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

Tuesday: Kidneys and Nausea

The day got started really early with a couple of rounds of intense nausea and vomiting that were pretty scary and caught me off guard, but we responded swiftly with some different anti-nausea medication.   That, plus some really low blood pressure knocked me out pretty hard for a few hours, but after about 11:00 AM I have been rallying and feeling good.  Took a shower, popped in to a few minutes of a church staff Zoom meeting (good to see y'all!), sorted some mail (loved the cards, y'all!) and had some hangout time with my mom.  It was the girls' last day of school and I loved getting to see some pics of them living it up at Field Day.  Then, they came by for a short visit this afternoon, too.  So I loved getting some snuggles from them and seeing my in-laws one last time before they head back to Georgia tomorrow.

For much of the day I was on fluid limits because, in addition to my incredibly strong and amazing bones, I also have HIGHLY effective and efficient kidneys.  I'm not trying to brag because I'm the one locked up here in the hospital with chemotherapy coursing through my body, but it sure sounds like to me that mostly my body parts are very impressive.  Strong Bones, Young Healthy Kidneys......They were giving me a lot of fluid and I was also drinking quite a lot and those kidneys were working so hard, we wanted to chill out some.  But that's kind of regulated too, and now I'm not restricted on fluids and I feel like with the nausea and vomiting managed I can have some good stretches here ahead!

Don't need much more of an update tonight except to say I'm overwhelmed by the love and support.  It's truly an embarrassment of riches. Stay tuned for more updates tomorrow....

Thanks, KBC Colleagues for letting me crash Zoom into the staff meeting!  It was so great to see you all!

Last Day of School and Field Day for my girls!  

Chemo Regimen for Dummies

 Those of you who followed along while Clara was sick know that there's not a scientific or mathematical bone in my body, but I try really hard to learn all the medical jargon and understand what we're doing here.  I ask lots of questions, I take lots of notes, I track things.... I think it makes a huge difference in being able to advocate and make smart decisions.  So, let me be clear that when I say this is "Chemo Regimen for Dummies," I am the dummy here.  But I'll do my best to explain what I'm getting and why because it's kinda interesting, even if Arts and Humanities will always be better than Math and Science. 

I am receiving what is generally considered the standard induction regimen for Acute Myeloid Leukemia:  "7 + 3" 

7 - Seven consecutive days of cytarabine via continuous infusion 24/7 IV

AND

3 - Three days of an IV drug called daunorubicin

(also IV, but it's once a day and pushed over about twenty minutes, not continuous.)

"This breakthrough combination and schedule of drugs for AML, widely known as the “7 and 3” regimen, dramatically changed the prognosis of patients, has remained the backbone of standard therapy for close to five decades, and, amazingly, is still going strong."  If you're not a science dummy, read more here.

Now, in addition to that standard med, I'm also getting an oral chemo drug called Selinexor which is a trial drug!  Science!  Exciting!  It's already an FDA approved cancer fighting med, but they're testing it for this application so I'm lucky and get to try bonus treatment! 

So, we started that 7+3 on Saturday which means we're finished already with the Daunorubicin.  Four more days of the continuous Cytarabine and then some more random days of oral Selinexor.  About two weeks from the start date (so, Saturday 6/17-ish) we will do a bone marrow biopsy to determine whether we just sit and hold for two more weeks or want to tweak/change/add something.  The first bone marrow biopsy didn't go so great because my bones were too strong, so we'll do this one under CT.  I'll likely be getting the sickest about then with chemo side effects at their peak.  So, let it all cook for a couple more weeks and then check and see what the data tells us is happening and adapt and go from there.  This is how Science works, People.

So, basically I chill with my pole and let these drugs all do their thing.

Bullet updates:

- Slept well for multiple hours last night so that was super good. 

- Labs and vitals are staying pretty strong.  Didn't even need any blood transfusions today!

-Coughing is much better today.  COVID isn't gone, but I can tell it's fading.  Just in time for the chemo side effects to kick in!  

- I've been in a window of planning and organizing and outsourcing my whole life (work, kids, dog, house, etc.) so that when I may feel really crummy in the next few weeks, we've got plans in place.  There is a spreadsheet, y'all.  I know you're shocked.  I'm grateful especially to my good friend Spence O'Neill on whom I have bestown the title of "CARE COORDINATOR" for helping me think through all the logistics.  We know moms carry a heavy mental load, but passing that load off to others is a reminder of just how heavy!  For instance...

- My mom is fresh off an international flight and today helped manage girls' dentist appointments and gymnastics after school, plus getting them ready for Field Day tomorrow and piano lesson and end-of-year teacher gifts.  Robert is loving extra on our girls and shuffling back items between home and hospital, and coordinating neighbor help with dog breaks and working.  His parents are still here, taking care of Otis, doing laundry, keeping the food going for everyone..... WHAT A TEAM!

-Only real side effects that I'm experiencing are loss of appetite, dry mouth, everything tastes strange.  I want to keep eating so I have good energy, but it's a chore, not a joy.  And it's weird to take a bite of something and have it taste totally strange and ick.  I am so grateful to not have much nausea as that is something I typically struggle with (remember how I threw up every single day all nine months of both pregnancies despite daily Zofran?) and may still.  Staying ahead of that will be a huge blessing.

Thanks so much for the continued notes, comments, texts, messages, emails, etc.  Each one brightens my day and reminds me how surrounded we are with love.  I'm mostly not taking phone calls because talking wears me out more than typing.  So feel free to shoot me a written message and know I'll listen to your voicemail, but probably not call you back.  And I'm savoring the cards that are coming in the mail.  Wish I could write you each back, but know I'm feeling the love.

Morning coffee and meds

My IV pole

My pole with a view of my atrium.... fake flowers in vase (no fresh flowers, please!) sent from a dear old college friend, along with a sleep mask and this note: "They made me think of you and our walks through Reynolda Village ❤️ I hope they brighten your day the way the memory brightened mine" and Eloise's Baby Fiona hippo stuffie in my lap that she's letting me borrow.  

New jammies, clean hair.

Another friend sent this today.  Pretty spot on:

Thanks be to God.

Shout Out Sunday!

 Let's give a few shout-outs for all the good on this Sunday!

For those whom we've lost touch with some the past dozen years, I'm currently serving as the Director of Children and Family Ministry at Knollwood Baptist Church.  This is the church I grew up in, was baptized in, got married in, and who has carried us through lots of life.  I love her deeply.  Being in the professional role the last several years to nurture their Children and Family Ministry has been one of my life's greatest joys. 

I knew it would be a big and emotional day at church for my family and my church family as the last bit of news trickled out to everyone.  I'm so thankful for the tender care and gentle mercy that seems to have been surrounding everyone as other folks had to share news with all the children in that congregation who are "my kids." From the video clips and the time for children, and hymns and prayers and sermon.... the chance to feel connected through Livestream with a good hard day was really dear. 

Today after Sunday School and Worship was what we call a "BIG EVENT" day.  Summer kickoff - huge meal, party, activities, inflatables, treats and more.  Like a week of VBS rolled into one afternoon.  So, I'd been planning and prepping for it the last month or so, and then on Wednesday quickly started handing it over to the lay leaders and other staff to seal the deal with final execution.  By all looks, y'all had a terrific afternoon.

1) SHOUT OUT to all of the volunteer leaders for stepping up to the plate in such huge ways to make sure those kids all had an amazing Aloha Summer. I loved seeing all the photos and felt such love for this community.   I HATED not being there and also LOVED knowing that you all had it completely under control even without me.

2) SHOUT OUT to a hot shower.  Finished the first 24 hour bag of chemo and had a short break off the pole to get cleaned up and changed and hooked back up again, and that felt like a great celebration!  Day 2 is now rolling....

3) SHOUT OUT to my dad and his wife who drove three hours each way just to lay eyes on me.  His sister (my aunt) was diagnosed with AML almost five years ago and was treated successfully right here on this unit.  She's just a few months away from hitting her "cure date."  It was good to see some family and be reminded of what strong stock we come from.  Sorry, leukemia - you're barking up the wrong tree.

4) SHOUT OUT to Lufthansa Airlines for getting my mom back from Portugal and into this room to see me today.  It was not a great place for her to be when this hot news broke.  I know she's exhausted, but it was so great to be in the same room with my person again.  Savored my visit with her and loved getting to be loved like only a mama can do.

5) SHOUT OUT to Cheerios and milk and yogurt parfait and bananas and leftovers from that church lunch.... I am grateful to not be nauseated and to be able to get some food down and energy up.

6) SHOUT OUT to codeine cough syrup.  The cough (and cough + fluids to be real) has been my biggest challenge and finding a combo of meds that seems to help with that is giving me hope that I might get some better rest tonight.  The adrenaline is wearing off some and the steroids are being D/C'd, so I feel like I'm switching gears a little to a more maintenance jogging pace than the initial sprint we started with.  

7) SHOUT OUT to Golden Girls.  When you can't sleep, they're always on.  Never take it for granted.

8) SHOUT OUT to low medical news day.  Things are pretty stable.  No huge side effects right now.  We're just going to keep trying to find some routine (hospital! routine! ha! joke's on me!) and develop some schedules for rest and renewal.  Pray I get some consecutive hours of sleep tonight and that all those meds are continuing to knock down COVID while also knocking out leukemia.  Double duty, here. 

I'm pretty behind on messages and responses and I know you all understand.   Keep them coming and know they mean so much to me.  You are the best village so SHOUT OUT TO YOU!