Photos from Mitch's Memorial

About 175 of us - friends and family from all chapters in Mitch's life gathered on Sunday, June 27, to share memories and celebrate his life.  It was wonderful with stories from his childhood, years as a drama student, his sports and baseball friends, skiing friends and family.  I know we missed notifying some people and I apologize.  I'm inserting links to photos taken by my sisters Susan and Cathy, as well as a life album.  Everyone can share and join us this way.  Hopefully, you can open at least some of them.  Love, Penny
Susan's Kodak album

Picasa Album taken by Cathy

Mitch's Life Album

Rest in Peace Jerzy Snowman

Here is a link to an entry "Rest in Peace Jerzy Snowman" on Martin Griff's Newark Star Ledger/Trenton Times (nj.com)  blog.  Thanks Martin.  I know how much Mitch enjoyed traveling with you.
Penny 

NASJA Tribute to Mitch

Peter Hines and NASJA (North American Snowsports Journalists Association) created this lovely "not-a-dry-eye-in-the-house" video to pay tribute to Mitch for his role in NASJA and his love of skiing and snow sports.  It's taken from the NASJA website.  Many thanks all!
Penny


Mitch Kaplan Memorial Video from Peter Hines on Vimeo.

Mitch's Obituary

photo by Dino Vournas

Today the Bergen Record ran Mitch's obituary in place of his ski column which is very gratifying but it is a newspaper obituary and doesn't convey the depth of sadness, respect and support that we have received from all his famly, friends and colleagues.  Mitch gnashed his teeth many times over what was printed and what was not and I'm gnashing because they didn't give Dino Vournas the photo credit I requested for the picture of Mitch skiing at Brundage.  It's listed as a family photo, but perhaps that's somehow appropriate because the readers of this blog have become our family.  Your support and comments have been wonderful in this difficult time.

MDS Become AML - the Final Chapter

Mitch never regained any ground with the ARDS (acute respiratory distress syndrome) and today his kidneys had started to shut down and his heart rate (slowed by drugs) was irregular. His lungs continued to hemorrage.  Transfusions and a battery of drugs caused no improvement. By late afternoon we decided that it was time to let him go. His condition was so deteriorated that we felt it was cruel to keep him alive artificially.

It was a very hard decision, but the right one. The nursing staff was wonderful helping us with the decision and through it. They made sure he was comfortable. And once the decision was made, the morphine drip started, and the breathing tube removed, it was only minutes until he let go. It was time.

Yes, there is no justice. But I could not bear to think of him having to undergo more chemo and more extended stays in the hospital. We will miss him terribly and he should have had many more years, but this is what is. Laina and Ish are with me, and Nardi and Mary have been incredibly supportive as have all our friends.

Keep him in your thoughts and honor him by doing the things he would have done had he more time.
Love from all of us
Penny, Laina, Ish and all the family
P.S.  There will be no funeral according to Mitch's wishes.  We will schedule a memorial at some time in the future.  If you'd like to do something, please make a donation to your favorite charity.. 

MDS Becomes AML - Stablilized

Today Mitch's condition is more stable with heart rate down a bit and platelets and white cells up.  He is still totally sedated with a tube into his lungs for air and one to his stomach for food.  Laina and I were so pleased to see him looking better this morning.  But it is very hard to see him in this condition and totally out of it.  So by this evening we are anxious to get him off the tubes and back to us.  Hopefully that will be in the next couple of days and his breathing and health  will steadily improve.  And he'll start complaining mightily about all the poking and prodding he's gotten.

MDS Becomes AML – Intubation

Yesterday, as the day went on, Mitch experienced extremely high heart rates, low blood pressure and uncontrolled coughing on top of extreme fatigue. Doctors in the CCU (turns out he’s in CCU, rather than ICU – for us the same thing), took more x-rays and found the shadow on the right lung was progressing fast. With our consent they performed an endotracheal intubation – sedated him and inserted a breathing tube through his mouth down to his lungs. He will remain sedated while the tube delivering oxygen is in place. A broncoscopy was performed which showed that air cells in the right lung are hemorrhaging, but the pulmonologist said there was less damage than he thought there might be. I imagine he also took some tissue samples so he may have more diagnosis today (leukemic pneumonia, etc).

Gradually after the intubation the heart rate slowed and the blood pressure increased. It’s hard to say that Mitch is comfortable but he is constantly sedated through IV so he hopefully unaware of all that is going on. He is getting lots of antibiotics and blood products (platelets, whole blood). His platelet count yesterday was c. 10, so any procedure is extremely dangerous with the risk of bleeding.

Laina, Ish and I came home to our house about 10 p.m. and they slept here. I’ve just called the hospital now about 6:30 a.m. and the report is Mitch’s condition is stable. Heart rate is 114 (yesterday 160-170+), and blood pressure is 116/78. Oxygen level at 96%. Those figures are vastly improved over yesterday. This will a critical day as his body fights whatever infection is presenting, but we will keep you all informed. The CCU will not release information on his condition to anyone other than me so I will do my best to keep everyone in the loop.
Love, Penny, Mitch and Laina

MDS Becomes AML and into ICU

The results of the chemo hit Mitch hard this week, and he has been too exhausted to do anything. Thus no blogs, e-mails or telephone chats. Now his blood counts are starting to climb. It’s a good thing, too, because it looks like he’ll need all those newly developed white blood cells to fight off infections.

For a couple of nights he’s been running occasional fevers, and now his breathing seems compromised. When I arrived this morning at 9, he had just thrown up (not that he’s eaten anything to throw up), and his heart was racing and blood pressure very low. The nurses got him stabilized and Dr. I. Sharma felt he needed to be sent to ICU for observation where the ICU physician is Dr. R. Sharma (just to keep you confused with the cast of characters).

So here we are up a floor in ICU with a slightly larger room with a fish bowl effect. A window to the doctors/nurses station looks right into the room and there are screens and monitors and cords all over. He is resting as comfortably as possible given all the wires attached to him and the fact that he feels lousy.

OK, so what gives…..lots of tests and lots of exploration going on. Liver enzymes in the blood are elevated – most likely drug-related. Possibly some pneumonia – he’s getting many antibiotics. He’s had liver scans, chest x-rays, EKGs.

So, we have a new address. I can’t report that Mitch is doing well, but I can tell you he is getting the best of care and keeping all the medical personnel at Valley hospital employed. Keep him in your thoughts, please.

Best, Penny

P.S. ICU rules – no phones, no visitors other than immediate family. He does have Internet access, but does not feel well enough to use it now.

MDS Becomes AML - I Am Da Count, Ha-Ha-Ha

Today's counts:

• Platelets: 19,000
• Hemoglobin: 9.1
• White Cells: 0.3

I'm beginning to give up on tracking these numbers. Or, at least seeking logic in them.

The red cells didn't change. Okay, we didn't transfuse blood yesterday, so that makes some sense.

The platelets rose reasonably. Makes sense, since we did transfuse platelets yesterday.

The whites? Nothing. Despite Neupogen infusion. I mean, c'mon whites. The last time we Neupogen-ized, they jumped to more than 13.

It's enough to drive you crazy, this numbers tracking. Worse than when, as kids, we daily tracked major league baseball players' batting averages. My god, if Willie Mays dipped below .300, it was tragic. What would've we made of white cells hovering just above zero?

Can they go below zero? Can't you just see it? Hey, you're sub-zero, man. That's cold.

You know I'll be asking Dr. O about this when she arrives here today. Maybe she'll zap me with multiple Neupogen doses to really slap those whities around. Somebody's gotta wake 'em up.

Ah, never mind. I think I'll go see what David Wright's spring training batting average is and compare it to Willie McCovey's 1965 in-season batting average while I sleep through the golf coverage on TV this afternoon.

That makes about as much sense as these cell numbers do, but it oughta take my mind off the blood.

MDS Becomes AML - You're Not Going Anywhere, Mister

Yesterday's counts were:

• Platelets: 11,000
• Hemoglobin: 7.3
• White Cells: 1.6

Today's counts are:

• Platelets: 6,000
• Hemoglobin: 9.1
• White Cells: 0.3

Initially, these counts were alarming. What the hell was going on? I thought they were supposed to start coming back up by now.

Turns out we'd all miscalculated. Even Dr. O.

We were a week ahead of ourselves. The counts should be bottoming out right about now, and starting back up early next week. This is a three-week process; not a two-week process, which I had somehow convinced myself it was.

Dr. O had lost track of when we'd started. But, when Penny and I corrected her (it was a week ago Monday), she relaxed, saying, "Oh, then we're right on schedule.

"This treatment is actually more intensive that the initial one, even though you get the drugs on fewer days. The drug is stronger and the dosage larger." It bottoms out at about 15 days.

Maybe it's a good thing I didn't know that. If I had, I might've just stayed home.

As with January's treatment, home is beginning to seem like a mythical dream, a fantasy place that's far away and unattainable. Oh, to be able to walk from room to room, floor to floor; to be able to wander into the kitchen and to open the refrigerator door just to see what's inside; to eat real food at a real table; to luxuriate in the decision of which TV to nap in front of; to have commercial-free movie channels to watch.

This is wearing on me. The room is a small universe, made smaller by the frequent need to close the door to shut out ambient noise. Cleaning ladies yelling orders at each other; my next-door neighbor's TV blasting in a desperate effort to penetrate her deaf ears.

"It's going to be a beautiful weekend," Laina said the other night.

"Doesn't affect me," I replied.

Okay, okay—I know that in the end, this will all be worth it. Still, when you've largely confined to a small room, living a daily life whose few variations are comprised mostly of what medications are being pumped into you, patience is sometimes hard to muster.

Yesterday, between two bags of blood transfusion, I showered. Lord knows I needed it. I'd begun to stink in my private areas like a homeless person. But, the best part? I left the room independently to do it.

I shoulda stayed all night in there.

MDS Becomes AML - Still Here

No post yesterday, largely because I had nothing to say.  For the record, yesterday's counts were

• Platelets: 18,000
• Hemoglobin: 8.2
• White Cells: 4.2

Not nearly the improvement I'd hoped for.

And the fatigue continued. But, I'd attribute that more to a terrible prior night's sleep that resulted from a bad time waiting for a platelet transfusion.

Without going into details, suffice it to say that we waited 9 hours for the platelets to show up, and by the time they did I'd gotten impatient and pissed off enough to raise both my blood pressure and heart rate to ridiculous highs.

The adventure did illustrate perfectly how anxiety and anger have direct effects on one's vital functions. It also made me wonder how my father lived to be 90. He could "get his panties in a bunch" without much provocation.

Me, it takes a lot to get me going. And, when I woke up the next morning, I was still annoyed. The good news: I've discovered that watching meaningless spring training baseball on TV pacifies, distracts and relaxes.

No blood counts yet for today. Will report them later.

MDS Becomes AML - No Platelets, No Energy

Today's counts:

• Platelets: 6,000
• Hemoglobin: 9.1
• White Cells: 7.8

Six thousand isn't a record low for platelets, but it ain't far off.

No platelets means no energy.

So, today I've slept.

While I've waited four-plus hours for the platelet transfusion bag to show up.

Even Ms. I.V. Pole is wondering what's going on.

There have been better days.

But, also worse.

MDS Becomes AML - Blood Counts Drop, Mood Drops

As expected, the counts continue to descend.

• Platelets: 12,000
• Hemoglobin: 7.9
• White Cells: 11.8

Although Dr. O promises that today is "bottom out" day, it's difficult not to wonder, the doubt exacerbated by the fatigue factor.

I was sound asleep by 8:30 last night, awakened by the nurse at 9:45 to be fed meds and be disconnected from Ms. I.V. Pole and, apart from the usual multiple, fluids-fed, pee-trips to the bathroom, I slept straight through almost to 7. This morning my butt is dragging.

It's gotta be all about the counts.

But, as the counts and energy drop, so too does the mental set. By day's end yesterday, discouragement predominated. All the nasty, niggly little discomforts were poking at me like rambunctious older kids piling on to jab and tickle a little guy.

Avoiding negative contemplation becomes harder. My physical world has been reduced to this room, and the occasional stroll down the hall. Ironically, my hour-to-hour care needs are few, giving me whole clumps of time to sit alone, the primary human contact being whatever complaints, crises or staff gatherings I hear drifting in from outside my door.

One's world shrinks. And with it, one's focus.

There's a book review in the NY Times this morning of Lionel Shriver’s new book, “So Much for That”, a novel centered on families with health issues, cancer in one character's case. The reviewer writes that Shriver...

manages to convey Glynis’s fear and bewilderment and isolation. What it’s like, especially as her illness progresses, and the chemo takes more and more of a toll on her body, to have to stop thinking about the future and simply focus on getting through that afternoon or evening. What it’s like to see others jogging or working out when it’s a struggle for her simply to walk up the stairs to her bedroom. Disasters reported in the morning newspaper, relatives’ difficulties and complaints, the weather outside that day are all equal to Glynis:

“There were no big things and little things anymore,” Ms. Shriver writes. “Aside from pain, which had assumed an elevated position of awesome sanctity, all matters were of the same importance.” 

No—I haven't reached this point. Yes—I remain terribly (absurdly?) optimistic. But—sometimes the demons gather round the door and try to sneak in, as happened when an in-depth discussion about hospice care for one of my neighbor patients broke out just outside my room.

How not to think, "Is that where I'm going?" One must make a concerted effort to shunt out the notion.

I still can. And do. Which is why the trip to Idaho takes on such importance. Because it symbolizes still being able to function, an opportunity to actually get out of this room (or, by extension for post-hospital release, out of the house) and interact in the world at large.

That is large.

MDS Becomes AML - More Top Notch Hospital Socks

The word came down in no uncertain terms: those socks need washing.

"No! No!" I argued. "These socks are way too comfortable and, besides, they're still the hit of the hospital."

It could've gotten ugly.

But—wait. Leena the Elder rode in to the rescue like the U.S. Cavalry with . . . replacement socks.

The legend continues. (Photo by Laina Kaplan.)

For them what tracks 'em, today's counts:

• Platelets: 21,000
• Hemoglobin: 8.2
• White Cells: 13.6

Whoa! Look at that white count. That's Neupogen in action. Dr. O says we're looking good, tracking right, and has high hopes that no transfusions will be necessary.

Me, too.

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.

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.

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?

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.

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?

"Yes."

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.

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.