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.
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.
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.
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.
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.
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.
It was a wonderfully sweet evening filled with well wishes for what’s to come.
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.
I wanted to take a minute to check in and let people know that I’m still here! It has been a very rough few days since the second day of chemo and I have not had the energy or ability to write. Things seem to be turning around and I hope to recap the story very soon!
Our cohort of 8 patients has been divided into two groups of 4, group 1 and group 2. I am in group 2. Group 1 is a day ahead of us in their chemo treatment, so they completed the first dose yesterday and the second dose this morning. This means we get to watch what’s coming. One member of their group is having a difficult time, but everyone else seems to be doing okay.
I spoke with many people before I left about my intention during treatment to do meditation, at least at the beginning of each treatment day, visualizing the cells in my body that will be removed by the chemotherapy and holding them with gratitude, acknowledging how they have always been trying to do their best for me. I also had the intention of visualizing the molecules of the chemotherapy coming in as an ally and welcoming them, also with gratitude. When my sister went through chemotherapy many years ago, she chose to not think of her chemotherapy as poison but instead as a friend, a team member, an ally. That has stuck with me all this time and has inspired me.
I entered the chemotherapy room with all the objects I had been given, on my body, touching me in some way. I brought my eye cover and my headphones, and I found a Pandora yoga channel with peaceful background music. I queued up the channel, put my earbuds in, pressed play and pulled my eye cover down.
What happened in that hour that I spent meditating was beautiful and profound, unplanned and unexpected. As I started visualizing the cells in my blood it became a dance of sorts where the chemotherapy cells would meet with the blood cells, bow in honor and blessing, then pick them up in their arms to carry them where they needed to go. It was stunning.
At some point the objects that were on my body, connected to the people who had touched them and infused them with intention, seemed to evoke all of you. Into my bloodstream came the people that I love, so clear and vivid. Small faces and bodies started to help the chemotherapy drugs with their work of bowing, honoring, and carrying off. They seemed to be there with giddy joy and playfulness. Next, these mini spirits chose to travel to the lesions in my brain and work to clean them or prepare them for healing. I literally pictured them with spray bottles and cloth wiping down the edges, sending them care and love to be ready for what’s to come.
I was in tears under my eye cover and so full of gratitude for each and every one of you out there supporting me. I named everyone in my thoughts and saw your faces.
After, we went out for dinner on the roof deck together as a group and shared a lot of getting to know you stories. So far, I am not having side effects, but we are on heavy duty prophylactic medication. Some people from group 1 reported having some nausea in the night but not too bad. I’ve had a couple of hot flashes, but heck I’m used to that.
Fingers crossed that the night goes smoothly. We get up early for round 2 at 8 AM tomorrow.
Given that we were on a redeye flight, the travel went pretty smoothly. Because I need wheelchair service to get through the airport, we are moved to the front of all lines and whisked through checkpoints. It is a nice perk, but it is also a very strange giving over autonomy to someone I don’t know as they push me through the airport at their speed and cadence.
The 4.5-hour flight was unremarkable with little sleep for either of us. When we arrived in Mexico City, the throng of people waiting to move through customs, even though it was before 5 AM, was like being in a massive music festival with bodies pushed together so tightly there was no room to move and no clear lines. I was pushed through the crowd at my waist-height view while my chariot driver muttered repeated “excuse me”s to people to part the sea. While others were likely in line for a several hours wait, we were steered through customs and to our waiting clinic connection in under 15 minutes.
Our guide at this point, Lorenzo, gave us new masks and handed us plastic face shields to keep us protected for our van ride. He proceeded to spray sanitize our luggage and helped us into our van for the 2-hour drive to the clinic. It was now 5:15 AM.
I slept most of the ride, but the extreme bumps and jolts kept my mom awake. We arrived at the clinic a little after 7 AM and were smoothly ushered into our apartment where we learned we would have to stay until the following day when we would have our Covid tests.
We now had a full day-and-a-half in our nice, but small, apartment to get settled in. The apartment is very clinical. The surfaces are hard and easy to clean. The tones are browns and grays. Both bedrooms have windows that don’t open for airflow, a precaution to keep me safe from infection.
We were both exhausted and there are a lot of technology and systems to get coordinated once you arrive. We were handed a cell phone which has all the details of scheduling, treatment information, and communication with the staff and logistics of the building. We needed to learn how to connect with the kitchen for our meals, how to connect with our driving team, how to connect our phones to the television for video presentations and zoom meetings, how to get the TV working at all for the many times we will need to watch Netflix, and overall acclamation to our new home for the next month.
Whenever you have a question you send a note through the phone app they provided, and someone very quickly arrives at your door to help you solve the problem. Masks off, knock on the door, masks on, problem solved, masks off, knock on the door, masks on, and so on through the day.
We ordered breakfast, and then went to sleep for a few hours. When we awoke more technology and systems acclamation until dinner. We knew there was a roof deck on the building, but we were captive in our apartment until we knew we were Covid free. We watched the sunset from our windows, watched some comedy on Netflix, and went to bed. However, right before I went to sleep, I noticed that they had populated my schedule for the whole 28 days and I started looking to see what was ahead of me.
I clicked on the schedule for Wednesday, February 2 and saw that that would be my first day of chemotherapy. It felt shocking, a thump in my chest. I had it in my head I would start chemotherapy on Thursday and having it one day closer was challenging to integrate. That is the day when this process really starts. That is the day of no return. That is the day when things start to change.
I also saw that the day I will have my stem cells reintroduced to my body, what is known as my “stem cell birthday” or “day zero”, will be February 14. One of my fellow patients had noticed a building across from us that lights up at night with a heart. There seems to be a gentle, loving, theme emerging to this journey. At least I’m choosing to see it that way.
The next morning, our Covid tests were at 7:45 AM, along with nurses who came in to take a bunch of blood from me. We were told our Covid results would not be available until around 1 PM and we needed to continue to stay in our apartment until then. We were aching for fresh air and more space. We had YouTube videos to watch introducing us to the treatment, but no other distractions to mitigate our agitation and boredom.
At a little before 1 PM we got the notification that we, and all our cohort, were Covid clear. I looked at mom and said, “let’s go to the roof!”. We put on our shoes and our masks and raced up to the roof shouting with glee to the staff we passed on our way, “we are free!”
We were the first to emerge onto the roof, but very quickly after that others emerged with celebratory fist pumps and words of greeting. We then went to our first meal outside of our apartment and then off to have a chest x-ray.
I spent the rest of the evening in our apartment resting (not a lot of sleep the night before) and mom spent her afternoon/evening drawing on the roof deck.
That brings us to today, Tuesday. It started with breakfast and a lumbar MRI. I don’t have another appointment until this evening where they will do a cardiac evaluation and lung function tests. We have been hanging out on the roof, I’ve been writing, and the staff here put on a game of bingo on the roof deck for those of us who were not starting chemotherapy today.
Tomorrow will be a whole series of consultations with neurology, hematology, and a Zoom meeting to prepare us for the chemotherapy that starts at 1 PM. Those are big words to write. As I mentioned above, that is when it starts. That is when it gets real. I am taking all the well wishes, love infused objects, and memories of people and place with me as ballast.
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.
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.
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.
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.
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.
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.