

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.

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.

Hair 7 months front view

Hair 7 months profile

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.

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.

July 1, 2022

Post HSCT – Month 4 Musings

Constellation Cassieopia

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.

Cuddling Cassie

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.

woman screaming at a wall

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.

Body Trauma

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.

Surrender

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.

That is where I will leave this story for now.

February 28, 2022

Returning Home

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. 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.

Cake

Alex & Elisha — Alex and I both have significant right hand impact, but we can both activate our middle finger.

The Hat Brigade — 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.

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.

Me and mom

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.

Nils & Me

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.

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.

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!

February 24, 2022

The sweetness of steroids…

Yesterday morning began with the last part of this medical process. 9 AM I went down to the chemo room and got hooked up with my infusion of rituximab. The purpose of this infusion is to eliminate any remaining mature lymphocytes, stragglers that escaped the chemotherapy barrage.

Because I was the only one of our group to have reached the appropriate neutrophil level the day before, I was the only one in the room. Luckily, over the next couple of hours all but one of the remaining patients had passed the line and found their place in their respective recliners.

To protect us from any adverse symptoms we are given a number of prophylactic medication one of which is hydrocortisone. Steroids have this beautiful initial effect of having one feel like you are on top of the world. I was the wittiest, smartest, funniest person in the room. The whole rest of the day and evening felt glorious. Good conversations, lovely cocktail hour, physically strong and comfortable.

And, I also know that steroids cause insomnia. I was a pretty much all night as I expected. The next morning I woke up at the usual time and it wasn’t until midday today that the beginning of the steroid crash happened.

I had an afternoon nap and then joined the rest of our cohort on the roof in the evening for a whole group photo.

Tomorrow is our last full day here. All of us plan to spend the morning with the last of our group to get the rituximab infusion so he doesn’t have to go through it alone. then we begin to pack up, write our thank you cards, and spend our last evening together saying our goodbyes.

We have gotten pretty bonded and I will miss every single one of the people here. So another good night and I imagine next time I post will be as we take off in the airplane heading back home. I can’t wait to see all the people I love and my home and the land and the air and my dog.

February 22, 2022

Recovery

Another sunset
The endgame for the neutropenia phase is recovery. Specifically this means your neutrophils regain their status in the normal range between 4000 and 12,000.

Two days ago I was at the low point at 200. We watched group 1 have three of their members jump into the normal range over the course of two days. The four of us were optimistic and hopeful that we would have the same result.

As it turns out, I was the only one in our group to successfully jump into the normal range with neutrophils of 7200. The individual that was not in range from group 1 will likely be in range tomorrow and join me for my rituximab infusion. Another member of our group was close enough that he may also be able to join us. The other three will likely have to wait till the next day.

Basically what this means is that I receive my discharge papers tomorrow mid day and for all intents and purposes I can go home. However, going home early involves changing airline flights and other things not so much in my control. If all things go well, we will move our flight up to Friday, but if not we will come home Saturday as planned.

Those are the treatment details. My body is feeling pretty rough and tumble. The injections we get to stimulate stem cell growth seem to come along with deep exhaustion and a lead like feeling in all of my extremities. I’ve still been able to stand up and walk, but a number of members of our group have had to resort to a wheelchair because their legs simply won’t respond. This will recover, but it will take time. We are all also anemic contributing to fatigue.

The process is moving forward and it is quickly coming to an end. I am looking forward to being home and focusing on recovery.

A group of us have held the nightly ritual of sunset gathering and wine drinking. The highlight of the day. Only the caregivers of drinking wine, the rest of us get to watch. But it still feels celebratory.

February 18, 2022

Neutropenia

Sunset
So here we are. This is the phase of the process where all of the things have been done to our bodies to wipe out the troublesome immune system that was and put in the seeds for the immune system to be.

We restarted our filgastrim injections again two days ago to continue to stimulate stem cell production. We also get blood draws every two days him him to assess the level of current level of annihilation.

After each blood draw we meet with a hematologist to get our status report. Healthy neutrophil levels are 4000-12,000. First blood draw line rough 1500 pain, after the second blood draw they had dropped to 600. This is expected and there is an anticipated further drop in two days before the numbers begin to climb again. After the first blood draw my hemoglobin levels were 7.9 where 12 is considered the lowest end. My platelets were also low. All by design. At the second blood draw my hemoglobin and platelets had begun to recover, which is great. These red blood cells are not the target of the treatment and having them so low leads to pretty significant exhaustion and anemia.

After Sunday, the climb backing out of the neutropenia hole begins. When our neutrophils reach at 4000 level, we will get an infusion of rituximab and be ready to head home.

Now is the time for wallowing. What this means right now is that I am in the nadir of suck. Anemia causes headache, not for everyone, but definitely for me. It also causes extremely low energy. So, wallowing. And boredom.

View on the deck — My view from the deck

In addition, we are incredibly susceptible to even the smallest type of infection so for the most part we are restricted to our rooms. I get to escape jail for 20 minutes a day to go to the rooftop. All of us stretch it past that 20 minutes because well, sanity.

Lots of movies. Eating in the room. It is a pretty sorry state when getting out to get an injection feels like fun. We all linger, see how everybody’s doing, compare numbers, and just enjoy each other’s company for these brief moments when we can be together.

Mom drawing — My mom’s favorite activity, drawing

All in all, this is this surreal stretch of time. I am literally aching to be home. I am dreaming of the mountains and the ocean and rivers and streams and sunshine. At the same time I am so weak that sorting puzzle pieces requires a nap.

I am living in dreams of the future where things are possible, where I can move and begin to build strength hopefully on top of a system that isn’t fighting back. These dreams inspire me and they make me cry as they feel both so close and so far away.

I am in love with the people I’m going through this with. There is a lot of laughter and empathy. I will miss them and hope to connect in far-off lands down the line.

For now I lay low to protect myself, wash my hands more times a day than I can count, and rest while my body rebuilds.

February 14, 2022

Stem cell birthday

Mom and me
It has been a very long four days and I am very depleted, but good. I will write more tomorrow about all of the details of those four days, but for now I just wanted to share that today marks the point where my stem cells were put back into my body and the recovery and healing begins.

Our group of four patients and four caregivers celebrated a last dinner together on the roof deck tonight – the Scots, the Norwegians, the North Carolinians with the English expat,, and us Northwesterners. Tomorrow we start our neutropenia time where we will be in isolation.

Patio dinner

It was a wonderfully sweet evening filled with well wishes for what’s to come.

February 10, 2022

Gearing up

This post is going to be concise with no attempt at poetry. It is late and tomorrow is a big day that kicks off a series of very big days.

Tomorrow we wake up early to go to the hospital and get our catheters put in to our subclavian vein. A relatively quick procedure. We then come home and have the rest of the day to rest and get ready.

Saturday we wake up early again and head back to the hospital for a process called apheresis. This is where they harvest all of the stem cells they have been working so hard to extract from our bone marrow. These will be stored for the next two days. This is a three hour process.

Then we are returned to the clinic where we are housed and do a five hour chemotherapy infusion.

Sunday we again wake up early and head back to the chemotherapy room for another five hour infusion session.

Monday we can wake up early and go back to the hospital to have our stem cells re-implanted into our body and our catheter removed.

At that point, we are at what is known “day zero” (also commonly known as our stem cell birthday) and enter the neutropenic phase of the treatment when we isolate while my body begins to rebuild its brand-new immune system.

I wanted to make sure to mark that today was actually pretty amazing. I woke up and for the first time in as long as I can remember fatigue wasn’t present. There are days when it is barely there and there are days when it is strongly there all day, but I can’t remember a day where it simply wasn’t there. And it wasn’t there today.

Also, my ever present spasticity was also almost entirely absent. My walking was smoother, my energy for doing physical activity felt consistent and it was just overall a pretty damn good day.

Another quick thing to note from today happened in the evening. I got up from watching a movie and it felt like my back went into an incredibly tense and painful spasm. I have never felt anything like it before. It felt like the muscles were rock hard and throbbing spasms were rolling up and down my back. When I described this to the physician here he said that is actually bone pain caused by the injections. It’s a good sign. He described my experience so thoroughly that it gave me incredible relief. Simple ibuprofen was able to take it away.

So, I’m feeling solid, even better than solid. In bed and ready to sleep my way into this next big push. Game on.

February 9, 2022

Back Among the Living

Sometime early evening on Tuesday, I came back to myself. The pieces re-collected and my perspective became familiar again. My cystitis had not resolved, but it was clear it was moving in that direction rapidly. I had successfully implemented a strategy of drinking the required liquid but stopping by 6 PM which made my night meaningfully less interrupted.

With a good night sleep and a feeling of centeredness, today felt strong and fun. Many of us spent the day on the roof deck enjoying each other’s company, playing games, reading books, soaking up the sun. It was only the second day I felt strong enough to do physical therapy exercises to stretch out my body that had been so contracted for the last days. It was a surreal limbo day when our bodies had recovered from the first onslaught and we had not yet started in on the next.

Gathering on the deck

As I have mentioned before, we are broken into two groups and group 1 leaves the clinic tomorrow morning for the hospital to have their ports put in for stem cell removal and replacement. Our group goes Friday. The stem cell harvest happens the day after port placement.

Since this was the last night we would all be together before port insertion, we decided to have a shave-your-head party on the roof deck for support and celebration. This is a common tradition at the clinic.

Me and mom

I have shaved my head before and don’t feel emotional about it. Hair grows back. But that wasn’t true for others. The first woman to go cried as her husband cut her hair with all of us telling her how beautiful she is. He then sat in the chair and she shaved his head and beard. They Facebook livestreamed the whole thing to their friends and family back home.

I went next and my mom cut my hair. It was quick and fun to see blue hair flying around in the wind. The third woman to go did it via video to her husband and son at home. She was the only one who had not cut her hair shorter before coming here.

Finally, the last one to go was the only man participating. He had to shave both his head and his beard. His wife did the honor and it was emotional for her in a pretty significant way, not because of the hair loss, but because of what it represents with what’s to come next in our treatment and also everything that is embodied with what we are undertaking; the hopes, the dreams, the crossed fingers.

The only man

Two of the men going through treatment are already bald so they hung out with us supportively and said it’s not so bad, look how handsome we are.

After that, we had our evening shots (as close as we come to a cocktail hour), mom and I headed to dinner, then settled in for another solid night of sleep.