June 29, 2023

A Post Just About Woodworking and Definitely Not About Anything Else

I have a small woodworking project I'm working on. It's the kind of thing that you can buy for a reasonable price and it'll be perfectly functional and attractive, but I've been very up front with this audience about my stubbornness in doing some things myself. At any rate, this is a good project for me and it will have a lot of sentimental value if I make it instead of buying it. But that project is not what this post is about. 

We're at my parents' house this week, so I had to bring my workshop with me. For my project, I brought two boxes full of all-analog woodworking tools: dovetail saws, crosscut saw, tenon saw, bench chisels, mortise chisels, hand planes, marking gauges, dividers, the works. I figured I would find somewhere to set up a temporary workshop. Turns out my dad was telling their across-the-pasture neighbor that I was going to try to do this in their carport, and the neighbor extended the offer to use his workshop. It was a generous and helpful offer so I accepted. It happens to be extra special because the neighbor's house used to be my maternal grandparents' house, and the workshop is the very workshop where I spent many a childhood hour marveling at Papaw's skills as a woodworker, and where I learned my first lessons in the craft.

Even better still, this workshop has an actual cabinetry workbench. Now when I say "workbench," I don't just mean a table in the garage you don't mind scratching and banging on. In woodworking, a workbench must be sturdy, flat, level, and most importantly, it must have some method of holding the work firmly in place. There are several different ways of securing your work: bench hooks, holdfasts, crochets, battens, etc. But the most common work-holding apparatus you'll find in workshops worldwide is the vise. This workbench has what's called a "tail vise," which moves in and out at the end of the bench by turning a large threaded rod.

Let me take a moment here and acknowledge that I'm aware most of the eyes reading this are glazing over. If you're not into this, re-read the title of this post and you'll find that I'm as good as my word. But this stuff really is fascinating for a certain type of mind, and if you're one of the people who isn't bored by halfway-competent prose about old timey trades, you absolutely should read this book. I'm well aware that the woodworking minutiae is me really letting myself lean into the early-forties dad vibe and I've accepted it. Moving on.

The workbench available to me was most likely purchased as a kit and assembled on site. It's mass produced, but sturdy and flat. It wasn't made to be pretty, and the wood it was made from was cheap and functional finger-jointed stock. They sell similar benches at Harbor Freight and Northern Tool and the like. It's nothing flashy, and there are thousands upon thousands of nearly identical workbenches in garages of weekend wood warriors across the country. But it is sturdy, it is flat, it is level, and it has a mechanism to hold the work securely. 

I brought some oak stock that I'm using for this project, and it actually was harvested from the big water oak that used to stand about 75 yards to the north of this workshop. That's not really pertinent to the post, but it is pretty neat. So I got some of that oak out and went to clamp the first board in the vise, itching to get my hand planes singing away on it. I turned the handle, tightening up the vise screw, and "CRACK!" 

The benchtop's tail apron (the piece to which the tail vise is anchored) suddenly and catastrophically failed. 

Nobody would have ever noticed before it broke, but one of the tail vise's anchoring screws just happened to be positioned right in the middle of the lumber's glued finger joints. In retrospect, it makes sense why it broke, but jeez, what are the odds of the screw going right through there. It's frustrating, especially when you've got big plans for getting some good work done on this project. For every one of these benches where the glue joint lines up just so with a screw hole, there are probably 200 where it's not a problem. Oh well, luck of the draw I guess. Though if I were standing in front of the manufacturer I would definitely complain about the quality control.

So there I was with a table. But I need more than a table, I need a workbench. This table was sturdy, flat, and level. But there was nothing there to grab hold of the workpieces. Nothing to keep the work secure and steady. A vise without something to anchor to can only hold one side of the work. Without a way to hold everything firmly and steadily, this was just a table.

But this project is important, and it's not one I'm willing to outsource. So I assessed my resources, and formed a plan. I did not have the type of wood I would prefer for this fix, so I used a scrap piece of construction lumber. I didn't have the right size drill bits for the threaded rod or the alignment pins, but I had a wide variety of other tools and some resourcefulness. I didn't have enough time to be dealing with this particular problem, but I have a project that needs to get done and I couldn't start working on it until I cobbled together a fix to get to the next step. 

I used the broken piece as my guide, reverse-engineering how it was attached and how it worked to anchor the vise. I measured out the dimensions onto my scrap lumber and got to sawing, drilling, chiseling, squinting, test fitting, etc. And eventually, something functional emerged:

It wasn't (and isn't) pretty. It was an awkward fit because it wasn't the exact same dimensions as the original tail apron. It wasn't even the same species of wood as the rest of the bench. But I reinforced it as well as I knew how. I put decking screws in it everywhere I could possibly fit one. It was time to put a little force on it and see how it held up. If I'm being completely honest, I'm surprised at how well it worked. I still had to do a lot of resetting and fiddling, but eventually I got it to where it seemed to be holding the workpiece pretty well. And I finally got into a rhythm and by golly I made one flat piece of oak by the end of the day. This project is going to get finished.

Granted, this was not a high-end fix, and if this bench is to get used heavily in the future, it's likely a more elegant repair will be needed. But it's functional for now, and for the near future I think it's gonna hold.

(tip jar)

June 27, 2023

We Want More

One of the things I've heard often in the past week is that the world didn't get enough Chrissy. Preachin' to the choir, buddy, trust me. 

Well, it just so happens I have come up with a way to do just that. No, it doesn't involve a pet sematary or any other such necromancy. Here's what I mean: I've had numerous times in the past week that I've heard a story about Chrissy that was brand new to me. And each time, it felt like I was getting a little bit more of her. Getting to see her again from a slightly different angle. Getting to know her a little bit more fully. It's been such a gift. A fella could be forgiven for wanting to experience more of that. 

So that's tonight's ask: if you've got a Chrissy story and you think I might not have heard it, please send it to me. That's it. I promise I won't publish any of them without getting your consent first. This is a public blog, so I'm not going to blast out my personal email address to the universe, but if you knew Chrissy, you probably know how to get in touch with me, or you know someone who does. I will probably be sharing a few of my own Chrissy stories; a lot of those are just for us, but I've already thought of a couple that I can share without feeling like I'm betraying any of her confidences. They're adorable; you're gonna love them. And, in a way, we're gonna get a precious little bit more Chrissy.

Thanks, y'all. 


tip jar

June 26, 2023

"Do It Yourself" Can Wait

It is a humbling experience to be overwhelmed by offers of help. It is more humbling still to realize that you need overwhelming help. I like being self-sufficient, maybe to a fault (Chrissy would absolutely agree with this statement). I'm the guy you see in the parking lot at the home improvement store trying to lift multiple sheets of plywood and absolutely refusing to accept help from the store employee offering it. I always took it as a personal insult if we ended up hiring someone to fix something around the house that I thought I could take care of myself. Sometimes this character trait pays off, and we get a beautifully redone screen porch. But it also means that I have items on my household fix-it list that predate my youngest daughter. 

All that to say, as hard as it is for me to ask for help or even to accept help freely offered, our family could not have made it to this point without the support of so many of you. The one phrase I have heard probably more than any other in the past month is "If there's anything I can do to help, please let me know." Every single person who has expressed this to me has meant it from the bottom of their heart, and every single one of you has made me feel so loved, encouraged, and supported. 

Over the past week, it has become clear that the best and most useful way to help, should you feel led to do so, is to navigate to the GoFundMe page that my sister, Liz, set up for us. Setting up a donation page was something I hadn't even considered before Liz asked my blessing to start one, but since donations started rolling in I have realized just how valuable this specific type of help is for our family as we pick up the pieces of our lives.

If you feel so led to help, it would mean the world to us. Each donation we've received isn't just money, it's time. Time to spend with my girls to help them through the worst thing that will ever happen to them. Time to sit in peace with them without being preoccupied with our sudden new financial situation. Time to sit with my thoughts and feelings and grief. Time to write, which has been and will continue to be therapeutic as I try to make sense out of a universe that no longer includes Chrissy. 

Look, this is PEAK make-Robert-feel-uncomfortable stuff right here, because not only is it asking for help, but it's asking for the most generic, un-specialized type of help. My knee-jerk instinct is that, if I'm going to accept help, I should be asking each individual for something special that they are uniquely capable of providing. We have so many people in our lives who have incredible, unique talents and skills; surely each person has something amazing they want to do for us!

But folks, I am still learning from Chrissy. As I made the drive last night to my parents' home in Georgia, I thought back on all the times I've watched Chrissy command armies of volunteers. I can't tell you how many times I've witnessed her direct a room full of people with post-graduate degrees to do the most mundane, generic tasks possible. You've got a PHD? Go through these tubs of markers and throw out the ones that have dried out. You run a multi-million dollar business? Put two of each color pipe cleaner in each of these 40 ziplock bags. I've seen her do it a hundred times. And here's what Chrissy's been teaching me through these memories: when people who love you tell you they want to help, they ain't lying. Nobody ever got upset at Chrissy asking them to do mundane, impersonal things. They were happy to do it. They volunteered to do it. Get over yourself, Robert, and take the help people keep asking to give you.

Thank you all so much. I can't say it enough: I wish everyone, everywhere was blessed with the Village that we have. And even though letting so many people do so many things for me makes a part of me want to curl up into a tiny ball of infinitely dense mass, there's a bigger part of me that just marvels at the ever-repeating miracle of people caring for us. Thank you.

Here's the link:

June 25, 2023


"What would Chrissy do?" has become a very useful focusing tool for me. For any number of unfamiliar situations I have found myself in this week, this tool has helped me center myself, halt the spiral, and take perspective. 

It's been helpful when there have been hard choices to make. It's been helpful when I have needed to find a solution to complex logistical problems. And, in between the chaos and slogging through the lists of very-much-not-fun tasks that have to be completed, it's been helpful when there are quiet moments.

Today has been a day of crossing off lists, hurried packing, and travel. It has been a hell of a week. The adrenaline and cortisol have finally eased the throttle down to only about 75%. I am wounded. I am raw. I am weary. 


Well, first of all, on a week like this one, she would still write. But it would be a short post. 

She would express gratitude for all the acts of love and grace we experienced this week. 

And she would wander out in the pasture, braving mudholes, chiggers and fire ants, to get a good photo of tonight's incredible sunset.

And then she would close her laptop and enjoy the quiet.

Check, check, check, and check. 

I'm the Captain Now

There's this very small, quirky cruise ship. It's a small scale business, nothing super flashy. It only has 4 crew members: two full-fledged officers, and two bright young cadets. One crew member serves as captain, navigator, events coordinator, and also takes care of about 75% of the galley duties. The first mate is in charge of maintenance, engineering, waste handling, and also runs the ship's comedy club. Both have very weirdly specific job descriptions, but they built these roles around a long-running partnership and somehow it works pretty well. This little venture is modest, but sustainable and even thriving. Again, nothing flashy, nothing grandiose, but the ship is sea-worthy and storm-tested, and it is chugging along, right on course and right on time. The captain is imminently capable, and her record aboard this ship is unblemished and admirable. The first mate is a resourceful and talented problem-solver, and his levity and adaptability have proven invaluable for this crew when navigating rough waters. The two are excellent foils for each other, each serving to complement the other while managing to balance out each other's particular excesses. The partnership is a triumph of luck. Their puzzle pieces fit just right. The little ship chugs along, day after day, month after month, year after year, right on course.

But one day, in the middle of a cloudless day, on calm seas, a rogue wave materializes out of nowhere. Before anyone has time to brace themselves, the wave strikes and the captain-navigator-activities-director-cook is swept from the deck and lost at sea. 

Just as quick as that. She's Gone. 

The rest of the crew pick themselves up off the dripping deck, stunned. The first-mate-engineer-janitor-clown scans the water all around in a frantic attempt to locate the captain. Maybe she's not lost. Maybe she was able to grab a life ring on her way over. Maybe if he looks hard enough he'll see the smoky trail of a flare gun. 

But there's nothing. This captain, the one he has crewed alongside for all these years to get this beautiful little ship from harbor to harbor, voyage after voyage, is nowhere to be found. The sea has taken her. 

The first mate assesses the situation. The cadets are both present and accounted for. This is good. He quickly grabs emergency blankets and scoops them up and gets them inside where they can rest against the bulkhead. Alarm klaxons are sounding. The vessel is listing somewhat. This is concerning. The hull could be compromised. The engines are definitely not at full power. He can tell the originally plotted course is no longer possible, not with this damage. This is not good.

It's at this moment the realization hits him so hard he almost loses his sea legs for a moment.

He's been promoted. 

He steadies himself against the railing and takes several deep breaths. He somehow manages to avoid vomiting. 

He takes another deep, deep breath, holds it. He stands, willing his legs to stop quivering. He stands for a moment, thinking. He nods, lets out his breath in a heavy but determined sigh, sets his jaw, and steps into the wheelhouse. 
He goes down the captain's duty list. He's watched the captain steer for years, and even spent some time at the helm a few times (but mostly just when the captain was needed elsewhere onboard and the charted course was well-mapped and clear). It's been years since he worked regularly in a galley, but he's no slouch. He sees the captain's sextant resting on top of the maps. He makes a mental note to write a joke for the ship's comedy night about how funny the word "sextant" is, but has no clue how to use it.

Another deep breath. He takes stock of his resources. He has the two cadets. They are inexperienced and scared but ready for duty. They have also been watching the captain. The senior cadet has already run to the galley and started pulling recipes. This is a good sign. He steps back out on the deck and cranes his neck upwards to glimpse the radio antenna, and sees it's untouched. This is good; he can radio nearby ships for help. He checks the distress beacon and confirms it has been activated. Before he can even reach for it, the radio receiver crackles. It's another ship reaching out. They have already picked up the beacon. Then another crackle, another nearby vessel responding to his distress call. Then another. And another. He sees a sail on the horizon. Exhaust from a smokestack on the other. Before long, there is an entire armada approaching. The radio handset is almost unusable, choked with other vessels extending offers of assistance and escort to safe harbor. 

The two cadets step up on either side of the new captain and each places a hand gently on his back. He nods to each of them, his shipmates. He reaches out and, cautiously at first, places his hand on the wheel. He feels the wooden handle, the shallow grooves worn ever so gently in the shape of the former captains fingers where she gripped and turned this wheel for years and years. His fingers don't line up just perfectly; the grip feels awkward and unpracticed. But the wheel turns fine. He'll get the hang of it. He carefully eases the throttle forward. The ship, with its still-shivering crew, shudders and clangs. But it starts to move. The ship motors forward, with a lot more smoke than he'd like, and leaving behind only the hint of a wake, but forward. The battered crew is short their most capable sailor. There are duties that require skills nobody on board has learned yet. But they are moving forward. The ship is surrounded now by other vessels, with tow ropes in hand if needed, and life rings at the ready.

By now the daylight has begun to darken, and the reluctant captain raises his eyes to the horizon. The tiniest imaginable little pin-prick of  light appears. Then it disappears. It reappears. It disappears. Reappears again. A beacon. He takes a long, slow deep breath. He lets it out. He smiles a weary smile at his crew. It will be a long, exhausting night, but this battered, listing ship is moving towards the harbor.

They're going to make it.

June 21, 2023

Chrissy's Memorial Service

Memorial Service for Chrissy Davis Hardy

2:00PM, Friday, June 23rd, 2023

Knollwood Baptist Church
330 Knollwood St
Winston-Salem, NC  27104

Reception to follow in the Fellowship Hall

The service will also be live-streaming at https://www.knollwood.org/events/memorial-chrissy-hardy

June 20, 2023

Well Done, Good and Faithful Servant

"You were a presence full of light upon this earth

And I am a witness to your life and to it's worth."

--The Mountain Goats, "Matthew 25:21" The Life of the World to Come

This blog is technically our family's, but everybody knows it's really Chrissy's outlet. I've written a few guest posts when she was too tired or busy to get one out, but I never thought I'd be writing this post, for this reason.

Yesterday was another very crummy morning. Chrissy has always had hard-to-get veins, and an added IV in her right arm ended up having to be pulled, and her arm was swollen from shoulder to hand and very painful. But she was in good spirits for my evening visit, all things considered. I brought her an oreo milkshake, which she ate about half of (which is pretty good for how her appetite had been this week), and we sat together and enjoyed watching the first half of the Wake Forest baseball game. We laughed, talked, and cheered on the Deacs. When her eyes started to get heavy, I came over and kissed her buzzed head and we prayed together: for her arm to feel better, for good rest, and for her to continue to be spared from the nausea and mouth sores that this chemo cocktail often creates. We said our goodnights and I told her I'd see her tomorrow. It was one of the best visits I've had with her since she was admitted 3 weeks ago. 

This morning, about 4am, I was awoken by a telephone call from an unknown number. In my sleepy stupor, I didn't get to my phone in time to answer. I remember being vaguely annoyed that maybe some spam call or wrong number was waking me up at this ungodly hour. But when the same number immediately called back, I snapped out of it and realized this was something important. The voice on the other end of the line informed me that Chrissy had paged her nurse to complain of a headache, and then become unresponsive when the nurse came to check her vitals. They could not rouse her, and she was immediately taken to the Cancer Center's ICU to be intubated and to do a CT scan. The urgency in the caller's voice--coupled with the early hour--made clear the seriousness of the situation. I threw on the closest clothes I could reach and tore down I-40 to the hospital.

Chrissy's platelets were being chewed up and spit out, first by her leukemia, and then by chemotherapy as well. Extremely low platelets make for high risk of bleeding; it's the reason why she'd been bruising so easily in the week or two before she was diagnosed. This morning that risk became a reality, and the CT scan revealed she had developed a very serious brain bleed. With her platelets at rock-bottom, it was not an option for neurosurgery to go in and drain that blood; they wouldn't be able to stop bleeding from an incision. The ICU staff tried everything they could to get around this problem by pushing multiple bags of platelets as quickly as they could, but her levels were just too low. 

Some things just can't be fixed. This was one of them. 

I was informed of the situation when I arrived at the ICU, and the unbelievably caring team escorted me to Chrissy's bedside. She was still unresponsive, but her excellent nurse, Travis, told me it was possible she could still hear me, so I talked her poor ear off over the gentle, rhythmic sound of the ventilator. Soon, Chrissy's mom arrived, followed by her dad shortly thereafter. We all spent time holding her hands, talking to her, crying, and praying over her. When the time came, we left the room briefly for them to extubate her, and then returned to hold her hands, kiss her head, and sit with her for a last few sacred minutes. Chrissy left this world peacefully, surrounded by overwhelming love. And our faith leads us to believe she entered into a Love even more profound. 

This world had 42 years of Chrissy. I was fortunate enough to be able to spend 20 of those years head-over-heels in love with her. The avalanche of calls and texts and tributes we've received today is a testament to how much Chrissy packed into those years. And yet they were nowhere near enough. For all who knew and loved her, another 50 years would still be too soon. 

What a woman. What a blessing to have witnessed her life. 

I love you all of it, Chrissy. With everything I am, for as long as I live, until I see you again.


June 18, 2023

Happy Father's Day!

 A few quick updates from the hospital....

This round of chemo is knocking me down pretty hard.  I've had fevers all weekend along with a handful of other chemo side effects including just feeling pretty worn down and tired.  I'll have a few good hours and then I'll crash hard.  It's unpredictable except that I am noticeably weaker overall.  It's all to be expected; we knew this was an aggressive treatment.  My platelets remain super low, so lots of bruising and bleeding and petechiae.  Basically, I'm sick.  But the nurses are great and are doing what they can to manage symptoms.  Hopefully this round of fevers will die off soon.  But don't be surprised if the blog posts slow down some over the next couple of weeks.  Some nights I just may not have the energy for it.  Don't panic.... we're staying the course and doing the things and continuing to march towards our goal of remission.  Believe it or not, today is already 3/7 of the new regimen.  There's one oral pill I take for 14 days, but the bulk of these drugs will be done being administered in just four more days.  And in two more days I should get to move to a new room.  Keeping the countdowns on.

My hair was also coming out in big chunks and getting everywhere, so Robert did the 'ole buzz cut for me tonight.  On to the next stage of baldness.

I got to have a nice visit with my mom today during a period when I was feeling pretty good and another visit from Robert, the girls, and my dad tonight (when I was feeling less good). 

I think Robert and the girls had a great Father's Day.  He got some special cards from them, and a really cool t-shirt, and they took a 10 mile canoe trip down the Yadkin River. 

And Happy Father's Day to my own dad who came to visit today, too. I'm grateful for his faithful love and concern for me these last few weeks.   I know there's nothing worse than watching your child suffer and I am appreciative of all he's done to try to ease some of the pain.

To all the fathers out there, doing their best to love and show up for your kids in whatever ways you can.  You're all Cool Dads.  Happy Father's Day.

June 17, 2023

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.

June 16, 2023

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.


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. 

June 15, 2023

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.

June 14, 2023

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.

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