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 Cytarabine.  Four more days of the continuous Anthracycline 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!

CHEMO DAY 1!!!

It was a nice, slower and more relaxed day today (I'm remembering the different hospital rhythm of weekends!)  But the best good news is WE STARTED CHEMO!  So I got the standard care formula of IV Chemo 7+3 plus the bonus trial drug, too.  One of those is running continuously 24/7 through IV, so I'm pretty tethered down.  No side effects yet, but that's not unusual and it doesn't mean that there won't still be some at any point going forward.... we'll just wait and see!  

COVID is still hanging around too, so even though we're doing everything possible to treat it, I've still got lingering congestion and a super annoying and obnoxious persistent cough.  But my energy and spirits are good and I was able to have a few visitors today, including the girls bringing Chick Fil A lunch and getting to see my incredible in-laws who SWOOPED up from Georgia as soon as they heard the news to help out.  So that was a treat! 

Still really limiting visitors in general though since not only do I have COVID, but I have really no immune system and need to not add any more germies.  So while I'm super duper grateful for all the offers for visitors and will hopefully be able to take you up on some of those going forward, we're also needing to keep the visitation policy right now to "By Invitation Only."  Not personal! 

They weren't really able to get a lot of marrow out of yesterday's biopsy (Remember, strong bones?) so they'll get the info they would have gotten from that biopsy from regular blood labs instead, just not as fast.  We'll do the next bone marrow biopsy in CT with some light sedation  in two weeks.  

I think that's all I really need to share tonight.   These posts will definitely shorten as there is less to "figure out" and share, but know that I'm grateful for your continued prayers, words of encouragement and comfort and offers for tangible love.  We're figuring things out.   

Dear friend brings early morning coffee.

First handful of that trial chemo!

Happy Chemo Day!

Family shot with that chemo pumping in the background!

Mama K and Daddy Bob stopped by too!

Five Good Things

 So, I'm going to try to distill today into a few - Five - Good Things.  (and maybe a few complaints interwoven too, to keep it real)

1. The girls got to come visit after school!!!!!!  It was really really really REALLY good to give them snuggles and hugs and let them see me while I'm pretty healthy and see my room and my beep boop pole and my room service menu and just get to be in my space.  We talked about their days and how their amazing teachers and friends had been helpful and kind to them and we watched the Netflix show we've been watching together the last month or so, called Alexa and Katie, which serendipitously is a teeny bopper show about two girls starting high school who are best friends and one is going through cancer treatment.  It was already in our rotation and helping to build their understanding of cancer and treatment in a very non-threatening way that we could talk about.  So if you have (upper elementary/middle grade) kids in my life who you're trying to help explain Mrs. Chrissy's sudden change to WORST SUMMER EVER, you might enjoy watching that with them, too.

2. I took a shower.  And shaved. And removed stickers and tape from my body.  It was a very hot shower.  It was a delight.  And then there were clean sheets.  Say no more.

3. I really wanted to get that bone marrow biopsy over with so I'd be less anxious and worried about it since they'll be a regular part of monitoring progress during treatment.  Even with the gentle buzz of Ativan and despite lovely, kind highly trained and capable people, my bones were simply too strong.  The one working on me said, 

"I have done this for 39 years and have never seen such strong bones.... Do you walk a lot?" 
"Yes, I do.  And take calcium and vitamin D and do yoga and lift weights." 
"Well, no wonder we can't get into this"

So, they went to the drill, but still had a hard time getting exactly all that was needed.  Hopefully enough to get us started and the next time we're gonna do it under sedation.  I'm using this opportunity to not complain about how painful it was and how sore it has left me, but to instead highlight how HEALTHY and FIT and STRONG MY BONES are.  Are you listening, AML?  And I'm glad to have it done because....

4. Two great conversations with Dr. Bhava today are only continuing to confirm what a great oncologist she will be for me.   We got the bone marrow biopsy done but will still be a bit before we get all that data, but we still have A PLAN and CHEMO STARTS TOMORROW!  So I'll do a 28-34 day in-patient cycle where we'll be doing two IV drugs: daumorubicin (once a day for three days), cytonabine (continuous for 7 days) and then a third experimental trial oral chemo (selinexor). This is already FDA approved for use in other cancers and is showing high efficacy with AML in these trials and because I'm so young, strong, fit and healthy (keep hearing that; doesn't hurt my feelings), I qualify to add it to the standard care procedure in the first two.  Let's raise those remission prognosis stats!

4. I have heard and reconnected with SO MANY folks today.  Boy, send out the bat-signal and you people SHOW UP!  It was not quiet around here today so I haven't read every one, but I will.  And even when I can't respond to each, know how meaningful it is to Robert and to me to be encouraged by you and surrounded by you. 

5. COVID is improving daily.  Still a nagging cough, but my strength and energy is much better so I'm ready to move toward the next phase of treatment.

A complaint:  This blogger interface is old and dated and I am also old and dated (when it comes to technology; NOT old and dated when it comes to leukemia thank-you-very-much).  So I spent some time trying to figure out how to update the subscription feeds and I just can't figure it out.  I've got to learn a lot about oncology right now, my IT certification will have to come later.  If anyone has a quick and easy solution you want to throw my way, let me know.  But all our other family history lives here and I'm not interested in changing to a different platform.  In the meantime you just might have to bookmark thehardylife.com and check back in the evenings to see if I've bragged any more about how healthy and fit I am?

First and foremost (VOLUME UP), I think we got a new theme song.  Start learning your choreography, Team.

What a LOVELY gift basket from my KBC people!!!!  So many great snacks and fruits and it will be immensely enjoyed from my highly contained hospital prison cell room.

Snuggles, cuddles, balloons smiles and watching our show, Alexa and Katie on Netflix - go check it out.

Let's GO Chemo Day 1 tomorrow!!!  We are ready to do this!

"Now We Got Bad Blood"

Whew! Dusting off the 'ole blog which can only mean we're back at the good 'ole Baptist Hospital.  But this time it's not Clara; Mommy is getting a turn at being the patient.  I've just been diagnosed with Acute Myeloid Leukemia.  Some of you have heard bits and pieces along the way the last few days, but I was really trying to get a better picture before I shared more widely and completely.  And although I've always had some mixed feelings about this blog, it's the easiest way to update people en masse.  Tonight's post will be lengthy while I catch you up to speed, but I'll try to give much briefer updates going forward.

Timeline:

Saturday 5/27 I started feeling puny.  Kids and Robert had had colds and tested negative for COVID at home over the past couple of weeks, so I didn't worry too much.

Sunday 5/28 I woke up feeling worse, but tested for COVID myself before going to church.  Came home from church and stayed in bed until

Tuesday 5/30 I made a doctors appointment because I was feeling so awful.  I hate going to the doctor.  She swabbed and tested for everything and it came back COVID positive (apparently the home tests now are 30% accurate so not super helpful).

Wednesday 5/31 I got really weak, was having trouble staying awake and desatting in the 80s with any movement.  A physician friend came and checked on me (how brave!) and suggested a visit to Davie Medical Center ED for fluids and oxygen which I did (how brave!)  They took bloodwork there and began to piece together that COVID was hitting me so hard because I had basically no platelets or hemoglobin and my white and red blood cells were behaving in ways to indicate leukemia.  They immediately transferred me to "Big Baptist" oncology suite where we've since been trying to learn more (and get me better!)

Interventions & Procedures:
So many blood and platelet transfusions
Lots more IV fluids
Antibiotics, Antifungals, Antivirals, Steroids, Potassium, plus who knows what else I'm forgetting
One zillion sticks and draws and one shiny new PICC line ready for chemo soon! (And an end to sticks)
An echocardiogram
Head and chest CTs
Lots of meetings and conversation with doctors, residents, med students, dieticians, nurses, and more!

Still pending for tomorrow morning: bone marrow biopsy.

Got to meet the attending oncologist tonight and get lots more info like an official diagnosis: Acute Myeloid Leukemia.  This is the most common type of adult leukeumia (average age is 65 and y'all I'm 42. Overachiever much?).  It is treatable and can be curable.  Cure will be our goal!  I AM SO YOUNG!   I WILL DESTROY IT!   There are many paths and variations within this type and the biopsy tomorrow will give us more information about what path(s) to take, but we will likely have a 4-6 week hospitalized chemo round starting this weekend followed by three more rounds of "booster chemo" done mostly at home, but with a few in-patient days for each cycle (4 weeks each; 2 weeks between).  We don't know yet whether a bone marrow transplant or stem cell transplant will be recommended.  Tomorrow's biopsy will tell us more about how aggressive a path we will need to take based on the gene/chromosomal abnormalities of my particular AML.

Dr. Bhave is brilliant and kind and patient and an excellent teacher and I already trust completely that she'll provide excellent care.  

I got to talk with the girls on video chat tonight.  I hadn't seen them since they left for school Wednesday morning (kudos again to the village for picking them up from school and keeping them for a surprise overnight while we were at the hospital!).  I gave them a brief rundown of the sickness without using many buzzwords (especially with Eloise) like cancer, leukemia, chemo.  That will come..... They each took it as I expected that they would.  Eloise began singing Taylor Swift

Clara retreated and became quiet, but has texted me questions tonight and I've given her a little more info as she's asked.  She knows that in this family, we beat medical obstacles and she'll be my inspiration to fight for that cure every step of the way!

Fortunately, their summer was overscheduled anyways and they'll still get to attend all their same camps, overnights and trips.  Grandparents have been amazing, as always, and our community of friends and family has only grown over the past twelve years so we're so grateful to each of you for reaching out in love over the past few days as you've heard news.  Now that I have my laptop at the hospital, it will be easiest for me to update this blog when I have news to share, so feel free to subscribe, share with friends, or whatever it is people do to blogs created in 2010.  

I'm glad to have a diagnosis, a skeleton of a plan (oh, how I love plans; it's gonna be hard to remain flexible and go with the flow) and to - for now - be feeling so much better from the treatments I've already received.  Onward! 

Let me know what questions you have and I'll try to answer them tomorrow....

These are not the most fun photos, but they are ACCURATE!  Maybe I'll share one with me smiling tomorrow. :)

Baptist ED

First Ambulance Ride! (I didn't get to go with Clara on her birth day.)

So. Many. Sticks.

Bright and shiny PICC line so many fewer sticks ahead.

Hardys in Social Isolation

Every year I pay a $20 renewal fee to hold on to this domain name, but I haven’t written and posted anything since the day after the last election.  It’s been strange times in our world these past three and a half years; I’ve been working in a church which is more publicly visible and have kept some parts of my family’s life less public.  It’s easy to post a quick photo or two on Facebook, but I’ve not been in the habit lately of writing in the style that I did when I kept this blog up regularly.

But we are living in a really different world right now.  The coronavirus pandemic has swept our country and in what feels like both no time at all and all the time in the world, our lives have ground to a halt.  School is out, work is from home, grocery is drive through pickup and any interaction with people outside of our family is through a screen.  I couldn’t have imagined this reality if I had tried.

I’ve coped fine – as well or better than most, I imagine.  We made a decision from the beginning to include my mom, Sweet Mama, in our family unit of five and she’s provided immeasurable support with homeschooling kids and companionship.  Our kids are good at playing.  They like each other and they like to be outside.  It’s been the most beautiful spring.  Our home is comfortable and safe and I still have a job and thus health insurance.  Robert isn’t allowed into nursing homes where he sells and fits splints and orthotics, but a friend of ours with a local business has given him some temporary work in construction so he’s still able to bring in some income, too.  We’re okay.

I’ve had my moments though.  I suspect that we all have and will during this time.  It’s a familiar sensation, this kind of trauma.  The ways that you feel both extraordinarily blessed to be healthy and safe and have resources but also so very guilty for also being tired and overwhelmed and irritated about things that are probably trivial.  We aren’t built for life like this and no matter how good we’ve got it, it can be really good and also really hard.  Because I suspect that life like this may go on for longer than we anticipate or hope or imagine, I have been thinking about what I need to do to maintain balance and connection and self-care for me.  Sure, there’s exercise and cooking healthy meals and indulging in a long bath every now and then and turning off the news when it’s too much and doing yoga instead.  But I was reminded (thanks, Sweet  Mama) that through nearly every significant crisis in my life the way I have coped the best is to turn to the page. 

So here I am, writing in this way for the first time in a long time.  It feels a little self-indulgent and maybe overly transparent.  And knowing me, it won’t last forever.  But for this season, thanks for indulging me in an outlet for processing and coping and a way to look back and remember what a unique moment in the life of our family this pandemic is. 

For now, I have to go finish cleaning out the bathroom I started.  They say projects are a good way to cope, too.