Day +365!!!!! (+440, actually...)

***So I started writing this 4 weeks ago... then I got super sick and it got put on the back burner... and then I saw another meme today that made me chuckle... yet, another sign to get writing***

HOLY CATS! Has it really been 6 months since I last wrote???  6 months??? I wish I could say we won the big 'ol jackpot in Vegas and bought an island in the Caribbean with a big 'ol yacht and WiFi is non existent on my glass deck that extends out over the ocean so I couldn't write....  But, no. Hahaha!!  Truth be told we returned to Illinois and we've just been living the dream and trying to return to a sense of normalcy.  Little less frequent doctors visits, little less medications, little less worry over every little thing.  Normal everyday stuff I have craved so bad.  Trying being the key word there.  I feel a headache, sore throat, ache in my butt, hangnail on my baby toe, anything... and my mind goes and goes... and goes.

To be honest, I have probably fired up the laptop a half dozen times to blog.  Especially around the time I was approaching my big one year re-birthday.  Stared at the blank typing space.  Typed a sentence to begin and backspaced.  Tried another sentence to begin - backspaced.  Slammed the laptop screen closed and went on with my day. 

How do you even begin THE blog post about your one year birthday after allll the shit you've been through.  All the reminiscing between Jason and I.  My parents and I.  My family and I.  My friends and I.  New friends that are new to my shit show.  It's weird and surreal.  The difference a year can make.  And honestly, often I wonder if people even want to hear from me anymore.  Like, "big deal! It's your one year re-birthday.  Whoop dee doo!  You're cancer free.  Get on with your life..."

True Story.

I do have to say though... I get A LOT of people asking for a new blog!!!  That's so awesome!!!  I do apologize for the long lag in between.  I've never really struggled so bad with writer's block.  A dear friend told me to pray about it.  So I have been.  Praying and looking for a sign...

And it's like He rolled his eyes at me smacked me in the face today.

It's like he said, "how many people with anchors on their shirts do I need to have walk by you?  How many anchor tattoos do I need to have you catch a glimpse of?  The gray paint you chose out of the ridiculous amount of gray paint choices called ANCHOR didn't speak to you?"  Trust me, big guy!!!  I hear and see them all loud and clear.  Many make me chuckle to myself.

But today's was cool.  It made me cry.  Thanks a lot.  Sitting in church.

The priest started to deliver his homily.  He started out with "You know the way to make God laugh really hard??  Tell him your plan."

He carried on and it was like he was talking directly to me.  Yes, we were sitting in the second row so I was easy to make eye contact with but I swear he never looked away.  "God has a plan for you and he's going to be with you every step of the way.  You are living his plan.  Not the other way around."

God, if that isn't the truth.  A few months before my diagnosis, Jason and I decided to go for baby #3.  I'd lie if I said we didn't try for a few months leading up to October 2015.  We even jumped on the opportunity to buy my parent's Suburban for our growing family plan. After a few months of failed attempts, and learning I was full of leukemia I have never been so grateful to be unsuccessful in that department.  That would have been bad for all parties.  There was a reason He gave me the insane idea to have our babies really close together!!!  Our sweet Blake was just 7 months when we decided to go for #2.  Really got our finances in order and was finally getting somewhere.  And then BAM.  Cancer.  Our plan was a joke.  I'm sure He laughed until He peed.

Dang, 6 months ago!  I had to go back and read my last post to see where we left off.  Even browsed through my phone to see what all I've done in there.  A lot of good.  A lot of normal everyday things.  And some heart wrenching... In April another leukemia and stem cell transplant warrior gained his wings.  That one was hard - not that any are easy.  But, that one was hard.  You see... there's this thing called survivor's guilt.  And it's very real. I had finally reached 100% donor cells, I was cancer free, and I was kicking ass.  And just like that, I get kicked in the gut and brought down to my knees.  3 fellow warriors I followed closely, reached out to, remained in touch with, have now passed on. Three.  That. Is. SO. Hard. I am often reminded how fresh my wound still is.

Many, many people search and search and NEVER find a donor.  They, and their loved ones sit around for years watching their loved ones health deteriorate in front of their very own eyes. I found my donor in 2 weeks.  Right within my very own blood relative.  The ideal story.

Many transplant patients are often repeatedly admitted following their discharge with God knows what.  Fever, Graft vs. host disease issues, failing organs, pain, pneumonia, rejection, etc, etc.  I came home to my couch and never had to leave it except for regular check ups.

I jump on my transplant support group on Facebook and it's post after post of issues, death, prayer requests, etc.  I feel guilty and quickly close out. Selfishly, my heart isn't ready.  So then I sit and pray so hard for all my fellow fighters. Survivor's guilt.  A tough reality.

A tough reality... but a WHOLE new found appreciation for life.  My short 2 block walk to the bus stop everyday I can find 20 things to stop and stare at.  A butterfly landing on a full bloom flower.  Don't ask me what kind of flower - that's not my jam! LOL! A pretty flower - that kind.  The bluest of blue skies.  A freshly mowed lawn.  A freshly seal-coated driveway. The hot summer breeze against my face.  Ok. No. Not that.  I'm over the 90's.  I'm hot and waterlogged.  Bring on fall and for the love of God can you make the mosquitoes extinct?????  Had to snap you all back to reality.  Life isn't all sunshine and rainbows now, but, you get my gist.

Then I make myself go back to that Facebook group.  Make myself reach out to fellow warriors.  Make myself face my fears.  And I DO post my positive, upbeat, good news.    Because, for sure, someone out there is looking for and needing that glimmer of hope.  If I help just one person find it in them to fight another day, wipe away tears, crack a small smile, get off the couch, anything... then I did my job.

So much of this is a mind game.  Waiting for test results.  Waiting for the next step.  Waiting for answers.  Waiting for blood counts to start creeping back up signaling engraftment.  Waiting for a sign.  Waiting.  So. Much. Waiting. Keeping your chin up and going on with your life is hard when you're waiting and wondering.  Trust me.  Do you know how many holes I could have dug and crawled in?  That is why I LOVE sharing my shit show.  Hope. ⚓

4 weeks ago I came down with hand, foot, mouth disease.  More disease.  God, I still DESPISE that word.  Like a diseased cow in the hurd.  Lame.  Most likely picked it up from my children even though they didn't have it... aren't they sweet?  Let me tell you.  That stuff is no joke!!  HAHA!  What in the Sam hell?? I had no idea.  I was bedridden for days.  Handling things through zip lock baggies so as not to spread my disease.  I couldn't even hold a book it hurt so bad.  It almost put a stem cell transplant to shame... almost 😉

I'm 1 now!  And, boy, did we celebrate.  In Nashville.  So fun!  Jason asked if we would be taking a trip every year on my transplantaversary?  Why not?  Any reason to have a good time!

Last week, three years ago, was the day my world was turned upside down.  As much as I'd love to forget it, I can remember EVERY. single. thing. about that day.  The jeans I wore.  I was able to slip into a pair of jeans I wore in college because of my huge weight loss.  Didn't wear them much after that... LOL... but, yeah.  🤣  Our children's pediatrician took one look at me and knew I had an issue.  A very serious issue.  Layed me on the exam table and started feeling for lumps and bumps.  Insisted on blood work that very day.  And 12 hours later I got the phone call I had leukemia.

Life changed in a second.  One second.  You. Just. Never. Know.

And just like that... 1 whole year has come and gone since I was infused with 8 million of my brother's stem cells...  4 treatment days of high dose chemo. 4 - 4 hour infusions.  Trickled in, killed off my immune system, wiped me dry of all white blood cells, nearly all my red blood cells, all of my absolute neutrophils and most importantly, all leukemia and myelodysplastic syndrome cells too. 0.0 were my blood counts for 9 days. 4 simple little bags of poison.  That shits wicked. What the crap is even in there???  Nevermind. I don't even want to know.

But, now what?!  Now I want to scream from the rooftops "GET SWABBED!!!"  Register to be on the bone marrow/stem cell registry.  I want to tell everyone my story.  I am an open book. I want to tell them bone marrow biopsies SUCK but they're your tell all.  I want to talk about hemoglobin and red blood cells and white blood cells and enlarged spleens.  I want to talk about chromosome deletions and chromosomes trading places.  I want to talk to them about a FISH study.  A chimerism result. The 5 oral chemo-therapies I was on that all failed and sent us into a mass panic.  I want to tell them that shaving my head was the worst day of the whole shit show (and watch them roll their eyes because they don't know what that feels like yet.) And most of all, I want to tell them they're going to be ok.  That they're going to ROCK THE SHIT out of their fight and come out so much more unbelievably stronger than when they went into it.  *Bows head* God, let's work together on that plan, please.  I'm not trying to tell you my plan, but, I am kinda telling you my plan. You brought me to to this, you're bringing me through it, and now I pray you bring me to my new calling.

Go to work for a donor registry? Work for a shit show foundation? Start my own organization? Write a book? I don't know.  What I do know is that I love nothing more than being tagged in a post/text/email/phone call telling me you swabbed.  Reaching out to me to see if its ok if you get a newly diagnosed friend/family member/coworker in touch with me.  Forward them my blog... Makes my day. 





Side note.  I just read an article how psychologists are urging folks to be friends with people who swear a lot.  They are honest people, true to themselves, have high vocabulary and fluency, and don't beat around the bush.  It's on the Internet so it must be true... 😂

Come walk with us next year! Team Rhonda's Anchors!! 

 This summer we packed up the kids and headed to Oh, Canada!  Niagara Falls.  First stop was just 60 miles into our trip for my monthly checkup with Dr. Mehta.  Blake and Kendall enjoyed seeing where we go on doctor days and it was good for them to understand better.  I still get many questions about why I'm going to the doctor so frequently.  I think Dr. Mehta enjoyed meeting them too - ha!  I shared a pic on social media of us and Dr and I couldn't believe the response...  The amount of people impacted by this man.  The brains behind SO much crap.  He's awesome. 

Jason and I just celebrated 8 years of wedded bliss.  My mom and dad - 50 years!  Kendall will be celebrating her 5th birthday next week (I'm sure she's told you 😉 if you've been lucky enough to have seen her recently).  Blake turned 6 and went into first grade. One day at a time is the most I can do some days... but, man, do the years fly.  Live it up, folks.  Throw it in the f it bucket and LIVE!

For, we just never know. 

Thanks for reading.  Thanks for praying.  Thanks for hanging in there through it all.  Thanks for still asking and caring. 

Be well,

Rhonda Kay

You never know what Rhonda you're going to get 😜

When our girl donated her hair to people who "need that yucky medicine" 

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