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  • Writer's pictureBostnMike

Winter is coming, or so I'm told...


T'was 5 days since the transplant and all thru the house, and I would describe the sentiment as waiting for a shoe to drop... No, I"m not doing this one in rhyming couplets or iambic pentameter, sorry.


Captain's log, DOT+5


I decided to blog today and get this all out now because, who knows, tomorrow may be "the day," and I expect that when it finally hits, I likely won't have it in me to write for at least a week.


As a refresher for those playing the home game, DOT +5 means... it's been six days since the chemo was injected and five days since the stem cells were reintroduced, and I celebrated a 2nd birthday.


Everyone's top question... How I'm feeling? Well, if I just answered that, there wouldn't be much to this entry now, would there? So, humor me, and I'll (try to) humor you.


Here are the facts 'n figures and some of the most recent play-by-play.


The Melphalanm (chemo) is delivering on its promise, and my blood cell counts (specifically white, red, and platelets) continue on their steady descent "below base camp." Since a picture is worth a thousand words..... here are the data trends from a couple of those labs drawn DOT -1 through DOT +5.


White Cells:

Platelets:


As you'll remember, the constant step that is part of phase 2 of this treatment (the transplant) requires daily visits to the Duke Bone Marrow Transplant Center in Durham. (about a 25 min drive). Upon arrival, there are precisely two events I know will happen. After that... "it's dealer's choice."


Event 1: I will be warmly greeted by the fantastic staff at the Bone Marrow Transplant and Blood Cancer Center, where I'm "ID'd and Tagged." NB: Despite all these shenanigans over this last year, I still know my full name and date of birth! I haven't missed those questions once! #SoIGotThatGoingForMe


Event 2: Upon arrival in the treatment area, they draw labs... and the lab results will dictate the rest of the visit. Generally, within 15 mins of getting them drawn, my "Duke MyChart App" lights up like a Christmas Tree, and I can start to put the pieces together of what's coming next. I've gotten pretty good and guessing the "choose your own adventures" at this point!


Once the whites, reds, and platelets [virtually] bottom out, supplemental blood products can (and will) be ordered to help keep me stable as my body begins to generate them on its own. But they need to drop first. Therefore, in this first stage, the principal focus is electrolytes to ensure I'm hydrated and not running low on nutrients.


For example, on DOT +1, I was light on Calcium and Potassium. So, "The Amazingn JoJo" (my P.A. on the unit) ordered IVs to help bridge the gap and then sent me home. (about 2 hours).


I wasn't expecting the big surprise that followed. Since levels were not terrible, to begin with, and given the IVs would likely last at least a couple of days. JoJo gave me "DOT+2 Off!" She said, don't get used to this... it doesn't happen often, and rarely ever more than once.


A word about JoJo, she's from Shanghai, China, and an absolute delight. She tells it exactly like it is, pulls no punches, and has a fantastic sense of humor, even if she's a Buffalo Bills fan (she married into it).


When I first met her, her first question was, "Do you understand me?"

Me, "Yes, of course."

JoJo, "Good, because if you can't, we gotta fix that first."


So what exactly is a Day OFF?!


Ok, there are really "no days off," but for the purposes of this discussion, that simply meant on Friday, there was no need to drive to the clinic unless something is "wrong." So, I continue to take my temp every 4 hours while I'm awake and be alert for any other symptoms (mostly GI related). The meds are doing a stellar job, thus far, keeping those symptoms at bay... here's to hoping that continues. Most of the time, I just feel like Pooh Bear does...


DOT+3 (Saturday):

"Standard" events 1 and 2 were followed by a dose of JoJo, who ordered supplemental calcium and potassium... "just to top me up." After submitting her orders, she gave me DOT+4 off! #MindBlown And it was evident in her tone that this would be the last one.


And before you ask, yes, I'm eating plenty of bananas and electrolyte drinks.... this is simply par for the course. Once they were done, we said our "See ya Mondays," and we headed home.


Believe me when I tell you, I know it will not always be this smooth, and I'm [as ready as I think I can be] for when it isn't. At least, that's what I keep telling myself.


People keep asking, is it supposed to be like this? - No idea; my first time, but based on my research, probably NO!

Are you doing something differently? - I don't think so. I'm just "doing me"... when means:


I have educated myself... and every medical direction I've been given, and every suggestion from the care team for making this process as smooth and safe as possible.


I.have.followed.to.the.letter.


So if you are a MM patient following my journey and wondering what's next -for YOU-


I have NO idea... but my strongest advice is to "Listen to what your body tells you! Listen to everything your team tells you. Compare and combine the two. Ask LOTS of questions, and stay focused and positive."


Monday, DOT+5, Just home from another incredibly short visit which consisted of:

  • Events 1 and 2,

  • Administration of a quick injection that further promotes stem cell and marrow growth

  • NB: No Electrolytes!

  • I didn't even see JoJo (but I heard her)!

  • A quick chat with the attending Dr. on the unit. Where, again, he prepared me for what to be looking for. And discussed standard precautions to keep me and my caregivers as safe as possible.


So back to the original question: How am I doing/feeling?


I feel like I'm seated in the front row of a roller coaster - and I do love thrill rides - (this one, however, is in pitch black). Shoulder harnesses are in place. I'm hanging onto the handles. I intend to keep my legs and arms inside the car at all times (just like the ride tells me)...


... and as I walked back into my house today after the clinic visit, I can feel the slightly jagged tugging of my car as it clicks and clacks its way to the crest of the first drop-off. No idea what twists, turns, screams, and thrills await... But I ride confined that my fantastic caregiver team (at home and at the clinic), will ride it out!


A most sincere I Love You and thank you, Especially Allyson, Mom, Dad, Steve, Jeannine, Billy, Lily, and Matthew, for all you've done to stop your worlds and help me get on (and off) this ride.


And to all of you who continue to reach out with well wishes, support, notes, etc. THANK YOU! I promise to keep you "in the know," and I will respond as soon as possible with the expectation that it might be a "bit longer than usual" over the coming week or 2.


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