Chemotherapy – A Life with multiple sclerosis

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.

May 19, 2022

Post HSCT – Month 3 Musings

Tulips

Theme of The Month: Spasticity/Spasm Management

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.

MS Spasms

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.

Cannabis collection

“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.

Treatment Log

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.

Book Passage

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.

March 15, 2022

Reentry and Recovery

self portrait

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.

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.

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.

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!

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!

Bald head

Bald head side view

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!

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.