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  • Writer's pictureJessy Tolkan

DAY 100 Has Arrived!!!!!!!!!!!!!!!!!

Updated: Mar 1, 2022





"Day 100 is a milestone that many stem cell transplant recipients circle boldly on their calendars as the turning point in their recovery. That's when the greatest risk for critical side effects is past and when the stem cells have engrafted and begun making new blood cells."


WOW WOW WOW WOW WOW! I've made it, 100 Days, I've survived a SUCCESSFUL 3rd Bone Marrow Transplant. That feels pretty damn good to type on this blog. I've thought about what it would feel like since the first dose of chemo went in my veins 106 days ago, and on this WARM, SUNSHINE-FILLED, START OF WOMEN'S HISTORY MONTH, START OF MY BIRTHDAY MONTH - I have made it to day 100, and I FEEL FUCKIN' AMAZING!!!!!


The time has not flown by, but it hasn't all been bad, and this blog is the best proof of that...Alongside by best-in-the-world care team of Raj, my mom, and my dad, I'd say we've done a pretty darn good job making the most of a really difficult situation. The first 6 weeks felt more like 6 years, but as I've felt better the pace of time has certainly picked up.


The most remarkable thing about today's milestone is HOW I FEEL! I only realize now, feeling this GOOD, how bad I felt for so long. The reality is that my doctors started talking to me about needing a third bone marrow transplant in 2019. At that time, it was just unfathomable that I would be able to go through all of this. I was focused on being there for Ben, he was so sick, I was focused on my job (a meaningful job, but not worth sacrificing my health for), and I had this almost supernatural ability to just keep on keeping on. I came to just think feeling icky was the baseline, and powering thru was the way to go. TODAY, I feel truly full of life, I have an energy that I haven't felt in years, an excitement about life I thought may never ever come back. Is everything perfect? No, it never will be. My body is stubborn, and doesn't heal well, and being accident prone doesn't help. All that said - I feel almost euphoric when I wake up feeling this strong every morning. This new bone marrow is fuckin' amazing, and I'm going to ride this feel good waves as long as I can!


Health Update: By the Numbers


Days Since Transplant: 100

ANC Count: 987 (beating where I was at 100 days during bone marrow transplant 2 by nearly 7 weeks)

Platelets: Still low, but BETTER: 90,000

Insulin Shots per day: 1 (30 units)

Days until I return to DC: 15 (& Green light to FLY home with secure N95 Mask)

Diet Raspberry Snapples Consumed: At least 300

(Superficialmetric) Jean Size: 4 / Jean Size before stomach tumor surgery & bone marrow transplant: 14. This makes me believe there is a god and there are actually silver linings to health nightmares. Please don't judge me :)


I wasn't able to celebrate day 100 with the team at the hospital today, as my appointment was moved 'til Friday - but needless to say my medical team is feeling VERY proud and very positive about my recovery. They said I'm the best recovery they ever seen from someone going through their 3rd transplant. Now the nurse did follow up by saying I was the only patient they've had that has gone through 3 bone marrow transplants - but I'll take the compliment either way!


Other than continuing to do all the right things - that really all of us should do: Sleep 8 hours a night, drink 64 ounces of fluid a day, stay FAR away from sick people, keep my diabetes in check, avoid parasites - I am close to being able to return to a semi-normal/regular life.


The burn on my arm has changed colors, shed many layers of skin, and weirdly looks like Sickle - as Russia is invading Ukraine. I'm thankful that Henna is part of an Indian wedding tradition, as it will be a good way to cover-up this unwelcome LARGE new addition to my left-forearm :).


What's Entertaining US:


JIM TOLKAN turned 70!!!!! This past weekend was full of so much joy and celebration as we welcomed my Dad's into his seventies! There were decorations and gifts, and lunch in an igloo, and DINNER IN AN ACTUAL restaurant. There's something very powerful about watching your parent hit a milestone birthday - especially at a moment of recovering from a procedure like this. I sat at a table with many of his dearest friends - most of whom have been in his life for longer than I've been alive and I watched what it looks like up to live such a happy full and long life. For the first time, maybe since I was diagnosed with this Auto-Immune Disease in 2006, I can see myself turning 70, surrounded by my best friends for decades. That's a pretty damn good feeling.


I'm so so so so so grateful for my family. Not everyone can enjoy celebrating their family for all sorts of complicated reasons, but I love almost nothing more than celebrating with these people. We drank (I had my first martini in 4+ months), we laughed, we toasted, we missed Ben, and we wished my Dad A VERY VERY VERY HAPPY 70th Birthday.













What I'm grateful for:


  1. Making it 100 days in this brand new immune system...

  2. Waking up Feeling THIS Good

  3. The love of my life, Raj. My Mom, My dad. My brother's memory that propels me everyday, and the best most amazing friends on the face of the planet who have been with me (from afar) every single step of the way. YOU KNOW WHO YOU ARE!!!


L'Chaim! (Translation: TO LIFE)




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4 Comments


Sam Dorman
Sam Dorman
Mar 02, 2022

🎉🎉 💯 🎉🎉 L'chaim indeed

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Nolan Lehman
Nolan Lehman
Mar 01, 2022

Damn - this makes me happy!!!!

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jackikrashin
jackikrashin
Mar 01, 2022


Like

liz
Mar 01, 2022


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