Tag: HSCT

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Shaving My Head

With this treatment I am going to lose all my hair. It is that kind of chemo. Most people keep their eyelashes and eyebrows, but not everybody. From what I have read, I will lose my leg hair, armpit hair, pubic hair, head hair.

I am lucky that this is not a big deal for me. 15 years ago, for fun, I shaved my head and kept it really short for over a year. I know what I look like without hair. I know what it feels like without hair. I know in my head looks like. I am not afraid of this part.  I’m going to be fine.

In preparation I thought it would make it a heck of a lot easier if I shaved my hair really short before I left. I also thought it would be fun to do that with Kira while she was here over her holiday break and to dye it midnight blue.  Why not? If I don’t like it it’s gonna fall out in a month anyway.

The night before Kira flew out to California, we got out the clippers, put a salon shawl around me, and went to town.

Elisha
Before
Elisha After
After
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Meeting My New Physical Therapist

Over the last 15 years I have worked with more physical therapists than I can remember.  The gold standard, and pretty much a unicorn I have yet to find in the Seattle area, is a PT with an MS specific certification. This is a person who is skilled at foundational/orthopedic PT, has a deep understanding of neurologic issues, and specifically knows how to incorporate exercises that re-create the movement patterns you’re trying to repair. This is more than just strengthening muscles. The key is helping your brain remap neurons around the spot where the myelin has broken down communication.

I have found fantastic online options for this, but none of them are personalized to me. I have worked with many nice and talented people, but no one who really understands MS. Prior to leaving for Mexico, I wanted to see if I could find someone who could help me put together a routine for while I’m there that would help me keep moving so I don’t atrophy. I also wanted to establish a relationship enough that I could return and start working with this person as soon as I was able to do more in my recovery.

I am again thankful to my PCP who recommended I look into a practitioner at Kitsap Physical Therapy in Poulsbo. This practitioner is not an MS certified PT, but she does have extra training in neurologic issues, so basically the next best thing.

Jackie is a wonderful human and I immediately felt drawn to working with her. She did a review of my mobility issues and then asked the surprising question, “So, what do you do to fill yourself up?” This question was so unexpected and insightful that I immediately burst into tears. I explained that that has been my biggest struggle to figure out as my body’s abilities have changed. She said, “okay, we can work on that.” Definitely off to a good start.

We will only have a few appointments before I leave, but I feel hopeful that she will be an important part of my support team in recovery as I worked to rebuild my strength and function. Next teammate added to the team, check!

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Hematologist

An important part of my preparation for treatment is setting up my support and recovery team for when I return. I met with my neurologist and she is supportive and on board to continue working with me when I return. I met with my PCP and received her full endorsement for treatment. She also was a fantastic resource for finding a great hematologist/oncologist who understands this treatment process and will be skilled at monitoring my recovery.

Medical Team
Photo Credit: Everyday Health

I do many appointments virtual these days, one of the silver linings of Covid. But for my first appointment with this physician it was important to him that we meet in person.

I can’t remember having a medical appointment like this before. Upon entering the exam room and sitting down, the first thing he said to me was that he did not like reading the medical chart before meeting with a  patient. Instead, he spent the next hour and 15 minutes doing a very thorough and detailed medical history. And, he took all of his notes on paper, multiple sheets of paper, handwritten. He was present, intelligent, kind, and insightful. I left feeling like I was in very good hands. He sent me up to the lab to have 13 vials of blood drawn in order to do a deep dive into my health markers and immunological strength.

If I had not known he would be asking for this extensive amount of laboratory work, I wouldn’t have caught the original phlebotomist’s mistake of pulling an old order from a different physician who only needed one vial of blood. The original phlebotomist was a student and I was switched to a fully credentialed phlebotomist and watched the blood flow.

Blood Cells
Photo Credit: Franklin Institute

All the results came back stellar and provide an important piece of my foundational comfort level moving into treatment.

Team member added, check!

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New Year’s Day, 2022

In 31 days, I start my HSC T treatment. In 29 days, I get on an airplane to fly to Mexico.

31 days of this life where I haven’t yet had treatment. 31 more days where I live in my body the way it is now with no interference. After I start, it is a one-way trip. It is the beginning of a year or more of breaking down and rebuilding. A year or more of complete unknowns. So, for now, life is familiar. For now I have my hair. For now I have the energy and strength and mobility I am familiar with, even if it is a daily struggle.

Because it is so close, I feel like every day should be full of getting things done and preparing. Instead, today I made yogurt, did laundry, and spent time with my family.  I double checked the list I have been making to make sure it had not run away.

Family in the snow

One reminder of why I want to do this has been watching my friends, family, and neighbors play in this beautiful winter snow that has held on around our Hill for the last week. I’ve not been able to step outside even once because I don’t have the balance or strength to navigate even stepping outside the house. There is no guarantee that this treatment will help my body reverse time, but there is a chance. And, if the treatment can stop progression, then I may be able to rebuild my strength and new neural pathways without fighting against the ever moving forward progression. Physical therapy may actually help me improve instead of just hold stasis, treading water.

 

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New Year’s Eve – The Pre-Ramble

I had planned on starting writing about my HSCT journey on January 1, 2022.  Seemed like a logical place to start. New Year, 31 days from the beginning of treatment, easy package tied up with a clear timeline bow. But I’ve been feeling antsy all day to write. I’m feeling poignantly aware of how short the time is between now and January 31. How many things there are to do, people to see, projects to wrap up.

I woke up feeling like a racehorse or Greyhound dog behind the starting gate or a sprinter crouched at the starting line, waiting for the starting bell. Pent up and ready to run. But there is no racetrack. There is no clear oval with lane lines. I think I’m more like a windup toy who, when let go, will move and spin in chaotic directions.

Until today I’ve been feeling like I had acres of time and I’ve been slowly plodding through what needs to get done in order to be prepared to leave. Now it suddenly feels like not enough time for everything I think I need or want to do.

I have a battery of medical appointments in the next couple of weeks. January 1 starts off three days of colonoscopy prep, which may be a twisted omen for how this year will play out. Later in the week I have an appointment with a hematologist/oncologist to get all my baseline labs done and make a game plan for recovery treatment when I return. I have an appointment set up with a spine Dr. to figure out if there’s anything more that can be done with my hip pain. I am meeting with a new physical therapist to get a game plan for recovery work when I get back.

I have a packing list, but is it complete? I have a to do list, but am I missing anything? I want to make a will. I want to make sure everyone knows where all the numbers are for accounts and commitments that run our life that I manage. I am 99.99% sure I will live through this, but there’s always a chance and I want to make sure everything is handled in case. Morbid, I know.

So, this is my preamble or maybe more correctly my pre-ramble. It is New Year’s Eve and, like many of us in the world we are staying home, in our pajamas and likely in bed before midnight.  Another year that goes out with a whimper with a new one coming in with held breath.