Hard Times

I really don’t want to write this update, but I owe it to all of you. Kathy’s bone marrow biopsy results came back and this fourth brutal round of chemo essentially did nothing. Well, nothing to the leukemia - it pretty much destroyed all of Kathy’s good blood products.

I could make a long narrative of this, but won’t. There is no longer a medical possibility of a cure for Kathy. All she could do is sign up for an unending cycle of chemo after chemo with no discernible point - so that’s not what we’re doing. Kathy will be moving to hospice where AML patients tend not to last very long.

Over the course of the day we’ve gotten the crushingly bad news from the doctor, met with a hospital caseworker, then met with a hospice representative, and more or less finalized a location where Kathy will be going soon. Maybe even Thursday, except the roads in Dallas will be covered with dangerous ice, and we’re not feeling wildly lucky when it comes to taking risks at the moment.

The hospice facility is said to be excellent, and we’re getting a so-called “semi-private room” which will actually be fully private, with me occupying the second bed. It will be close to home, so Daughter J and her Mom can finally be together for awhile.

And because Life just can’t get enough of kicking us in the balls, Kathy’s mouth is still full of sores that keep her from being able to talk more than a few words at a time. We have everything to talk about, very little time to do it...and mouth ulcers.

Kathy has made her peace with leaving. I am in no way at peace with losing her.

Prayers for our family will be greatly appreciated, as always. And thank you for being here for us.

-Stilton

Waits and Measures

They say that “time flies when you’re having fun” and I can assure you with great confidence that the obverse is also true: “time drags like a drugged snail pulling an anvil uphill when you’re having no fun whatsoever and help help help get us the hell out of here.” And what that phrase lacks in style, it makes up for in veritas.

Kathy is doing "well" in the sense that she can and has felt even worse, but that's about as high as the bar goes. It's been two weeks since she completed (most of) this round of chemo, but the "good" blood numbers aren't coming back yet. White Blood Cells: 0. ANC (a healing factor in the blood): 0. Her platelets are very low and all borrowed - she gets a bag or two of them every day. After her previous chemo session, her platelets didn’t come back at ALL, which is what landed us in the hospital nearly two months ago.

She's very weak, though did a little moving around out of bed for several days now. A couple of jaunts from the bed to the door and back, and then a walk around the bed to sit in a chair for an hour (and yes, sitting in a chair is hard and exhausting).

Her doctor came by Wednesday morning and answered a few questions more directly than usual. He said her odds of actual recovery are "very low. Not zero but very low." Additionally, when we ask if she's still a possible candidate for a stem cell treatment, we get a real "it's not impossible, but it's not likely" vibe.

Everything rides on the blood numbers at this point. When Kathy's good blood cells start reproducing again, the goal will be to get her healthy and strong enough to go home for a couple of weeks (perhaps after a short stay in a rehab facility here in the same hospital), after which she'd come in for another 5 day hospital stay and chemo in hopes of finally getting into remission. After that? Who knows. Remission is an unpredictable thing which could last a year or more or just a couple of weeks. On the other hand, if it's the bad blood cells (called "blasts") that start coming back in earnest over the next few days, then it's likely that we'll be looking at palliative care.

Which, it turns out, simply means managing and slowing symptoms rather than trying to cure the disease. I'd always assumed that palliative care simply meant giving a dying person opiates to ease their passing. And that can be a thing too, of course, but it's not what we're talking about at this time. We hope.

A vaguely positive development is that I’ve established somewhat better lines of communication with the doctors and hospital staff to try to get some freaking questions answered. And I also took the opportunity to wage a few complaints about issues you’ve already seen documented here. Good idea? Bad idea? I genuinely can’t tell the difference anymore.

Everything now rests on seeing what Kathy's bone marrow does when it starts to recover (which gets harder and harder to do after each round of chemo - and she's had four major ones now - which is why this current wait is so agonizingly slow). As always, your hopes and prayers for those blood numbers, Kathy, and our little family mean the world to us.

FRIDAY MORNING UPDATE

The doctor just made his mini-visit to the room. He said another bone marrow test will be done on Monday, the results of which will determine whether continuing on this treatment path has any point. So yeah, our weekend is off to a flying start.

HITTING MY CRAZY BONE

It only seems fair that I try to find and share a little humor with you, though the pickings around here are slim and mostly weird. Still...

• When talking to our doctor’s second-in-command about communication issues, I realized that whenever I told her something the doctor had said to us, I was doing it with his Indian accent. I apologized when I realized I was doing it; she kindly said I did it very well. Which is true. Maybe I should grab a stethoscope and start giving second opinions around here.

• A funny thing I’ve noticed is that if you walk to your car carrying a cardboard Starbucks cup and shortly thereafter walk back from the car carrying the same cup, nobody wonders if it was only empty on the way to the car.

• It turns out there are no movies or TV shows that you really want to watch when Life gets this scary and crappy. So in the evening, Kathy and I turn on Youtube videos (mirrored to the television) with beautiful nature scenes and relaxing music. Which is pretty soothing until you remember Edward G. Robinson’s final scene in “Soylent Green.”

• The difference between a Duck Call and a Nurse Call is that sometimes ducks come.

Close, But...

 As has so often been the case lately, whatever results we expected to get from Kathy's bone marrow biopsy turned out to be something else. We think. Sort of.

As you may recall, the point of the agonizingly slow test was to see if all the cancer cells were gone from Kathy's marrow ("You may be a winner!") or whether they were still there in significant number ("We've got lovely parting gifts for you.")

After days of being told "today's the day" to get results, it actually happened today (Friday). "If we look at your sample through the microscope," said the doctor, "we can find no visible cancer." Hooray, right?! "But..."

Damn!

"But when we use sensitive genetic tests we can tell there's still a little bit in there. For now we will let your blood cells begin to grow again. If the good white cells come back strongly, then we will continue treatment. If the bad cells come back then we will need to have A Discussion."

Additionally, to be considered for a stem cell transplant Kathy will have to achieve remission (ZERO cancer) and stay in remission for at least two months. So all in all, the long-awaited test results only told us that there's a lot more waiting and uncertainty that has to happen here at the hospital before we know anything at all.

The news hit us pretty hard; we were already exhausted AND keyed-up. "More of this" wasn't what we most hoped for but it clearly beats at least one other alternative. So we're taking deep breaths and continuing the fight.

Despite being weak, Kathy outdid herself with physical exercise today (what she accomplished wouldn't sound impressive unless you knew what she's coming back from). Solid food? Oh yeah - take THAT cottage cheese and tropical fruit cup! The woman is a superhero.

Still, motivation can be hard to come by and a little unequivocally good news would go a long way for us about now. Personally, tonight I'll be praying that a conversation tomorrow begins: "Good news! We totally misread those finicky genetic tests!"

DEMOTIVATIONAL SPEAKER

When Kathy was struggling with her physical therapy exercises today, she grew frustrated about how little she felt she was accomplishing. Her nurse decided to cheer her up by saying: "It's like my professor in Nursing School said: How does an elephant eat an apple? One bite at a time!"

"One bite at a time," agreed Kathy.

"Uh, pardon me," said the least necessary man in the room (me). "But that's not how an elephant eats an apple! An elephant eats the whole thing at once! He pops it in, takes one crunch and it's done. An elephant couldn't take a bite out of an apple if he wanted to!"

"I never thought about that," admitted the nurse. "I've been using that saying for years! When my stepdaughter became a nurse, I taught HER that elephants eat apples one bite at a time."

"Well they don't."

And such is the manner in which I spread enlightenment and joy to others. Whether they want it or not.