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

It's Go Time...

Well, here we are.  This is just all SO surreal.  Who wakes up and says they're going to be admitted tomorrow for a stem cell transplant?!  Several times a day I get asked, "how are you?" Or "How are you feeling?"  I'm fricken great!  I feel normal.  I'm good!  I certainly don't feel like 85% of my blood and bone marrow is diseased... I am very sick...  these horrific diseases are so silent.

So many have asked how they will be updated with my shit show ass kicking... Right here on this blog, friends.  I have every intention of letting you ride this out with me.  We've come this far, right?!   If I'm not feeling up to it, Jason or my Mom and Dad will step in. We will treat it like a CaringBridge site.  Feel free to add your email directly under "The Dixon Family Blog" header.  You must be on a computer or "view in web version" from a phone to see that.  You will be notified when a new post posts.

I've been keeping myself more than busy.  I've had to. Otherwise, my mind wanders and that's when I get scared, angry, anxious, doubtful, or just down right pissed off.  There's been a few instances where I've had some alone time.  That's when the brave face comes off and I lose it.  But, a good cry every now and then feels so good too.  Two weekends ago I found myself kid and husband free Sunday morning.  I started my day off at church and did really well up until the communion song... How Great Thou Art.  Uffda. Cue the water works. Beautiful hymn.  Luckily, two of my high school teachers caught me walking out, offered a few hugs, chit chatted and got me laughing again.  I went straight over to Starbucks and grabbed myself a Venti soy chai and lemon loaf.  Lemon loaf = Rhonda's weakness.

Soaking up every ray of summer sunshine and breathing in that hot, humid, summer air has been a priority since I'll be watching the end of summer go by from a hospital room.  Lame.  We've crammed a lot into the last few weeks: A night away in Galena, Cubs game, pool parties, strolling Lake Geneva after a delicious Bloody Mary, Country Donut dates, play dates, mowing the lawn, comedy show, favorite restaurants and obviously spending every possible minute with my babies.

Last Friday we had the dreaded talk with Blake (5) and Kendall (3).  It went better than anticipated.  Kendall led the conversation with her 693 questions.  Blake was quiet and took it all in, but, has since asked several questions and talks freely about it.  They saw pictures of Uncle Greggie hooked up to a big machine and know some special blood was collected in a bag.  And mommy will take some very special medicine to make all of her blood go away in the garbage and then get that new special blood put back in me!  Kids are not ignorant.  We were amazed at the questions coming from the 3 year old.

This stuff is so hard. Every aspect of it.  Jason and I have learned we have more than a village behind us.  We have an army.  If we took everyone who's offered to help up on their offer, we would have childcare, meals, lawn service, cleaning service and who knows what else for a year.  It's overwhelming at times and hard to ask for help.  But, when people just step up and do it, it's a huge weight lifted. So, thank you. Seriously. Thank you!

I'm so lucky to be able to be home with my babies everyday, but, I'm being forced to take my mom hat off for a bit. Now THAT is hard!!  I'm not good at taking a backseat, right Jase?! Lol!  I know everyone and everything is going to be well taken care of thanks to my lengthy notes and detailed calendar. 😜 The hundreds of errands have been run and now it's time to focus on me. Get in. Get out. And get on with life.

Well, what do ya say?!   Let's do this.  I've got a goal here... a realistic one at that!  A lot will happen between now and then... but, September 4th I will turn 36 and damnit!!!!!! *slams hand on the table* I WILL BE HOME BY THEN!!!!!  Send those prayers up!  I've got some ass kicking to do!

Be well.

Love,

Rhonda Kay
xoxo

The Selfless Act of a Brother

I'm sitting here across the room from my brother who so graciously agreed to donate his stem cells to me.  Everyone here in the room is probably thinking I have my head buried in Facebook - lol!  But, here I sit hammering out this blog post.  He had a port "installed" this morning and is now hooked up to a harvest machine. His blood comes out one tube, into a cylinder in the machine, stem cells are separated out, the blood bypasses that cylinder and circulates back in him. When the cylinder is full of stem cells it pauses the process and sucks it up into the bag that will be placed up on my IV pole in two weeks and trickled down into me. I mean, seriously... Amazing.

This whole process went on for 7 hours.  While he didn't have much pain (so he says) during the actual harvest, the injections made him sore, achy, and  gave him an intense headache. All "good" things. It means they were working.  They were boosting his stem cell production in the bone marrow so much that the bones "expanded" and the stem cells were forced out into the blood stream, hence why he was able to harvest intravenously.

He was asked to come down a couple weeks ago for a day of extensive testing and meetings about the whole process of being a donor. 16 vials of blood, chest x-ray, EKG and a few consultations later he got the go ahead to get the harvest scheduled.

While he was chained to that less than comfortable chair for all of this, I had to pop in and out for a couple appointments for the last of my prep work. And yes, that included another bone marrow biopsy.  Let's just say it was rough. I'm not going to dwell on it... but, I will say this is the first one I've cried through, the first one I've demanded someone new step up to that drill, and the first time I've ever had to express how I never want to see that driller Dr. again.  Jason, shhhh... please don't tell anyone my sailor mouth came out... When the lab tech asked me for a finger after the chaos concluded for my finger prick, you better believe I handed over the middle finger.  Can we all please pray my next biopsy in 100 days is my LAST?!?! FOREVER!!!!

We just got word about the final count of stem cells that were harvested.  The goal was 10-12 million and Greg's came in just under 15 million!!!  It took a full day to collect those cells... and will just take a short 15 minutes to transplant them into me...  I really wanted to celebrate with a cart wheel round off back flip but I'm a little sore.  So a loud cheer had to do.

How do you even thank someone for this selfless gift of life?  Because that's exactly what it is.  Without these new stem cells these awful, horrific, silent diseases that are running through me will take over.  "Thank You" just doesn't seem adequate.  I mean, I understand I didn't even really give him an option, but... haha!  No, seriously.  The time off of work, the shots, the hoops, the actual harvest.  Greg, you will never know what this means to me.  This is what family is all about and how lucky am I to call my clan mine.  During my phone call to my brothers telling them they will be tested to see if they're a match, they both absolutely, positively agreed without a doubt.  "Whatever it's going to take."  Love you big, brother!!!!!  I apologize for all those times I was that little sister and caused you shenanigans.  Here I am, still causing shenanigans!

He doesn't know this yet, but, I will be asking him to be a guest blogger and write about his whole experience.  I'm going to give him a while to bounce back and let his blood and stem cells return to their assigned seats first.  I just want everyone to hear from personal experience.

If you are not yet registered to be a hero, please click HERE!!!  It's literally a 30 second cheek swab.  So simple.  And SO priceless.

T - 7 days until I'm admitted for my 4-6 week all inclusive stay.  Week 1 is chemo and conditioning.  Week 2 is transplant.  Week 3 - FOREVER is living my new life SHIT SHOW FREE!!!!!

Be well.  Please pray.  Send your positive ju-ju.  Cross your fingers and toes.  The beginning of this journey is off to a fabulous start.

Love,

Rhonda Kay
xoxo

Patient. Donor. 💓

If only I had the patent on this machine...

Sleeping on the job 😉

15 Million Stem Cells

All DONE!

Core Bone of my Bone Marrow 😜

WE HAVE A DONOR!!

It's true.  Our first ginormous prayer has been answered.  A perfect match.  And he's a sibling...

It was Blake's 5th birthday and he chose pizza for dinner.  I left for the 30 second drive to pick it up and I wasn't even to the end of my street when my phone rang.  The transplant team was calling.  Really?  At 6:30 on a Tuesday evening?  I always seem to get these phone calls when I'm out doing something...

"Hi Rhonda, it's Lucy.  I'm calling in regards to the donor search.  Jerry is a 4/6 match which, while not a perfect match, is still good.  But, Greg is a 6/6 match!  We have found a perfect match for you!!  And it's a sibling match!  That's SO amazing!!!"  I burst into tears.  She let me have a few minutes and pull myself together.  "I hope these are happy tears!!"  "Yes, they are.  But this also means shit just got VERY REAL."  "Yes.  Yes it did."

I was in Rosati's parking lot for 15 minutes by the time we finished chatting.  We hung up, I got out of the car, looked up to the clear blue sky, pointed and said "THANK YOU!!!!!!!"

I later called both brothers, my mom and dad, and obviously told Jason when I got home.  Jason goes, "So did Greg say yes?"  ummmmmmmmm.... "I guess I didn't ask! I told him!  And I assumed!"  hahaha!!

Things are very expedited.  With a perfect match found, we can now proceed.  I will be having a stem cell transplant within the next month.  I have been put in contact with some people who have gone through this process.  One woman was a fresh 60 days out when I phoned her... and I interrupted her having a glass of wine on her deck.  LOL!  Another woman is 7 years out.  One gentleman a year out.  A woman I chatted with a few hours ago is 5 years out.  All have one underlying message - stay positive and keep the faith.  Something I like to believe I'm doing great at so far.  At this point, I'm done reaching out.  Done talking about it.  Done thinking about it.  Done.  It's time to write my own story.

I can't even tell you how many people have tagged me in posts, texted me, phoned me, messaged me, emailed me... stating they have registered to become a donor.  I have lost count.  You have no idea what that means to me.  To think someone I encouraged to sign up could potentially get a call someday to give someone a second chance at life.  THAT is amazing.  And I thank you.

In case you need the link to register, click HERE!

The donor (😉) will be starting his process next week.  I will be scheduled for several tests, including a bone marrow biopsy (lame) very soon.  Then a date in which I will be admitted will be set.  I am told to expect to be in the hospital for 4-6 weeks.  This is going to take a village.  Your continued prayers, positive juju, thoughts, whatever, is so appreciated.  Now is when the real fighting happens.  And I am more than ready to KICK THESE SHIT SHOWS!!!!!!!!!!

My Dad hilariously stated "When you start enjoying Captain and Coke's, we'll know it worked."  Greg, here's to a lifetime of Captain and Coke's on me!  It's the least I can do.

Be well.  Enjoy this holiday weekend!

Rhonda Kay
xoxo

We Have A Plan...

I've fired up the laptop a few times before now to write this post.  Stared at the blank white typing space and closed it back up.  I guess I wasn't sure how to approach this one...

I'm still not sure how to approach this one...

There's no sugar coating it.  There's no beating around the bush.  There usually isn't when it comes to me anyways.  I'm a straight shooter.  So here goes...

I will be having a stem cell transplant.

Last week we learned that I do not, in fact, just have CML.  In addition to CML which has mutated and decided to be extra lame, I also have MDS which stands for More Dumb Shitshow (smile. laugh. it's okay).  MDS = Myelodysplastic Syndrome = blood forming cells in the bone marrow are damaged and are often responsible for low blood counts.  Can be a "watch and monitor" thing or can escalate and turn into Acute Myeloid Leukemia.  I have two shit shows.  Double lame.

Right now the MDS is in the "watch and monitor" stage but there's really no question as to what the "plan" we've been waiting on has come to.  So here we are.  The whole transplant process has been expedited as we don't want to risk anything turning into anything else and giving me another hurdle to jump.

Bring it on.  The sooner we get on this, the sooner I can begin to engraft, begin to bounce back, begin to heal, begin my new life free of cancer.  These oral chemos I've been on for 20 months are treatments.  A stem cell transplant is a potential cure.  And because those words were muttered to me I am at total peace with this.  I have to be.  It took a week of major freaking out, reaching out to a stem cell transplant support group on Facebook, talking with a few respected, qualified individuals, and lots of prayers.  But, I got there.

And I need you to get there too.  I will have no part of poor me why me pity parties.  Positive energy ONLY!!!  Am I scared?  Obviously!   Cancer, leukemia, MDS, chemotherapy, stem cell transplant...  them are fightin' words.  They are big, scary, intimidating words.

I highly encourage y'all to educate yourselves on the process if you so desire.  The whole process totally blows my mind.  Here's a quick run down: be matched to a donor, donor does conditioning injections to boost their stem cell production, stem cells are harvested out intravenously and collected in a bag.  I will be admitted into hospital, 5-7 days of traditional high dose chemo, transplant day (day 0) stem cells injected into me.  The actual transplant itself is anti-climatic.  Then it's recovery.  The first 100 days are crucial.  The first year is full of caution and one day at a time.  Boy, did I just make that sound easy or what?!

This is the stuff you read about it.  The stuff where you hear of somebody that knows somebody.  The stuff you never think will happen to you.  Well, congrats!  You all are now that "somebody."  And I am that "you".

All those times I've posted and shared about becoming a donor.  Just a simple swab of your cheek can be someone's lifeline.  I hope I have now convinced you to request a kit.  You could be my lifesaver.   Simply click HERE if you so wish to get on the registry. I thank you in advance. Truly.

I've never shared this before but I have a distant cousin, who's much younger, who I've never even met.  We were diagnosed with two different leukemia's on the same day.  I can't wait to meet this sweet 8 year old someday.  Little does he know, he's my hero!  He, himself, had a stem cell transplant earlier this year.  What a warrior.

So where do we stand???  I am being closely monitored through blood work and weekly EKG's as I did change oral chemo meds to fight off the mutated CML while we wait for a donor.  That's mainly what's happening right now.  The search for a donor is on and expedited.  My parents and brothers are being tested this week.  If not matched they move on to the registry.  That's right!  Jerry has to get poked!!! BAHAHAHAHA!!!!!!!  He asked if he could be put under for it.  BAHAHAHAHA!!!!!!!  If only Greg could do his poke!!!!  Now THAT would be a fun blog post to write about.  But, seriously, thank you brothers.  Love ya dearly and here's to hoping we share the same DNA!  Cheers!

Life goes on.  I'm just carrying on with my life and trying to keep things calm and normal until the show begins.  My motto is usually "go big or go home" but, I certainly didn't mean for that to happen for this shit show.  That's for sure.  Time to put the dukes up and BEAT THIS CRAP!!!

Thanks for praying and the positive energy.

Be well,

Rhonda Kay
XOXO

One. Day. At. A. Time.

First, let me start out by taking a few deep breaths.  Thanks.  I needed that after holding it for the last 6 weeks.

My alarm woke me at 4AM for my initial appointment at Northwestern.  I was at the point of my cancer journey where a second opinion was weighing heavily on my mind.  I was 18 months post diagnosis.  After being SO close to the R word things started heading the wrong direction.  Gene study (percent of leukemia cells in my blood) after gene study was indicating my disease was growing.  Blood levels continued to stay bottomed out.  The chemo I was on wasn't allowing good new blood cells to grow and now not keeping leukemia under control either.  A chemo switch occurred and the gene study sky rocketed.  *Rhonda goes into mass panic*  I reached out to the National CML Society and asked for a CML specialist recommendation.  They immediately responded and I ran with it.  There I sat.  In a new hospital.  My Dad and Jason by my side (for every single appointment).  My mom with Blake and Kendall (for every single appointment).  

We answered so many questions.  Walked them through every stepping stone since October 14, 2015.  Throwing out dates, dosage amounts, medication changes, ER visits, sicknesses, what brought us to them, etc.  Dr. Altman wanted and needed her own baseline of things.  She ordered SO many blood tests and, as I expected, her own bone marrow biopsy.  My 4th.  The way the gene study was rising so rapidly, she was concerned that my disease developed a mutation in which the oral chemos are resistant to... leaving me with two options to treat my disease:  one oral chemo (that comes with severe cardiovascular risks... so much that it was taken off the market per FDA, slapped with the black warning label and put back out) option or stem cell transplant.

She spent a little over an hour and a half with us.  I liked her.  While very matter of fact, she was thorough.  In that first appointment she saw me laugh, cry, get scared, get mad...  She kept saying she needed to piece together some missing info and come up with a plan.  I offered her my backside and said "get drilling."  Unfortunately, they were unable to do the biopsy that day.  I was to return in a week to have that procedure.  Now I had a week to think about it and dread it.  Lame.  I will admit it was the easiest one yet.  I fully know what to expect and what to do.  Jason offered me his phone so I could listen to music.  I chose Joe Nichols, of course...  I found myself skipping song after song because, well, Joe is just not bone marrow biopsy material!!!  Hahahaha!!!!  Instead, I found a good drinking song about rum and cranked it.

Dr: "OK, Rhonda.  I'm done with the aspiration.  Go ahead and flip over and lay there for a few minutes to apply pressure to the site.  Do you want to see your core?"
Me: "Core?  As in the needle???  HELL NO!!!"
Doc: "No, the core bone of the bone marrow!"
Me: "Bone??"
Doc: "Yes, the bone.  We take the marrow of the bone and break off a sample of the bone for the biopsy.  Are you sure this is your 4th procedure?"
Folks, I had no idea they break off bone!  No wonder I waddle around for 2 weeks.

They wanted same day blood work to accompany the biopsy.  So, after a brief rest when the procedure concluded,  I sloooowwwly walked to the lab.  My name was called and I followed in after a woman walking slowly with a walker - just my pace.  Her jacket fell off her walker and I just stared at it.  She looked at me like, "are you going to pick up my jacket for me, lady??"  Like hell I was bending over fresh out of a biopsy.  I quickly called for a nurse and asked her to grab the jacket for the both of us.  LOL!  Never judge a book by its cover.  I'd bend over and pick up your jacket any day.  Just not that day.

Results from Northwestern's initial blood work and gene study showed, yet again, another huge increase.  It would be two weeks until I learned the results from the mutation analysis.

Time.  So much time.  3-5 days for these results.  A week for those results.  Two weeks for these results.  2 months to see how a new medication responds.  Years for clinical trials to learn new treatments.  Nothings fast.  And yet, the years fly by.  It goes so fast.  Hurry up and wait.  The waiting is the worst part.  I take one day at a time.  It's literally all I can do some days.  The unknown can make you crawl in a hole.  I get many, many compliments on my strength and determination, but, I will be honest, some days I can't shake the blues and I feel like all I do is cry.  It rarely lasts into a second day because I'll wake up and get real with myself.  "SNAP OUT OF IT, GILLUND!!!"  Those are the days I take a long, hot shower, do my hair, throw some makeup on, make myself presentable and look the world in the face.  The second I fold, this crap wins.  And that ain't happenin'.

5 days before my next appointment, my phone rang and it was the Chicago number I have now come to lose my stomach when it shows up.  It was Northwestern.  "Hi Rhonda, this is so and so from Dr. Adekola's office calling to set up a stem cell transplant consultation appointment."  Who's Dr Adekola?  What? Huh?  Why?  Is this the route we're going?  Do we have results back that are leading to this?  This poor woman was just a scheduler.  An admin.  And here I freaked out on her.  I scheduled my appointment with this Dr I've never heard of and asked to have Dr. Altman call me right away.  I deflated. Shit all of a sudden got real.  Jason got home 9 hours after this phone call after being gone all week for work.  I didn't even have it in me to tell him until very late that night.  Even after we got the kids to sleep and we hung out for a bit watching Friday night television.  That day was probably my darkest day through this journey.  

Although it wasn't right away, Dr. Altman finally returned my call the next day on Saturday.  She reassured me this was strictly a consultation appointment.  To get the process started if this should be the route we were heading for as it can take several months to prepare for transplant.  Although I appreciated the communication, it didn't ease the nerves. 

Two weeks passed by and I found myself setting my alarm again for 4AM.  Brutal.  I don't do that hour.  The 60 mile trek into beautiful downtown Chicago went on without one traffic hangup.  Miracle.  We would be learning so much at this appointment.  I got poked as I always do before seeing the doc.  I was called back and we were quickly told the mutation analysis report was not back yet.  Lame.  However, she did proceed to tell me the gene study taken from the bone marrow came back at 8%. We all just kind of looked at each other wondering if we were all hearing the same thing.  This was a significant decrease of what we learned just 3 weeks prior.  The doctor shrugged her shoulders and said there's a possibility I am suddenly responding to new medication...

She wanted to now do a gene study from the blood (again) to back up the marrow findings and confirm the positive news.
"Do you mind getting stuck one more time today?"
"No, Doc.  You are searching for answers to this shit show so I'll do whatever you need."
"Shit show?  Like we are the shit show?  Like the poop emoji?" *gesturing to her nurse practitioner, herself and NW in general*
"No, CML is my shit show and you are officially on my shit show team now.  Congratulations! You made it."
We all laughed after that.  Gotta laugh to keep from cryin'.

 I am on a low dose of my meds so she upped my dosage to optimum dosage in which I will start tomorrow.  Back to the lab to get poked again.  Sure, just go in the same arm.  Why not?  I hesitate on offering my right arm these days... they seem to struggle... and even after alllll these blood work pokes when you stick me and have to dig around to "get it started"... oh, hell no.  Just NO.  Jerry?  You OK?  You all know by now I have to give him crap...  hahaha!!!

Back to the waiting area to wait for the stem cell transplant consultation appointment.  We discussed the steps leading up to finding a match.  Extensive family history questions.  My brothers will be tested and if not matched they will go the bone marrow donor registry.  We then were explained the actual procedure itself and post transplant expectations.  We shook hands with this new team of brains and politely stated we hope to never see them again.

Is it lunchtime yet?  Nope.  Off to a different branch of hospital for an EKG (need these regularly thanks to the chemo pills).  Finally, 6 hours later we leave.  I have yet to take advantage of being a block of the magnificent mile.  Couldn't care less, really.  Get me out of the city and back to my sticks.

Fast forward two days.  It's Friday evening.  Friday going into a holiday weekend.  Hanging out in the living room with my clan.  Building Legos with my Blake, changing Kendall's bitty baby outfit for the 84th time, and Jason dozing off on the couch.  My phone dings the email ding.  This happens 100 times a day thanks to so much junk mail,  but, I just happen to pick it up and look.  It's an email from Dr. Altman and another one from her nurse practitioner...  I open it to read the results of the blood work gene study taken just two days ago.  Down to 2.6%.  I quickly wake Jason to have him read it.  He sits up, looks at me with this big smile and I just sat and cried.  Then cried some more.  Sweet Kendall came running over with a Kleenex and wiped away my tears.  "Are you sad, mommy?"  "No sweet girl, these are happy tears!"  Our prayers are being heard.  I'm all of a sudden responding to the meds?!?!  Talk about something that makes you hit your knees and praise the good Lord. I can't even describe the relief.

I still wouldn't learn the mutation analysis results until next week.

*Rhonda steps up on her soap box*

In the beginning of this nightmare I was told several times "If you had to get cancer this is the one to get."  Blah, Blah Blah.  Please.  Do me a favor and don't ever let those words come out of your mouth.  Do that newly diagnosed patient a favor as well.  NO CANCER IS THE RIGHT ONE TO GET.  Period.

This cancer that's "the right one to get"...  the one "I'm so lucky to get"... the one "you'll just have to take an oral chemo pill for the rest of your life and you'll live a full life" can mutate at any moment.  Can grow resistant to these few oral chemo pills options.  Leaving you with just one option.  And even that option isn't a guarantee.  Scary stuff.  And this is just ONE type of ONE type of the millions of cancers out there.

I'm not sure if y'all know this but my oldest brother fought and killed melanoma 13 years ago.  My parents are going through this cancer shit show stuff with their second child.  Now THAT is a load of crap.

And please.  Just please.  Stop with the "he/she has lost her battle with cancer"  I can't even deal with that especially when I read it in professional publications.  That's some of the worst journalism right there. Awful. If you ask me, the cancer lost.  It's dead.  No longer spreading. No longer causing pain.  I won't get churchy here but that person that passed on is a hero.  The fight, the emotions, the pain they endured...  A hero.  The last thing they did was LOSE that battle.

*Thank You*

Then there's this evening.  Just 3 hours ago.  I laced up Blake's cleats for his first t-ball practice.  I'm not sure who was more excited!  While t-ball can be equivalent to watching paint dry, I was super excited for him to start this journey.  The journey of sports.  And then my phone rang.  That Chicago number showed up.  Really!? Of course you'd be calling me with mutation analysis results in the middle of t-ball practice.  Dr. Altman informed me that I, indeed, show positive for a specific mutation...  the mutation that the chemo I'm currently on should be resistant to and not respond to.  While just 4 days ago I learned it drastically dropped the leukemia cells in my blood and we were rejoicing...

Once again, I was told I'm going against all normalities in treating this disease.  And, now, this CML specialist, my second opinion, is scratching her head.  

Say it with me - - - "SHIT SHOW" - - - 

When I sat down to write this blog 5 days ago I actually went back to very beginning and read every single entry.  Back to when I announced our first pregnancy.  Back to when all I did was write about our children.  When life seemed so simple...  Now here I am, keeping my friends and family in the loop of this stupid cancer story.  Lame. 

In the meanwhile, I was told to sit tight for a few days.  She was going reach out to Mr. CML in Seattle, reach out to another Mr. CML (I forgot where out of) and discuss me with her Northwestern colleagues.  All of these peeps need to collaborate and come up with a plan of treatment.  I thought we were able to breathe easy here for a bit after Friday's news, but, here we are again holding our breath.  I am keeping the faith and asking for your prayers.  

As always, thanks for reading and bearing with me on this one.  Had a lot on my mind and as soon as I hit publish I'll remember 27 things I wanted to mention.  Until next time.  

Be well, 

Rhonda Kay 
XOXO