2024-12-14 Update
Hi All! Sorry to have fallen off the face of the Earth there, but it's been an interesting few weeks! I've had a bit of a December hiccup - a VERY mild case of pneumonia - a very common occurrence for folks in my situation. I'm doing fine - never even ran a fever (just sore ribs, a little short of breath, and RIDICULOUSLY fatigued), but my first round of vaccinations had to be pushed back 😕 so that was disappointing. Hopefully, I'll be clear next visit (the 19th) and I can get shots for Christmas 😁As speedbumps go, it's more annoying than anything... and a good reminder that this is going to take a lot of time and a lot of patience. Look! Hair!
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2024-11-18 Update
Counts are climbing, hair is sprouting, and I got cleared to get back to work again (from home, but hey! I'll take it!)! Big tests are coming up later this week - bone marrow biopsies and chimerism testing to confirm that the donor cells are fully established and that my bad blood has left the building. Fingers crossed! 💕
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2024-10-25 Update
Still heading to Dana-Farber on the weekly, still a beautiful drive, still making good progress! I'm currently in the stage where counts are all over the place, as the initial burst of frenzied cell production shifts to the more slow and steady normal person sort - think quality not quantity - as the rookies master the craft. So, while my counts are doing this scary little cha-cha, my docs assure me it's all expected and my dips are actually quite small, so quite good. Love you all!
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2024-10-12 Update
All good news on the weekly testing front - I just need to grow more red cells, but I'm right on track - "rockstar" progress even! Which means I get to take a few less pills, which is always nice (down to 21 - woohoo)! The view out my window is so pretty. Many thanks to the Agneta family for the beautiful plant. Rich brought some others from the deck to keep it company. 😁
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2024-10-03 Update
Beautiful day for our weekly drive to Boston - lots of color in the Berkshires. Whites and platelets are in the normal ranges, and the reds are limping along as expected at this stage, so all good news! 🤗 Andddd, I know it's hard to see, but there's definitely a little peach fuzz coming in on my chrome dome! Woohoo!
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2024-09-20 Update
I'm back from Boston with all sorts of good progress to report this week! My whites and platelets have crept up into the bottom of the normal ranges, my reds are holding their own, and I got to have my Hickman line removed... yay! Better still, they ran the first DNA testing of my blood (3 chimerism tests), and 2 of the indicators are 100% donor DNA, and the 3rd is 99%, which is awesome at this point ... and means IT'S WORKING!! 🍾🎉
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2024-09-13 Update
Another good follow-up with steady progress! All my blood levels were good, so no infusions needed. (Yay!) Just a little graft vs. host rash on my face and upper body to contend with, which they tell me is actually a good thing. If it wasn't so itchy, I'd have hardly noticed - it blends right in with my freckles!
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2024-09-10 Update
Sorry about the radio silence, but it's been a roller coaster this week... I need to learn to pace myself, and I kinda stink at it! Off to Boston for another check tomorrow - cross those fingers! I got myself a few things to brighten up my room, including these silly curtains - they have little star cut outs all over that look like the night sky when they're closed. They make me smile... just like you all do!
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2024-09-04 Update
All smiles after my first post discharge follow up! Counts are just where they should be & no transfusions needed. After a little extra magnesium & directions to get more rest, I was on my way home. A long day, but a good day!
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2024-09-01 Update
Great visit with Schuyler, Ariel, and Nash today AND Rich made really delicious pizza for dinner! Good chats with wonderful people, a little less pain, and a lot less nausea... a good day! Here's to many more!
Editors note: maybe a little less time in the oven next time, dad... looking a little crispy.
Note for the editors note: Nah, made to order! I like it crispy!
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2024-08-30 Update
My view was loads better, but today was still a tough day - lots of bone pain, which means my body is working hard to produce blood cells on its own. So good pain, because everything is working! Today was also the day that my hair decided to run screaming from my head in big clumps! Tomorrow is another day!
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2024-08-29 Update Part 2
Home has never looked so good. Now I need a nap!
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2024-08-29 Update
Heading home in true overacheiver style! I'm still weak and woozy, and will still have a longgg recovery period at home to go, but AT HOME, and that's a beautiful thing! Thank you all for the beautiful cards, prayers, and positive energy. You're the absolute best!
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2024-08-28 Update
Guess who's connected to zero IVs? This girl! Guess who's being discharged TOMORROW - more than a week ahead of schedule?! THIS GIRL!
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2024-08-26 Update
Ma's blood is lookin more like blood again and she's perking up accordingly. They're already talking about getting her ready to ship back home, maybe even a bit too soon for ma's feelings on the matter, but everything is trending positive!!!
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2024-08-25 Update
Ma's extra sleepy the last few days, so she's not writing an update and instead is conserving her energy for growing new bones and making crude gestures. Everything is going according to plan, but since the plan is to turn her blood in to water before it bloods back up, it makes for a tiring few days, she'll be back at it in no time (doctors say they're about to start making her hit the gym, so writing updates will be the least straining part of her day)
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2024-08-22 Update
Yesterday & today, days 7 & 8, were hit bottom hard enough, ya bounce type days. Fevers, the most fatiguey fatigue ever fatigued, infusions of red blood & platelet cells, and I can finally hold my hands steady enough to text again! It's a weird notion... having all these different fluids on board from all these generous people! Between the kindness of strangers & all the lounging around, I'm feeling rather Blanche DuBois ... hopefully, I'll be more Blanche Devereaux instead by tomorrow! 🥰
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2024-08-20 Update
They warned me that these days 4, 5, & 6 would be rough ones, and they weren't kidding! Fevers, aches and pains, rashes, vision issues, counts down to zero, and soooo much sleeping! Tomorrow is another day! Love you all!
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2024-08-16 Update
Day 1 & 2 were supposed to be rest days, but no rest for the weary! Lots of oh, let's say, tummy troubles and a central line malfunction that required its replacement this morning. Which might have been a bummer, had it not allowed me to sleep through a good chunk of the nausea today! And the new one is a very pretty purple color and much shorter and more manageable than the first. So, definitely a win. More chemo ahead tomorrow, so it's going to be an early bed time for this girl! Sweet dreams, all!
Oh and P.S. - I'm not real big on horoscopes (other than as a cosmic/comic excuse for occasional bad behavior), but this was mine on transplant day 😁
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2024-08-14 Update
It may not look like much, but believe me, right now, it is everything! I will do all I can to be worthy of this amazing gift I've been given, and I hope to be able to thank this donor in person someday. In the meantime, I will thank my lucky stars for all the selfless generous people out there, quietly making the world a better place... where would we be without you?!
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2024-08-13 Update
T minus 2 & 1 were more conditioning days, plowing the field for my little stem cell buddies, being planted tomorrow. On my list of weird things I never want to do again, today's treatment included chewing ice for 90 minutes while a particularly harsh chemo was infused. Zero stars, do not recommend. But if it minimizes sores in my mouth & throat, I'll be glad I did it. And rumor has it, it will. Big day tomorrow!
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2024-08-11 Update
T minus 4 and 3 are lumped together as near carbon copies of one another. Labs, walk, meds, walk, chemo, walk, eating everything in sight while I can before it gets tough next week... but I did get to shower and put on my own clothes today, so that's definitely a win 🥰
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2024-08-09 Update
T minus 5 was a busy day - sooo many good people to meet, all on a mission to get me better! This was also all-in day. The first conditioning chemo is on board, so no more waffling allowed! (mmm... waffles... or Waffles?)
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2024-08-08 Update
T minus 6 has been a long day, but I'm officially tubed up and settled in my room, ready for conditioning to begin tomorrow. 💕
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2024-08-07 Update
Hi All and welcome! Schuyler set this up so I can keep everyone in the loop through my hospital stay and recovery period. Hop on any time for pics and notes and random silliness. Drop me a line at 'kmhv3 ☺ yahoo · com' or shoot me a text. I'll answer when I'm feeling perky ☺️
We did a little pre-gaming yesterday, zipping off my hair before it runs away screaming on its own! From Einstein to Lex Luthor, just like that!
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Chup and Slauce are on a year long vacation over in the Troylet
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