Day +229, BIG update, and a special little something.

Day +229

Well, friends?! I’ve got lots to tell you... AND I even have a special guest blog for you.  ❤️

This is how I left y’all 6 weeks ago: So here’s what’s going to happen... I go back next Friday, on my nieces 12th Birthday, by the way... 12!!! Ahhhhh! How is that possible when I’m only 24?!?!? 😩 I’ll make doc expedite that XY study.  4/5 days later we’ll learn it hit 100%. I’ll get my requested bone marrow biopsy to confirm all results.  Get these $!?&$ tubes out of my chest AND THEN WE’ll ALL MOVE ON WITH OUR LIFE.  Can I get an Amen?!?!


My niece, did indeed, turn 12. 😳 No, I am not 24. 😜  That XY study came back at a dinky 0.5 increase. But, hey, an increase is an increase. Now we’re at 99%.  Two weeks later I return and didn’t learn those results for SIXTEEN DAYS. I repeat... SIXTEEN DAYS. And wouldn’t you know the little bastards just HAD to get one last jab in and increased only another 0.5%. 99.5%. You can probably imagine I went in last Friday a little frustrated... I POLITELY FIRMLY asked if we could stay on top of the lab this time and EXPEDITE that test. They obliged. And last night I learned I FINALLY HIT 100%!!!!!!!! There are no more of Rhonda’s lame, shit show filled cells present in my blood. 🙌🏻🎉🤸‍♀️ *cue the cartwheel round-off back flip* I am officially Greg Gillund!!!! Mom and Dad, you always wanted 3 boys, right??? 😂😂

And yes, I got those $!?&$ tubes out of my chest. A whole blog post in itself - Hahahaha!! As they prepped me for the procedure - all formal down on the interventional radiology floor and all - “This is a simple procedure, Mrs. Dixon. 10-15 minutes. Sometimes 20. 1 little numbing shot and then I just need to wiggle it free from you and it slides out like butter.”  😳 Great. Get it out!!!! 5 numbing shots and 50 minutes later that son of a you know what came out, but, it sure didn’t slide out LIKE BUTTER. Of course not!  After my palms got blood flow back into them and I relaxed a little, I looked that surgeon in the eye and said “I tell you what, if I do end up needing a boost of stem cells they can shoot them up my a$$ before they even THINK of putting one of those back in me!!!!”  We all laughed a good laugh. The thing literally grew into me, and became me. A shithead going in and and shithead coming out. Good. Riddance. ✌🏻

Last night, after almost 8 months I slept on my stomach 🙌🏻🙌🏻🙌🏻

I hope I’ve brought a smile so far. Maybe even a chuckle. But, now for some hard stuff. *deep breath* Last Friday I received a call from Greg with some news that punched me in the gut.  He connected me with a friend’s mom who was a couple months ahead of me in her transplant journey. I finally worked up the courage to call her one day and interrupted her having a glass of wine outside on her deck. She was feeling great, transplant was going well, and loving life.  She made me laugh and smile and just kept telling me I had the best attitude and I was going to waltz right through this.  When we hung up I decided I was done reaching out to people.  This was a good place to stop - I was finally in a good mindset about the whole situation and it was time to write my own story. This past fall I learned her leukemia was back and last week she gained her angel wings 💔

Stupid C word. So sick of it. Infuriates me. Scares me. Saddens me. Makes me want to crawl into a hole. Makes me want to punch a hole in the wall.  I know I speak for the rest of the world there. 

Sitting through a tear jerker of a funeral a month ago. Another warrior gained his angel wings - esophagus cancer.  Pastors words still replay in my head, “A year ago there was no sign of cancer. No sign of sickness. And here we sit at his funeral.”  

My shit show story certainly doesn’t end here, but we did hit another big goal of achieving 100%.  I am still closely monitored because of my angry liver numbers and other graft vs host issues. One example, my lips. I mean, really?! Sore, tender, blistery lips that’s really putting a damper on my love of spicy food... and Portillo’s chopped salad dressing.  The burn sends me through the roof. For now, my lipstick is a steroid creme or Aquaphor. 👍🏻 Doc said he didn’t feel sorry for me for not being able to eat jalapeño chips... but if plain white bread becomes an issue we’ll chat. Hahaha! 


I digress... Enough about me.  It's time to turn the spotlight over to my very special guest blogger!  My husband 💓

I asked Jason if he'd be interested in writing something for the blog and I'm not sure he ever really answered me.  Quite honestly, I thought he forgot about it.  But, out of the blue he emailed me this...
**********

When Rhonda asked me to write a guest blog I told her that I could probably write a book about the last two and a half years. I will try and spare you all from a novel but gosh there is just so much to say about this experience. You’ve heard it before and I will say it again. Cancer sucks. It is a burden that no one should take on and changes lives in so many ways. I wanted to share my own thoughts and feelings about what this experience has been like from my point of view.

I still think back to that night when the phone rang and changed our lives forever. I was reading an autobiography by the actor Martin Short. His wife lost her battle with cancer a few years back and he talks about it in the book. I had almost reached that part of his story when my own story jumped into a new chapter (or like I said more like a whole novel). After Rhonda hung up we had a conversation. One that to this day I play back in my head over and over. The first words out of her mouth were “my babies” as she started to sob. With those two words my whole world came crashing down on top of me. I didn’t know exactly what I felt right then. Hell, we didn’t even know what we were dealing with yet but a late night phone call telling us to get to the hospital was not good. At that moment I knew being strong for her was paramount to any emotion I was having at that time.  I remember telling her that we were going to face whatever cruel stranger was about to come our way and we were going to beat it. Together.

You all pretty much know the details of what happened that night. I am not going to retell the same story Rhonda has already shared in her own wonderful way.

I came home very early from that long night in the hospital and the first thing I did was crawl into bed with Blake. He had his first ever pre-school field trip that morning and there was no way he was going without one of us. As soon as I crawled into his bed and saw that sweet innocent face I lost it. The weight of the previous six hours and thinking about how Blake and Kendall’s lives were about to be changed forever was too much for me to bear. The sound of Rhonda’s words still ringing in my head. “My babies”. In the years since I have had plenty of moments where I lost control, got angry and cried but nothing compares to that first one right out of the gate.

Since that day I have learned so many life changing lessons. It is just too bad that it took my wife getting cancer for me to learn them. Every aspect of my life was observed in a whole new light. It was as if someone had changed the reality filter and I was seeing things differently than before. My relationships with Rhonda, the kids, my faith, work, friends and even myself changed overnight. Literally everything. I was just rolling through a pretty good life when a giant turd of a curve ball knocked me off my feet but made me step up and be the person I was meant to be. I am a huge believer that everything happens for a reason and we either take advantage of opportunities when presented to us or we don’t. It’s up to us to recognize it and act. This was the ultimate test of that belief.

That test started with taking care of Rhonda and the kids. They have always come first but I admit there were times when I was distracted by work, a house project or something else. Being the “head of the household” wasn’t something I was used to and any previously defined roles had to change. As some of you may know Rhonda kinda sorta wears the pants in our household. I know it’s probably hard to believe but it’s true. But she is the smartest person I know. Why wouldn’t I just get out of the way and let her lead the way? I’m no dummy.

Rhonda, Blake and Kendall became the only thing in this world I cared about and all of those other categories of life drifted away. No more house projects. Work trips became minimal. Nothing mattered other than supporting and attending to their needs because for me that’s what it’s all about in this life. But it isn’t a solo effort. We have built a support team of family, friends and in some cases strangers which is a must to get through these journeys. We would be lost if it wasn’t for all the wonderful people selflessly giving their time, love and support for which I am forever grateful.

And a special shout out to our family. You really are the glue that kept this all together. Rhonda and I have been so lucky to have been blessed with such loving and caring people.

But, there is a flip side to building a support system that I think about constantly and is important to share. We have lost touch with some people over these past few years which is a byproduct of having different priorities both for them and us. Not to be a Debbie Downer but there is an important lesson which is that when major life changing events happen, both good and bad, relationships usually change forever.  For this example I am going to stick with negative effects. Not everyone is suited to deal with such dire complications and I would be hypocritical if I didn’t include myself in that category before all this happened. I probably would have ran away and ignored the bad news so it didn’t become real. I am not saying that is what happens in every case and it certainly isn’t anyone’s fault.  I don’t blame anyone that has faded away from us but this is an unfortunate consequence of major change. Who knows if those relationships will ever recover, I pray that they do, but I fear what’s done is done and there’s probably no coming back.

Okay then I will get off the soap box now and only positive vibes from here on out I swear.

One of the major things that changed for me was work. Don’t tell my boss but there was a long stretch where my work suffered. Who really cares though??? Yes making a living is one thing but making our career a number one priority is another. Being able to not only provide for my family but enjoy moments with them is what it is all about.  Now don’t get me wrong my company has been amazing through this whole thing. My boss, who is more like a mentor than a boss, has always been understanding and there for me. He asks how Rhonda is doing almost every time we talk and says his family is thinking about her. The amazing thing is that those two have never even met in person!!! Just another example of being given a gift that pays off later. I got my job by pure happenstance and again goes to show that everything happens for a reason.

As for myself I continue to try and find the beauty in the absolute shittiest of shitshows. There have been ups and downs, moments of doubt with a helping of the worst thoughts someone could have as their love goes through this living hell. But for every crappy moment there have been a hundred beautiful ones that have guided me this far. It’s about getting through challenges and celebrating the victories. You know that book I was reading before when this all started? I absolutely could not pick that book up and finish it for over a year. I knew what that book represented in more ways than one. Having the nerve to get through it literally turned a page for me in my journey.

I believe that in this life we have to try and learn something from the experiences we have as well as appreciate what we have when we have it in our midst. I appreciate everyone that has asked how Rhonda is doing even when things weren’t so great. It has shown me that they cared enough to ask about someone who has had some sort of impact on their lives. The messages, gifts and support is inspiring.

I have found myself appreciating the little things now more than ever. Blake and Kendall sleeping peacefully in their beds or laughing with Rhonda at one of the kid’s made up “jokes”, a random line from a movie that makes me think “that’s so true” and pretty much every sunset now leaves me in awe. A look, smile or laugh doesn’t go unnoticed. The best though is getting hugs and kisses from my family when I get home whether it be from a five hour trip or one for five days. It is always the same and absolutely never gets old.

Lastly I move onto your normal blogger, resident pants wearer and mother of my children. Rhonda Kay, (yes I am now talking directly to you, sweetheart).  You have taught me more than anyone or anything through this journey. Since we began dating 15 years ago (holy crap that can’t be right) you have always made me want to be a better man and I like to think that you succeeded just a little bit. If it weren’t for you I would have never been who I am today and for that I am grateful beyond words.  

Obviously, I wasn’t the one that had to go through what you have but I imagine it is a very lonely position to be in even with all of the wonderful love and support given to you. I only hope I have been there for you with a shoulder to cry on with words of encouragement to keep pushing even through the darkest times. Through every doctor’s appointment and test results, both good and bad, you have shown a strength and purpose that leaves me in complete amazement. Both the writing of your blogs and support you have given others going through the same journey makes me so proud to call you my wife and best friend. Through this mess you have found something wonderful inside of you waiting to bust out. I hate that you had to find it through such awful circumstances but like I said before everything happens for a reason. You have always had a voice and I am so thrilled that you are able to share it with the rest of the world. When hearing others tell me they love your blog and it inspires them it makes me so proud.

Through it all we continue to build a life with our kids, family and friends. It is a life that I think is beautiful and the best is yet to come. I yearn to find out what wonderful adventures we will experience in the future. But I can say one thing is for sure. I Love you my rock star/wonder woman/ass kicker with all my heart and whatever happens it will only happen one way. Together. XOXO

Jason
**********

I hit the jackpot with that man, but, I'll spare y'all a sappy response. 

Speaking of jackpot...

Jason and I are off to celebrate this long hellacious journey in VEGAS!!!  

Thanks for always keeping tabs.  Checking in.  Sending a joke out of the blue.  Prayers and swears. Everything. 

Be well.

Love,

Rhonda Kay
xoxo

Peace. Out. ✌

Best. Nurse. Ever. 😷

Always helped me flush lines...

💙

Life's too short, friends.

Day +187

Saw this. Loved it. Sharing it. 

Trying to keep you in the loop! Don’t want to go too long inbetween again. You’ve all come this far with me and I’m so grateful for that.




Last we spoke XY study was up down, up down. Doc would threaten a boost/top off and then it would go up. Take the boost off the table and it would go down.  So he put the threat back out there and two weeks ago it went up to 95.5%!  Last weeks visit he was very pleased with the increase but I told him to threaten again anyways... and today we learned it went up to 98.5%!!! 🙌🏻🙌🏻🙌🏻

Kendall has been wanting to give gymnastics a go. So, of course, during today’s introductory class that email came through where I learned this amazing news.  I almost... ALMOST gave that cartwheel round off back flip a go but I decided I didn’t want to impress the teacher off the bat like that.  She would expect big things out of Kendall 😜

This past Sunday was my 6 month birthday. 6 months! Another huge milestone behind us.  When I learned I was heading for transplant (back in a June), I reached out to my prior oncologist at Loyola (in a complete panic attack meltdown) just to let him know what we learned new and where this was all going.  His words were so calming, but stern. “You are going to kill this. THIS is your potential cure. And if anyone tells you different, they’re lying, but, the first 6 months are HELL.” Here we are, over another mountain 🙏🏻

6 months old!

My liver numbers are elevated. What does that mean, you ask? 🤷🏼‍♀️ Good question. Perhaps a sign of graft vs host disease (GVHD) presenting itself - something they want to see a little bit of.  It shows donor cells are fighting Rhonda cells.  We want NO Rhonda cells!  So they upped my liver meds and we’ll keep an eye on it. No, it’s not due to my occasional cocktail 😉

My doc visits have been reduced to every two weeks. That’s a major break! (For me anyways. Haha) My dad asked what I cared?! I always get breakfast or lunch out of the deal! Which is true. But, the less I need to walk onto that oncology floor...... yeah. You can imagine. I’ve been downtown Chicago more in the past 8 months than I have my whole life.  Hell, I can even say I lived there. In a penthouse. With a multimillion dollar view.

So here’s what’s going to happen... I go back next Friday, on my nieces 12th Birthday, by the way... 12!!! Ahhhhh! How is that possible when I’m only 24?!?!? 😩 I’ll make doc expedite that XY study.  4/5 days later we’ll learn it hit 100%. I’ll get my requested bone marrow biopsy to confirm all results.  Get these $!?&$ tubes out of my chest AND THEN WE’ll ALL MOVE ON WITH OUR LIFE.  Can I get an Amen?!?!

Be well!

Rhonda Kay
xoxo

Roller Coasting into 2018. Day 160.

60 days since we last spoke... That means it’s day +160! How ‘bout it?!  Some days it feels like 1,600 days ago. Others, just 16.

This roller coaster ride is never ending.

Early December we learned the XY study came back with a significant decrease of male cells. It dropped to 80%. The goal is 100%. We need to see no signs of Rhonda (female) cells because we all know what those are capable of doing... they are capable of being SUPER lame and mutate into cancer.  Dr. Mehta was concerned after these findings... and when he’s concerned, I’m concerned. More like terrified. More like talk me off the bridge.

He said he never acts on one test so like every appointment he ran the test again and expedited it.  If it were to decrease again we were all set to give me a “top off” or booster of Greg’s stem cells that are chilling in the freezer somewhere in Northwestern Medicine. Crazy!. There are around 7 million left and a booster would involve about 3-4 million more. Thank GOD Greg was able to harvest double the requirement!!!

In my head, “expedited” means I’ll get a call before I’m even back home with the results.  In the labs head, “expedited” means 4 days later instead of the normal 7. *Insert major eye roll* LAME. 4 loooong, anxious days later I learn the XY percent went up to 90%!  I mean, really?!  I could do without the stress, thanks.  We would continue to monitor closely and hold off on the “top off” for now...  That night I celebrated by pouring myself a Captain ‘n Coke. First few sips were brutal... but, then as any cocktail does, it got better and better... and better. The day I was diagnosed was the day I quit my Coca Cola addiction cold turkey. Bam. Done. I LOVED my Coke! But, I choked it down that night.  These Greg cells looooove their Captain ‘n Coke so I’m trying to guide them on home. Haha!

We were driving in for my weekly visit. One week before Christmas.  7am. Chicago rush hour. Bumper to bumper on the inbound Kennedy.  We had just got in the express lanes when I got SUPER nauseous. Roll my window down, rip my hat off, rip my coat off, get out of the car... 10 lanes of bumper to bumper traffic in both directions and here’s Rhonda walking down the express lanes trying to toss her cookies!  You’re all welcome for that show, Chicago!  Dad, I’m so sorry for not making it to the hospital when the cookies finally decided to get tossed... thank goodness for that Jewel bag in the back seat!!  What a shit show.

Christmas morning we learned they went up to 94%! Thank you, Santa! I celebrated that one with some delicious cookies, not of the upchuck kind. 😉

And then there's this morning... I learned it dropped down to 90%.  Up, down. Up, down. This stuff be makin' me CRAY CRAY!!!  I mean, HOW is my hair not coming back in gray???  The "top off" is back on the table.  The remaining Rhonda cells got their dukes up... time to infuse 4 million more Greg cells and *hopefully* clean the slate.  Rhonda cells, its time we part ways. Peace out.

Recently, in my transplant support group, someone asked if we were planning to make a scrapbook of our journey?  Or what were our plans for all the pictures/cards/things we acquired during this hellacious time.  It made me think... A part of me would like to make a scrapbook of it all.  To be able to look back and see all I’ve/we’ve been through. How far we’ve come. The things we learned.  The tears, laughs, talks that carried us through...  and then the other part of me wants to have a big party and throw every last “thing” in the bonfire and close this chapter.  I mean, what would I title it? “Rhonda’s Shit Show”? LAME.  Way too early still to be able to close this chapter... but, man, when I do... 🎉🍾💃🏼

Does this chapter ever really close? Does the fear ever really go away? Will the “triggers” subside? Seeing a pair of lounge pants in my drawer that I should really just throw away... they were the pants I was wearing for three days when I was “in the valley” of transplant and hardly moved from my hospital bed. Cottage cheese that I lived on for DAYS makes me gag at the sight of it now.  Every saline push through my port lines stings the nostrils.  The whiff of, yet, another opened alcohol wipe. Sure, I’m cancer free. Sure, my hair is about 1” now! Sure, I’m feeling more like Rhonda.  But, let me tell you, the fear is real. I am not, AT ALL, at peace with my health. Nothing is wrapped up in that pretty little bow y’all want to hear.  My favorite is this: "How are you doing? Good?"  Why ask?  You already answered the question they way you want to hear it answered.  I mean that in the most sincere way, by the way.  I am 100% guilty of things that now irk me.  It's a different ball game when you live it. 

Blake and Kendall don’t mind doctor days. It means Grandma sleeps over or is here when they wake up. But, lately they have a lot of questions. Why do you have to go to the doctor all the time still? I thought your blood was better now? Are you coming home right after? Do you have to be gone a long time again? When do you get your tubes out? Why is your hair taking forever? And Kendall’s most recent comment that stopped me in my tracks... “I hope I don’t have to get special medicine that makes my hair fall out.”

Real life, friends.  A big reason I’d make a scrapbook is for them to look back on someday to show them how AWESOME they were through all of this.  THEY are the reason I am so strong and they give me so much purpose to get up and face the new day.   They maybe know more than a (then) 3 and 5 year old should but I wouldn’t have it any other way. A St Jude commercial comes on and they yell, “Look mommy! They look like you! No hair!” They get it. And yet, they have never heard the word "cancer" out of our mouths.

Speaking of hair... my days of going incognito are dwindling.  There's been a few leaked pictures on Facebook of me and my "pretend hair"as Kendall has so cleverly named it.  I will admit, there have been two instances where I've been somewhere and two different people didn't recognize me and I just carried on my merry way.  I will never tell you who you are!  But, it certainly solidified my preaching of NO! Hair is NOT just hair!  Wig shopping could be a whole blog post in itself!!!  What an experience.  There was no matching my red hair for as hard as we tried, so I went funky.  A brunette bob with highlights.  Why not?!  It's taken some getting used to... but, then again, so has being bald.  Jason and the kids giggle when I say, "I have to go do my hair"... and I return in about 30 seconds.

This post feels gloomy?  Perhaps its reflecting the dreary, January days we're living.  It's about that time then!  Jason, where's the next beach destination?  My year long restriction from public pools, lakes, rivers, oceans and sun won't stop me.  Put me under an umbrella with a good book and cocktail and I'm good!!!

Happy New Year, friends!  May this year be the year the roller coaster ride halts.  So far my new years wish of making this year NOT all about me is not holding up.  Thanks for keeping tabs.  Sorry for the long lull between posts.  Lame.  And to Dr. Mehta... I am holding you to your "2018 is going to be a boring year" speal!!!  END THE SHIT SHOW!!!

For now, I have a different "top off" in mind... Hey, bartender!  Set me up a round!

Be well!

Love,
Rhonda Kay
XOXO

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