There is a meditation I’ve been really loving the last couple of weeks. It’s a practice of welcoming all aspects of your experience with warmth, graciousness, and acceptance. This includes the difficult things as well as the easy things. The idea is to invite them all into the party of your humanness as welcome guests. It feels like an important perspective now that I’m on final approach to treatment.
The last few days have felt bumpy. I’ve been grumpy. My anxiety about what is to come is feeling big. The doubting voices in my head and heart are speaking loudly. “Will this work?” “Will I be miserable?” “Why am I doing this to myself voluntarily?” “The year ahead is going to be rough, am I up to it?”
Welcome to the party. Welcome analytical, researching mind. Welcome fear and uncertainty. Welcome hope. Welcome planner and organizer. Welcome controller. Welcome excitement. Everyone please come in, enjoy some refreshments, get to know each other – this is a safe space for you to hang out.
And welcome gratitude, especially gratitude. The last couple of years with Covid have brought isolation. I have been caught in a belief that my circle of friends and community had shrunk or disappeared. I don’t think I’m alone in this. To be safe and protect the ones we love, we have retreated to our homes and forgone even the simplest of gatherings and connection.
But this isn’t the real story, in fact my circle and community is alive and thriving, beautiful and rich. I have been brought to tears every day this last week by a profound outpouring of love and support. I have felt almost embarrassed, and definitely humbled, by the beauty and generosity of the people in my life. This has been staggering, breathless, and ultimately fortifying. I have received poems, gemstones, songs, a bad ass power bracelet, fingerless mittens and hand warmers because my hands are always cold, prayer beads, drawings, cards, a healing bundle wrapped with herbs, and so so many words, written and spoken, that are deeper than just obligatory “get well soon”. Words that express genuine love and history. Words that take time and thought and effort. Words that show an interest in really understanding. All in all, it is a profound sense of feeling seen and held. This is an exquisite place to be as I pack my bag with the practical things I need along with these tokens infused with the people and place I love. Welcome love. Welcome healing. I am carrying all of you with me and am honored and thankful for the strength and hope your love gives me access to.
My mom, who will be my caregiver for the whole 28 days (more enormous gratitude!), and I get on a plane tomorrow night at 10 PM and arrive in Mexico City at around five in the morning. See you in Puebla, Mexico!
As I prepare for Mexico, I want to document my current MS symptoms as they exist right now as a baseline before treatment. This post is a long one, buckle up (or ignore 🙂 ).
There will be no objective way to determine if the HSCT treatment has halted my MS progression. Since my original MRI in 2007 that clearly demonstrated that I had MS with a classic lesion/flare pattern in my brain, I have not had another, single change in my subsequent MRI scans. Without ongoing flares/lesions, there’s no way to determine if the frequency has changed or stopped altogether.
There is not a blood test that identifies MS or MS activity. No biomarker of any sort. The only way to demonstrate or document my progression, or lack of progression, is my experience of my body. This is how my neurologist has assessed my progression to this point and it is really the only way science knows to assess a person with a progressive form of MS.
So, there will be no objective measure to determine if HSCT has halted my disease progression except my own observation. And that clarity will not be a quick process because healing after HSCT is commonly 1-2 years.
HSCT is designed to halt progression and it is not a guarantee that it will do even that, though the odds are around 70-80% that it will. It is explicitly not an expectation that any existing symptoms will improve, but there are many reports of improvement from small to significant.
Photo Credit: Toolshero.com
Some people report distinct changes right away that help them know it has worked. For some, the symptom of debilitating fatigue lifts and doesn’t come back. Some have reported that spasticity in legs or arms seems to let go and remain improved. A common symptom improvement that people report is a marked difference in bladder symptoms, which I will go into more detail later! For most people, any symptom improvement is a slow, plodding process.
The symptoms documented here are, right leg spasticity and mobility challenges and how that relates to walking, right arm and hand spasticity and contracture and the impact that has on activities of daily living (ADLs) and handwriting/typing, fatigue, bladder issues, bowel issues. You are welcome to read these and skip over any sections that make you squeamish.
Right Leg Spasticity/Mobility
The symptom that first had me go to a neurologist was foot drop. This is where it becomes difficult to pick up your foot, or more specifically your toe, to walk. It is easy to catch my toe and trip because of this. To decrease the likelihood of tripping or falling, it is common to start doing what is known as a “circumduction gait” where you swing your leg from the hip, out and around, to help that foot clear the ground. This can start out subtly and increase over time.
In my case, foot drop has become more pronounced and my foot likes to curl in and down. There is also intense spasticity in my ankle, my knee joint, and my hip joint. Every point along the path of my leg resists moving normally. In addition to the spasticity, the leg has become quite weak over time and some of the muscles have atrophied, especially the glute muscles and hip flexors. They are simultaneously incredibly high tone and tight and very weak.
Video taken Jan., 2022
There is a test I do every time I go into my neurologist’s office called the “25-foot timed test” this is where you simply walked 25 feet as fast as you can and get timed to see if your time changes between visits. It is a crude test and I’m basically capable of walking at an okay clip for 25 feet but further than that that and I get weak and slow. Because the test is only 25 feet, it does actually catch much of the important changes.
I am currently able to walk around inside my house if I rest frequently. I try to minimize going up and down stairs because it’s exhausting, but I can still technically do it. I use the provided scooters at the grocery store to shop. While it is hard to quantify how long or far I can walk, I would say I can walk outside on even ground for about 100 feet before I need to rest. I push myself further than that if I must, but it costs me. If the ground is uneven, I need trekking polls or walking sticks and I can go less distance. I need visual cues to walk safely and I am significantly less stable on both even ground and in the dark or lowlight.
Spasticity has an impact on my circulation. My right foot is constantly cold because there is less blood flow to the extremity. My ankle commonly swells, and my foot is often discolored, either white or purple depending on the day.
About a year and ½ ago I had a left-sided gas pedal installed in my car so I could drive safely, and I had to train my left leg to do what my right leg had done instinctively for the last almost 25 years. At first, I hadn’t known that accommodation was possible, and I had been confronted with losing my autonomy with driving. I hid from myself and others that I was feeling less and less safe driving, scared that I couldn’t stop quickly enough, scared that my foot might get caught underneath a pedal. But I wasn’t ready to let go of the freedom and independence that comes with driving. I know what it feels like to be the elder person whose family is needing to take away their driver’s license.
Right Arm Spasticity
I am right hand dominant. I write with my right hand, I use that hand to type, I cook and prep food mostly with my right hand, I eat my food with a fork or spoon with my right hand, just about everything I do depends on my having a competent right hand. Try putting your dominant hand in a fist and then putting it in a mitten and see how many things you use it for.
The change in my right arm and hand happen slowly over time. I remember looking at a photograph of me jumping out of the water in Hawaii in 2013.
Hawaii, 2013
In that photograph my left arm was straight up and exuberant and my right arm was as exuberant but crooked at the elbow. I hadn’t noticed that as I went through my day, but that photo caught my attention.
By 2015 I needed to switch from typing to voice dictation and by 2018 even the simplest bit of handwriting became difficult. My bicep muscle is so incredibly tight it pulls my lower arm in and the muscles in my forearm and hand contract my fingers into a claw type posture. I now need help filling out forms I can’t fill in on the computer. Any writing or journaling I want to do I have to do out loud with voice dictation. I eat with my left hand, which is clumsy. Nils will typically cut my food for me because that takes two hands. I wear very few articles of clothing with buttons, snaps, or zippers. I don’t wear shoes with laces. It has become difficult to do the most personal and identity defining act of signing my name.
Video Taken Jan., 2022
This hand and arm have a similar circulation issue to my leg and foot. It is frequently very cold; the texture of the skin has changed as has the character of my fingernails.
Though it is hard to do physical therapy for my foot and legs and hips, it still feels doable and like it makes a difference. Doing physical therapy for my arm and hand is incredibly confronting. Every movement feels almost impossible and my belief in its ability to make a difference is low. I know intellectually that I need to keep moving and using my hand and arm, but every day I put it off thinking I will start tomorrow.
Fatigue
MS fatigue is one of the most debilitating MS symptoms and commonly the symptom that has people leave the workforce early. It is also the least understood with no meaningful treatment to make it better. It is unpredictable and exists on a spectrum from mild to severe. On any given day I may wake up with energy and feel normal, able to do physical therapy, pay bills, write, be creative, do dishes, do laundry, and overall be able to engage and contribute to life around me. Or I can wake up and barely be able to function. On those days it takes me forever to get out of bed. If I shower, I must rest afterwards. Putting on clothes is exhausting. Any plans I had crumble and things feel bleak. Randomly, sometime mid-day or that evening, the fatigue can lift like it was never there. Or, partway through the day it can descend and knock the day off course.
Photo Credit: MS Trust
This seems to be a symptom that many people report going away with HSCT. If this alone were to lift, it would be worth everything.
Bladder Issues
We may now be dipping our toes into the arena of “TMI”, so feel free to leave this party now if you would like.
I am a member of an amazing group of women with MS who have been meeting weekly now for a year through Zoom. We found each other last February through an online physical therapy program called “the MS Gym”, but our friendship and conversations quickly evolved beyond the confines of that initial spark.
We all have bladder issues. The space that we have created has given us the safety and trust to talk about these very personal issues and support each other finding solutions. My bladder issues are a double-edged sword. I have both urinary frequency as well as urinary retention. This means I very frequently have to pee, and right away, pretty much every hour. It also means that my bladder doesn’t fully empty when I do pee leaving me susceptible to urinary tract infections (UTIs). Every one of us in our group has one or both symptoms. It is nice to not feel alone.
Photo Credit: Verywell Health
Through our most recent conversations on this topic, it has become clear to me that I need to see a urologist. I have been putting it off because I’ve been mostly able to manage without accidents or too many UTIs, but it could probably be easier with medical help.
This is another symptom that people commonly report improves or goes away with HSCT. I will wait to see how this symptom is impacted when I get back. In the meantime it makes it necessary for the airline flights, and a couple of long treatment days, to stick a few Depends in my carry-on.
Bowel Issues
Warning, even more TMI! This one will be brief. Like bladder issues, bowel issues can also be a double-edge sword. Most of the time people with MS experience constipation related to a decrease in smooth muscle motility that is directly caused by MS. In addition many of the medications we take have constipation as a side effect, increasing the problem. Baclofen is a medication that many people with MS, including me, use to help decrease spasticity and it’s a bugger for constipation.
Photo Credit: Verywell Health
On the flipside, it is not unheard of to have a very unexpected and unpredictable moment of “bowel urgency”. This is not diarrhea, just the inability of the anal sphincter to do its retention job, I will leave it at that. Yet one more symptom that would make a world of difference if it resolved.
With this treatment I am going to lose all my hair. It is that kind of chemo. Most people keep their eyelashes and eyebrows, but not everybody. From what I have read, I will lose my leg hair, armpit hair, pubic hair, head hair.
I am lucky that this is not a big deal for me. 15 years ago, for fun, I shaved my head and kept it really short for over a year. I know what I look like without hair. I know what it feels like without hair. I know in my head looks like. I am not afraid of this part. I’m going to be fine.
In preparation I thought it would make it a heck of a lot easier if I shaved my hair really short before I left. I also thought it would be fun to do that with Kira while she was here over her holiday break and to dye it midnight blue. Why not? If I don’t like it it’s gonna fall out in a month anyway.
The night before Kira flew out to California, we got out the clippers, put a salon shawl around me, and went to town.
Over the last 15 years I have worked with more physical therapists than I can remember. The gold standard, and pretty much a unicorn I have yet to find in the Seattle area, is a PT with an MS specific certification. This is a person who is skilled at foundational/orthopedic PT, has a deep understanding of neurologic issues, and specifically knows how to incorporate exercises that re-create the movement patterns you’re trying to repair. This is more than just strengthening muscles. The key is helping your brain remap neurons around the spot where the myelin has broken down communication.
I have found fantastic online options for this, but none of them are personalized to me. I have worked with many nice and talented people, but no one who really understands MS. Prior to leaving for Mexico, I wanted to see if I could find someone who could help me put together a routine for while I’m there that would help me keep moving so I don’t atrophy. I also wanted to establish a relationship enough that I could return and start working with this person as soon as I was able to do more in my recovery.
I am again thankful to my PCP who recommended I look into a practitioner at Kitsap Physical Therapy in Poulsbo. This practitioner is not an MS certified PT, but she does have extra training in neurologic issues, so basically the next best thing.
Jackie is a wonderful human and I immediately felt drawn to working with her. She did a review of my mobility issues and then asked the surprising question, “So, what do you do to fill yourself up?” This question was so unexpected and insightful that I immediately burst into tears. I explained that that has been my biggest struggle to figure out as my body’s abilities have changed. She said, “okay, we can work on that.” Definitely off to a good start.
We will only have a few appointments before I leave, but I feel hopeful that she will be an important part of my support team in recovery as I worked to rebuild my strength and function. Next teammate added to the team, check!
An important part of my preparation for treatment is setting up my support and recovery team for when I return. I met with my neurologist and she is supportive and on board to continue working with me when I return. I met with my PCP and received her full endorsement for treatment. She also was a fantastic resource for finding a great hematologist/oncologist who understands this treatment process and will be skilled at monitoring my recovery.
Photo Credit: Everyday Health
I do many appointments virtual these days, one of the silver linings of Covid. But for my first appointment with this physician it was important to him that we meet in person.
I can’t remember having a medical appointment like this before. Upon entering the exam room and sitting down, the first thing he said to me was that he did not like reading the medical chart before meeting with a patient. Instead, he spent the next hour and 15 minutes doing a very thorough and detailed medical history. And, he took all of his notes on paper, multiple sheets of paper, handwritten. He was present, intelligent, kind, and insightful. I left feeling like I was in very good hands. He sent me up to the lab to have 13 vials of blood drawn in order to do a deep dive into my health markers and immunological strength.
If I had not known he would be asking for this extensive amount of laboratory work, I wouldn’t have caught the original phlebotomist’s mistake of pulling an old order from a different physician who only needed one vial of blood. The original phlebotomist was a student and I was switched to a fully credentialed phlebotomist and watched the blood flow.
Photo Credit: Franklin Institute
All the results came back stellar and provide an important piece of my foundational comfort level moving into treatment.
I’ve been quiet the last couple of days because the best way I could imagine starting off a new year, my own special entry into 2022, was to schedule a colonoscopy – a twisted sort of New Year’s party. Yesterday was the actual event where my insides were scoped, observed, and cleaned up – good now for another five years.
I did not intentionally schedule this to coincide with the beginning of the new year, it just was a lucky bonus and I’m hoping it’s not an ominous portent of the year to come. So, for the last couple of days I’ve been eating all soft foods then clear liquids, then then full evacuation through the lovely gift of Golytely. I will spare you any more details.
This may not seem related to MS or my upcoming HSCT, but it actually is really important to do diagnostics to make sure you are cancer free. Most of the preliminary studies that will be done on my body when I get to Mexico will be to rule out any underlying diseases, infections, viruses, and yes, cancers to make sure the treatment won’t exacerbate existing problems and make me more sick. Having it done now eases my mind just another little bit.
One thread I want to touch on throughout this blog, as I encounter it, is intersection where ability issues encounter the built world around us. There is a great episode on 99% Invisible about this exact issue.
When we left the hospital we first stopped to get food (I hadn’t eaten in over 24 hours), then we headed towards the ferry. Currently, the ferries are down to one boat service meaning they have half as many sailings as they usually do and as they need. This means that they get very full and there is typically a long wait for driving on.
When we got there, we had been driving for a long time and understandably all had to pee. We had just missed the boat that was there when we arrived (it was full), so they directed our car down to the lower lot which is quite far from the public bathroom in the upper lot. I had Kira, who was driving, pull our car to the far right lane where it would be closest to the single bathroom down at the end of the lot. I was needing to strategize how far I would have to walk to get to a bathroom, what terrain I would need to cover to get there, and how much energy I had left after the last few days of prep and treatment. I slowly got out of the car, my legs particularly stiff and weak, grabbed my trekking poles and slowly began to walk the, I would guess, 200 feet to the bathroom. My right foot and ankle were particularly stubborn in stabilizing my ability to stand up and my movement was pronouncedly slow.
Just as I got close to the stairs to the bathroom, a ferry employee came out and said, “oh I’m sorry, this bathroom isn’t working, we don’t currently have water. There is another bathroom in the terminal behind you.” I almost cried. The terminal entrance was easily a football field away. I looked at her and said, “what am I supposed to do?” I wasn’t being snarky, I was literally asking what am I supposed to do? There was no way I could walk that distance and I had to pee, simple fact.
She was a very kind human and said, “my car is right here and I can drive you to the terminal entrance.” She drove me over and I walked up to the doors leading into the building.
Like most municipal buildings, this one had an automatic entry door for people differently abled with the pushbutton that makes the door swing open. This one was broken. This was my predicament, I have both hands on my sticks, so I don’t have hands, or balance, or strength to open and hold the door while I walk in. Luckily, there were two people exiting the building just as I got there, and they held the door for me. As I was leaving, the same employee who had driven me there opened the door and apologized for the fact that it wasn’t working and then drove me back to my car.
I was incredibly lucky that I had people able to help me. Washington State ferries could’ve very easily brought in a porta potty while their toilet was out of order for just such an occasion – easy fix. And when an automatic door isn’t working, it’s a big deal, fix it right away.
When you are differently abled, every activity you undertake has to be thought out in great detail as to how you will interface with every aspect of your environment; how you will get from A to B to C to D. I will likely talk more about this in detail later, but every step of my trip from leaving my house, to getting to the airport, to getting through the airport, to getting on the airplane, to getting off the airplane, has many detailed steps that have to be thought through, and I’m sure I’m gonna miss something. But, I’ve gotten pretty good at it and thankfully, there are many services available to help you if you think to ask.
In 31 days, I start my HSC T treatment. In 29 days, I get on an airplane to fly to Mexico.
31 days of this life where I haven’t yet had treatment. 31 more days where I live in my body the way it is now with no interference. After I start, it is a one-way trip. It is the beginning of a year or more of breaking down and rebuilding. A year or more of complete unknowns. So, for now, life is familiar. For now I have my hair. For now I have the energy and strength and mobility I am familiar with, even if it is a daily struggle.
Because it is so close, I feel like every day should be full of getting things done and preparing. Instead, today I made yogurt, did laundry, and spent time with my family. I double checked the list I have been making to make sure it had not run away.
One reminder of why I want to do this has been watching my friends, family, and neighbors play in this beautiful winter snow that has held on around our Hill for the last week. I’ve not been able to step outside even once because I don’t have the balance or strength to navigate even stepping outside the house. There is no guarantee that this treatment will help my body reverse time, but there is a chance. And, if the treatment can stop progression, then I may be able to rebuild my strength and new neural pathways without fighting against the ever moving forward progression. Physical therapy may actually help me improve instead of just hold stasis, treading water.
