Many Hands Make Light Work

Guest post time! Robert here. Chrissy's worn out from being more productive in a hospital bed than most people are when firing on all cylinders, so you get the understudy tonight. 

But first, a brief medical update: Not too much to report today. Chrissy's about 24 hours into her second, more aggressive round of chemo. She had a pretty good morning today, but as of this evening, she's pretty tired. She's been getting woken up every 2 hours for eyedrops, and she's also started running another neutropenia fever. All the stuff we have been told to expect, but still not much fun, and very exhausting for her. 

Speaking of exhausted, let's get into tonight's post! We have a good Village, and boy do they show up for us. Today we had a dozen or so friends, mostly made up of dear friends from Knollwood Baptist Church, who volunteered their Saturday to come bake in the June sun and help us knock several BIG items off our to-do list. We weeded. We mulched. We pruned. We hauled. we replaced mailbox posts. I found a little worm snake buddy. We weeded and mulched some MORE. I can't believe how many things I was able to check off my list. Just another incredible way we are being loved on and supported by our community. Y'all are so good to us.

I meant to get Before pictures, but fate saw fit to make me spend that time trying to chase a groundhog out of our garage. (It's been a weird week). So here's some in-process pics and then some from the end of the day.

A huge thank you to everyone who helped out, and to everyone who has been offering their encouragement and love. Whenever I start to wonder how we're going to get through this, I always remember that it will be with the love and support of our people. We're truly blessed to have all of y'all.

The Goal is Still Cure; And Cure is Still Possible

Okay, folks.  The news is NOT GOOD. Let me just start with that spoiler and not sugar coat it.  We did not get news we were all hoping and praying for.  We're going to do a pivot and keep trying.  We are not giving up.  The goal is still cure and cure is still possible.  But the news is bad.

Information gained from Bone Marrow Biopsy

1.  So when they did the bone marrow biopsy they took out a rectangle of bone marrow.  They were measuring how many cells were in that rectangle and what type of cells.  In a normal healthy person my age, there should be about 60% cells.  In a chemo patient who has just completed the 7+3 regimen I did, we were hoping and looking for less than 5% cells.  I had 70% cells.  Too many.  And to boot - of those 70% cells, 90% are leukemia cells. 

So here's the takeaway: THIS ROUND OF CHEMO DID NOT WORK.  We will never know why; it just didn't work.

2. We also got the chromosomal/genetic abnormality typing that we were missing.  This will mean nothing to most of you, but for the scientists out there reading it's a translocation 6;11.  When we think about AML being divided into 3 categories "best outcomes," "intermediate outcomes," "poor outcomes," this one puts me in "poor outcomes."  So, it's not what we wanted, but it doesn't change: the goal is still cure and cure is still possible.  

Next Steps

So, we pivot!  This round didn't work and we need to get to Goal 1: Remission.  So, we're starting a whole new 2 week chemo treatment plan TODAY!  This is gonna get a little medical-wonky so it's for the nerds out there!

The new chemo regimen is called FLAG-Ida + Ven.  Here's a list of all those drugs:

FL=fludarabine (IV, once a day on days 2-6)

A=AraC (also known as cytarabine) - Any A+ students will recognize that this one was in the first regimen.  It's the "backbone" of this treatment and doses are way way higher than the first go round.  This will be given IV, once a day, days 2-6)

G=Growth Factor for white blood cells (Zarxio) IV, once a day, days 1-7

Ida=Idarubicin (this is in the same family as daunorubicin from the first go round, but slightly different.  We'll hope it works better).  Days 4-5 IV

+Ven= Venetoclax (oral med, once a day, days D1-14)

If you skimmed all that start reading again because I'm going to talk some English.  This is an extremely aggressive treatment plan.  It is the MOST aggressive thing out there.  We are grateful that I am young and otherwise healthy and I can handle this slurry because it's a LOT. 

The potential side effects are similar.  We'll work hard to control nausea no matter what.  There is likely to still be: fatigue, weakness, low blood counts, loss of appetite, need for lots of blood products, and probably more of these neutropenic fevers (forgot to mention I've been fevering again since last night.....low grade this time. We're running cultures.  This is just what's gonna happen). Possible mouth sores.  Plus a handful of rare scary ones we aren't going to mention.

So, we're marking TODAY, JUNE 16 as DAY ONE of Induction Phase Chemo-B.  

We also know from these results that after we get to Goal 1: Remission, we will definitely need a bone marrow transplant.  So, Goal 1: Remission, Goal 2: Bone Marrow Transplant. The timeline is squishy of course, but maybe late October, early November for that.  The best donors are under 40 so they've already alerted the transplant team and they'll start doing what the need to do to find a match when we get there.  The goal is still cure and cure is still possible.

Prognosis

So, I asked for some prognostic statistics about all this info.  The genetic/chromosomal abnormality Translocation 6;11 that I mentioned above still has a 40-50% chance of cure (with bone marrow transplant).  The Hardys have stared down worse statistics before and come up winning.

And the chemo regimen that I'm starting has been studied at MD Anderson Cancer Center in Texas and in patients who were refractory to the 1st round (meaning the 7+3 didn't work, like with me), they saw 69% of patients get to remission with the FLAG-Ida +Ven.

So there is some hope on the horizon and we will cling to it.   The goal is still cure and cure is still possible.

I will be here at the Cancer Center for at least four more weeks.  It will be two weeks of this chemo and then approximately two weeks of letting my counts recover so I can go home safely.  That's mid-July at least and later than I was hoping for, but I will put my big girl pants on.  We gotta do whatever we gotta do to get to Goal 1: Remission.  In three more days, my COVID protocol will end and I'm hoping that will feel like a game changer.  I've been promised a move to a big corner room that the nurses make sound like a Penthouse suite.  And I can walk the halls with my pole and go to Recreation therapy and just experience a bit more freedom.  

All we can do is pick ourselves up, pivot and take the next small step towards the goal.  I'm grateful to have you all alongside me, cheering me on.  It helps me keep a positive attitude even on days when the news is undeniably bad. 

Let's beat this thing. Go for Cure.

P.S. If you're 18-40 and want to be added to the Bone Marrow Registry you can click that link. You may not match with me, but you might match with someone else who needs bone marrow, too. 

10 Things I Miss

 

10 Things I Miss:

10. A chunk of bone marrow out of my right hip.  I don't actually miss it, but it's gone.  Everything went well with procedure today.  I was more awake (as in, I was awake) than I anticipated but some long slow breath prayers ("God around me, God within me") got me through with really no pain; just discomfort.  And it was pretty quick.  We'll get results around 3:30 tomorrow afternoon.  Whatever they say (Choose Your Own Adventure Plan A or Plan B) we just want to do whatever we have to do to get to REMISSION.  If that means another month here instead of two weeks, then sign me up. 

9. The outside world.  Because I was admitted with COVID (Thanks for catching my leukeumia, COVID!), I've been on a 21 day lockdown.  Getting rolled down to CT today for the procedure was the first time I had left these four walls since I was admitted. It was like a field trip!  But on June 19, my 21 days will be over and they can move me to a bigger room and also I can start taking my pole for walks around the unit.  I'll be able to go to the art and rec classes and just explore a bit further.  I am so excited.  And your texts and messages with glimpses of what you and your families are doing in the outside world bring me cheer and help me imagine what's beyond the walls, so keep those coming. 

8. Movement.  Before the diagnosis I averaged at least 11-12k steps a day and I was doing yoga 3-4 days a week and swinging kettlebells.  Now, I don't break 2k steps a day.  Last week I had 10k for the WEEK (not the day!).  My muscles and joints feel the hours of sitting in bed and I'm stiff and just miss moving my body.  I can't wait to be able to start increasing that step count again, bring my yoga mat to a bigger room and start building just a little strength back.

7. My stuff.  Since this was an emergency transport admit straight from the ED, I did not get to pack for this vacation.  Every day there's something I think of I wish I had, but the effort to explain to someone in my family where I think it might be so they can find it and ferry it over here is getting old.  My room is cozy, I have all I need, but I miss the comforts of home and having all my stuff nearby.

6. Regular work. Because I've felt pretty good, I've been able to keep working from the hospital.  But since I can't really ATTEND any of the events that are scheduled this summer, "work" looks like typing out super detailed sub plans so someone else can do my job for me.  And it looks like Zooming into a staff meeting instead of sitting around the table.  And it looks like asking people to do stuff for me that I wish I could be doing myself.  I'm grateful I can keep working and I'm grateful for amazing team of staff and lay leaders who will carry the baton beautifully.  But I miss regular work.  And I wish I could be at the things and do the things myself.

5. My bed.  I really love my bed.  It's a good mattress.  I like my sheets. My pillows fit just right.  I sleep good in it.  I've brought pillows and blankets and quilts and all kinds of things from home to try to make this bed feel good, but guess what?  It's a hospital bed.  It's awful. I miss my bed.

4. Simple showers.  Showering is like my big main event of the day.  I have to unhook from my IV pole which sometimes requires very strategic planning between blood products or meds as to when I can take a break.  Then, I have to wrap my PICC line up in plastic so it doesn't get wet.  Then I shower (in a shower that is not my shower and water gets all over the floor because the curtain isn't big enough).  And then after the nice hot shower I have to dry off and wipe down my whole body with these antibacterial wipes for infection.  So then I'm cold and shivering again.  Get dressed. Try to do something with this short hair I don't know how to handle.  Get back in bed.  The whole thing wears me out and I often need a nap afterwards.  I miss simple showers.

3. My hair.  I miss my long hair.  I still just can't get used to this haircut and it just doesn't feel like me.  And as of today, it's starting to fall out.  Just more plentiful single strands and maybe an occasional small chunk, but I can tell it's starting.  So pretty soon I'll literally be missing all my hair.  Hard stuff.

2. Enjoying food.  Eating (sorta like showering) is a chore.  I have to be really intentional to make sure I even remember to eat because I have literally no appetite.  And then food doesn't really taste quite right.  And I am still struggling with reflux so I'm having a hard time getting anything down that's not just soft or liquid foods.  So lots of yogurt, soup, applesauce, protein drinks, etc.  I love food more than just about anything in the world and not being able to enjoy it  - and for it to feel like LABOR - is a bummer.  Also, I as a subcategory, I miss coffee.  I'm always a 2 cup of coffee in the morning with my quiet time and I can't stomach the thought of a single sip of it.  I miss wanting coffee!  We're going to consult with speech and see if I need a swallow study or something.  And it's improved a bit with reflux meds, but I think eating with chemo is just not fun. 

1. My family.  I love my family even more than I love food.  The girls got back from the beach today, but we're questioning whether they have any symptoms and whether it's safe for them to come visit or not.  It feels a little pandemic-y all over again but with MY PEOPLE.  I miss my people.  They miss me.  It breaks my heart. And when I say I miss my people, I also miss my puppy.  I can almost feel Otis' soft ears and his neck skins and the weight of him curled up in my lap.  I really miss my family.

This list is to balance out all the gratitude.  There's plenty to be grateful for, for sure.  I'll go back to appreciating all of those, I promise.  But I want to be authentic and real, too, that this is not fun or easy.  I can try to have a good attitude, but the reason for that intentional attitude is that there's a lot to overcome.  So, I want you to hear that, too.

Tomorrow mid-afternoon for additional bone marrow biopsy results and a plan.  If the plan is more chemo, we'll probably start it right away tomorrow. 

For photos let's just share all the Otis.  He's the cutest guy in the world. I mean, seriously:

aforementioned puppy ball in lap

And here's one that makes my heart want to explode.  I have three retired men on my street who walk every day around 10:00. And for the three years we have had Otis, he barks at them when they walk.  He is not nice to them.  He will not shut up.  But they've started coming and getting him and taking him with them on their walks now and I *think* he's learned to like them and he's also getting exercise and a break on long days and the sight of the three of them walking him is just so sweet and dear and one of many villaging moments that makes gives me so much joy.  (So, I did slip some gratitude in there, too.)

Isaiah 46:5  Even to your old age {leukemia days} and gray {missing} hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.

Thanks be to God.

Fifteen Years

 Fifteen years ago:

That was a beautiful night (even with the thunderstorm).

Tonight we'll eat some Thai takeout in a hospital room and live deeply into those vows in every way. 

That will be a beautiful night, too.

Thanks be to God.

Choose-Your-Own-Adventure

Today has been a pretty calm day, medically speaking.  Still just running lots of antibiotics and tweaking meds a little here and there.  I got some more platelets.  I'm feeling pretty okay.  Even Zoomed into the weekly staff meeting:

(See all my files behind the computer?  You can take the girl out of her office, but.....)

So, let's take today's blog to look ahead just a little.  If you remember from our previous SCIENCE LESSON, I received what's called 7+3 "Induction Chemo".  That's seven days of cytarabine and 3 days of daunorubicin.  That finished last Friday, June 9.  I'm also taking an oral trial drug called selinexor and it is given on Mondays and Saturdays for 6 doses.  So even though I'm not really actively "getting" much chemo, the drugs are in my body doing their thing. My chemo side effects are likely to start to peak around the end of this week/early next week (like hair loss; hopefully not nausea).  

On Thursday, June 15 at 9:50 AM I will have another Bone Marrow Biopsy (BMB).  The first one was done bedside and if you recall my bones were too awesome and we didn't really get any useful marrow.  The one this Thursday will be done under sedation and in CT so they're really sure to get everything they need.  This will be the big piece of data we need to determine how things are going and what we might need to do next.  Those results should all be back by Friday, June 16 so we can make decisions before the weekend.

Choose-Your-Own-Adventure* Plan A: We're satisfied with what we see in the BMB  and decide no further chemo is needed right now for the induction phase and I have about another two weeks in the hospital to let my counts come back up and stuff and could be discharged by July 1.

Choose-Your-Own-Adventure* Plan B:  We decide to go after that cancer a little bit harder with some extra rounds of cytarabine and/or daunorubicin.  In this scenario, we're looking at another 4 weeks in the hospital with a discharge around mid-July. 

Once I'm discharged, I'll have about a week and a half off before we do what is called a "Recovery BMB."  So under Choose-Your-Own-Adventure* Plan A we'd get those results around mid-July.  We'd be looking for the word "remission" there. Let's claim it!

If I am in remission, then we might start two rounds of what's called "Consolidation Chemo" (or "Booster Chemo").  Again the details will all come later once we have that good data from these future BMB, but those are generally six week cycles where I'll only be inpatient for about 4 days getting chemo, but then be discharged and able to be home some during each cycle as long as there aren't complications or infections. 

So we're now another 12 weeks out....mid/late October.  We might be looking at the possibility of a Bone Marrow Transplant around then.  If we go that route, it is another month in-patient.

We'll go on like this as long as we need to in order to keep hearing the word "remission." 

And after 5 years of being "in remission" AML patients are considered cured.  (Here for it.)

So that's the long range view, the best we know it for now.  Not much to do or say until we can get to Thursday's Bone Marrow Biopsy.  I'm anxious about it, both for the procedure itself and the information and results it will give us.  But once we have that info we can choose the right adventure for us.  

Between now and then I appreciate your prayers....

-Obviously it would be great if we get to choose Adventure Plan A.  I'd love to be breaking out of here before Independence Day.

- That the procedure itself will go well on Thursday. 

-That my nerves will be calm (the sedation ought to take care of it, but I'm skeeeeered.)

- That the info we get from BMB gives us lots of information about my sub-type and overall prognosis going forward (and that it be good.)

WHEW! That's quite enough science for tonight.  Thanks for hanging in on this Choose-Your-Own-Adventure* 

~Chrissy

*You don't actually get to choose at all.

P.S. You knew I wasn't going to leave you without any beach pics, right?

Thanks be to God. For all of it.