"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.