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