Sunday Funday

The quick medical update from the hospital front is that I've been struggling this weekend with an unknown infection that has resulted in high fevers, low blood pressure and high heart rate.  Since I have no immune system at all, they covered me in antibiotics while running cultures to see if they can determine the exact cause of the infection to treat any more specifically.  Nothing back yet, and it's very common to never know what it was.  In this case, I think it's likely that the girls shared a little viral something with me before they went to the beach as Clara was running a quick fever yesterday, too.  They have given me lots of Tylenol, covered me in ice packs, and I think after almost 48 hours, in just the last hour the fever has broken....and hopefully will stay that way.  I've slept a huge proportion of the weekend in that fever-sleep state.  

We're going to tighten up our visitors to a very small number and have those folks mask in public as much as they are able to reduce the chance of this maybe happening again.  But it's not at all unusual for chemo patients to have a fever like this, so while the team was concerned they weren't panicked.

Enough of the boring.  Let's have some views from the beach!

These girls love the beach the way their Mom and Sweet Mama do.  Even though I know it was hard for my mom to leave me, I'm so so so grateful that the three of them are there together in a place that is truly cleansing to their souls.  From the sounds of it they've spent hours upon hours riding in waves, putzing in the sand, and just savoring their happy place.  Sure wish I were with them, but this is the next best thing.  

Thanks for all your prayers over the weekend as we battled this particular challenge.  There will be more to come, but I think we're coming through this one.

Thanks be to God.

Flashback Friday: A Dozen Years Ago

    On this day, twelve years ago, June 9, 2011, we brought Clara home from this very hospital after her 78 day stay fighting to live after being born with a Congenital Diaphragmatic Hernia.  

RIP Rufus, we sure loved you good boy.

    We always remember her on June 9 and celebrate what a big milestone that was!  So, of course, it's been on my mind a lot today.  Clara's birth and fight for her life were a crash course in navigating hospital life.  We learned how to go to rounds, ask questions, notice trends and record them.  We learned how to park in the right spot, wash before entering (NO ONE wore masks then), how to make her little spot feel cozy and comfortable with blankets from home and not too sterile.  Stepping back into those rhythms the last week has been weirdly comfortable.  There are moments when I realize "I did this for Clara and now I'm doing it for me."  Loading patient belonging bags and toting things back and forth between the hospital.  Guessing what symptom might be a side effect of what and what medications might be able to be adjusted to solve a problem.  I haven't been allowed to leave my teeny little room in the Cancer Center since they plopped me here because I'm on a 21 Day Covid Lockdown, but I know as my family treks back and forth, walking these same halls, they must be remembering and feeling so many of those same things, too.

    I'm not trying to get into any toxic thinking patterns about how Clara's journey prepared me for this one.  Quite frankly we'd have preferred to have neither, thank you very much.  I don't think this happened to me because "I have enough faith" or "I'm built to handle it" or any of that other nonsense.  But I do think our journeys prepare us for our journeys and that I can actually give some gratitude for all that I learned twelve years ago and how it's helped me slip into hospital life more smoothly than I might have otherwise.  I trust and adore the care team that's giving me care now just the same way I trusted and adored Clara's care team then.  We're in such good hands with the village of family and friends caring for us and staff here working so hard to treat me.  My kids have amazing support from a huge web of loved ones ready to walk through this with them.

Clara said something to me this morning that I thought was really wise for a twelve year old.  She compared this leukemia diagnosis to our time during COVID, "We always used to say we had it so much better than most people because we had you and Sweet Mama to teach us and jobs the grownups could keep working and plenty of resources to be able to endure it really well.  We had COVID better than most people had COVID.  And now the same thing is true with your cancer.  We have this amazing hospital right in our town, our entire friends and family and church and tons of people helping us and caring about us while we go through this.  We're going to be okay."  

Can you believe that came from that baby in the Homecoming pictures from 12 years ago?

On today, I celebrate Clara's Homecoming and the twelve years of rich and abundant life she's had since.  And I look forward to my own future  "Homecoming," a day that I am claiming will come with full and complete healing (in five years of full remission!)and a rich and abundant life to follow in part because of the journeys that have prepared us for this one. 

Clara today, 12 years later:

Thanks be to God.

Five Good Things (June 8)

 Quick little update for you tonight because there isn't too much to report.

Five Good Things Today

1) Four awesome nausea meds working together in tandem to give me a great day of NO NAUSEA.

(No pic.  They're just there.)

2) Visits from my girls before they head off to the beach for the week.

3) Got me some of those sweet sweet platelets (WHY ARE THEY YELLOW?  WHO CAN ANSWER THIS SCIENTIFIC PHENOMENON?  THEY SHOULD BE RED).

4) These cool socks sent from a friend with a little bit of love and inspiration. 

5) Tonight I'm going to simul-watch (is that what you call it?  Like pandemic times when you would watch something with people in a different house from you at the same time and just text commentary about it all the way through) the second half of this PBS Broadway Special  that we started the other night.  Highlights include Chita Rivera at age 90 and Sutton Foster at perfect.  Maybe you want to watch it too; you only have until tomorrow before it's gone.

That's it, folks!  Thanks for your messages, your pics of your kids, your little everyday updates about what's happening in your worlds!  It makes me happy to feel connected to you.  

~Chrissy

Hair Today; Gone Tomorrow

 Had a pretty good day in terms of symptoms and meds and all the medical stuff.  Nothing too exciting to report there really (stay away nausea, my mouth feels like Elmer's glue, keep trying to eat/drink/pee/poop/other basic life functions).  

Today's big news is in the Lifestyle and Fashion Department.  My hair has not started falling out yet, but it seems likely that will begin over the next week.  Since my mom and girls are going to the beach for a bit, I wanted to deal with the Hair Issue before they left.  

Hunter has cut my hair since I was in college, probably?  Definitely did my wedding hair, so we've been together 15-20+ years now.  He agreed to come to the hospital after his last client and do a big giant chop chop ahead of the inevitable hair loss.  I thought it would be good for the girls to get to see it.  So, we had a hair party!  

I know, enough with the narrative.  You're here for the pics.

BEFORE:

DURING: 

AFTER:

Yay Hunter!!

PROM POSE!

And a few bed selfies....

I don't care too much about the hair, but I can't say I don't care at all.  I mean, I do have two x chromosomes.  And my curls are kinda..... MY THING.  So, even though I think Hunter did an amazing awesome job; I'll be honest, it feels a little weird. I've never ever had hair even remotely this short ever in my life ever forever.   Right now I am not particularly interested in wigs.... I may play around a little with scarves or hats, but mostly I am just glad that when the mass shedding begins, it will only be a few inches of hair instead of my huge curly mop.  

Hope you enjoyed tonight's edition of Lifestyle and Fashion!  Till next time!

~Chrissy