Home for the Horrid Days

As my dear friend Johnny Optimism says, "things could always be worse." After which, for Johnny, they always get worse. And there's a little of that going on at stately (well, sickly) Jarlsberg manor just now.

Going back a few days, Daughter J's surgery was successful and the surgeon removed a 30-pound cyst from her abdomen. That's three 10-pound bags of potatoes for anyone math-impaired (I'm looking at YOU Elizabeth Warren, AOC and, what the hell, every Democrat except Joe Manchin). "Bob" was removed intact and posed for a precious (and impressive) baby picture which you can see right here if you're the medically curious type. 

Daughter J now has a long abdominal incision held together by dozens of metal staples. Daughter J herself is being held together with hydrocodone.

At the time of the surgery, Daughter J's mom was still stuck in a different hospital. Kathy's 3-day chemo visit turned into a 10-day visit with additional chemo because her leukemia, like a bad party guest, apparently doesn't know when to leave. Then as a bonus, Kathy got diarrhea which kept adding days to her hospital stay (it's hard to get well when your immune system has been decimated by chemo).

On Saturday, I left Daughter J with her aluminum walker and opioids to visit Kathy. She still had the trots and everyone who came into the room wore a plastic apron with sleeves, a face shield, gloves, and a mask. But surprisingly, we were told that Kathy could come home that very day! Yay! And so we packed up and got Kathy (quite weak from treatment) back home.

I couldn't believe the change in our fortunes as Daughter J began heading (slowly, with the walker) towards the den for a reunion with her mother. And then the phone rang.

It was the hospital. "We just put the pieces together and realized that we might not have mentioned that your daughter must not get anywhere near your wife!" Because Kathy didn't just have diarrhea - she had (and has) C.Diff, which is a magical hospital-acquired bacteria that is wildly contagious, hard to get rid of, and can cause people to have whole sections of their colon removed or just kill 'em outright. Which would have been nice for me to know when I was in close quarters with her at the hospital and packing all of her stuff (C.Diff is easily passed by touching something that an infected person has touched). 

At special risk of infection (and having a funeral where everyone is snickering about death by poop) are people over 65 (me) and people who have just had surgery (Daughter J). So my two women needed to stay well-removed from each other as they toddled around with their walkers.

But fortunately and somewhat heroically, I could still take care of both of them...right up until about two hours ago, when I suddenly began vomiting violently without even having used Clan MacGregor as an emetic. Our home resonated with the sound of "ARRRRRRK!" but it was not the herald angels singing. And yes, I've been taking care of myself, but when the Devil has you in his crosshairs, there's only so much you can do.

This is not an opportune time for me to be sick, nor for our house to be quarantined and thus keep additional caregivers out. So I'm hoping I just have food poisoning and not something which will infect anyone else in my household (and which will hopefully pass quickly).

Because "hoping I just have food poisoning" is pretty typical of what passes for holiday optimism in the new normal around here.

"The barf bags were hung by the chimney with care..."

MONDAY MORNING UPDATE

Huzzah! I made it through the night with no recurrence of vomiting nor any other symptoms of illness. So apparently all I had was my latest lesson in humility and gratitude - a reminder that things really COULD be worse. All the chores that have recently felt like hard labor will today feel like a gift because I can do them. 

Tizzy the Season

The only thing better than a hospital Christmas tree is pretty much anything else

I'm not even going to try to be clever about this update (and I'll pause for a moment for some of you to express shock that I thought I'd been clever in the past) because I'm parceling out my remaining neurons the way unreformed Scrooge resisted doling out farthings, shillings, and ha'pennies.

Medically speaking, this is a big week for the Jarlsberg family. Either today or Tuesday (probably), Kathy will be sprung from the hospital after completing another grueling round of chemo. She will come home to recover and regain strength, while needing to return to the hospital every 3 days for an infusion of platelets and red blood cells that her body won't be able to produce sufficiently for a while.

Meanwhile, at 7:30 am Tuesday morning (we arrive hours earlier), Daughter J will have the surgery to remove the vastly oversized ovarian cyst that has become problematic (to put it mildly). The surgery will take at least two hours and is the subject of much nervousness around here, as the cyst has cleverly wedged itself into tight quarters with lots of important viscera that are scalpel-averse. Following the procedure, she'll remain in the hospital for two or three days and then come home to recover further for 4-6 weeks. During which time she'll probably be thinking about tattoo designs capable of disguising a long vertical scar. 

My job during all of this will be to shuttle the women between hospitals, visit during visiting hours, wring my hands in waiting rooms and, once everyone is home, fetch the bedside commode for whomever most needs it at the moment.

Overall our moods are pretty good, but we're looking forward to future Christmases that are considerably less stressful. Until then, this is another very sincere request for your good thoughts, positive vibes, and prayers to help get us through all of this. It's worked so far, so we don't want to mess with a good thing. And as always, thank you for being there for me and my family!

HOUSEKEEPING NOTE

I'm culling a number of seemingly outdated or abandoned email addresses from my email list. If you stop getting emails from me (you should always get an email alerting you to new content here), then please click on the sign-up link to add your address again. Thanks!

The Holly And The I.V.

December has arrived, there's a bite to the air, and on the radio Bing Crosby is crooning "I'm Dreaming Of A Medically Invasive Christmas."

Or at least, that's sort of how it feels around the Jarlsberg household at the moment. We've done an itty-bitty bit of Christmas decorating, but 90% of our stuff (including the tree) is going to have to wait until next year. 

In general, things are going fine here. Kathy is feeling the best and strongest that she's felt in some time, which makes it likely that at today's doctor visit she'll be told that it's time for another round of chemo to nip that "feeling good" thing in the bud. Seriously, we'll find out if she'll be having a 3-day round of chemo later this week or if it will happen the week after. 

A few weeks after she completes that chemo, she'll likely have her gall bladder removed, and a few weeks after that get her stem cell transplant. Which will be a very big deal and which I'll talk more about in the coming weeks.

Meanwhile, daughter Jarlsberg is scheduled for her watermelon-ectomy (removal of a giant ovarian cyst) early next week. We don't know yet how much overlap there will be in medical procedures, hospital stays, and at-home recoveries, but it's likely to be a juggling act. If necessary, there are friends and family members who've offered to help out. Which is much appreciated even though they're probably all teeming with the omicron virus or whatever infectious new variant from Hell we can thank Tony Fauci and the Wuhan Institute of Breaking the Whole Frigging World for.

Still, we've never been more aware of all the things and people we have to be grateful for and that's a pretty good place to be on the Christmas spirit scale.

But please, Santa...no more surprises!

Giving Thanks. No, Really.

We pardoned the turkey this year, in return for which he's providing gleeful holiday spirit

If, three months ago, I had been given a quick peek into the future to see my family's circumstances for Thanksgiving 2021, I probably would have had a nervous breakdown. But having lived those months one day at a time (often one hour at a time), I'm something of a changed man - and so am genuinely filled with gratitude this Thanksgiving.

First and foremost, I'm thankful that all of the members of my little family are still here for Thanksgiving since that wasn't a sure thing. And I'm particularly thankful for the amazing strength, courage, and humor with which the women in my life are facing down their challenges. I'm thankful for all of the medical professionals who are routinely working miracles on our behalf, and for the anonymous (to me, at least) blood donors who are gifting us with life on a regular basis.

I can't say I'm thankful for my daughter's whopping ovarian cyst, but I do appreciate that it became symptomatic at just the right time to allow for surgery during a window in Kathy's treatment (best guess is that the surgery will be next week.)

I'm very thankful for family and friends (including you!) who have helped keep us going in these recent months, and thankful that the support is ongoing - because there's a long road still ahead.

On Monday, we had our first detailed talks about a stem cell transplant for Kathy. The procedure usually takes place 4-6 weeks after a round of chemo (which she'll be starting in early December), although it may be delayed somewhat because Kathy will first need to have her gall bladder removed and recover from that surgery. Because we didn't already have enough on our plates.

I'm wildly thankful that a good stem cell donor match has been found for Kathy. Donating stem cells is no picnic; it involves medications that put your stem cell production into overdrive, after which they're collected (via blood that is filtered then returned) through a needle in the donor's neck in multiple 4-hour sessions. Who does that for a stranger? Apparently a lot of people.

To prepare for the actual transplant procedure, the patient receives a Grand Whammy of chemo in order to destroy the bone marrow and the immune system. The donor stem cells are then introduced via transfusion, and the plan is that they'll take root and start producing healthy, non-cancerous blood. Interestingly, not Kathy's blood, but the donor's. Her system isn't going to be "fixed," it's going to be replaced.

The procedure will require a lot of medicine, a lot of donated blood, and a lot of recovery time (with strictly enforced isolation). And while there are no guarantees, it's at least possible that Thanksgiving 2022 will see Kathy cured.  And that possibility is what I'm most thankful for.

So please accept warm and very sincere wishes for a wonderful and meaningful Thanksgiving this year from the surprisingly lucky Jarlsberg family!  -Stilton

Going To Health in a Handbasket

It has recently become clear why there's no idiom in the English language (or any other) which celebrates "The Luck of the Jarlsbergs." Because frankly, we're not seeing much of it lately.

In the past several months, my beloved dog died, my wife was given 2 weeks to live, I discovered that my teeth are rotting in my head and need $10,000 worth of repair, my best friend was diagnosed with prostate cancer, and now I'm about to become the grandparent to an Alien Baby. Alien as in "the kind from space," rather than "the kind that speaks Spanish and is going to get $450,000 just for breaking into our country."

To tell the story quickly, which is all that I have strength for, on the one frigging day last week that Kathy and I didn't need to go to the hospital, daughter Jarlsberg started having severe abdominal pains. We hurried off to CareNow where a doctor palpated her lower abdomen and scored a 10 out of 10 on the pain scale. It was amazing: bells rang, lights flashed, confetti dropped from the ceiling, and a small gallery of onlookers eating fair food cheered. For her high score, Daughter J was instructed to take any prize from the top shelf - although all the prizes were the same: an order to go immediately to the Emergency Room.

Once there, Daughter J was given an IV drip of Clan MacMorphine and hustled off for a CT scan to determine if her searing pain was appendicitis or diverticulitis. But it was neither. The doctor said they'd found a "very big tumor" which was "probably an ovarian cyst." I asked the doctor to convey the approximate size of the growth using the citrus fruit scale, but he had an entirely different part of the produce aisle in mind: "about the size of a watermelon." No, really.

Daughter J has a medical condition in which ovarian cysts aren't uncommon, but whoppers like this one are something else entirely. The good news is that such tumors are almost always benign, and they can be surgically removed unless you're covered by a Blue Cross Blue Shield HMO plan. Thanks, Obama!

Being her father's daughter, the delightful Ms. J is referring to the abdominal visitor as her "alien baby" and she's trying to figure out how to milk a few baby shower gifts out of the whole affair. We hope that the surgery can happen soon, and that she'll have a quick and uneventful recovery (usually about 6-8 weeks).

Meanwhile, Kathy is living with (and fighting) her leukemia every day. Today (Tuesday) was pretty typical: she woke up feeling not great but not horrible. Then continued to get weaker and weaker in the hours before an already-scheduled appointment at the oncology clinic. By the time we arrived, she was so weak she couldn't walk even using her walker and I had to borrow a wheelchair to transport her to the blood lab so they could take samples and see what she was low on.

Everything, it turned out.

See, chemo destroys your body's ability to produce all of the swell things that make blood so useful for tasks like, oh, sustaining life. Your system comes back online slowly, but until then you're utterly dependent on blood and platelet transfusions every few days. So today she got platelets and two units of blood (about a 6 hour procedure), but that will hold her until her next visit...on Thursday. And beyond that, we really don't know just now. Maybe we'll find out more on Thursday, or maybe we won't. The only thing we can count on is that Amazon Prime will soon be delivering the wheelchair I ordered today.

And that's really all I have the strength and brain power to share just now, but so many of you are being so supportive that I want to keep you in the loop. As always, your good wishes, positive thoughts, and prayers are all vastly and sincerely appreciated.

And if you happen to have any spare baby clothes roughly the size of a watermelon, well...

BONUS: KARMA KICKS KARTOONIST

It was 2013! How could I have known...?

Days Of Our Daze

The graphic above is sort of a rough approximation of how things feel right now in the Jarlsberg home. There are dark and spooky clouds out there, but for now we're enjoying relative peace.

Last Tuesday, Kathy checked back into the hospital (scheduled - not an emergency) for her second round of chemotherapy. This amounts to 3 days (rather than 5) of the same old toxins they walloped her with last time, but rather than stay in the hospital during the recovery period she gets to come home (with twice weekly visits to the hospital to see if she needs a transfusion or other care). 

We were somewhat shocked when they really DID let her out on time, and Kathy was back at home by early Friday evening. It's worth noting that being home isn't exactly a cakewalk: the chemo continues doing its destructive thing for a few additional days, after which Kathy's red blood cells (for oxygen) are low, as are her white blood cells (for fighting infection), and her platelets (for blood clotting). 

When you have really low platelets you're warned against high-risk activities like cutting your fingernails, flossing, or blowing your nose - any one of which could apparently lead to a tsunami of bleeding.

But that being said, Kathy is able to get around without her walker (albeit carefully) and do a number of things. And the whole house just feels alive and inhabited again with her in it. 

At some point on Monday (we still need to hear from the hospital) Kathy will be getting an injection of something to encourage her body to start making various blood cells again so we don't have to rely as heavily on transfusions (unlike Biden, probably), then on Wednesday we'll be meeting with a member of the doctor's team to update us on wherever the heck we are in this whole process because there's apparently a HIPPA rule against giving patients more than about 48 hours worth of useful information.

But today is a good day, and I wanted to share that with you! 

FROM THE VAULT: Spring Forward, Fall On Your Face...

In Stanley Kubrick's classic "Dr. Strangelove," the world is plunged into nuclear war owing to General Jack D. Ripper's obsession with protecting our nation's "precious bodily fluids.

Frankly, Hope n' Change thinks that General Ripper, while well-intended, was completely missing the more serious threat. Specifically, the threat to our nation's "precious bodily biorhythms" owing to the pernicious Daylight Saving Time conspiracy.

Seriously, the government just declares a reversal of time and expects us to suck it up without confusion, nausea, and disrupted sleep patterns? Granted, this hits us harder at Hope n' Change than it does many others owing to the fact that we suffer from "dyscloxia" which prevents us from reading the face of a clock after the time change and having any idea whatsoever what time it really is.

We're not kidding. We're writing this at 1:22 pm and can honestly tell you that we are clueless about whether it should actually be 12:22 or 2:22. But we know with absolute certainty that it's only an evil and all-powerful government claiming (preposterously) that it's 1:22 and we're not buying it.

We fail to see any upside to Daylight Saving Time whatsoever, with the slight exception that since the government has declared time to be malleable, we can pretty much declare it to be "happy hour" whenever we like.

The Horrible Thing On The Seventh Floor

Halloween is just around the corner, and it seems the perfect time to share a spooky story that I've only hinted about in the past several weeks of hospital tales: The Horrible Thing I Saw On The Seventh Floor.

When Kathy first entered the hospital with a terrifying diagnosis, I was in a constant state of panic. Every day felt quite literally like a matter of life and death. And I displayed pretty much every symptom of stress that bodies are capable of: shortness of breath, speeding heartbeat, chest pain and...and...the screaming trots.

I'm not talking regular diarrhea here, friends. No, this was noxious, still-bubbling green stomach acid which burned like a blow torch. And when it was time to go to the bathroom, every second counted.

Mind you, I couldn't use the bathroom in Kathy's room because everything that came out of her was being weighed, measured, and analyzed. So I'd have to hotfoot it to the only public bathroom on the 8th floor - a single-seater unisex bathroom which was first come, first served.

On Wednesday, September 29th, I felt the stirrings of blazing doom rumbling in my bowels and left Kathy's side to hit the bathroom. But the bathroom door was locked from the inside. I could hear someone else in there, shuffling around. So I waited. And waited. And waited.

Beads of sweat appeared on my brow. I was getting stomach cramps. The urgency got worse and worse. And then...there was a flush from behind the door!

I waited...and waited...and no one emerged. I heard more stirring from the bathroom and realized that someone was camped out for the duration, perhaps giving birth, having a heart attack, or enjoying a picnic lunch on the cool tile floor.

In desperation, I decided to make a run for the elevators so I could go to the 7th floor, hoping that the layout would be the same as the 8th. The elevator came, the door opened on the 7th floor (which was the same as the 8th except for dimmer lighting, fewer people, and everyone wearing gowns, masks, and hair coverings), and I bolted for the bathroom. It was open! Oh, sweet joy of joys! Blessed, scalding relief!

My business finished, I washed up and headed back through the dim hallway towards the elevators. And then I saw The Horrible Thing On The Seventh Floor.

It was a sign. A sign tilted in such a way that you couldn't read it when coming from the elevator, but was perfectly legible when going the other way. A sign that said: "COVID-19 Floor. Do Not Enter Without Authorization."

The bowels which had so recently held a reservoir of lava were suddenly packed with ice. 

In a daze, I returned to the 8th floor and went to Kathy's room. I told her that I might have been exposed and so had to leave immediately because of her weakened immune system. But she wouldn't hear of it and wanted me to stay with her in that frightening environment. And so I did, for two more hours.

It was on my way home that the full horror of what I'd done hit me: if Kathy died of COVID-19, it would be because I'd been too tired and confused to do the only logical thing and leave immediately. Instead, I'd taken leave of my senses and suddenly turned into Typhoid Mary.

I thought I had killed my wife. It felt like one of those awful nightmares in which you do something horrible and completely out of character, making you grateful to wake up to the realization that it didn't happen. Only it did happen and there was no waking up from it. I didn't know that I could feel even worse than I'd been feeling before, but I could and did.

A subsequent COVID test showed I didn't have the virus. And the month that has passed since that awful day showed that Kathy didn't have it, either - no thanks to me.

So you can have your Halloween ghosts, ghouls and things that go bump in the night. But none of them can ever be even vaguely as scary as The Horrible Thing On The Seventh Floor.

HALLOWEEN BONUS: ARS GRATIA ARGH...

Need a little last-minute decorating for a Halloween party or a really uncomfortable Thanksgiving? Then print out this painting by my Dad to hang on your wall! (Click this link to download a 20MB printable version)

Many Happy Returns?

Just a quick one, owing to the fact that I'm completely pooped. But not for any particular reason, as the day’s medical stuff went well. Granted, that’s with air quotes around “well,” but you get the idea.

Kathy’s blood numbers were very good - her platelet count has tripled in a week, which is great. Other numbers are moving in the right direction.

So this more or less spells success for the “induction” phase of leukemia treatment when they throw everything at a patient to keep them (mostly) alive. Next will be the “consolidation” phase, in which they try to clean up any straggler cancer cells in her body. 

The process will continue to be challenging: she’ll check into the hospital a week from now and be given chemo for 3 days instead of the 5 days she got last time. Then, rather than spend 3 weeks in the hospital trying to recover, she’ll be sent HOME and try to recover while I monitor her vitals and generally have a panic-stricken look on my face. Twice a week, I’ll also take her to the hospital for blood tests which will tell us if she needs a blood transfusion, platelets, or other treatment she can't get at home (in other words, anything other than an ice bag). And every 4-6 weeks, we’ll repeat the whole cycle - over and over - until such time as we may be eligible for a stem cell transplant, which is not a non-risky procedure. 

In the interim, her immune system is somewhat less than half of what it would normally be, and all of her vaccinations and natural immunities have been wiped clean. She'll need to start from scratch after that transplant, and in the meanwhile obsessive hygiene will be the rule in the Jarlsberg household.

We continue to take one step at a time and the path we’re on - however challenging - is the only path that can potentially lead to a good long-term outcome. So all in all, this was a good day and one I wanted to share with you.

And I also want to share that with Halloween right around the corner, Kathy dressed in black for her appointment today - including a t-shirt which created the illusion of her having a skeletal rib cage enclosing a hot pink heart. A bold choice to wear to a crowded oncology clinic, but that's one of many reasons that I love her.

Meanwhile On The Home Front

As landmarks go, being home from the hospital for a full week may not sound like much, but it's cause for celebration here in the Jarlsberg household. Because that's how long it's been since Kathy was discharged and put into the care of a very, very nervous guy.

Happily, things have been running pretty smoothly. As of today, Kathy has completely given up use of her walker for getting around, though still has to pace herself as she continues to rebuild muscle, energy, and blood cells. Her hair is thinning, but she's not worried about it - perhaps because I've made being bald look so good over the years. Or not.

The elephant in the room, of course, is figuring out just where we are in all of this and what comes next? Theoretically, we'll find out a bit more on Tuesday when there will be a fresh blood draw and analysis, followed by what will hopefully be an enlightening discussion with the experts.

In the meanwhile, I've recently taken receipt of every relevant publication from the Leukemia & Lymphoma Society (available free, for which I'm greatly appreciative) and so have plenty of anxiety-producing and hope-inspiring reading material to work through. I'll note, though, that all of the many booklets are a bit on the dry side and could really benefit from a little humor...

If anyone from the LLS happens to be reading this, I'm ready to provide services free of charge! Or to write you a personal letter of apology!

Seriously, we're grateful for each normal-ish day and hope to enjoy many, many more. And we're also grateful for the support, insight, positive thoughts, and prayers we've been getting from family, friends, and YOU. They make a real difference, so please keep them up!

There's No Place Like Home, There's No Place Like Home...

You DO read Johnny Optimism, right...?

I'm delighted to say that Kathy has returned home! It turned out that all she needed to do was click her ruby IV bags together and, oh yeah, be put through weeks of Technicolor hell.

But after a month in the hospital being treated for Acute Myeloid Leukemia, she was allowed to come back home where, rather than being treated by a team of medical experts 24/7, she is being treated by a sleep-deprived idiot who may not be altogether sober after 5 o'clock.

The very idea of taking on this responsibility terrified me, because it's not like Kathy had suddenly achieved robust good health and a penchant for doing Olympic-level calisthenics. A point best illustrated by the following interactive experiment...

Right now, wherever you are, clench your butt cheeks together. Do it good and hard, like you're trying to crack a walnut in there. Hold for a count of five.

Did you do it? Surprise - you just killed yourself!

At least, that was Kathy's situation three days before her release. Her platelets (which clot blood) were so low that she wasn't even allowed to do the few exercises in bed which she'd previously been assigned. Including clenching her butt for five seconds - because it could cause her to bleed to death.

Since that time, she's received multiple bags of blood and platelets (thanks, nameless blood donors!) and so should be fine until her next doctor appointment in a week. And at that visit we'll hopefully learn where we are and what comes next. The greatest likelihood is a repeating cycle of in-patient chemo for a few days, followed by several weeks off.

Or not. Of the many things leukemia is, "predictable" is not one of them.

But Kathy is home and coping well with the indignities of using a walker and (at night) a bedside commode. It's my job to clean the thundermug, but it turns out to be less offensive than watching the news, so I'm doing fine.

We literally don't know what tomorrow will bring so we're appreciative of days like today which were relatively normal. Well, our new normal.

And as always, I'm at a loss for words for how much your ongoing support, comments, good wishes and prayers mean to us. Whatever you've been doing, you have my very sincere thanks - and please, keep it up!

Homeward Bound?

"Honest, Sweety, the Amazon reviews say this is JUST as good as the expensive hospital machine!"

The very good news is that Mrs. Jarlsberg may be able to come home from the hospital in a few days! 

That being said, she's not cured, not particularly healthy, not comfortable at all, not nearly over the effects of chemo, and not necessarily ready to be cared for by an aging doofus instead of a 24/7 staff of medical experts. But it will mean a lot to all our spirits to get her home again (restoring the heart and soul of our home) as she continues chemo treatments on an outpatient basis. I think.

I say "I think" because we continue to fail to get useful information from anyone. I've been carrying a list of unanswered questions as basic as these:

• Where are we in the grand scheme of things?
• Is she doing well?
• What happens now?
• What challenges should we expect or prepare for?
• How does one care for a leukemia patient at home?
• What medicines is she on and why?
• After having her immune system wiped out, is she no long vaccinated against ANYthing?

And much, much, much more. Like learning new dietary restrictions, because there are certain foods that are hazardous to people with compromised immune systems. As God is my witness, one list of forbidden foods warns of the perils of any "blue-veined cheese" - specifically Stilton.  Although I don't know if the parts of me that aren't blue-veined are as risky.

It's a pity that I don't have the energy to do justice to the many amusing anecdotes I could share about recent days.  Like when your wife really, really needs a bag of platelets but we're told "the blood bank is out of platelets." Or when a crusty nurse's aide insists on wearing her plain-paper Covid mask two inches below her nose while breathing directly on a woman with a thoroughly compromised immune system. 

And remember that emergency root canal I had? I had to pay $3200 up front and then the temporary fell out within 24 hours. Today I had to return to the clinic (stealing time away from Kathy after a tense and sleepless night) because the exposed tooth shards were slicing up the inside of my cheek.  And someday, a long time from now, if everything goes well, I'll share the story of the Horrible Thing I saw on the Seventh Floor. Even now my blood runs cold, and I'm not kidding.

We're a long, long way from being in the clear...and that's fine. A long and rough road ahead looks a lot better than the "dead end" sign we were originally presented with. We're grateful for each day, and even more grateful that there is growing cause for hope.

For the time being, you can pretty much expect that health updates will be the subject of this blog. In part because this is my whole world right now, but also - importantly - because the support you've been giving us is still needed, appreciated, and making a difference.  I don't know how we'll ever put together a proper in-person gathering, but when it happens the drinks are on me - and I'm not talking about Clan MacGregor.

Thank you for continuing on this journey with my family. And for being part of my family. Keep those positive thoughts, good wishes, and prayers coming!  -Stilton

A Marrow Margin of Error

I couldn't include Kathy in the picture because it would be a Hippo violation

As usual, I’m way too pooped to write very much, but want to keep everyone in the loop.

All in all, today (Thursday) was a good day for Kathy, although “good” is a lot more complicated than it used to be a few weeks ago. Most importantly, her bone marrow biopsy results came in and were good. Maybe they were great. Conceivably almost perfect. 

I’m vague because it’s damn near impossible to get straight information out of the doctors. So here’s the deal: what we ideally want is all of the cancer cells in the blood and marrow to be 100% wiped out, after which Kathy will receive a drug which will get her body building white cells and bone marrow again - only healthy (we hope). But Kathy’s result showed that she still had 0.1% cancer cells. Almost none, but not quite none. 

Which is where the doctor had to make an “educated guess” based on his expertise and experience. That 0.1% might represent cancer cells that are still in the process of dying…so maybe she DID get ‘em all (or is about to). The problem is that if too many are still viable, the same drug that gets everything cranked up to high speed again will also stimulate the growth of those cancerous cells. 

But the other option is another round of tough chemo, and that’s not a fight anyone walks away from unscathed. Those toxic chemicals are designed to do damage and they're good at their job. Kathy is doing well, but she’s fighting fevers (which can be quite dangerous) and has a variety of other challenging and risky side effects which are all being handled, but which we certainly don’t want to make worse. So the doctor, taking all of this into consideration and without ever using the “remission” word (although that might just be an oversight), has decided to move ahead as if Kathy is in remission and see where it goes from there.

So this was probably really good news, but it’s unsettling too - like having a front-row seat to watch a guy juggling nitro-glycerine.

Outside of sleeplessness, an uncomfortable skin condition (chemo effect), a continuing barrage of fevers (treated with Tylenol and ice bags), endless IV bags of blood and platelets, etc, Kathy is doing well and keeping her mood up. She exercises daily (confined to a chair for the time being), is doing a great job of eating, and our conversations are very normal and punctuated with laughter…when we can think of things to talk about. It turns out that the only thing in our heads is hospital stuff, and that’s what we DON’T want to talk about. Oh, we occasionally drop four-letter commentary on the current state of affairs, but our hearts aren't in it.

Daughter J and I regroup each evening to take comfort in each other’s company (I'm the only visitor allowed) and look forward to getting Kathy home where she belongs. And hopefully that will happen soon, but right now we’re very much taking things a day at a time. Which, believe me, is all we can handle.

As always, thanks to all of you for the amazing display of support, good wishes, and prayers. They all make a difference. We never really knew how many of you were family until now.

-Stilton