Day +25

Priceless Moment 💙

Surprising my girl 💕

Hello!  Rhonda Dixon reporting from MY couch here.  I have to apologize because I forget not everyone is on Facebook and may not even know I'M HOME!!!!  For a whole week already.  It was a pretty neat day...  with 13 days to spare from my goal!

Last Monday, when the team walked in, and saw I was a whole new person for the second day in a row and my counts nearly doubled from the day before, they confirmed I could go home the following day.  It was a very strange and surreal feeling.  I had spent 26 days with the most fabulous staff of nurses, techs and doctors.  I mean, who else knows everything about you from your kids and family, what you last ate, your pain level, to the time of your last bowel movement and texture of it.  LOL!  I went for a late night walk Monday evening to say goodbye to the night shift.  I could hardly sleep that night (not that I slept soundly during any of the stay).  The team walked in about 9:15 Tuesday morning, did their assessment and asked what time I'd like to get out of there.  I glanced up at the clock and saw it was 9:35.  That's when I smiled and replied, "9:36?"  They laughed and said, "Let's shoot for noon.  We will go ahead and release everything and get the discharge process going."  Boom.

I was on a mission.  I was determined to get home in time to surprise Blake off the bus.

My door became a revolving door of in and out.  So many people to give me their at home instructions.  As Jason said, "I come with quite the instruction manual right now."  Some do's, mostly don't's.  As I've said before coming home was really just the next baby step in this process.  Dad arrived, I got unhooked from a last minute magnesium infusion, snapped a few more pics in the penthouse and got outta there.  Chicago traffic wasn't really on our side getting out of the city, but, I REALLY wanted a Firehouse Sub.  Jason placed our order from his phone, we grabbed the order, ate on the way home and pulled up to the bus stop with about 2 minutes to spare.

Mom and Kendall were just walking up when I got out of the car.  "Grandma, that looks like your car!"  I started walking towards her and when she finally realized who I was she ran into my arms!!  We were all gathered at the bus stop when the bus pulled up.  Blake got to the door and it didn't take long at all for him to realize what was going on.  He came off that bus with the biggest, sweetest smile and ran right into my arms.  His emotions got the best of him... and me.  Such an unforgettable moment.

In true, typical, start of school fashion, both kids spiked fevers by the end of the week and talk about panic!!!  I CANNOT GET SICK!!!  So far, so good.  But, seriously?!?!  Haha!  Please evacuate the house.

My home health nurse visits every other day for blood draws and vitals.  Jason flushes my central lines the days she's not here.  I have to constantly remind myself I'm not as "good" as I feel and I have to force myself to rest.  The fatigue does set in quickly and it's not unlike me to disappear for a snooze.  My body is working triple time and still trying to understand what these foreign "objects" are doing in my body.

Fast forward to today.  My first post transplant Dr visit.  White blood cells (4.9) and hemoglobin (11.1): normal.  First time I've heard that word in 22 months.  Neutrophils: 2.9.  Still low but better than my 0.7-1.0 range since diagnosis.  Platelets: 96,000.  Left hospital at 34,000.  Just more signs those precious stem cells got in and GOT TO WORK.  💪  Blood and platelet transfusion appointments got cancelled - none needed today.  And out we walked...  Feeling really good about everything.  AND THEN IT JUST GOT BETTER....

Jason was browsing Twitter when he saw Anthony Rizzo tweeted he was at Lurie's Childrens Hospital.  He was doing the official ribbon cutting ceremony for the waiting room named after him and dropping off a $3.5 million check to benefit all the sweet kids fighting the fight.  This man is a class act and to say I'm a fan is an understatement.  He fought and killed lymphoma 10 years ago.
Dad: "Want to walk over and see if he's still there?"
Me: "I'm really hungry (lol), but, yes."

My Rizzo #44 ⚾💙💓

We walked into the lobby.  No sign of him.  Went downstairs to the ER area and I asked a security guard if he had left yet.  "Not that I've seen."  Perfect...  I will hover by these here doors and wait for him to walk out because I'm SURE this Mercedes SUV parked in the ambulance lane isn't just some Joe Smoe's...  10 minutes went by and I suggested we go.  I wasn't interested in waiting around all day.  When I looked out the window there he was with his mom, dad, brother and fiance!  (No idea how we missed him)  Getting into the Mercedes!!!  I bolted out the side door and screamed, "ANTHONY!!!" Like some total creep - hahaha.  "Can we take a picture??"  As I walked up a young lady and her mom walked up behind me, "Anthony!  Can my daughter get a picture with you?  She got to ring the chemo bell today in celebration of her last treatment!"  We all cheered.  They snapped their picture and walked away.  I told him I was 3.5 weeks out from a stem cell transplant for leukemia and just received some good news on my first post visit.  "Oh my gosh!!!  That's amazing!!!", he replied.  I gladly put my arm around him and cheesed oh, so hard.  I was totally star struck.  What a day.

It's way too early to talk about my stem cell journey.  But, I will say those 26 days were an absolute roller coaster.  One day I was requesting a cheeseburger and curly fries, the next pooping and puking my brains out, cutting up the noodles in my chicken noodle soup in hopes to get one down.  Laughing and joking with the nurses and walking laps to crying because the feeling of weakness was taking over and I was so scared.  Stating I had to go the bathroom and finally 20 minutes later I'd work up the energy to push the button on the bed to just sit up.  Crazy to think how far I've come in just one week... and just how far I still have to go.  The 2 and 5 AM wakeups can subside any day now.  I'm definitely still on hospital time where they know no normal hours.  What I wouldn't give to sleep through the night.  But, then again, I'm not even 1 month old so what do I expect? 👶😉

Kendall was so interested in when my hair was going to fall out until I was home and she asked to see it.  When I took my hat off she told me I looked silly and immediately asked me to put my hat back on.  When I tried to lay with her at bedtime she put on quite a scene because she was scared of me with no hat.  Made me sad... My kids were scared of me...  So I put a hat on to lay with her and she was out in 2 minutes.  Blake wasn't too sure of it either but never really made a fuss of it.  Just Sunday at dinner, I, of course, was wearing my hat when Kendall asked if my head was hot.  "Yeah, it is."  She and Blake both told me to take my hat off to feel better.  Kendall informed me, "It's OK!  You're still Mommy!"  Blake calmly stated, "It's OK, Mommy, your hair will grow back in no time."  Brought me to tears.   Thank goodness we got over that.

Busting out!!!

Pill popper much? 🙄

My favorite tech, Ben

It's been a journey, 1668. But, ✌ out. 

Just another walk...

 Today marked the first 1/4 of the 100 day critical recovery period.  I think I can, I think I can.

The bone marrow registries just keep rolling in.  I can always tell when a batch was mailed out because I'll get 3-5 messages/texts/posts in a day.  LOVE IT!!!!!!!!!!!  I'd love to hit 100 registries because of my journey.  BE A HERO!!!  Register today.  CLICK HERE 

Greg, my brother, my donor, has written his guest blog entry and I will post that soon.

Our freezer is FULL of meals.  Our hearts ore overwhelmed by friends and strangers generous hearts.  The cards and packages just keep coming (everything is getting forwarded to me by the way so don't worry if you sent something to the hospital).  In a world of crap, we are reminded daily of our own amazing village.

Way past my bedtime.  Love y'all.  Be well.

Love,

Rhonda Kay
XOXO

Movin' On Up!

PRAISE THE LORD!!!  My counts started trickling back in last Thursday, just one day after my salty post.  Apparently, it just takes a little bitchin' to get things back in gear.  This was exactly what we were waiting on.  A sign my brother's stem cells got in, found their home and got to work.  They engrafted!!!

It's amazing how your spirits get lifted when you start to feel more like yourself after a little blood shows back up in your system...  what a concept.  And for the record, yes (!) you can still function (barely) and survive when drained of white blood cells, neutrophils, platelets, and red blood cells.  Last week was hard, dark, long, and definitely the fight of my life.  I loved having my saltiness being pointed out as "turning up the fight".  Hadn't thought of it like that, but, that was so true.

When just making that 10 foot walk to the bathroom took some major mental preparation, the LAST thing I wanted to do was shower, go for walks, eat, or even just sit up... and some days none of that happened!  The nurses kept offering me ice cream for breakfast, lunch or dinner.  I finally snapped, "I don't care if you bring me a juicy cheeseburger that I'm craving SO bad, steak and lobster or a simple little Saltine cracker.  I CAN'T SWALLOW!!!"  Then I'd get more upset because it even throbbed to talk.  I was even spitting out my saliva so I didn't have to swallow.  I was waving the flag by the time the team walked in my room Wednesday for rounds.  "Give me the pain pump.  I surrender.  Change everything to IV.  Don't talk to me and just let me sleep."  That's when they stated I was in the deep valley and it was just a matter of days before I started feeling better.  I hardly believed them.  I had, at one time, 9 bags of "stuff" hanging up on Ivy and I just couldn't imagine, at that moment, that I would come out on the other side of this and feel myself ever again.  I experienced a whole new level of miserable.  

By Saturday, day 3 of rising counts, I was already bouncing back.  My mom made me some homemade navy bean and ham soup.  OMG.  My fave. I was able to get all that down except the ham.  I was back to walking laps and showering (which was good for everyone - haha!). The air show was cool.  Planes literally flying right out my windows. Best of all, our sweet babies came to visit me.  I hadn't seen them in 15 days.  That was way too long. I'm still shampooing and conditioning my head because that feels SO good on the dryness and itchiness.  Oh, and I officially parted ways with Ivy today...  yep, I asked for everything to get back to oral form.  I'm a free woman!!  She was miserable at night.  Constantly squawking and needing the nurse causing my roommate, whether that was Jason or my mom, to be woken up too.  She was good for lending a hand to help step into my pants after a shower or boosting me out of bed on my weak days.  But, overall, our goodbye was tearless. 

There are rumors flying around that I'm out of here sooner than later.  Sometime this week.  My counts are bouncing back nicely and I, physically, am too.  Asking for everything to get back to oral intake was a huge step they were looking for.  Let's all pray the next few days are uneventful so I can finally step foot outside and breathe in that summer air!  Granted, going home is just the next baby step in this critical first 100 day recovery period.  I will continue to be monitored very closely with home health visits and weekly trips downtown to check in with my doc.  I will basically live in isolation.  But, I will be HOME.  On MY couch.  In MY own bed. Home with my FAMILY.  HOME COOKED meals.  HOME.

Be well, friends.  Next post will be from my couch :)  I'm off to crank out 10 laps before bed. 

Love,

Rhonda Kay

XOXO

Day +12. Valleys and Pretty Little Bows

Hello. Reporting from 1668 and I have to warn you - I'm salty today. There will be no sugar coating this one. I'm currently not pooping sunshine and rainbows.  Here's the low down.

Today marks my 20th day here. I miss my kids like crazy. Blake starts kindergarten tomorrow. I have been bottomed out for 5 days now.  I'm overly fatigued. I fully understand the whole "valley of a transplant" lingo. I'm scraping the bottom of the barrel.  I have a mouth full of mucositis (mouth sores from chemo). I can't eat, drink, talk  or swallow.  Just not up for anything. All my meds have been turned over to IV for the time being.  I'm on a pain pump so I can grab my next dose of Dilaudid at my discretion. I spiked my first neutropenic fever which called for a lot of blood work, chest X-Ray and urine sample. Oh, and I'm bald.

Not fishing for compliments.  Nothing you say or do helps with the fact I had to shave my head.  Sorry. The "you're still beautiful's" and "It's just hair" are kind and sweet,  but, there's really no need to wrap it up in a pretty little bow. Real life here. It's the main thing that caused me anxiety and I'm so glad it's over with.  One less thing to constantly think about it.  So, my sweet, smart, and curious Kendall Kay finally got the answer she was looking for yesterday. "Yes, mommy lost her hair."  Mom and dad, please understand I'm excusing myself from the "no hats at the table" rule for a few months. Who knows! Maybe I'll be totally comfortable rocking the bald head?!

On that note... 😜😜. Haha! I told you I was salty.  Air and water show this weekend.  Definitely giving me something to look forward to. I hear I have the perfect spot for it.  I had a big long blog written in my head but this will have to do for now.  Can't keep my eyes open.

Be well!  Is it still summer out there?

Love,

Rhonda Kay

PS. ALLLLLL the cards and packages that I receive daily TOTALLY make my days.  It's like getting mail in college, only better. Thank you!!!

Day +3

It was quite the birthday party up in 1668!!!

My life is in my hands... Powerful pic...😍

 Hard to believe I've been here 11 days already.  I can't necessarily say "time flys when you're having fun..." but I am finding ways to make the days pass by - mainly with naps, books and Cubs games.   Of course, my husband brought the Roku so I have a lot of movies and shows at my fingertips, but he certainly uses that more than I since I'm not a big TV watcher.  Keeps him entertained because I still don't seem to be doing any circus acts these days. 😜

Last Friday, August 4th, was my re-birthday.  The day I was transplanted with 8 million of my brothers stem cells.  It was quite the ordeal, while still being very anti-climatic at the same time.  A cooler was rolled in where they were frozen to nearly -200*F.  Brrr. A lengthy identification verification, followed by the most moving blessing before they were thawed at my bedside and placed up on Ivy.  I had a pre-transplant medication regimen that included fluids and Benadryl to prevent any reaction to the cells.  Followed by a few days of smelling like creamed corn... you read that correct.  Creamed corn.  The preservative the cells are placed in omit a creamed corn scent as I breathe, sweat, and pee it out.  Lovely.

Cooler of stem cells, anyone?!

Ringmaster of the Shit Show 💪

Strong for them 💓

My Donor, My brother 💙

Bag of life...

My brudders!  Love them!💙

Watching mommy's special blood trickle in. 

My babies holding my hand.  Can you even???💕

Today is day+3.  I''m like a 3 day old baby in terms of my immune system, blood cells, stem cells and sleeping habits - haha!  The goal is for white blood cells, red blood cells, and neutrophils to reach 0.1 - "bottomed out". They remain here for hopefully no more than 2 weeks where they *SHOULD AND HOPEFULLY* start rising indicating ENGRAFTMENT!!!   I'm about 2-4  days from bottoming out.

***The next 30 days are critical.  Many prayers please. We are praying these cells are finding their way into the bone marrow and starting the blood building process... 🙏🏻🙏🏻***

Overall, I'm exhausted... but, "ok"... so far.  I can certainly tell I'm being drained because today I set myself a goal of 10 laps around the floor and had to quit at 5 and 8 (I try to walk 3 times a day).  19 laps = 1 mile.  Last week I was walking 1 mile PER WALK.  Today I'm hoping 19 for the day. 6 more laps to meet today's goal.  Little soap box story... met another woman walking the halls today. Significantly older than I. She is day +5.  Really in "the thick of it" as everyone calls it.  Here I'm bummed about having to quit 2 laps early and she's praising me and telling me "I can't wait to get to walking your speed and distance again soon."  One man's disappointment is another man's goal.

I'm off to knock out those last 6 laps and snuggle into my famous body pillow for the night.  Between my view and my body pillow I could be charging admission and rental fees to foot this tab I'm racking up. LOL! 😭😭

Be well, friends.

Love,

Rhonda Kay
xoxo

Chocolate shake? Yes please!

Day -3

Friday, July 28, 2017. My alarm sounded at 4am.  It was time to head down to Northwestern  Medicine for a stem cell transplant.  My (our) exit was brutal.  Blake slept through my sobbing goodbye and Kendall woke up. "I want you to stay home, mommy!  I'm going to miss you so much, mommy."  Seriously. Just rip my heart out, stomp on it, and throw it to the birds. I silently begged God for strength and courage while she wrapped her arms and legs around me... locked up the tears and reassured her I'd be back in no time.  Uffda. That was hard to write out and re-live again. 

Traffic worked in our favor and we found ourselves an hour early.  Mom and Dad grabbed a coffee on the concourse and asked if we were ready to head up  "Hell no. I'm good. I'll sit right here on this main level as close to the outside air as I can."  

Time to "install" my triple luman vascular catheter.  Yes, I was quizzed on that.  Twilight sedation in which I was told most people just slept through.  Not me! Haha! I was awake, asking questions and just felt very intoxicated.  Dr kept asking me if I was going to just hang out with her the whole time?  You bet!  Someone has to make sure she's doing it right 😜😜. An hour in recovery and supposedly I kept asking Jason what time it was... clearly, I had somewhere to be.  Anywhere but here. 

As of this afternoon, I completed my 4 days of chemotherapy.  Two types.  One for one hour.  The other for 3 hours.  All my counts are dropping (which is the goal).  I am beyond tired and for the first time in my almost 22 months since diagnosis, I have no appetite.  Everything looks, smells and tastes like metal.  Lame.  Tomorrow (Wednesday) and Thursday are called "rest days" while the chemo continues to wipe the slate clean.  We want as little of my cells and shit shows present before infusing me with Greg's cells.  Friday is the big day.

I'm not sure who the anonymous donor is... But, thank you for the penthouse suite!  I'm not kidding.  Top floor, corner room with a multi-million dollar view.  Beautiful, blue Lake Michigan, Navy Pier, Michigan Ave, and Water Tower Place.  This morning I was entertained by some window washers making their way down the Hancock building.  I was trying to decide who had it worse at that moment... dangling 60 stories high cleaning windows, or being hooked up to chemo... the jury is still out on that one.

Literally everyone who comes into my room comments on my view.  It surely doesn't make me want to stay, but, I am finding the silver lining as I lay in my bed and watch the sunrise every morning.  So peaceful.

Ivy... get it?! 😜

It's just Ivy and me tonight.  Have I introduced you?  She's rather annoying in that she follows me to the bathroom, walking my laps, even into the shower.  Seriously, get a life.  I have toddlers at home who do the same but at least they're cute!!!

Their visit made my day 💓

My "dining on call" just arrived.  Let's see if I can choke down this chicken noodle soup.  Step outside for me and breathe in a big, deep breath of fresh air.  Send those prayers up!

Be well,

Love,

Rhonda Kay
XOXO