{"id":724,"date":"2023-02-14T13:40:57","date_gmt":"2023-02-14T21:40:57","guid":{"rendered":"https:\/\/seedsproutblossom.com\/?p=724"},"modified":"2023-02-14T13:40:57","modified_gmt":"2023-02-14T21:40:57","slug":"post-hsct-1-year-birthday","status":"publish","type":"post","link":"https:\/\/seedsproutblossom.com\/?p=724","title":{"rendered":"Post HSCT – 1 Year “Birthday”"},"content":{"rendered":"

\"MomToday is the one-year anniversary of the birth of my new immune system, the day they put my stem cells back in my body to begin the process of rebuilding an infrastructure free of the memory of MS, hopefully. So, I thought I better get my butt in gear and write!<\/p>\n

February 14, 2022 (a new meaning to Valentine\u2019s Day) was the day they reintroduced my stem cells. February 14, 2023, my 1-year \u201cstemmie birthday\u00b4. Also the day Kira and Zac leave on a three month trip to Southeast Asia. Grand adventures on both counts!<\/p>\n

I also want to say a big and beautiful “happy birthday” to Kira who turned 24 on February 8th.<\/p>\n

\"Kira<\/p>\n

This post is playing catch up, so it is a long one\u2026<\/p>\n

Month 10<\/h2>\n

Ditto Month 9 \u2013 it sucked.<\/p>\n

Month 11<\/h2>\n

The summer I turned 16, my grandmother took me on a three-week trip to France.\u00a0 We boarded a plane leaving from Seattle and landed at Charles de Gaulle airport in Paris and while the Airport was majestic, the surrounding part of the city was grittier than I expected Europe to look.\u00a0 I remember being nervous that Europe, and Paris in particular, had been overhyped.\u00a0 As we arrived in Paris proper, the majestic was restored many times over.<\/p>\n

We spent a packed and beautiful week in Paris where we met up with my uncle Rob \u2013 a seasoned expat who spoke fluent French.\u00a0 Together, they took me to a sweet little restaurant, Au Franc Pinot on \u00cele\u00a0de la Cit\u00e9<\/em>, to celebrate my 16th<\/sup> birthday.\u00a0 To get to our table we had to walk down three flights of stairs underground. \u00a0My memory tells me the walls were earthen – moving and alive – with carved out shelves for candles.\u00a0 As we descended deeper and deeper into the underground bowels of Paris, I expected our waiter to be otherworldly or at least suspect. That dinner was the first time I tasted (or had even heard of) foie gras \u2013 which I enjoyed tremendously and chased down with my first Kir Royale.<\/p>\n

The morning after my birthday dinner, my grandmother got up early, before I woke, and bought a watercolor painting from a street vendor.\u00a0 It depicted the exact corner with the restaurant where we had celebrated my birthday.\u00a0 I carefully carried that painting through the rest of our trip.\u00a0 I have brought it with me every place I have lived since \u2013 Eugene, Boston, New York, Seattle, and now here to Indianola.<\/p>\n

\"Watercolor<\/p>\n

I fell in love with Monet on that trip.\u00a0 We had bags of flour thrown on us from a bridge over the Seine while we rode a Bateaux Mouches.\u00a0 We stayed up late and walked the Paris streets, ate dinner at street caf\u00e9s, toured museums including the Louvre where I was disappointed by the Mona Lisa – so small.\u00a0 Because we were in Europe, my grandmother didn\u2019t care that I was under 21 and I had wine, beer, and champagne freely.<\/p>\n

\"Bateaux
Bateaux Mouches<\/figcaption><\/figure>\n

We drove through Arles, Avignon, and St. Tropez where we shopped, ate, and explored. With the help of my uncle, we enjoyed a week on a barge through the burgundy region of France \u2013 Dijon to Beaune.\u00a0 I was closer, by far, to the age of the crew than I was to the other guests, but it was magical.\u00a0 We took a horseback ride, toured chateaus, ate the most amazing food, and tried without success to take a hot air balloon ride \u2013 the weather conditions were sadly never right.<\/p>\n

\"Me
Me and the crew on “La Litote”<\/figcaption><\/figure>\n
\"Crew
Crew on “La Litote”, bestill my 16-yr-old heart!<\/figcaption><\/figure>\n
\"Bill
Bill from Bath, my biggest crush!<\/figcaption><\/figure>\n

At the end of that boat tour we visited a wine cellar, Marche Aux Vins – a multi-floored cavern with candle sconces on the walls and rows and rows of oak barrels.\u00a0 We were not skilled at the spitting part of wine tasting, which was probably their plan all along, and were more than tipsy by the time we reached the \u201cpurchasing room\u201d.\u00a0 My grandmother bought multiple crates of wine to be shipped home and I bought a couple of bottles to take home with my teenage self.<\/p>\n

\"Wine
Wine tasting “cup” from Marche Aux Vins.<\/figcaption><\/figure>\n

I share this now because my grandmother passed on Dec 12 at age 96.\u00a0 She was surrounded by family \u2013 her daughter and son In-law, two of her grandchildren and their spouses, and a squirrel\u2019s nest of great grandchildren.\u00a0 She was ready and her passing was without pain.<\/p>\n

The memories of that trip to France are vivid for me and I know they were vivid for her.\u00a0 Over the years and decades since then, we talked about them often.\u00a0 In October of this year when I visited her, almost 40 years since the trip, we still talked about it as if it was yesterday.<\/p>\n

Last night as I was walking downstairs I looked at photographs of her that hang on our stairwell wall and it hit me that I\u2019m the only one who still holds those memories.\u00a0 My co-author of those stories is no longer here.\u00a0 They only live inside me now and I miss her.\u00a0 It reminded me of what she said when my grandfather passed, at his memorial.\u00a0 She shared that the thing she missed most was having a person in her life who knew all the stories.\u00a0 The stories of their marriage, good and bad, the stories of raising their children, the stories of their travels, of their friends, the houses they\u2019d lived in, the meals they\u2019d shared, the decisions they\u2019d made — the minutiae of life. I get that now.<\/p>\n

This morning is the misty gray that comes with living in the Pacific Northwest near the ocean.\u00a0 It is quiet, my house is empty.\u00a0 I will offer this clich\u00e9\u2026\u00a0 It\u2019s been a long time since my last blog post. \u00a0I skipped right over a month 10 and find myself now at month 11.<\/p>\n

Between my last post and now it has been rough.\u00a0 My spasticity was so intense that I was in bed a lot, not really functioning.\u00a0 It was a dark time which I recognize now correlates, somewhat symbolically, with the darkest days of the year and the stress of the holidays.\u00a0 I lost all interest in writing.<\/p>\n

Over the past few weeks, it seems that medication management is starting to work.\u00a0 I feel connected again to the world.\u00a0 I can dream about the future, do physical therapy to get stronger, comfortably participate in social activities.\u00a0 I can sit at the table and play games.<\/p>\n

I am not sure what exactly is different.\u00a0 I have tried these medication combinations before with little effect, but now they seem to be making difference. Some days are still rough \u2013 two days ago I was in bed all day \u2013 some days I feel relatively effortless.\u00a0 Most days are in between.<\/p>\n

I have been able to start my day feeling that I can move things forward; that I can contribute.\u00a0 I have more capacity to participate.\u00a0 I am taking on volunteer opportunities in my community and connecting more with friends for conversations and catching up, I feel like I\u2019ve lost time with people.<\/p>\n

As I close in on the one-year mark I\u2019m having difficulty wrapping my head around the fact that that much time has passed.\u00a0 In a few days it will be a year since I stepped on the plane to Mexico. \u00a0Am I better?\u00a0 Did HSCT work for me? More on this at the actual one-year post\u2026<\/p>\n

Month 12 \u2013 1 year<\/h2>\n
\"Our
Our crazy cohort<\/figcaption><\/figure>\n

Where am I at the one-year mark? Cautiously hopeful. Still in pain but working on it. Still experiencing loads of spasticity but working on it. I would say I’m in the middle of things. I’m on the upward arc from the nadir, I\u2019ve seen the darker parts and I feel they are behind me. Am I back to my baseline? Not yet. Only because my spasticity is still higher and different than before treatment. If that were to go away, I\u2019d be back to baseline or better. My bladder is better, my fatigue is better when I’m not medicated to high heaven. My mood is balanced. Some days are still hard, but those days are fewer. More days are good.<\/p>\n

I’m feeling optimistic. I have this sense that there is a strong, fluid moving skeleton underneath a fa\u00e7ade of spasticity, waiting to emerge. I feel strong inside. In those rare moments where my spasticity eases, that strong understructure comes forward and makes itself known enough that I can trust it’s there. I feel stronger and more centered than I did in the dark of winter.<\/p>\n

I continue to turn over all stones of therapies, modalities, and medications. Under one stone, I found that Swedish Medical Center, here in Seattle, offers a free music therapy zoom group every Wednesday morning. What a fun discovery! It is both meditation and movement therapy – using music in connection with movement and emotional exploration. It connects the mind and the body in a way that makes sense to me. It is both science and heart.<\/p>\n

Am I done? Not yet. Am I hopeful? Mostly. Do I regret treatment? Not yet. I think if this spasticity does not relent I might wonder if I did the right thing, but it is still early for that. I don’t think I will regret this even if that doesn’t happen. There’s no way to know if the spasticity wouldn’t have happened anyway. Also, if I hadn’t tried HSCT I would’ve always wondered. And since there are no other options, the risk wasn’t really that great.<\/p>\n

I’m feeling at peace. I am starting to have more in my life than just my MS, though it does still take up time and thinking. It will continue to be my “job” for the rest of my life most likely.<\/p>\n

So, what am I doing? Learning to use Spotify and Photoshop, volunteering with my local community, reading, loads of physical therapy, counseling, music therapy, writing, spending time with my family, supporting my smaller circle of my intentional community (wise acres), making granola and yogurt – I’m staying busy.<\/p>\n

I feel on the cusp of something, some internal revelation maybe, some sort of quantum leap. I’m open. We shall see what the next year holds. Happy one year “birthday” to me. If you are still here, thank you for reading along.<\/p>\n

\""Birthday"
“Birthday” card from Kira.<\/figcaption><\/figure>\n

Symptom Update<\/h2>\n

Walking\/legs\/spasticity:<\/h4>\n

This has been my focus since the start of recovery.\u00a0 I\u2019ve mostly covered this above.\u00a0 It is still rough, still very much present, but significantly more managed than before.\u00a0 I am motivated and energized to do physical work every day.\u00a0 Over the last few months, it has been difficult-to-impossible to do simple exercises, even though I was motivated to do so.\u00a0 Now I get to be creative, enjoy my body more, I get to build.\u00a0 That ability to build gives me hope.\u00a0 I am willing to do the hard work that needs doing if I know things are moving forward.\u00a0 Working with my Physician, I am planning to attempt Botox again on my leg to see if we can impact the correct muscles this time.<\/p>\n