The Results Are In...

Cancer free!!!

   DAY 100!!!!!  AND I AM CANCER FREE!!!!!

Santa came early this year.  My birthday wish a year ago was finally granted. NO present will ever top this.  🙏🙏🙏

How ‘bout it?!?!?!  The words I’ve been waiting to hear for over 2 years were finally spoken.  We cried, we cheered, we looked at each other like, "Did we just hear what we think we heard?"  No sign of Chronic Myeloid Leukemia (CML).  No sign of Myelodysplastic Syndrome (MDS).  No sign of the deletion of chromosome 7 (high risk Acute Myeloid Leukemia).  Congratulations, Northwestern Medicine!  Your first patient with CML and MDS (ever) - is in REMISSION.

And to you cancer... *refrains self from using the sailor mouth I'd really like to use* But...
YOU CAN FINALLY KISS MY A$$!!!!!  You messed with the wrong girl... the wrong family (again)... and you can pack sand.  ✌

I do have a little confession... We learned these results two weeks ago...  Why wasn't I screaming it from the rooftops?  What took me until now to finally announce it to my army?  Well, in true Rhonda fashion there's a "But..."  And I am HATING that "But..."  You see, throughout this journey, over 2 years now, I've heard several times how I "go against the norm in treating this disease." How "I'm special."  How "I'm keeping everyone on their toes." So LAME. 🙄 So here's the "But...":

Yes, I am cancer free, BUT, I am NOT 100% donor cells yet and Dr won't settle for anything less.  We are working on that part now.  My anti rejection medication has been significantly reduced to the point I'm basically off it.  The more that's reduced, the more he's setting those donor stem cells loose.  And the more he does that, the more graft vs host disease will present itself. Graft vs host is Rhonda cells fighting donor cells.  Sibling rivalry! 😜 So it's a fine line of keeping tabs on all aspects.  We have a plan if I should need help getting to 100% Greg's male cells, but, by the grace of God they will quit putzing around and FINISH THE JOB!

When bloodwork shows better results of the XY (male vs. female study) I have requested another bone marrow biopsy... and Dr did not argue with that.  I, and he, need peace of mind that the blood test and bone marrow test are on the same page and we can get on with our lives.  One more drilling in me!  No prob! 😜

So over these jerks. 

I battle nausea, stomach issues and now some female issues - all graft vs host. Minor prices to pay to be cancer free.  These too shall pass.  Could be worse.

Core bone of the marrow! Looks healthy to me! 

Bone marrow aspiration

Just another appointment... LOL!

I wasn't out of the hospital maybe a week when a friend on Facebook posted about her dear friend who had just passed on.  The woman's picture punched me in the gut...  Here it was framed out in an orange ribbon and said something along the lines of "Leukemia Warrior".  After a little digging, I learned this sweet angel was my age, had two babies the same ages as mine, was going through a stem cell transplant - admitted just 3 weeks ahead of me, same hospital, same doctor, even a similar lake view out her window.  We may have even passed each other in the hallway walking laps.  Complications from the transplant her body just couldn't overcome... I haven't spoken about this to anyone except for reaching out to my Facebook friend and passing on my condolences. It absolutely broke. my. heart.  And not a day goes by where I don't say a prayer for her and her family.  Just when you think you can't hate cancer anymore...

I warned you!  All the feels!

Blake and Kendall were so excited for today!  They know exactly what that huge 100 on the calendar means.  "Mommy got new blood 100 days ago!!"  While this is such a HUGE, critical milestone in the stem cell journey, I will be proceeding cautiously.  I am, in no way, jeopardizing anything.  The next big milestone is 6 months.  Baby steps!!!

Happy Fall Y'all!

So much to celebrate this birthday, Kendall Kay!

Let's see if I can bring a little giggle to you all today...  I got both kids off to school one day and ran out to run a couple kid free errands. 🙌  Mom's, can you feel me here?! Haha! I feel like I was barely even back to driving myself around!  I am driving through this dinky little village - like a mile stretch, maybe, where you don't go 1 over, hands at 10 and 2, look straight ahead and don't even breathe. McCullom Lake for all my local friends... 😉  My phone rings, I reach up and answer it on my dash magnet like a dufus.  Totally forgetting I have to answer on my bluetooth unit.  I GRAB MY PHONE to switch it to Bluetooth and BAM!  Lights and sirens in my rearview mirror.  Son. Of. A. @#$&*.  Officer comes up to my window, "Mam, you can not have your phone in you hand even if you are talking on speakerphone."  "I know that sir, I can't even make this up.  I answered my phone on the actual phone instead of the bluetooth and I was trying to switch it over..."  *silence* and he just stared at me for a few seconds.  I thought for sure he was going to send me on my way... "license and insurance, please." ughhhhh 😩  I unbuckled, "ACCIDENTALLY" SLIPPED MY HAT OFF and made the reach over.  BAHAHAHAHA!!!!! 😂😂😂 It's a long reach over there!  As I handed over my license and insurance, I looked him in the eye and said, "I swear that's me.  I got an unwanted haircut 2 months ago."  He walked away.  Man of so few words.  Not a minute later he came marching back up to me. Handed me my papers, "Figure out that bluetooth.  Oh, and best of luck as you keep fighting the good fight."  I said, "I don't care what anyone says about you!  You're a good guy."  Wished him a good day and went on my way.

Is that playing the "cancer card??"  If so, I apologize, kinda.  Actually, not at all.  I think I've played it one other time to get my husband to wear a shirt he wasn't a fan of and I loved.  That went something like this: "Jase, wear this shirt!?" "Hell no!" "But, I have cancer..." And he came walking out of the bedroom in that shirt.  LOL!  No pity parties or why me's.  But, I will play my "card" wisely. 😉 Maybe that line will accompany my next Corvette pic I text him.

So many daily reminders of where I've been, how far I've come and how far I still have to go.  My hair.  I miss it.  A lot.  These tubes hanging out of my chest.  The endless pills I swallow daily.  The many naps I still need to feel human the second half of the day.  The picking up that always needs to be done, but, sitting down is all I can do at that moment.  So far it's been worth it.  I mean, I'm cancer free.  No longer diseased.  I can't even use my sarcastic line of "I have a blood disorder" when I'm FREEZING all the time.

💗💗💗

When I look up from my computer screen and see Jason sitting on the floor with our sweet kids, coloring their hearts out, I thank my lucky stars.  For how blessed am I?  It's been a hell of a two years and we've learned so much.

I am SO beyond sick of the roller coaster ride, so I ask for your prayers for these stem cells to kill what's left of mine and TAKE OVER! They are almost there!!!  I NEED TO BE 100% MALE!!! 😜 It's ok, body!!!  You will eventually go back female!  This is not permanent!  hahaha I promise!

Be well!  Thanks for reading. Thanks for praying.  Thanks for always looking out.  Sorry for not sharing earlier.  I has hoping to have better test results by now to share.

Love,

Rhonda Kay

Felt Like Writing...

October, already. 2017 has been a total blur. 5 months ago today I walked into Northwestern Medicine as a new patient. I was seeking a second opinion. A fresh set of eyes and brains to hear my story, and make sure we were on the right path. I was hopeful I would be told to keep on, keepin' on and my mind would be put at peace. I was uneasy with my shit show not attaining "undetectable" status after 12 months... and then REALLY lost my mind when we hit the 18 month mark and things started going the wrong way.

It was only 12 short, crazy, emotional, whirlwind weeks from that initial appointment until the day I was admitted for a stem cell transplant.  I will never talk poorly of my oncologist of 18 months, nor his place of practice, BUT, I will say I have never looked back. I, especially, don't miss driving past the coffin and monument store just a few blocks from the hospital.  I mean, really?  In all fairness, transplant was on the back burner since January already. It took those fresh set of eyes to run their (what seemed like) hundreds of initial tests and discover the oral chemos I was blowing through would NEVER get me "undetectable" and my condition was way more serious than anyone ever thought. Talk about going with your gut.

I'll never forget the day I was told I was going to transplant.  June 2nd. (I'll never forgot many things!!). It was a glorious Friday.  Blake, Kendall, myself were out garage sale-ing with friends.  My phone rings, of course it's my new oncologist. "Rhonda, its Jessica" (love her use of first name basis. Not out to impress anyone) "do you have a couple minutes?"  I really wanted to say, "Nope! I'm out having fun! Call me with shit show crap Monday!"  But, I didn't.  "Yeah, sure. What's up."  My friend went on with all the kids so I could chat.

"The test results just keep rolling in and the most recent finding we've learned has us very concerned.  In fact, I've reached out to Mr. CML in Seattle already concerning you.  We have discovered in addition to your mutated CML you have Myelodysplastic Syndrome (MDS). More specifically, MDS Monosomy 7, or the deletion of chromosome 7, which puts you at very high risk for acute myeloid leukemia. Potentially, you could have to fight two leukemias."

Silence.

I could recall about 1% of this conversation later when telling Jason, but, knowing what I know now, I know exactly what she said to me that day.

"I would like to see you next Wednesday. We will talk about what all of this means. You tell me when you want to come in. I'll make myself available."
"No, you are going to tell me what all of this means right now."
"No, I would rather speak to you in person. Face to face."
"I will come in next Wednesday. BUT, I'm not hanging up without knowing what you have to say."
"You need a stem cell transplant. And you need it ASAP. As in the next 4-6 weeks. The transplant team has been informed and your case is expedited. We will talk specifics next week but the search for a donor is already in motion and the team will be calling to get your siblings info as we want to test them first."

She talked me off a cliff, we hung up and I caught up with the clan.  My friend offered her very level headed advice and we carried on with our day. I felt like I was moving in slow motion the rest of the day.  I had a major breakdown that evening telling Jason what I learned. I had an out of town aunt and uncle coming in for a visit the next day. Mom and dad were having everyone over to visit and hang out and I was really looking forward to that. (We don't get Minnesota visits too often... never really... 😜 Yeah I said it!!!) So I told Jason none of this would be discussed until next week. As far as everyone is concerned, things are good. I was so sick of talking, thinking and living this shit show. It consumed all of my life and it was bringing me down. So we lied through our teeth the rest of the weekend...

And here we are today, day+61.  My 2 month birthday.  Another uneventful doctors appointment this morning.  We discussed making some changes to some medications, specifically my anti-rejection.  Depending on what we learn after my bone marrow biopsy in two weeks (😧), he may start to wean me off it.  Kind of a scary thought, but, I'm sure he knows what he's doing.  I'd say, "kind of a scary thought, but he wears the white coat!... but, I can't because I've never seen him in his white coat!  Another one out to impress no one. Walks in with his jeans and button down.  The director of the stem cell program.  Love it.

I asked him today when I can catch a plane to Hawaii??  He laughed and said, "whenever he buys your ticket!" Pointing to Jason.  "If you wanted to go away for a short trip, say a week, I'd say in 2 months.  But, if you're talking a longer trip, two, three weeks, after the new year and I'd buy travelers insurance just to be safe."  Doc, a vacation for me is usually a week or shorter.  I'm not hopping planes to Africa for 3 weeks to photograph wildlife from my private safari... But, I digress! Hahahahaha!!!  In all seriousness, he, I'm sure, deserved that trip.  Could you imagine hopping patient to patient, day in, day out, shit show after shit show???  I see where going to stare at elephants and lions could be a perfect escape.

Sometimes I feel I deserve a white coat. 😜😜  I can talk a mean game of chronic myeloid leukemia (CML), myelodysplastic syndrome (MDS), chromosomes, genes, cells, complete blood count (CBC's), FISH studies, BCR-ABL results, etc.  Not bad for a marketing and journalism degree! 😉  But, trust me, I wish I couldn't.  I wish I was as oblivious to all of this as I was up until 11:45PM October 14, 2015 when this hellacious nightmare unfolded.

Anyone new to my story can read my first blog entry HERE.

In the wake of an awful, senseless tragedy this week, I will leave you on this note.  I was laying with Blake at bedtime when I thought he had fallen asleep. Out of no where I hear his little boy voice say, "Mommy, I prayed for you everyday you were in the hospital because I was scared." 💓 I locked it up and told him I prayed everyday I would get better so I could get back home in no time, just like I promised. Gosh, this stuff is so hard. But, just like one of my favorite little cheer up gifts says, "Let your faith be bigger than your fears."  And that we shall continue to do.

Be well!

Love,

Rhonda Kay

PS.  Biopsy in 2 weeks.  If the lucky driller Dr drills down 3 times, comes up with nothing each time, and in a panic says to the lab tech, "I can't get it! It's not working!" I promise y'all will get to hear my sailor mouth firsthand being screamed from downtown Chicago, because, no.  Just no.  😜  Keep your ears peeled.

From a Donor's Perspective...

You know that feeling... the feeling the morning after a night of excessive alcohol?  How you open one eye at a time to assess your situation, debate whether or not you have to throw the anchor to get the room to stop spinning?  Me neither. I was asking for a friend.  😂😂

This is similar to how I wake up every day, only I'm not tying one on every night.  I slowly open my eyes, assess my situation and thank God for another day.  Most of which have been smooth sailing.  I'm working through some stomach kinks and other minor bumps, but, overall, my Dr says I'm quite boring and he LOVES boring patients. Physically, I'm feeling good.  Numbers are reflecting that too. 🙏🏻

Get this... since my donor is male (my brother)... it's easy for them to test my DNA makeup right now.  Easy for them to count XX chromosomes vs XY chromosomes. See where I'm going with this?!  I am currently 92% male!  The goal is to become 100% male... This is where my poor husband had questions. Bahahahahaha!!!! 😂😂 (cracking myself up tonight)  No, for real. Get serious, Rhonda. 100% male would mean ALL of my disgusting, sick, lame, diseased, shit show cells are GONE and I am 100% donor engrafted cells. I will get there. 💪🏻  And lucky for Jason (me too for that matter), the human body is genius and I will somehow/someday turn back to female.  Incredible.

Oh, and remember all those gene studies (% percent of leukemia cells in my blood) my life revolved around since day 1? Initial testing came back NEGATIVE. 🙌🏻  I blew through 4 oral chemos and not one got me there.  Close! But, that's not good enough in the oncology world.  We are praying for my bone marrow biopsy to confirm this finding and also show no sign of MDS monosomy 7.  Next bone drilling in a month and I'm kinda sorta in a weird way looking forward to it.  It's my tell all.

I'll be vulnerable here. After all, this is not all sunshine and rainbows and I try to keep it very real.  Like I said, physically I'm feeling good. Mentally/emotionally? Eh. Could be better. Truth is, I HATE being bald, I'm so over these tubes hanging out of my chest, haven't worn a regular bra in 8 weeks, can't wear deodorant because of the chemo chemical burn in my armpits, my skin is so dry I have to lather up with Eucerine creme or Aquaphor leaving me to feel like a grease pit, a couple female issues I'll spare y'all the details, etc. You catch my drift. In the grand scheme of things, these are all minor issues to pay the price to hopefully becoming disease free. But, for now, just let me be salty.  The little things add up.

Our pediatrician came to visit me shortly after I got home.  My Earth angel.  The woman who took one look at me nearly 2 years ago and insisted I get blood work done that day.  Resulting in a late night phone call ordering me to get to the ER because they discovered I had leukemia.  We were sitting on the deck chit chatting and I just kinda laughed and said, "Look what you did!!!"  We thank God she did otherwise I would not be here today writing this post. 💗

But, ENOUGH ABOUT ME!!! 😜🙄

HAHAHA!!! 

Let's turn the spotlight over to my brother.  The one who harvested and donated 15 million of his stem cells because we happened to share the exact same DNA makeup, even down to the same blood type.  8 million of those precious cells are running rampad through my body. The other 7 million are still frozen in a freezer where, God willing, they will remain, not needing to be touched.  Here's to never needing them!  I asked him to write about his experience being a bone marrow/stem cell donor and here's what he had to say:

Loving his new shirt!! 😉

Holding my potential cure

15 million stem cells

Sibling bonding taken to a whole new level

Sleeping on the job 😜

***I will never be able to write like Rhonda so sorry in advance... J  When Rhonda called me that evening I was at the fire house for training. Phone rings, I look down and its Rhonda. Talk about a lump in my throat.  Rhonda rarely calls. Usually a text.. I get the "hello brother, whatcha doin". The beat around the bush conversation... "just at the station, same old stuff.." Well, I just talked to Lucy and I have some good news. You are my donor!!! You're a 6/6 match." I really didn't know what to say.. "Jerry is a 4/6 which is still good but your the 100% sibling, male match" Some other stuff was said and "the transplant team will be calling to move forward."  WOW!! Like Rhonda says, This shit just got real..

I go in for a day of tests with Mom and Dad by my side. Like Rhonda said prior, blood work, EKG's, X-rays, and consultations of the process and what to expect.. I like to think I am a little level headed from years on the fire department seeing bad things and good, but, man, this is for Rhonda.. I started to play the "what if" game in my head.  What if we go this far and they find something that doesn't allow me to help and I let everyone down... That was MY greatest fear!!!!

Everything else, like Jerry and I have said and been saying, "whatever it takes."

All was good with tests,  and we moved forward. 5 nights of shots. Ugh... Again, no problem with needles but a "self stick" was different.  "Simple, Greg," they said. "Pinch an inch and inject."  The inch, unfortunately, was not a problem ;)  Most were good, but there were 2 that almost brought me to the ground. I must have done them wrong.  Hahahaha!  I even offered Dad, Jason, Mary Jo and Rhonda to help on my last set but had no takers.  They had their chance!  Oh, well.  Thank goodness Jerry wasn't there, he probably would have thrown it like a dart :)

The best way to describe the feeling from the effects of the shots, is like they said. Super achy and a massive headache but knowing what it is for... all is good.

Yes, 7 hours in the not most comfortable of chairs. Tubes coming out of you, not being able to get up, use the washroom, nothing.  I made sure not to eat or drink much the whole time.  Dumb I know, but I did not want that hurdle to work through.  I was offered a Depends prior to starting... Hahaha NOPE!!!

The machine started, you feel nothing really.  It is not the quietest machine ever. You can tell when it is moving blood and when its moving stem cells (by the sound).  I said at one time to my posse (Rhonda, MJ, Jason, Dad), "Buckle your seat belts, we're taking off again!"  Like an engine revving up.  Trying to nap, watch TV, (OJ parole trial on every freaking channel except the weather channel).  But so glad I had everyone around me!!!! The staff comes in every 15-30 minutes.  Charting the numbers, saying how good it looks and saying how much more time. It kept moving out further and further.

Finally, the machine beeps and shuts down 7 hours later. The collection bag was pretty full and they start flushing and disconnecting.  It was too late in the evening to get it to the lab for a count. Which means inject yourself again and come back tomorrow.  Physically and mentally exhausted we go back to the hotel.  Inject, dinner and bed.  At 8:30 Dad and I go back in the morning for blood work so they can check if I am able to “go again” if needed. By 10:00 they come out and say, "Just under 15 million!! You blew the predictions out of the water!"  What a Relief!!!  Done!!! Rhonda will have at least double for what she will need!! Now lets take that line out of your chest…”

Like Rhonda has been saying, “It takes a village.”  From all of the prayers, the Dixon family meals program, watching Blake and Kendall, to being a donor… We are all doing what we can to make the Sh** shows go away!!!  I am thankful to be able to do this for her like anyone else would have done.***

September is National Blood Cancer Awareness Month.  Every 3 minutes someone is diagnosed with a blood cancer.  My story has inspired many people to register to become a bone marrow donor.  In fact, while I was in the hospital I learned my blog and my story was shared on all the organization's (DKMS.org - the one I refer you all to sign up to be a donor) social media outlets.  That brightened my day!!!  I am still so proud of that.  Once life settles back into some sort of normalcy, I hope I can be involved way more actively in this whole process.  

30 second cheek swab with a Q-tip.  That's it. Your 30 seconds could be the lifesaving action for someone needing a second chance at life!!  A potential CURE to their shit show.  Be a hero.  Click HERE!!!! to register!!!  And please (!!!), share away so people can hear a donor's perspective.  There are SO many people out there still waiting for their perfect match for days, months, and even years. 

For my new followers, my dad hilariously stated, "When you start enjoying Captain n' Cokes, we'll know it worked!"  I have yet to try a Captain 'n Coke, but, considering how things have been progressing after just 48 days, I'm scared to.  That bottle may not stand a chance. 

Send those prayers up.  I'm nearing the halfway mark of my first 100 day crucial period.  And for the love of all things Holy, stop the school germs!!!  I'm about to kick my kindergartner out of the house!!  Ain't nobody got time for this, and I certainly can't afford to catch his crap.  

Be well and get swabbed. 

Love,

Rhonda Kay 

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 😜