Blog – Page 2 – A Life with multiple sclerosis

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.

April 28, 2022June 9, 2022

Post HSCT – Month 2 Symptoms Update

Magnolia Flowers

Last Saturday was exactly 2 months since I returned home. My treatment cohort gathered for our monthly zoom to catch up on how everyone is doing post treatment, which for the most part is really well. We agree that we are done with the Groundhog Day life that is our current isolation and hyper immune protection posture. And everyone is craving salad.

I have continued my process of weaning off baclofen since my post two weeks ago. There have been rough days in these last few weeks; intense moments of rebound spasticity, usually in the evenings, and a lot of big mood swings. I am currently at 15 mg per day, down from 60 mg per day.

I have been experimenting with different strains, doses, and timing of edible cannabis to reduce spasticity and over the last couple of days I seem to have gotten it dialed in. My research pointed me to any product that has a 1:1 ratio of THC to CBD. I have found a couple of RSO (Rick Simpson oil) strains that work, “sour tsunami” and “critical mass”. I have also had luck with an RSO strain called “Milky Way” which is very high in CBG and only a small amount of THC. Oddly, this strain makes me feel the most “high” so I use it less. 1:1 gummies, half of one every 2.5-3 hours, are also a winner.

My day-to-day routine of physical therapy, occupational therapy, MSGym, and meditation is ongoing and I’ve remained consistent. I feel like I’m dialing it in over time, and I plan to meet with my physical therapist next month to refine the plan.

If I had written this post three days ago, as I intended, I would’ve been writing about darkness and struggle. The last couple of days seem to have found a balance, both physically and emotionally, leaving me more connected to a hopeful and strong recovery. The darkness and struggle will likely return with the next baclofen dosage drop, but I now understand it better and can ride it out more easily.

Mobility/Walking/Legs

My mobility/walking/legs have been all over the place this last month. With weaning off baclofen, I’ve experienced some of the most intense spasticity occurrences I’ve ever had. Many nights my right leg spasticity will pull in opposing directions. My leg will involuntarily pull up into a full marching step at the same time it is doing everything it possibly can to stay straight. The pulling up wins, but it feels like it’s causing a little bit of damage in the process.

When my spasticity is strong walking is almost impossible and it can feel like backward progress. As I’ve gotten better at getting spasticity under control with cannabis, I am beginning to feel the growing and strengthening capacity and competence of my legs. As I’ve tapered off baclofen, I’ve had moments of feeling viscerally connected to my legs in a very functional way and they seem more able to take in information and gain strength, like they were returned to me and I didn’t even know they had been lost.

I took a video of my walking a couple of days ago when my walking felt spastic and stiff and I decided to make a video again today to reflect how much stronger it has been feeling. Fluctuations are going to be something I have to get used to, there are going to be rough days and days where I feel strong and I cannot get attached to either.

Hip pain is the other ongoing issue I want to track in this section. I have a lot of pain in my hips. I’ve had sharp pain down my left lateral hamstring for close to 10 years and more recently of lot of hip pain in the sacral area wrapping around the outside of the hip joints. I have seen a cacophony of specialists to try and resolve this. Imaging doesn’t show any structural problems. The conclusion of everyone I’ve seen so far believes it to be muscle/tendon/ligament pain. Locked up, frozen hip structures is incredibly common with MS when legs and walking are impacted. As I do more physical therapy exercises to get my hip joints and hip mechanism working again, the more pain I’ve developed. Sometimes I think it is the pain one goes through when beginning to use muscles that have not been working for a long time. With this belief system my logic is that the stronger I get the more the pain will dissipate. And that may be true. Other times I think it is the pain of something that is torn or broken, and nobody has found it yet. With this belief system I worry that I’m doing more damage than good.

If this truly is something that will dissipate as I get stronger, that doesn’t mean it will be fast and I would love to find a way to do both, get stronger/keep moving/ make my hips work and decrease pain while doing that. Pain and gaining strength don’t work well together.

Arm/Hand/Writing

This is an area where I have put less than ideal attention. I don’t do my arm exercises as often as would be beneficial, though I am doing the more that I had been, so it’s a start.

I’ve been trying to teach my right hand how to be a competent hand writer again. I decided to try a method of learning a specific “font” where I work by tracing and then practicing – a very humbling process. I would say as far as this month goes that I am holding steady on hand/arm function. Can’t tell that I’ve gained any meaningful ground, but I also don’t feel like I’ve lost any. As a side note, I’ve also been trying to play ukulele. Surprisingly I am finding this very fun even though I suck and will likely suck for a very long time.

Handwriting Font

Fatigue/Energy

I continue to be MS fatigue free. I get tired and I run out of leg endurance for movement/walking/exercise, but I am not completely wiped out before I even start the day. This is a huge win and continues to inspire me to believe that healing is possible. If treatment had an impact here, I have to believe it made a bigger difference than that.

Bladder

Pretty stable here as well. I have a neurologist appointment set up for the beginning of May where I hope I will have more clear answers. As I mentioned before, the retention side of my bladder issues continues to not be an issue anymore. I still have urgency and frequency, but I now know that my bladder and peacefully which reduces the risk for urinary tract actions, a really big deal. I continue to track daily to see if there’s any pattern or change.

Bowel Function

Another win. At this point, bowel function is totally normal, no issues.

Hair Growth

Hair has been stubborn to start its rebirth. About a week ago we did another shave as the first growth tends to be pretty weird and patchy. We may decide to shave it one more time to help the new growth be as thick and plush as possible, will see with this growth does before we decide. For now, I’m still bald.

Bald Head 1

Bald Head 2

April 4, 2022

Post HSCT Month 2 Musings

The Long Game

Well, I still have MS. Not that it was ever supposed to go away, but there is a part of me, and probably a part of every person who undergoes HSCT, that held on to a glimmer of a possibility that I would get home and miraculously everything would disappear, return to the before MS reality, be the one-in-a-million miracle case. To be honest, every morning there is this time between waking and moving where it feels entirely possible that movement will be “normal” – like waking up from a dream. I will swing my legs over the bed and be strong and stable. I will reach for something with my right arm and easily grab hold. This hopefulness is essential even if it is devastating.

The first few weeks that I was home I was surprised at how normal I felt, not that much different from how I felt before I left. I was thankful to have more energy, not need to sleep all day, and feel motivation to do things. Now, the long game is settling in. I still have more energy than before treatment and I still am motivated to do things, but the novelty has worn off. In addition, these first months of intense carefulness with infection risk comes coupled with isolation and loneliness. By necessity I am by myself a lot which leaves too much time inside my own head.

Other than my subjective experience, I won’t know if HSCT “worked” to halt my disease progression. And I won’t know, even subjectively, for one-two years. I have chosen to act as if it worked which feels like the only way to move forward. Therefore, my daily “job” is the tediously slow work of building new neuroplastic pathways for better mobility and function. This job doesn’t have coworkers or a water cooler culture. It is very solitary. And I’m not gonna lie, it isn’t fun. Each movement I practice is hard and I find myself in a resistance-acceptance-resistance cycle. I do some exercises, then distract myself with some other task, or game on my phone, or YouTube video, then knuckle down again for the next round of exercises. Progress is almost imperceptible, but it is happening enough that I continue. I have to remind myself all of the time why I do this, why it matters. Being active in the outdoors with people I love is my biggest motivation. And, as sappy as it sounds, the possibility of being an active grandparent is a motivator that brings tears to my eyes every time I think about it (no pressure on Kira to ever have children!)

Identity

Ironically, my reality before I left for HSCT is still my reality now that I’m back. Over the last 5-6 years as my body has changed and my ability to move has become more challenging, my world has become smaller – closer to home. Simple ways to connect with others, “hey, let’s go for a walk!”, “Let’s go hiking this weekend!”, “Let’s go to the beach for sunset!”, “It would be fun to cook dinner together!”, “There is a fun (band, comedian, play, etc) coming to town and I’d love to go with you!” are not so simple when movement requires a mobility device and walking from my house to the car is a significant undertaking. I try hard to focus on what I can do, but there is a cold hard reality to what I can’t do that can’t be ignored. An unintended side effect of the pandemic, and our society-wide need to retreat, was that it made the lives of everyone else more like mine, if even for a little while.

With this reality, I keep bumping up against questions of identity, meaning, purpose. How do I connect? How do I contribute? How do I play? How do I build something? How do I explore? How do I have fun? How do I navigate all of this and not have a morose pity party?

I am wanting ways to answer these questions that don’t involve a huge amount of effort or hard work and it honestly seems like a contradiction in concepts. Getting out of bed in the morning is work, taking a shower is effort, my physical therapy, occupational therapy, sitting up in a chair, and handwriting practice all ask me to push hard both physically and emotionally with barely perceptible results. Once again, it is all a leap of faith. All the work I do to hold onto and try to regain mobility marinates in my ability to hold hope and optimism.

I want to find ways to play and have fun that don’t ask me to work hard, I want relief and respite from work. However, everything I think of has a learning curve, a challenge that requires effort and work. Learn to play ukulele? Explore art making? Learn a new language? Read a bunch of enriching books? Write a book? I am searching for something that metaphorically feels like falling into fluffy clouds made of laughing gas. It’s a work in progress. Somewhere in there is a mindset shift where the effort and work along the way are fun in their own right.

To Baclofen or Not to Baclofen

The last couple of weeks has also been a brutal reminder of body and medicine chemistry. I have been on a medication called baclofen for several years now and it is never quite clear if it is really doing anything. Its purpose is to decrease spasticity, but it is very hard to tell how effective it is. Spasticity has a natural fluctuation in intensity by itself – over the course of a single day or from one day to the next. Is my spasticity better because of baclofen or is it just a better day? Baclofen also has negative side effects – it causes fatigue and creates muscle weakness. A devil’s bargain, possibly less spasticity traded for weakness and loss of muscle. How am I to build strength, muscle, and endurance if I’m fighting against this medication?

Getting off baclofen is no small deal. You must go very slow because withdrawal symptoms are no joke. Baclofen withdrawal has been compared to withdrawing from benzodiazepines. Specifically, there is an emotional/mood impact that feels like intense depression and there is a strong likelihood of “rebound spasticity” which is a crippling exacerbation of MS spasticity. If a person weans off baclofen too fast, it can cause cardiac arrest.

I am not a patient person. At the beginning of last week, I decided I wanted to wean off baclofen to have a better understanding of my baseline spasticity without medication. Without doing due diligence research, I decided to cut my baclofen dose in half right out of the gate. I went from 20 mg three times per day to 10 mg three times per day. About two days into this process, I started to write this blog post and noticed that the world was a gray, nihilistic, teary landscape – I mostly scrapped that writing. Three days in the rebound spasticity kicked in like pissed-off wild horses and I could barely stand up.

Wild Horses

I did me a little research and quickly brought my dose back up to my usual and the world stabilized. As of this writing, I have started a more gradual baclofen taper because I really do want to know the state of my body without it; what is my baseline. I am all for having as little medication in my body as possible. Fingers crossed for better success this time around.

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 16, 2022

The Whirlwind Medical Days

sunset For my own memory and for anyone else’s interest, I wanted to recount the four weekend monumental days that proceeded where I am now. All of this is written in a somewhat fatigue and chemo haze, so again mostly clinical not so poetic.

Friday

We got in the van and went to the hospital to have our port put into our chest. It is a quick procedure where they put you under a mild sedative and you wake up with an apparatus attached to your chest from which they will harvest my stem cells, do the remaining two courses of chemo, and reinsert my stem cells back into my body. It was cold, quick, and efficient and we were back to our rooms by 2 PM. Other than the exhaustion of leaving the building and traveling, I’m glad that part was quick and over.

Saturday

We got back into a van and headed to a different clinic where we spent approximately 3.5 hours in a very uncomfortable recliner in a very brightly lit clinical room attached to an apheresis machine where they try to extract as many stem cells as they possibly can. I was incredibly physically uncomfortable and needed to fidget and move all the time but kept being told how important it was for me to stay still for the machine to work effectively.

I got through it, the job got done and they were able to harvest approximately 1.2 million stem cells. Among the different patients in our group, the lowest count was around 475,000. I don’t know if it bodes well to have more, but I’m guessing it likely does.

We then went back to the clinic, had lunch, and found our way back to the chemo room for the first of next two day course of chemo. Overall it was a very long day of recliner chairs and having things taken out of and put back into our bodies.

By the end of that day I was deeply exhausted.

Sunday

We woke up in the morning and went straight back to the chemo room for our final dose of chemotherapy. It felt incredible to cross that finish line, though also so depleted and full of all the chemical molecules doing their job. It’s hard to fathom how much medication is floating around in my body right now. So different from my usual way of being.

Luckily, I did not get cystitis again. However, the bladder was still impacted and started the process of having to go to the bathroom every 30 or so minutes. All day. All night.

Monday

Wake up and back in the van to the same clinic where we had the apheresis. This time it was to take those beautiful 1.2 million stem cells and put them back into my body. This time all four of us got to sit in a room together as our stem cells were dripped back through our port catheters. It took about 20 minutes and the doctor came in to remove our ports and we were done.

They had erected a banner to celebrate our stem cell birthdays and the head of the clinic, Dr. Ruiz, came in to shake our hands and say congratulations. It was a moment of relief and the beginning of the recovery.

This will likely be a two post today as I begin to document this next phase called neutropenia which will last until I am recovered enough to return home. Currently I am still deeply fatigued, all of my internal organs seem insulted, and I’m waiting for the frequency of peeing to subside and hopefully to get a good night sleep.

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.