Updates on How Gary Healed



4-1-07: Gary and his wonderful brother Roger (standing)
who is a perfect bone marrow match. What a terrific brother!

 

Many of you know that Gary battled leukemia in recent years. It had been in remission, but came back during the winter of 2006-7. He had a bone marrow transplant in April 2007 and was so blessed because his brother was a match. (See periodic updates below about Gary's progress--and read from the bottom up.)

On April 30, 2008, Gary hit the One Year Mark, and all signs show that the transplant helped him to heal. DNA results came back after his one year check-up, and he's officially "100% donor."

Gary thanks everyone for all the cards and calls and good wishes he's gotten!

(Read from the bottom up to get this in chronological order)

UPDATE: May 13, 2008 (One Year + 13 days) Well, here I am back again. Just celebrated (Apr. 30) my one year post-transplant anniversary. The last time I updated was last January, which happened to be the year anniversary of my major relapse.

To recap - I've probably told you most of this before - In just a few weeks after a perfectly normal blood test, my percentage of leukemic "blast" cells had soared to 92%. This was Jan '07, and inconveniently happened on the day my mother came to visit. We'd just walked in the door from picking her up at the airport. 9 weeks later, I was released from the hospital and awaiting transplant.

Had to wait until my various blood levels got right, managed to be between treatments for the "Write of Spring" (we cut it really close), and went into the U hospital just a few days later. My brother was a perfect match & a good sport, and sister-in-law Barbara was fantastic in helping Pat get through all the chaos.

So back to the present: One year out. Can't believe it. Still have some annoying side effects from treatment & the transplant. Many of these are waning. I've started getting all the usual childhood immunization shots - the old ones just got flushed away. Had 5 of them last week.

All's going well, I have two wonderful doctors who I (obviously) trust with my life, plus an extremely patient and caring wife in Pat, who has been holding down the fort for way too long. I'm back to work on a limited basis, and trying to be patient myself about my lack of endurance.

No jokes this time, but I will relate a couple amusing memories I have of this ordeal. (I don't remember a lot - the doc says short-term memory loss is common with a transplant - Pat says I'm just getting old.)

Walked into my bank's building with my friend Harry - who was pretty much my constant companion and "care-nagger" for over 3 months after the transplant. I had on a ball cap, and was wearing a surgical mask. The security guard freaked a little - asked if he could help me (never got that before), and I said "we're just going to the bank." Wasn't until we left that I realized that I must have been quite a suspicious sight. Glad Harry was with me, or it could have gotten hairy (sorry).

And- Apr. 30, 2007: Transplant Day: The nurse came in with a big bag of stem cells. That's all the transplant is - basically a transfusion. They don't use a pump, it's just a gravity infusion. Well, he didn't like the way it was flowing, so he got a chair, found a hook on the ceiling a hung it higher. And I'm thinking, wow - this is really some high-tech, expensive operation, and here's this guy standing on a chair to hang the bag off the ceiling. Oh well, struck me funny.

UPDATE: New Year's Eve, 2007 - Soon to be 2008

It has been quite a while since I last reported in. I've had some complications in the past month or so which have been, well, complicated. I developed what at first appeared to be what they call "Graft vs. Host Disease." It's technically just the opposite of transplant rejection, in which the "graft" stem cells (from my brother), after wiping out all traces of leukemia, don't take the hint that their job is done.

But, maybe out of boredom, they take it upon themselves to go on a "search & destroy mission," sometimes with ill intent. Fortunately for me, they were pretty lame, and only gave me a few mouth sores. The complicating part was that things looked much worse than they were because at the same time I managed to pick up a "Herpes Simplex" virus (canker sores), which made the GvsH appear to be advanced.

Treatment for this is massive quantities of Prednisone. Have to tell you. No fun at all. Don't know how athletes stand it. Maybe they get a better grade of Steroid than the rest of us. I was looking at at least a year's worth of Prednisone when my doctor decided to wean me off the stuff first to see what happened. End of long story: my conditioned improved. I was suffering only a mild case of GvsH, which, at least for now, they won't have to treat. And, I am now 100% "donor." New DNA, new blood-type, new immune system, the works! Modern medicine. I'm in awe, and grateful as can be.

So that's the latest. Sorry if I've already done this one:

A Priest, a rabbi, and a minister walk into a bar.
Bartender says "What is this, some kind of a joke?


Happy New Year to all.

UPDATE, 8/6 (Day ?: I've stopped counting)

It's been over 4 months now since my transplant and the news continues to be good. I'm off virtually all my medication. My appetite's back - I'm actually hungry all the time. Such a welcome change from feeling like I was "force feeding" myself. My energy level is almost back to normal. The other day - on "Labor Day", of course, I walked to the store (about a mile & a half), worked in the annex for 3 hours - moving in and arranging 4 new 8' bookcases - and walked back home. Can't tell you how good it felt. I'm on a once a month schedule now. My DNA is still holding at 90% donor - we'll check again at the 6 month mark.

Last Friday, in celebration of our one-month anniversary, and my good doctor's report, we went out to dinner at "JP's American Bistro", courtesy of a gift certificate from my niece. Highly recommend the place. Delicious food, great service, nice atmosphere. It's moderately expensive - entree's in the $20 -$27 range. They're on Lyndale Ave S. at 29th St., in the midst of the road construction - but more than worth the trouble.

My mom came to visit yesterday from Arizona by way of my brother's in Michigan. We're having a great time. So much better than the last time she was here in January. Then, no sooner had we walked in the door from from picking her up at the airport, that I got a call from the hospital telling me that my blood tests indicated a major relapse of the leukemia, and I needed to come in the next morning. So mom's entire visit was spent mostly at the hospital. It was good she was here for us, but it certainly wasn't in our plans.

I'll be slowing down on this "blog" for a while. I'll be sure to update after my 6 month anniversary, and then probably shut it down. For one thing, I've run out of jokes. Plus, I'm ready to get back to work. Remember those 4 new bookcases I need to fill. That means about 600 more titles will be added back there. Last November, before all this happened, I had just finished adding and filling 4 large cases. So, if you haven't been back there for a while - you're in for a surprise. Lots of books, with still a lot of open space to browse and relax.

UPDATE: 8/20 ( Day 112): In Praise of Doctors: Doctors get a bum rap sometimes, but not as much as lawyers. And I'm about to contribute to the Doctor jokes canon, but first, I have to say that my three "primary" doctors (guess they all can't be primary, but what the hell) are incredible. They have literally saved my life. And at the same time made me feel as if I was their only patient. The staff at both hospitals have been great all along. I can't believe that this latest leg in my recovery started over 8 months ago.

But now, with sincere apologies to the above, my favorite doctor joke.
Q: What's the difference between a doctor and God?
A: God doesn't think he's a doctor.

Got my bone marrow biopsy results last Fri. No trace of leukemia. My DNA is still holding at about 90% donor - we'd been hoping for 100%- so we're gradually taking me off the anti-rejection medication to see if that helps. There is a fine line here of allowing the donor stem cells to take over without causing damage to vital organs. And the good news - a milestone of sorts - is that I'm having my "Hickman" removed this week. This is a port implanted in my chest, with one tube for infusions (i.e. "shooting up")and one for drawing blood. Since I've not needed any infusions for a while, the convenience of the thing is out-weighed by the risk of infection. I've made some vain attempts at twirling them like tassels - just as well, I could've poked an eye out. I'll be glad to be rid of them.

UPDATE: 8/13 (Day 105): Had my bone marrow biopsy last Friday, and it went surprisingly well. Had a "Nurse Practitioner" do it who looked like he just turned 20. I was skeptical at first, I was originally scheduled to have a real doctor, but after giving him somewhat of a hard time ("Hurt me too much and I'll come back & kick your ass") we went ahead. It was the easiest one of 16 or so biopsies I've suffered through - with the shortest recovery time. I see my doctor this Friday for what I presume will be positive (well, technically, negative) results.

Speaking of recovery, I had a test done about a week ago. I call it a lip-o-suction. It was actually a "lip biopsy" in which they removed 1/2 a dozen salivary glands from inside my lip. Tiny little things. But it involved an incision and a few stitches. Needless to say, it curtailed any tuba playing for a while. But now, all is healed, and I'm ready to start annoying the neighbors once again. So, in the spirit of the upcoming Labor Day holiday, I'm preparing a play list. So far I have:

"15 tons (and what do you get)"
"Whistle While You Work"
"I've Been Working on the Railroad"
"Dayo"
"She's Having My Baby" (sorry about that one)
"If I had a Hammer"
"If I were a Carpenter (and you were a lady)"

Sorry if I mangled some of the song titles, and maybe a few of them are too subtle. But this will be a cappella tuba, which is already strange enough. I'm open to suggestions, and if you're anywhere within a few miles south Mpls., maybe you'll hear me.

UPDATE: August 8, 2007 (Day 100): "Well, I finally hit the magic day. Think I'll go to a movie. I have the bone marrow biopsy scheduled for the day after tomorrow, along with some other tests. Won't have results until next week.

In the meantime, lucky readers, it's time for some more jokes:

Q: Why won't cannibals eat clowns?
A: Because they taste funny.

Q Why is 6 afraid of 7?
A: Because 789

And, courtesy of one of our favorite customers, (who, by the way, is a blonde):
Q: What's green and sings?
A: Elvis Parsley

Q: What did the zero say to the eight?
A: Nice belt.

Q: How do you get a blonde's eyes to light up?
A: Shine a flashlight in her ear.

And my favorite "Aggie" (Texas A&M) joke:
Q: How can you tell that an Aggie has been using your word processor?
A: By all the white-out on the screen.

But seriously, now. The summer is a time of often critically low blood supplies. During my months in the hospital, blood transfusions saved my life. This time around, after my transplant, the doctors have been "flabbergasted" that I've never needed one, but it's good to know that had I, blood was available. Please consider donating. It's painless, doesn't take much of your time, and they pamper you. Call Memorial Blood Centers and make an appointment today. Call 651-332-7000, or 1-888-GIVE-BLD."

UPDATE 8/3: "Day 95: Boy, time flies. Only 5 days to go until day 100 - the benchmark of recovery - I feel fine. Except for one annoying infection that keeps coming back, everything looks good, and I'll be getting a bone-marrow biopsy (double ouch) to confirm that my blood & marrow are 100% donor.

But now for the best news. 2 days ago, on Wednesday, Pat & I got married. We chose the date to coincide with our 5th anniversary of owning Once Upon a Crime. It was a great, moving, and totally informal service performed by the chaplain who works at the oncology dept. at the hospital. I got to know Jim quite well over a period of about 20 weeks as a patient. Most of our interactions were simply hanging out in my room, watching the first couple seasons of "The Sopranos."

Look elsewhere on this site ("The Wedding Page") for pictures.

We've been asked about what our plans are for a honeymoon. Well, the store pretty much ties us down, plus my fatigue factor prevents me from helping out much, let alone traveling. I think back on my favorite vacation I took from my "day job" 5 years ago. We had just bought the store, and I spent my entire vacation organizing & stocking the Annex. I had a blast. So, our plans for the best honeymoon possible are to be able to work the store together. It's doing what we love, and that's what it's all about.

UPDATE 7/21: "Day 82: It's been a while, but in my case, no news is definitely good news. Saw my doctor yesterday, and he doesn't want to see me again for 3 weeks! Was it something I said? Seriously, all the blood counts look good, and I have yet to have had any serious complications or side effects. My hemoglobin remains slightly low, meaning I'm still anemic, and easily fatigued. Maybe now that they won't be drawing massive quantities of blood for testing every week, that will improve. Hope to return to the store soon for at least a few hours at a time. They won't be doing a DNA test until day 100 now. They expect that my blood & bone marrow will be (and suspect it already is) $100% donor. Thanks, Roger.

Pat & I just finished reading Kent Krueger's soon to be released "Thunder Bay". It is his best "Cork O'Connor" book yet,. If you're a fan, you'll be well rewarded. If you haven't yet discovered this award winning local author, this is the place to start. You'll want to read them all. I hope to see you at or upcoming "publication launch party" for Kent on Monday, July 30th at 7:00 p.m."

UPDATE 7/13: "Day 74: By the time you see this, I'll be at least 3/4ths of the way to the magic # of 100 days post-transplant. All continues to go well, I'm almost back to normal, and am anxious to return to the store. It'll still be a while before I can handle more than a few hours, but patience is the key.

Two milestones to report. I've had enough growth to actually need to shampoo my hair and trim my beard (which is almost totally white now) for the first time this year. Felt great. Plus, Pat and I went to the movies today for the first time in years. Saw "Live Free or Die Hard." What an over-the-top blast! We highly recommend it."

UPDATE 7/7: "Day 68: Back to "inside" jokes, a couple things I overlooked. There's the oft' heard, "You can tune a piano, but you can't tuna hot-dish" (this being the preferred Minnesota version). And another piano action part is called the "let-off jack button," which, when combined somehow with "butt felt," would send us all in a tither. And let's not forget "Tuba toothpaste." Always good for some giggles.

Saw the doctor today, and everything's going great. Except for fatigue, combined with insomnia, I feel more like I do now than I ever have before. Going in for blood work once a week, and seeing the doctor every 2 weeks.
"

UPDATE 7/3: "Day 64: I think it's time for some jokes. Lori, our marvelous webmaster, is probably going "Geez, give a guy a forum..." right about now, but I'm having too much fun. Since I just admitted that I'm a tuba player, I'm going do a few of my all-time favorite musical jokes. To some of you, they might make you go "huh?" - but to me they're hilarious. I'm sure every profession and sub-culture has their own jokes that only they understand. I, for instance, don't get engineering jokes, but get them (engineers) all together at a party, and it's a regular laugh-riot (except maybe for the spouses). Can't remember any piano tuning jokes for some reason. Except there is one critical part in all pianos called "butt felt" that we'd have some fun with.

But on to the jokes. If you don't get them, ask a musician. He or she will probably laugh a lot and try to explain them, but you still won't think they're funny. Amusing, maybe.

Q: What's the range of a tuba?
A: About 30 feet if you have a good arm.

Q: How do you make a trombone sound like a french horn?
A: Jam your fist in the bell and miss a lot of notes.

Q: How do you get 2 piccolos to play in tune?
A: Shoot one of them.

Q: What do you call 2 piccolos playing a 1/2 step apart?
A: A unison.

And my newest all-time favorite, compliments of my sister (who's a french horn player):

This kid comes home from his first tuba lesson, and his dad asks him how it went. Kid says, "Great, I learned how to play a 'C'." The next week, after his second lesson, he comes home proudly announcing that he just learned how to play a "G." Third week, the kid comes home several hours late from his lesson, which worried the father no end. He asks his boy what took so long. Kid says "I had a gig."

UPDATE 7/2: "Day 63: Today, I get my DNA test (see below). I'll let you know next week about the results. But enough about leukemia, and more about me.

Yesterday was my 58th birthday, and I am counting - everyone's a blessing. Way too long ago, as a teenager I began my first career as a professional tuba player, with a dream of being in the Chicago Symphony. (I studied with its tuba player for 6 years). The Chicago Symphony had other ideas. But after some success at making a living, I stumbled upon piano tuning/repair as a backup. I soon became pretty much obsessed with it, had my own rebuilding shop and a relatively large and loyal clientele. Did lots of concert tuning for big name artists, gave clinics, and generally had a ball. Did that for nearly 30 years until our 1st anniversary of owning OUAC.

All this time, since my teens, I had this fantasy about owning a book store. I've been collecting books all along, as I could afford them. Imagine if I would have had the foresight to buy some titles 40 years ago, but that's one of the thrills of book collecting. I've done a fair amount of writing, but strictly non-fiction: technical articles for piano journals and a smattering of book reviews for Crimespree magazine. I learned long ago that I'm no good at making things up. I wrote an awful short story, that discriminating readers (namely, Pat) said stunk.

So that's it for a "thumbnail sketch" of me. I'm having a blast, feeling great, doing what I love with a partner whom I'm crazy about.

Keep those birthdays coming.
"

UPDATE 6/29: "Day 60: Saw the doctor yesterday - I'm down to just weekly visits, and my pill intake has been reduced to less than that of your average sports star. I'm feeling better than ever, and my progress, if not unprecedented, has been excellent.

Today is the opening day of the 17th annual Twin Cities Bookfair. I've been to all but two, 8 or 9 times as a vendor. Pat & I are going together as customers for the very first time. It will also be the first time for me to actually go out "in public". We're excited. The doctor even gave his permission for me not to wear my mask (with discretion), but advised against shaking hands. So if you read this before you go today, you'll understand that I'm not being rude.

Being day 60, its also time to recheck my DNA. Results take about 7-10 days, unlike most TV shows. My doctor expects to see 100% transformation (insert mad-scientist 's manic laughter here). This would also mean that my blood type will officially change from A+ to A-, but I'll take that as a good sign. Speaking of transformations, what with my brother's blood taking charge, my sense of humor (if you can believe this, has gotten even more subtle and arcane). He did give me one virus, which I'll never hold against him, that about 80% of the population has anyway. And sometime in the near future, I'll need to be reinoculated for a whole slew of childhood viruses."

UPDATE 6/19: "Day 50: For some reason, and I can only hope that they know what they're doing, The "U" considers the first 100 days after transplant to be the most at-risk period. Nice round number at least. Can't believe that I'm half-way there. I'm coming out of the woods.

Soon, I assume my donor/brother's blood will have completely taken charge, destroying any sign of leukemia while leaving several vital organs alone. Generally, I'm feeling better all the time, and more like my old self, except for a couple things: I've noticed that I'm starting to favor my left hand, and beginning to understand quantum physics. Still working on the Mr. Spock raised eyebrow thing. (Some among many of my brother's endearing traits). Time will tell."

UPDATE 6/12: "Day 43: All's been going pretty good yet. The docs are tweaking my medication a lot - and taking lots of blood tests. Mostly to insure that they don't wreck my kidneys while trying to cure me. It's apparently a fine line. Things are actually boring & uneventful - which the doctors like to see ("boring's good"), in which case I'm doing great. Pat's been a gem with running the store and doing all the other stuff I can't do yet. And we are blessed with a host of volunteers to help both at the store and here at home. The doctor said I may be able to get back to work in a couple of months.

Test results are in from the DNA part of my bone marrow biopsy. My Donor/Brother's blood now constitutes over 91% of my blood . It's taking over (and ahead of schedule). That last 9% that's still mine is putting up a fight (can't hardly blame them) - but they failed me in the past - what with getting leukemia and all - so screw 'em. This little war they're waging is wearing me out. Hope they come to a speedy & merciless end."

UPDATE 6/1: "Day 31: A whole month after the transplant, and all is well. My pill intake has been cut in half, no transfusions, and basically normal blood counts. They did a "bone marrow biopsy" last week - I think I've had something like 14 of them so far. Funny how you don't get used to them. I do get out occasionally - I'm not "in a bubble" or anything - but I do wear a surgical mask. Funny thing: the other day I went into our bank, and what with the mask and sunglasses, the security guard got a little nervous.

I'm waiting for results to come in from the bone marrow biopsy - they want to see what percentage of my blood is my donor brother's, and what part is still mine. Curious thing about these transplants. When all is done (6-12 months) I will no longer have my own blood type and DNA - my brother's takes over. Could make for an interesting plot point for any of you authors out there. You're free to play with it; an acknowledgment of some sort would be appreciated.

Speaking of plots revolving around leukemia, 2 books in a row that I read recently dealt with the subject - one included bone marrow transplants. Good books they were, yet some of the facts seemed off. We (Pat &I) both just read "Down River" by John Hart, his 2nd book after the exceptional "The King of Lies." Non-series, we think "Down River" is exceptional. Look for it this summer. (And it has nothing to do with leukemia.)

I'll be back with more - especially after I find out how this blood metamorphosis is coming along."

UPDATE 5/21: "Day 21 (after transplant). Doctors continue to be amazed at my condition. Especially the by the facts that I haven't needed any transfusions, and haven't yet hurled. Appetite is down, and I'm doing a lot of reading and napping. There's gonna be some great books coming out this summer."

UPDATE 5/16: Here's how things are going, in Gary's own words: "So far, all is going swimmingly. Blood Counts are basically up to normal. Haven't had to have any transfusions yet, which the doctors find to be amazing. I seem to be weathering through all this with colors. Except one medication (I'm taking over 30 pills a day) depletes Magnesium, so I'm taking enough Magnesium supplements to trigger a metal detector. Anyhow, I'm feeling great, but tire quickly."

UPDATE 5/9: Gary has been making AMAZING progress. His platelet count is good, his recovery rate has been twice as fast as expected, and he's been discharged from the hospital two weeks sooner than expected. He still can't have visitors at this time because his immunities are low, but he's definitely healing well. The doctors predict that with 12-14 weeks of rest and laying low, he should return to normal. Keep those cards and letters coming!

UPDATE 5/1: The news is very good! Pat writes: "Everything went so perfectly we are elated. Radiation was Sunday - no problem with that. Gary's brother surprised everyone, doctors and all, with more than enough of the good cells, and he is flying back home tonight. Gary is feeling great at the moment. The side effects and rejection meds will cause him some discomfort, but I am betting he will get through this with flying colors."

UPDATE 4/29: Gary had radiation today to ready him for tomorrow's procedure. So far, so good.

UPDATE 4/25: Gary is getting chemo all this week, will have radiation on Sunday, and the bone marrow transplant is on April 30. He's feeling a-okay at the moment.

9

 

 


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This page last updated October 29, 2012