Sunday, February 28, 2010

MDS Becomes AML - Hair Today, Gone Tomorrow?

A funny thing is happening on the hair-loss front. Or, perhaps better to say hair loss/gain. The stuff is disappearing from my head. But, it's reappearing on my face.

True, the beard is regrowing in spots and patches, and it's hardly visible in places, but sure enough there it is.

Meanwhile, while there's a thin covering atop the cranium, the sides are totally bereft of foliage.

Why is this?

We conjecture that the head hair loss results from sleeping. The sides of the head rub on the pillow. The top does not, since I don't sleep standing on my head.

But, why the beard creeps back to life is something of a mystery. We assume it, too, will disappear—as it did last time—as the days wear on. But, for the moment, well, there it is in a nascent form.

In truth, I have no idea what it means. But, I'm taking up a new nickname for the duration of this phenomenon. Just call me Patchy Face Baldy Head.

For them what tracks 'em, today's counts:
  • Platelets: 52,000
  • Hemoglobin: 9.2
  • White Cells: 3.7
Not bad. But, what's up with the hemoglobin? It's actually gone up.

Who knows? Maybe that's why the patchy-face thing is happening.

Saturday, February 27, 2010

MDS Becomes AML - Cleared to Travel. Soon.

Some begging was required. Some cajoling. A few promises. But, this AML-MDS victim has been cleared to get back on an airplane. Come March 23, he'll be boarding flights to Sun Valley, Idaho, to attend the annual ski journalists' national meeting, where he'll be able to fulfill his duties as the organization's paid secretary-treasurer.

This is so good for my head.

Today's counts are pretty good, too:
  • Platelets: 74,000
  • Hemoglobin: 9.0
  • White Cells: 5.2
Still sinking slowly, as they should. Dr. O says they'll continue downward til about Tuesday, then start back up. Stomach plumbing and all vitals are functioning fine.

On the Road Again

The terms of the travel deal are not onerous. My promises:
wear a mask on the plane
  • carry disinfecting wipes and use them on the tray tables, etc.
  • carry Purell and use it copiously on hands
  • refrain from too much hand shaking and welcome hugs
  • and, needless to say, no skiing.
It will be a bit difficult to be hanging around Sun Valley—one of the continent's finest ski mountains—without putting on the boards. But, I fully realize that I'd not be able to ski more than half a run on that big hill, anyway.

The good news is that Ketchum ranks among the finer ski towns, as well, so there will be plenty of window shopping, gallery hopping and just wandering around to do. I'll walk on the treadmill and, who knows, I might try my hand at fly fishing.

Needless to say, I'm excited. I've clearly reached a point where I need to something significant to look forward to, and where I'm feeling useful. This should do the trick. Plus, knowing that immediately upon my return I'll be landing right back in the hospital for more consolidation treatment (or, if we're extremely lucky, for the beginnings of bone marrow transplant) keeps things in perspective.

For all the traveling I do, I hate to fly. But, this time I'm psyched about getting up at 3:30 a.m. to make a 6 a.m. flight, being crammed into that coach seat, being charged to check my bag, not being offered any in-flight food, and wondering if we'll make connections in Chicago.

What fun.

Friday, February 26, 2010

MDS Becomes AML - Counting Your Days Away

This morning I woke up waxing philosophic in a kind of existential way. I realized I'd been clock watching and counting the days.
  • A few more hours til the next chemo.
  • An hour til the current chemo is done.
  • Today's the last day of chemo.
  • Just another week til I'm out of here (hopefully).
  • Three more weeks til the next chemo.
  • Another six weeks and we might have a bone marrow donor.
  • Four to six months til we come out the other side and get healthy again.
I haven't counted hours, days, weeks and months like this since I was in high school, wishing the school year would end.

The problem with that (as I realized way back then) is simply this: when you count the days away—even if you're counting away time filled with pastimes you'd rather not be doing—you're counting your life away.

As I figured out during adolescence, I must remember to make the most of my time, regardless of having to fill it mostly with things I don't want to do.

It's a bit more difficult to do that now than it was way back then because the time frames involved are more open-ended. In school, you knew when Christmas vacation, spring break and end-of-school-year were coming. Here, we don't know exactly when the next phase is coming. Which leads to much conjecture. And clock watching.

So? What to do?
  • More reading.
  • More writing.
  • More work.
  • More focus on doing what I can do right now.
All while keeping my eyes on the ultimate prize.

I can do that.

Okay—here's today's daily tally:
  • Platelets: 87,000
  • Hemoglobin: 8.7
  • White Cells: 4.2
Counts are going down, as expected. But, looks to me like there's no reason to think they'll bottom out too low. The white's will dip underneath the normal range (4.0), but we shouldn't be looking at anything like the dangerously low hemoglobin and platelet numbers that we'd experienced last time.

All good.

Now, there are potentially just eight days left til I might get out of here. But, who's counting?

Thursday, February 25, 2010

MDS Becomes AML - Good Counts But Endless Treatments?

Business first (as my friends at Continental Airlines would say).

Today's counts:
  • Platelets: 109,000
  • Hemoglobin: 9.5
  • White Cells: 6.1
Those are pretty good counts. With one more day of chemo on the schedule, the question, of course, is how low will they go? Ah, only time will tell.

Conferred with Dr. O this morning on how many of these consolidations we'd actually have to do. Basically, it sounds like we keep doing them until a morrow donor is found. So, chances are I'll be in here for two-week sessions, after two- or three-week home intervals, for the foreseeable future.

C'mon donors!

It is a bit strange to be building my life around indeterminate hospital visits. One would like some respite from this routine. Which is why the transplant, as it's the only chance for any kind of respite. But, somehow imagining myself doing these two-week stints for another three or four months can be onerous.

Especially since it's snowing outside, and I should be playing in it.

And, especially since I feel fine. I'm chipper, have good energy, am getting work done, and have been downright outgoing with all the staff. Much more outgoing than normal.

Probably the extroversion is generated by the socks.

The snow is complemented by e-mail alerts announcing great powder skiing everywhere from here to California. Which just makes me more determined than ever to get back out there.

"Think Snow" has always been a good mantra.

Wednesday, February 24, 2010

MDS Becomes AML - I.V. Free No More

Freedom, as the right wingers tell us, isn't free.

And, apparently, it's short-lived.

My freedom from Ms. I.V. Pole, Queen of Chemo, lasted only one morning. Early yesterday afternoon Kate-the-Nurse came charging in with a bag of potassium-injected fluid, unceremoniously hung it on Ms. Pole and connected it to my PICC line.

"On no," I cried. "How long does this have to last?"

"All the time you're not getting chemo," she replied with nursely efficiency. "You've gotta have fluids to prevent kidney problems from the chemo."

"All the time?" Were those tears forming?


So, my IV-freedom ended.

And, considering the price we're paying to be lodged in this hostelry, it's apparent that, indeed, freedom is not free. Nor are we free, even at these prices, to enjoy freedom.

I'm bummin'. Not only does this cut way back on my ability to move about the place, but the fluids send me running to the boys' room every two hours—or less.

Now, for the statistically minded, today's counts:
  • Platelets: 110,000
  • Hemoglobin: 9.5
  • White Cells: 7.4
The platelets yesterday (I forgot to ask) were 140,000. The decrease is expected with the chemo, but we haven't seen 140,000 since early December.

No wonder I don't feel sick.

But, alas, Penny has taken ill. Some kind of stomach mess going on. Probably from stealing some of my hospital dinner last night. I've been telling her the food here stinks. She never gets sick, except apparently when I'm lodging here. Hopefully, it's just one of those stomach things that pass in a day.

That would be nice. 'Twould be nicer if this MDS/AML thing would pass in a day. Or even two.

Tuesday, February 23, 2010

MDS Becomes AML - The World's Most Popular Hospital Socks

World's most popular hospital socks. Photo by Penny Kaplan. Socks by Leena Kuivanen. Feet by MDS Mitch.

MDS Becomes AML - You Can (and Sometimes Must) Go Home Again

Back in the hospital. It's like old home week here. Everybody knows my name. Everybody remembers what the problem is and what I'm here for. Even the guy who wheeled me down to x-ray remembered me—as did the woman who coordinates the order in which patients go into x-ray. She greeted me enthusiastically, saying "We've met!"

"Several times," I replied. With a smile.

This place is rapidly becoming my second home. Not really what I had in mind. I've always wanted a second home in the Berkshires or Vermont. With five or 10 acres, if possible. And a mountain view. Oh well.

It's an odd feeling to come here while feeling fine. When I arrived last April and this past January, I was really sick and I knew it. There was a logic that said, you need to go to hospital.

But, here I am, almost hairless but feeling rather chipper, and basically I'm saying to my keepers, "Sure fill me full of hi-test and make me feel miserable. And, while you're at it, feed me some of that god-awful food you serve up around here. Why not, I'm feeling great."

Luckily, Penny and Laina will take turns bringing in dinner. There are limits to my culinary tolerance..

The biggest news so far is my socks. Hand-knitted for me by Leena-the-Elder (namesake of Laina-the-Younger) they're bright red-gray-pink striped woolen foot covers that fit perfectly and—Penny is glad to see—don't cut off any circulation at the ankles. (When I get a camera in here, I'll publish a photos of them.)

Everyone—and I mean everyone—has commented, "I love those socks."

Whilst I was waiting down in x-ray for a return push to the room, an older woman (well, older than I) was wheeled in and parked next to me. Her knit hat gave her away as a cancer patient, too. The first thing she said was "I need a pair of socks like those!" a chat followed about the need for warm, loose socks  which, after I complimented her hat, morphed into long discussion about how to keep one's head warm when you're not accustomed to being bald or semi-bald.

My newfound friend related how she wraps a turban around her head for sleeping at night, but "sometimes it comes undone and it wakes me up immediately. It's cold!"

I agreed. Laying one's head on the cool side of the pillow is a whole other experience. But, I've assimilated well enough now that I no longer wear my cousin Susan's knit hat to bed.

So, the deal here this time is this:
  • two hours of chemo at a 12-hour interval on Monday, Wednesday and Friday.
  • Tuesday and Thursday off
  • discharge as soon as my counts return to something normal and my GI functions show no ill effects.
This schedule caused a big sigh of relief. What I'd understood was two 12-hour infusions on the three days, which would've meant being tied to my five-wheeled friend (a.k.a. Ms. I.V. Pole Queen of Chemo) for all of the three days. This way, I'm Pole-free most of the time.

Oh freedom.
Oh-oh freedom.
Oh-oh freedom over me.
Before I'll be a slave [to Ms. Pole], I'll be buried in my grave
And go home to my lord and be free.

Monday, February 22, 2010

MDS Becomes AML - Back to the Big H

Well, it's H-Day. Return to hospital day. Or should we call it CC-Day. Consolidation-Chemo Day? No matter, it's back to the grind.

It's difficult not to be discouraged by the prospect of multiple consolidation treatments when I'd really rather just get on with the transplant. I'd have to be insane to welcome more hospital stays over fewer.

But, at least I know I'll be well attended on the oncology floor, and that we'll be killing off rogue leukemia cells bolsters the mind. Perhaps it's best to think of this as some kind of Bruce Willis film in which we blast the crap out of the bad guy cells and all of us good guys go home a bit scathed but happy in our victory.

We didn't make it to the theatre yesterday. One of us declared himself too tired to make the trip into the big city and fell asleep instead. Perhaps that a small sign that it really is time to return to cell killing treatments. It's always a bit disturbing to feel the fatigue and be unsure if it's blood counts falling, or just normal post-chemo tiredness.

So, we missed the play, and now it's back to the big medical center, where they'll stab me, continually count those blood cells and infuse me to kill all the cells in sight.

Pass the bad-cell-blaster gun, please, I'm ready to take aim.

Saturday, February 20, 2010

MDS Becomes AML - Living Day to Day

Yesterday was a totally down day. No energy. No focus. Unable to do much other than try to sleep, and sleep wasn't happening either.

Which raised certain fears. Was this the beginning of falling blood counts? Did it have anything to do with a leukemia relapse?

Or, was it just the result of a poor night's sleep the night before?

The answer would appear to be the latter, since I'm up bright and early this morning and seem to be feeling fine. But, those nagging doubts may now be part of the lifestyle.

I came across a piece the other day by a writer named Judy King about living with leukemia Cancer Diagnosis: No Chirps, Please that begins:

The outer trip to the oncologist’s office takes about fifteen minutes from my house. The inner journey, which has been going on for twenty-four years, continues. One can be in remission from leukemia, but there’s no knowing for how long. It can return, seemingly from one day to the next, with no warning except perhaps for unusual fatigue and weird sweating. I’ve learned to live with the uncertainty of remission by telling myself, “For the moment, all is well.”

King goes on to muse about the difficulties of handling other people's reactions to having cancer, and importance of maintaining a sense of humor. She concludes with

If you meet someone traveling through life with cancer or any other catastrophic illness, and you don’t know what to say, try asking, “What’s it like for you?” You can’t know how they feel or what it’s like to be given a life-threatening diagnosis. Just be there for them as best you can. That’s more than good enough.

I'm all in tune with Ms. King's thoughts. But, I'm petrified of the idea of traveling through life this way for 20-plus years. Talk about the Sword of Damocles hanging over your head. Whoa!

I think I'll keep my focus on more mundane things, like the Great Hair Debate. Laina says just shave off the remaining few head-top strands. But, somehow I can't bring myself to go to the shaved head look, even if it would be temporary in the long run. Probably, however, the next few rounds of treatment—however many "consolidation treatments I must endure and certainly the bone marrow transplant—will take care of the situation by causing what's left to disappear anyway.

Somehow focusing lightly on the mundane, on silly nonsense that's really unimportant, makes things easier.

Friday, February 19, 2010

MDS Becomes AML - I Can Smell It Coming

I started spending yesterday by moping around. Luckily there were enough mundane chores that had to be done—finish the taxes, write some checks for the ski writers' group, make of edits on a paper Laina's writing and try to discover why the health insurance folks think we're responsible for a Procrit shot the Dr. O jabbed into me on Dec. 29—to distract me and get me into a working frame of mind.

The more distracted right now the better. Because I'm not going to fib, this impending return to the hospital is a bummer. Even though I knew it was coming at some point.

Images keep running through my head. Images of
  • trying to get comfortable in a hospital bed
  • being awakened at 5 a.m. to find out if I still have blood pressure
  • trying to figure out a comfortable position from which to watch the TV, which is a big screen but hangs from the ceiling at an odd angle
  • nurses aides busting into the room to change bedding
  • cleaning women who speak little English, breath heavily through their mouths and mop around you no matter where you happen to be in the room or what you may be doing
  • and, of course, trying to manage the five-wheeled IV monster.
And, the smell haunts me. I can't really describe it, but there's a smell that screams "hospital!" It becomes imbedded in your olfactory memory during/after a longer term stay.

It's some kind of combination of the newly laundered sheets, disinfectant and Lord-knows-what.

Sometimes I smell it in my sleep.

I guess I'd best get used to all this because it looks like an awful lot of my near-future time is going to be spent in one medical institution or another. Sometimes I still can't believe this is happening.

As me old mum used to say, "Keep your chins up."

I'm trying, ma. Honest. I can tell, too—because whenever I look in the mirror, I can see my now beardless chin all too well. It's up.

Thursday, February 18, 2010

MDS Becomes AML - Here We Go Again

Oh crap. It's back to the hospital we go. And me, I was just getting my feet back under me and getting used to being home.

Seems that Dr. O, after conferring with Dr. T, decided that a consolidation chemotherapy treatment session is in order. That was not surprising.

She wants to start on Monday.

That was more than surprising. It's downright disheartening.

Not because I don't understand why it must be done. I get that. But, because I thought I had more time to, well, just be normal. And because she's talking 2-3 weeks of hospitalization, not the 8-10 days I thought would be the incarceration—uh—stay.

And, even more of a shock to me, she said the "normal" course of consolidations (for those not heading to transplant) is four sessions.

Which means I'm probably in for this more than once by the time we find a marrow donor.

But, if it's back to residence on the oncology floor, so be it. Let's just hope that my digestive tract behaves itself this time, which would mean a minimal stay rather than maximum.

In the words of the great Hebrew philosophers, "Oy vey."

Wednesday, February 17, 2010

MDS Becomes AML - Another Little Victory

Yesterday I put in 20 minutes walking time on the treadmill and managed to do three sets of 20 ab crunches.

Another victory over the mundane.

The doctors and certain folks around here keep telling me I must put on weight, re-gain some of what was lost in the hospital.

Fifteen pounds were lost, by the way. And, I must re-gain the weight so I am better prepared for consolidation chemo and eventually for bone marrow transplant.

By the way, in a brief conversation with Dr. O, she indicated that she likely will want me to undergo at least one consolidation chemo treatment while we wait for the transplant donor. I can't wait.

Meanwhile, to meet the weight gain demand, I'm eating
  • ice cream
  • cake
  • cookies
  • pasta
  • bagels with cream cheese
  • bagels with peanut butter and jelly
  • and any other high-calorie foods I can think of.
Wait—not to worry, I'm also eating good-for-you foods like cooked vegetables, some fruits and even some meat for protein (still not supposed to eat raw veggies or fruits that aren't peeled).

But, it occurred to me that high-sugar, high-calorie foods probably aren't sufficient. After all, an incredible amount of muscle atrophy has been suffered from lying around in a hospital bed for a month and three days (but who was counting?), with "exercise" being defined as a slow walk down the hall and back.

For the first time in my life, I've got skinny legs. And biceps or triceps? Fuhgettaboutit.

If one is going to add weight, one should also add some muscle mass into the mix. And, adding muscle requires exercise.

So, onto the treadmill I went.

And, onto the treadmill I will try to continue to go on a daily basis from now on. I'll also try to mix in some upper body exercise with the elastic bands I have left from my shoulder surgery.

Remember the shoulder surgery? Remember the odd little spot that showed up in the MRI that sent all the docs into a tizzy because it might be bone cancer?

Seems like a different lifetime now.

But, in hindsight, that's where it all began. Even if the docs all say that the spot wasn't bone cancer and it had nothing to do with the current situation, I can't help but think it was connected somehow. Still, it created my relationship with Dr. O, and that allowed me to get instant blood test results last April when the MDS first appeared, and instant lodging on the hospital oncology floor.

But, I digress.

Now it's time to gain weight and add some muscle mass—all so I can be better prepared to return to the hospital and be zapped again.

Kind of like fattening the cow for slaughter, isn't it?

Monday, February 15, 2010

MDS Becomes AML - Transplant News Good & Not-So-Good

The meeting with Dr. T went well. There's some good news and not-so-good news.

Not-so-good: my brother is not a bone marrow match.

This, of course, means that a search of the international bone marrow donors registry must be made to find a match. The good news there is that a preliminary computer scan of the registry came up with 50 possible matches.

These aren't confirmed matches, but strong possibilities. Possible matches are made using six markers that are found in initial blood tests. In 50 cases there were six out six matches to those markers.

To be a confirmed match, further "typing" blood testing must be done on both me and potential donors, using ten markers to define an actual match. The doctor looks for at least nine out of ten, but prefers ten out of ten. When a donor with that high percentage of matching markers is identified, we can move forward with the transplant.

Fifty, we were told, is a pretty good preliminary result. Sometimes the prelim scan yields only a few. So, there's reason for hope there.

Being conservative in all her projections, Dr. T said it would be two to four months to confirm a match. Obviously we're rooting for the shorter period.

The entire experience at the Transplant Center proved reassuring. Bone marrow transplants are what these guys do. They are well organized and have the whole thing down to as much of a routine as is possible. What's involved in the transplant itself—exactly what chemo drugs to use, whether or not to do radiation, etc.—depends on a whole bunch of variables (both in me and with the donor) that can't be decided until all the pre-transplant test results are in and an overall assessment of how to proceed can be made.

The transplant hospitalization lasts a month. It's followed by two follow-up visits to Dr. T per week for a month, and then once per week until 100 days have passed. Immuno-suppressant drugs must be taken for about a year.

To Consolidate or Not to Consolidate

So, the next question is whether Dr. O wants to do a consolidation chemo treatment or two between now and the time a donor is found. I'll consult with her on that later in the week, but my guess is that she'll want to do that.

Consolidation chemo is done in-hospital, lasts for about five days and isn't as intense as the initial chemo treatment I had last month.

Not that it's anything I want to do, but nobody's asking me.

Can I Be Tested to Be a Donor?

Any number of friends, colleagues and extended family have volunteered to be tested as potential donors. I'm flattered and humbled to know that there are so many folks who are so ready to help.

I asked Dr. T about friends and relatives being tested and she said what I thought she would: the testing is expensive and the chances of being a match are tiny; it's not worth it. If you really want to donate, it's best to make yourself available to all potential recipients by volunteering for the registry.

But, volunteering for the registry (for which you must be under age 60) is not about donating to me. It's about potentially donating to anyone in need. For me, or for any patient in need of a donor, the registry, which contains millions of volunteers around the world, is the only logical way to go.

So, there we have it. If we're lucky, we might be through this process in four or five months. If we're not so lucky, it may be seven or eight months.

Either way, if you want to find me next winter, you'll have to look for me on the slopes. There's a lot of missed ski runs to make up for. And I intend to go for it.

MDS Becomes AML - T-Day

Today's the day. At noon, we meet with Dr. Transplant in hopes of coming away with some idea of how we're going to proceed. I confess this is generating some tension for me. I've conjectured a lot about what I think will happen—getting on with the procedure in short order if my brother is a bone marrow match; or waiting weeks or months til a match is found—but that's just me conjecturing.

What I need right about now is answers.

Back in Psych 101, I believe this would've been classified as an approach-avoidance situation. It's nothing I want to do, but it's something I want to get done as soon as possible.

When I visualize more time in the hospital, being rendered exhausted and useless with multiple IV tubes stuck into me, with pre-surgery vulnerability to infection and post-surgery vulnerability to rejection of the new bone marrow, I cringe.

When I visualize myself completely healthy, playing golf, skiing, riding mountain bike and traveling again to spots around the world, I smile.

The trick, obviously, is to keep the keep the ultimate, positive goal in sight, and to ignore the trauma required to get there. When the IV is connected, the chemo injected and the radiation generated, I'll just deal with it. Because strolling that golf course, or flying again to Paris are worth whatever it takes.

So, noon is the witching hour. (Depending on how long we have to sit around the waiting room waiting.) Let's just hope we come away with some answers, not just more conjecture and questions.

Sunday, February 14, 2010

MDS Becomes AML - A Walk in the Park

Yesterday Penny and I took these MDS/AML-wracked bones for a walk in the park. We strolled (strolling being about the fastest pace I can muster right now) up to the school and back, a distance of perhaps a third of a mile. The snow is piled pretty high, but the walks are mostly clear and, except for one section, there was no danger from slippery stuff underfoot.

It was delightful and uplifting just to be out there. And, it was reassuring when compared to past experiences.

As I've noted to some by e-mail, when I came home from a 3.5-week hospitalization for a liver abscess in autumn of 2001, I was pretty weak. Still, after a few days, I decided that I should be able to walk the dog. I hitched her to her leash, loaded down with pooper scooper bags, went out the back door and headed up the path to the park, a distance of about 50 yards.

I couldn't make it to the park.

We had to turn around and return home. The poor dog was very confused. She never even got to pee.

So, by comparison, I'm already in much better shape this time. Not only did we make it to the school and back, but Penny didn't have to put me on a leash.

Today we intend to get back out there again. I'm hoping we add more of the park to our circular route, perhaps another third of a mile.

It's imperative, psychologically and physically, for this boy to get himself moving and active. I've never been too good at sitting around the house.

If all goes well, I'll begin taking myself out for walks. And, then I'll add the treadmill at a mild pace.

No pooper scooper bags will be required.

Friday, February 12, 2010

MDS Becomes AML - Counts Up & Holding

Yesterday's counts:
  • Platelets 73,000
  • Hemoglobin 10.5
  • White Cells 5.3 and in perfect balance
I was admonished by Dr. O to consume more calories. "You need to gain back the weight you've lost," she said, "so you have strength for the next round."

She suggested macaroni and cheese and ice cream. As she's Indian, we wondered later if folks from India eat a lot of mac-and-cheese. Never saw that on an Indian restaurant menu.

Laina, upon hearing of this doctoral statement, immediately announced that she would be stopping at Van Dyke's en route to our house today. Van Dyke's produces the best ice cream in the area. Laina vows to being "a huge container" of vanilla.

I did not refuse the offer.

Eating has become something of an issue. Not the food—lord knows Penny does a great job with that—but the quantities. Apparently after one has been fed by tube for five days, and has undergone intensive chemotherapy along with that, the stomach shrinks. I'm eating tiny portions and feeling stuffed. Actually, for weight control, I wouldn't mind having this continue after this medical adventure is over.

Anyway, I know I should be encouraged by the good blood counts. It shows that the chemo has done its job and the AML is in initial remission. But, I can't help ponder how temporary this all is, and that it will mean nothing without a successful bone marrow transplant. One could get pretty down pondering such things, thinking about the ordeal to come. But, I'm keeping my eyes on the ultimate prize.

The Journalists International Ski Club, of which I'm a member, will be gathering in Argentina to ski in late August or early September. I'm thinking I just might be able to be on that trip.

Wouldn't that be a kick.

Thursday, February 11, 2010

MDS Becomes AML - Singin' the Hairless Blues

I'm freezing.

It's usually pretty damned cold in this house, but this morning I can't get warm at all. A puzzlement.

Then, it dawns on me. The chemotherapy for the AML has left me bereft of much hair. And then Penny trimmed the cranium covering yesterday in an effort to make me look a bit less like a madman.

And most of my beard had dropped off; the remaining stubble has stopped growing.

I'm not bald. Well, not on top anyway. But, there's nothing on the sides, and but little on the top. I haven't been this shorn since I was 10 and crew cuts were all the rage.

No wonder I'm freezing.

I'm sitting around the house feeling like a constant breeze is assaulting me from the neck on up, when the common skiers' wisdom dawns on me: on cold days, wear a hat or a helmet because 80 percent of your body heat goes out your head.

Aha! Luckily, my cousin Susan, a real Vermonter, knitted me a hat whilst I was in hospital. It's perfect for this situation. I put it on and—volia!—I'm toasty warm.

So, here is sit, head covered indoors like some old orthodox Jew, waiting for the hairs on my chinny-chin-chin, and on my tiny skull, to return to me.


Wednesday, February 10, 2010

MDS Becomes AML - Home Again & Glad of It

As the old song "Hello Stranger" would have it

It seems like a mighty long time
(shoo-bop shoo bop, my baby, ooh).

After a month and three days (but who was counting) of being injected, poked, prodded, monitored, scanned and infused, it feels so good to be back in my own house, to sleep in my own bed, the be eating real food, and—thank goodness—to have access to Turner Classic Movies again.

Yes, there are still long periods of the day when I'm capable of doing little else but lie around in front of the TV, and there is no substitute for TCM, not only because of the classics it shows, but because it's ad-free. Just yesterday I watched all or part of three Gary Grant films. It doesn't get much better than that.

But, there are parts of the day during which I'm now rather functional. There's a lot of business to catch up on, and ski columns to continue to write. I'm trying to stay off the phone, which uses lots of time and too much energy, but am happy to read and reply to e-mails.

The important thing right now, beyond regaining strength and indulging in Penny's cooking so as to recoup some of the weight I've lost, is to adjust.

Adjust to the what?

The fact that this is an interim step, an island of calm, if you will, before the next storm. Because this is the situation as I understand it:

The initial chemo treatments seem to have put the leukemia into temporary remission. That in itself is not enough, however.

One choice (probably not to be taken) is to keep going with what's called "consolidation" chemo treatments, which means two or three 5-day, intensive treatments requiring 8-9 day hospital stays. That would drive the leukemia into something resembling long-term remission. But, even with the leukemia in remission, we'd still have the MDS to deal with—and that'll eventually cause a repeat of the leukemia or some other problem.

So, the only real choice is to undergo a bone marrow transplant.

Exactly when this will happen and how long the hospitalization will be I can't say. The first obstacle is to find a donor. The best possibility for a match is my brother—and that's only a 25 percent chance. But, he has been tested and we should know by next week if he is a match.

If he isn't, then a search must be done of the National Bone Marrow Donor Registry. That can take a couple of weeks or a few months. Once we have a donor, we'll proceed with the transplant, and if all goes well that will eliminate the MDS and put me back to being disease free.

If it doesn't work, frankly, I have no idea what happens.

We have an appointment with Dr. Transplant for this coming Monday. Hopefully, that will give us a better perspective on the timeline and possibilities for success.

So, there's some serious, intensive treatments still to come and endure. I honestly can't say I'm "ready." But, I can honestly say I'll answer the bell when it rings, and that I'll give it my best imitation of the Mohammed Ali rope-a-dope (or perhaps the Mike Tyson ear-bite technique) with full intention of persevering and coming out victorious in the end.

Not to sound melodramatic, but this is a life-and-death struggle. Yet, I remind myself daily that not so many years ago a diagnosis of AML was tantamount to a six-month death sentence. Given that, I'm already way ahead of the game, which makes it that much easier to gird the loins, let the docs do their thing, and expect to come out fine when it's all over.

Meanwhile, let's hope that the Hackensack University Hospital Bone Marrow Transplant Center has TCM on their TV's.

Tuesday, February 9, 2010

MDS Becomes AML - Coming Along

Daily Mitch Report – Tuesday, February 09, 2010
All is still going well. We’ve got an appointment with the Dr. Sharma to monitor blood on Thursday and one on Monday with the bone marrow transplant doctor. We’ll let you know how it all goes. Mitch is feeling better and has a little more energy. He says he has been noshing all afternoon and even had a couple of Mother’s tangerines and “they were delish!”

In fact, he says that he should be back to his blog tomorrow. So take that as notice that beginning tomorrow, you’ll want to check here and the frequency for the Daily Mitch Report e-mail report will NOT be daily. So, no one panic, please, when you don’t get an e-mail.

Love to all from Penny, Mitch and Laina

P.S. Do you think we'll really get a blizzard tomorrow?

Monday, February 8, 2010

MDS Becomes AML - All is Well!

Daily Mitch Report - Monday, Feb. 8, 2010
All is well. Don't worry! I was hoping Mitch would pick this up, but he says "Ask me in the morning." He did some stuff in the morning, but took it easy in the afternoon, and is now pretty exhausted. I worked a whole day for the first time in a month, and then made dinner for the three of us, so this e-mail is later than usual,

The big debate is whether Mitch will decide to shave his head, or at least trim his hair a little. I think at this point he's leaning toward leaving it around the house bit by bit. He is definitely loosing it (the hair that is) but in very interesting and unique patterns

And for those who asked...Mitch book is "New Jersey: an explorer's guide," second edition by Andi Marie Cantel and Mitch Kaplan, ISBN 0881508403. But the release date isn't until 3/1/2010. So on the first of next month everyone can rush out/or log on and buy a copy.

Hope all is well with all of you, too!
Love, Penny, Mitch and Laina

Sunday, February 7, 2010

MDS Becomes AML - Settling in at Home

Daily Mitch Report – Sunday, February 07, 2010
Mitch is delighted to be home and has celebrated by taking a bath and watching non-stop movies on TV to be followed by the SuperBowl (Stupor Bowl to some) after a gourmet dinner of macaroni and cheese. I’m hopeful that the Daily Mitch Report will no longer need to be daily. It’s been a lazy day (except for those doing laundry, grocery shopping, cooking and cleaning).

Leena the Elder’s daughter Eliisa is training to participate in the San Diego Rock N Roll Half-Marathon as a member of the Leukemia & Lymphoma Society's (LLS) Team. They are raising funds for leukemia, lymphoma, Hodgkin lymphoma and myeloma research. So if you’d like to make a donation here is the link to her fundraising page.

Penny, Mitch and Laina

Saturday, February 6, 2010

MDS Becomes AML - Hospital Discharge Rated A

Daily Mitch Report – Saturday, February 06, 2010
This hospital discharge gets an A. When Leena (aka Leena the Elder) and I got to the hospital around 11 a.m. for a visit, Dr. Sharma was writing the discharge orders, and Mitch was out and home by 2 p.m. So this hospital discharge will be submitted to the Guinness Book of Records. After a bowl of cream of wheat he climbed the stairs, crawled into his own bed and fell asleep. He is not up to cartwheels yet.

Nurse Kelly reported that today Mitch had the best blood work scores on the entire oncology wing with platelets at 22, hemoglobin 10.3, WBC 5.5 and hematocrit 24.5, That’s very good for Mitch.

I’ll take him to Dr. Sharma’s during the week to monitor the blood. We are advised to see the bone marrow transplant doctor sooner rather than later so Dr. Sharma will try to intervene and get us an appointment before Feb. 18 which they’ve told me is the first available. We all want to know what comes next. Nardi is being checked as a donor and we’re awaiting results.

Meanwhile Mitch is oh so happy just to be home. And for the weather report….what about the heralded snow? For all those of you who got 23 inches or have no power, we didn’t get a flake.

Penny, Mitch and Laina

Friday, February 5, 2010

MDS Becomes AML - Discharge Tomorrow?

Daily Mitch Report – Friday, February 05, 2010
Dr. Sharma says it looks like Mitch can be discharged tomorrow. She wants to clear it with the myriad of other doctors involved, but it looks good. Of course it’s not soon enough for Mitch who can’t bear another minute. I’m doing my best but he’s still got a bit of a long face. The blood counts are holding, with the whites at 4.9, platelets at 16,000. He is off all the antibiotics. Laina will be here in a while to cheer him a bit. But all he says is “I want to go home where I belong.”

But, hey, this is good news, isn’t it? And we’ll give you the blow by blow of the discharge process tomorrow. For once the boy may be hoping we don’t get too much snow. Whaddaya think?

Penny, Mitch and Laina

Thursday, February 4, 2010

MSD Becomes AML - Things are looking up!

The Daily Mitch Report - Thursday, Feb. 4, 2010
Today Mitch’s mood caught up with his physical improvements and the different is night and day. Yesterday he was just a lump, but today he’s almost animated. And, I think, feeling hopeful about the improvement all around. He’s talking with the nurses about his new book (copies arrived in the mail today), filling out his trip cancellation insurance form (he was supposed to be skiing in Italy, rather than getting chemo in the hospital), and eating. Not that he eating anything more interesting than soup and yogurt, but he did call me before I came and, after stating that he was hungry (a first in about a month), asked me to bring cheese and crackers. Laina will be here any minute with his glazed donut.

The blood counts are about the same as they were yesterday. All of the antibiotics except Vancomycin have been stopped, and he is delighted not to be tethered to the IV pole. We took a walk around this unit this afternoon and he didn’t even get winded. We are waiting to hear the results of yesterday’s bone marrow biopsy with explanation of what it means. Mitch felt Dr. Sharma might call this afternoon, but so far, she hasn’t. Stomach still bloated, legs and feet still swollen, but yesterdays X-Rays came back OK.  He's getting Reglin to try to speed up action in the colon.

So things are definitely looking up.

Penny, Mitch and Laina

Wednesday, February 3, 2010

MDS Becomes AML -- So Tired!!!!

Daily Mitch Report – Weds, Feb. 3, 2010

Another day of exhaustion for Mitch although the counts improved with a white blood count of 4.7! Hemoglobin was 10.1 and platelets 13. His protein levels are rising too and that should help the edema.

But he is one sad sack with his digestive system still not working right and feeling sooooooo tired. As I work Weds night I visited him in the morning until about 2 when Dr. Sharma took the bone marrow biopsy. She also ordered another X-Ray of his abdomen for this afternoon. Laina will be in to visit after her work day and, hopefully, that will cheer him up a little. He is really, really tired of being in the hospital, but that’s where he needs to be now.

If you have any extra energy, please send it his way.

More tomorrow…Penny, Mitch and Laina

Tuesday, February 2, 2010

MDS Becomes AML - Petty Aggravations but Holding

Daily Mitch Report – Tuesday, February 02, 2010
We know it’s a good sign when the patient feels well enough to be irritable, but for Mitch it’s been a day of petty aggravations. A little of this, a little of that – and dealing with the hospital food is a major problem for him. He’s on a soft diet so they send him a roast beef sandwich! And he can’t tolerate the timing of dinner at 4:45 p.m.

Small irritants aside, the improved blood counts are holding – dipped just a tiny bit but no one seems concerned. His stomach had a little bit of trouble with the roast beef (why did he eat it? Got me!), but the bloating is down some and his bowels seem to be working! He is still on Zovirax, Vfend, Vancomycin, and Primaxin (all IV) with an additional oral Vancomycin. The Gentamicin has been stopped but he is still firmly attached to the IV pole. Quite a bit of swelling remains in the feet and calves, but it is less. And he is finishing his last bag of TPN so he’ll be eating only on his own tomorrow.

He is basically very tired of being in the hospital, and who can blame him. Dr. Sharma will do a bone marrow biopsy tomorrow to see what the cells look like. But, judging from past experience, it should be a few days before we get full results.

Keep your fingers and toes crossed and hope for some sound sleep for our boy because he's awfully tired..

Penny, Mitch and Laina

Monday, February 1, 2010

MDS Becomes AML - Baby Steps!

Daily Mitch Report – Monday, February 01, 2010
Baby steps of progress. Two “soft” meals have arrived and our boy says he’s eaten most of them. That means cream of rice cereal, a little soup and a roll. And he took a little walk – 40 feet? - And sat up in one of his chairs for “at least an hour.” Our evening nurse is scouring the floor for a foot stool so he can sit even longer with his still swollen feet elevated. Furnishings and equipment wander around here a bit, and we lost our foot stool earlier when it was needed elsewhere. Then it didn’t matter then as Mitch wasn’t getting up.

The white blood count is now 3.8 !!!!! There is talk of taking him off one of the antibiotics as he body is more able to fight back. Of course, he’s still very tired. And he reports he is a little uncertain about “the grand food experiment.” But so far, so good.

So stay tuned and thanks for all that positive energy.

Penny, Mitch and Laina