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.

Meals You Can Chew!

So the good news for today is that after around 48 hours of pretty persistent and high fever, I am finally back to fever free and feeling like myself again!  I'm on all sorts of antibiotics to help cover what it might have been, but it's just as likely that it was viral and we really will probably never know.  But it's gone and I'm feeling better so that's great.

Today's new symptom was a raging attack of Acid Reflux.  I've had reflux for most of my adult life and been on various and sundry medications for it over the years (and you can always count on me to have a tums in my purse).  But I was on a pretty big health kick the last year.  Many of you have noticed that I lost over 42 pounds between my 41st and my 42nd birthday.  That was weight loss the hard way - through intentional diet and exercise and lifestyle changes (and some help from Noom!)  The weight loss had nothing to do with leukemia (in case you were wondering if that was why I was getting skinnier, nope! I get all the credit for that hard work still!), but it did resolve my reflux almost completely.  So I had not been taking any reflux meds when I was admitted.  

I don't know why it didn't click for me sooner that many of the uncomfortable symptoms I was experiencing (dry hacky cough, chest pain, great difficulty swallowing any solid foods at all, metallic taste in my mouth, etc.) were all Reflux Related.    But my very favorite resident Dr. Kalada helped me put that together this morning and we are adding in a couple of good reflux meds.  So I'm already experiencing some relief from that and looking forward to some meals I can chew in the future!

Five Good Things!

1.  I had enough strength today to finally open up the big stack of cards that had accumulated.  And I mean it when I say "BIG STACK OF CARDS."  How one person could be the recipient of this much love blows my mind.  And there's already another whole stack to match this one!

2. My girls continue to have a great time at the beach.  Even though I miss them terribly and they miss me, we have the ability to video chat and text with each other and the pictures of them in their happy place make me happy.  I hope their spirits are having some healing.  Here they are on Friday with my Uncle Buddy (mom's brother) and Aunt Katharine and Sweet Mama.

3. That weight loss I mentioned above.  I'm pretty proud of it.  I am coming into this battle in the best shape I've been in since having kids.  Here's a side by side from my 41st vs 42nd birthdays.  

This whole thing is gonna wreck my body in a lot of ways, I know.  But I hope this is a reminder for myself that I can do the hard work, have the discipline, to reach the goals I set my mind to.  I've done it the past year and I'll do it again!

4. A Shower (no picture; you're welcome).  It's a whole big production to shower here, but it's always worth it.  I had an extra long one today and it felt so good.

5. Chick Fil A milkshake delivery from my evening guest.  (Once the girls are back in town it will be harder for Robert to visit during the dinner/bedtime hour, but we've really enjoyed the chance to just chill out together and connect in the evenings the last few days.  He's my biggest cheerleader and keeps repeating over and over and over again "What my baby wants, my baby gets."  He's really giving that 110% to pick up all the extra details that I usually manage while still loving me so well.  We do well together most of the time (good thing, since we're married), but we kinda excel during a crisis.  I'm thankful for him.

And I'm grateful for all of you who urge to me carry on!  Thanks be to God.

~ Chrissy

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.