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"