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!
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!
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.
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.
I woke up this morning under a heavy blanket of
sadness. I knew what had happened last
night, but had gone to sleep still hoping there would be something different,
that I’d reach for my phone and see that there had been some terrible computing
error and all the firewall states had managed to flip. I was firmly in denial. But it only took a few seconds in the
darkness before daybreak to realize how very real this was. And the sadness violently overtook me. I was sad for many varied reasons, but what
my tears start to flow was knowing that my five year old, still sleeping in the
next bedroom, would come bounding into our room soon and that I would have to
find words. I voted for Hillary
Clinton (not against Donald Trump, but proudly and enthusiastically for Hillary Clinton) for a lot of
different reasons, but one of the main ones was that she believes in children
and families. I believe in children and
families too. And my greatest sadness
came today in worrying about all of our kids.
In no more than a whisper, as if louder words might
just be too much, I found some way to begin explaining to my daughter that we
were sad that the election hadn’t turned out the way we’d hoped it would. We were heartbroken for the many people in
our country who will feel today that they don’t belong or they are not
valued. I could assure her that she was
safe and loved and okay (because of our privilege) and that we had work to
do. I told her that it is our job to love people –
all people – the very best we can.
My tears flowed most of the morning and my thoughts
continually returned to the children. How
will we repair this damage? Our actions are
louder than our words; how will they grow up to be the kind of compassionate, fierce,
sensitive, courageous, gracious, smart, loving and kind people we want them to be when
we have just endorsed the polar opposite?
How will we show them it’s okay when we are struggling to believe it
ourselves? How will we channel our fear
into action and our uncertainty about the future into resolve?
I dropped my younger daughter, two and a half years
old, off at preschool a few hours later.
We got out of the car and I rushed to carry her into the building,
afraid to look other people in the eye and unsure of what trust looks like in
this new day. As I continued to wipe
tears from my face I heard her say with complete sincerity, “Mama! What a beautiful day! Look, it’s sunny! See the pretty leaves?” Today is no different for her. She still basks in God’s creation,
unchanged. Complete and total innocence
protects her from the conflict and drama raging in her broken country. And for the first moment today I thought: Maybe
the children will be okay. And if they’re
okay, we will be too.
I received hugs from dear friends who shared my shock
and sadness. I stumbled through a Bible
Study with other moms who struggled with me to keep focused on Paul’s
words. And then I went and spent the
afternoon at my kindergartner’s school.
I watched children helping other children in the classroom with learning
tasks and personal needs. I watched
children instinctively allow others to go ahead of themselves in line because
they wanted to extend a gesture of kindness.
I watched teachers pour out into their students with love and
commitment, the same as they do every single day. I watched laughter and smiles and joy. And I thought: Maybe the children will be
okay. And if they’re okay, we will be
too.
I ended the day back at church. I lead our children’s Wednesday night programming
and over dinner we always share our celebrations and concerns. I knew that it was likely that one of these
kids would bring up the election results during this time and after the pressing
matters of Panther’s scores and upcoming travel plans, and a classmate’s friend’s
neighbor’s uncle’s pet…. It did. A
second grader started, “Donald Trump is going to be our next president….” and
some of the other kids began to boo and gesture ‘thumbs down.’ I cut them off quickly and repeated some of
the same words I’d said to my own child this morning. “It’s okay to be sad. But we will remain respectful. It’s our job to love people extra hard.” And I asked them how we do that. This is what they said:
We can help other kids who are having a hard time.
We can write letters to people in the military and encourage
them.
We can give hugs.
If someone has a disability, we can help them reach
something or push their wheelchair or tell them that they’re doing a great job.
We can give food to people who need it.
We can be a friend to someone who is lonely.
We can take care of our earth by not polluting.
We can make sure that no one feels left out.
We can draw pictures to cheer people up.
We can stand up for someone we see who is being
bullied.
Hands shot into the air and with no prompting, one
after another, they said these things and more.They knew what to do.They were
excited and willing and eager to do it.Then, one child raised his hand and said, “We just need to follow the
golden rule.Treat others the way you
want to be treated.”And they all agreed. It's true: The children will be okay.And if they’re okay, we will be too.
We finished eating and began tonight’s project –
packing boxes of Thanksgiving food for families in our community who might
struggle to buy extra groceries. They
wrote on cards “We hope this helps” and “We’re praying for you.” They filled the bags up enthusiastically and tied
bright ribbons around them. They get
it.
We have work to do.
The kids are telling us that we must take care of people who are
needy. They are telling us that we defend
those who are bullied. They are telling
us that we offer help and encouragement in our words and actions to everyone
around us. They are telling us that we
create a culture, one by one, where no one is left out. The kids know what to do. They are ready to do it. And I’m ready to join them.
I woke up this morning, worried about our
children. I go to sleep tonight,
encouraged by them. "Don't get tired of helping others. You will be rewarded when the time is right, if you don't give up." Galatians 6:9
It's been over a year since I've posted anything which almost always means that we're doing well and that life is simply full and busy. It's both, but also very joyous.
When I first started writing regularly in the blog, after Clara was born, I used to imagine a day when she (and any other future children) might be able to be contributors. It may be awhile before Clara is typing her own essays, and who knows, maybe she won't ever have any interest. But I thought it would be sweet to share these pages from her summer journal after we returned from a long weekend in Charleston.
The literacy teacher in me is delighting in watching my own child develop as a reader and writer. These are precious moments that I've watched in other people's children countless times. Getting to see the baby I've read hours to in my lap and the child who was - it seems like yesterday - just scribbling with a crayon on paper now writing complete stories is a new kind of magic.
So, here's Clara's first blog post, along with a handful of photos from our time in the lowcountry last weekend.
(Last weekend we went to Charleston to visit Rick and Charlotte and JJ. I liked catching blue crabs, swimming in the pool, going to the aquarium and kayaking with Daddy.)
