Author: Michael

Boy is it good to be home!

While I am indebted to the docs and nurses at Penn for taking such good care of me during delymphomatization, there is nothing more therapeutic than being back at home with Jacqui and Otis.

Yesterday I spent half the day at work, but also ran some baby-related errands, picking up the stroller, car seat, and pack-and-play. For those of you who had kids a long time ago, as of yet do not have them, or are like the character at the end of each episode of Scooby Doo who says, “Damn you crazy kids!” the pack-and-play is one of those new baby items that I am told you just can’t do without. It is a portable crib, or what in modern baby lingo is called a play yard, that folds up and fits into a carrying case that in the most advanced versions actually fits in your back pocket.

Shopping for baby stuff has been a learning experience for me. Call me old fashioned, but some of the gadgetry now mandatory for having a baby makes me wonder if my generation was brainwashed by all of those goofy “I don’t want to grow up, I’m a toys-R-us kid” commercials; you know, the ones with the toys-R-us giraffe mascots that ran over and over again in the 1980s. There must have been subliminal messages hidden in those commercials: YOU MUST BUY A PACK-AND-PLAY, YOU MUST BUY AN OVERPRICED BABY MONITOR THAT PICKS UP COMMUNICATION FROM THE SPACE SHUTTLE, YOU MUST BUY AN SUV THAT FITS ALL OF YOUR BABY JUNK AND PUTS A HOLE IN THE OZONE LAYER. Yea, well now that we’ve grown up there are bills to pay and mouths to feed, thank you very much you stupid giraffe.

Kidding aside (mostly), the one thing that I found truly shocking in all of this, was that one salesperson actually tried to sell us a stroller for $900. Seriously, $900. We went into the store and I told her that I wanted the one that was rated as safest and most reliable by Consumer Reports. She looked at me as if I was a communist, poo-pooed that stroller, and told me that we needed the Bugaboo, the Rolls Royce of baby strollers. Out of pure curiosity, I let her show us the stroller, which pretty much looked like any other, except it must have been made from pure gold given its sticker price. She didn’t laugh when I asked her at that price did the stroller also change the baby’s diaper, toilet train it, and convert into my child’s first car?

Despite the superstition of some of my faith, Jacqui and I have begun to set up the baby’s room (furniture arrives Tuesday), and put together the stroller, car seat, and pack-and-play. Given what we have been through these past few months, it feels so good to focus purely on Lester. Last night, with our new video camera in hand, I had our first tape rolling and asked Jacqui what is the first thing she’d like to say to baby Lester (once he or she is old enough to watch the video). Her response took my breath away (which she often does): to our first born she said, “We are probably going to spend the rest of our lives trying to get you to understand what it has meant these last three months to have your birth up and coming, and that hopefully through the love and support we offer you as parents, you come to know a fraction of what we are actually feeling.”

Released at 1pm following a bag of platelets. Did you know that one small bag of platelets is culled from between three and five donors? So if you are not an eligible donor for me, please consider donating blood through your local Red Cross. It is a special gift. This week I received blood and platelets from anonymous donors in Philadelphia, Ohio, and New York.

From the hospital I went home, took a quick shower, and then went to teach for two hours. During break I went to the bathroom and noticed in the mirror that my eyebrows have thinned over the last few weeks. Not a good look, but with a nice break from chemo coming up, they should fill back in quickly. Any stopgap make-up suggestions from the ladies out there?

Otherwise, I am feeling pretty good, and looking forward to some R&R at home with Jacq and Otis.

Tomorrow Lester is 37 weeks and is good to go. Jacq had an appointment yesterday and “the door” is still closed, so we have a weekend of watching comedies and horror movies to try to induce labor and coax the little one out. At her appointment she told the doc that she thought the baby wasn’t kicking as much, so the doc had her do a routine nonstress test. After drinking some cranberry juice, the baby was performing somersaults and karate kicks, given a black belt in karate, and given a clean bill of health. Unfortunately, yesterday was a rough day for me (hemoglobin at 5.4, which is just about in the danger zone, so they had to transfuse me) and I couldn’t be with Jacq. So there she was at one UPenn hospital making sure baby was OK, and there I was at another UPenn hospital with doctors making sure I didn’t stroke out from lack of oxygen to my brain. It was a pretty upsetting situation, but we are all now OK and resting at home. Hats off to all the doctors and nurses at Penn who were in overdrive while all this was going on, pumping me up with blood, and ready to ship me off to Jacq should she have needed to be induced. Thanks docs and nurses on Rhoads 6, you are taking great care of me, and I am always appreciative.

I just received the news that my white cells have begun to replenish themselves, and I am now officially on the road to recovery. I have even begun to grow those creepy white hairs on my face that I spoke about in Monday’s blog. Soon enough I’ll be looking like the wolfman.

For a while there I was convinced that last Thursday’s blog, “Morning in America,” (http://www.baldmike.com/2006/11/morning-in-america.asp), in which I make reference to the sitting Vice President in a not so flattering way, had landed me in hot water with the Department of Homeland Security. I feared that as a result of my political statements I had been declared an “enemy combatant” under the terms of the innocuous sounding yet anti-American “Military Commissions Act” (you know, the one that stuck an arrow through the heart of our Constitution by suspending Habeas Corpus for “enemy combatants”, who, in the new law, are defined very loosely and haphazardly and can include U.S. citizens).

As a result of my earlier statement, I feared that I might wake up at Guantanamo, or even worse, stuck with the Cheney’s at their secret, undisclosed location being tortured by having to listen to readings of Lynne Cheney’s non-fiction books and novels (for excerpts from her classic novel of female frontier love, which the NY Times calls “Hilariously tortuous,” see: http://www.whitehouse.org/administration/sisters.asp). But I actually think the Emperor Cheney and his cronies at Homeland Security have instead been hacking into the computer system here at Penn and have been lowering my blood counts to extend my stay here, thereby driving me insane and keeping me from taking good care of Jacqui and Otis. I shared this theory last night with my doctor, and made sure he double encrypted the results from the lab. Sure enough, my counts have risen dramatically, and I should be out of here (that now being the psych ward) tomorrow.

So there you have it folks. Going home soon.

Still stuck in prison. Blood counts not doing much of anything. Urg. No target date at this point. No concern for me other than my mental state. I am talking to my water bottle. Help.

With my marrow beaten and worn from four rounds of chemo, my counts have been slow to rebound, and I am stuck here until at least late tomorrow or more likely Wednesday. All normal for this course of chemo, the effect of which is cumulative, but absolutely no fun. I am, as Jacqui says, exceptionally bored and grumpy, and I have taken to throwing banana peels, trash, and shooting spit balls at the dopey resident who woke me up at 2:30am on Friday night to give me a full exam. When he offered me a digital exam for free I knew that I was in the wrong hands, and immediately called security.

I have shared with all of you my most personal emotions about what I have been through, but have only described in bits and pieces the physical nature of being on chemo–the puke-o-meter, the exhaustion following treatment, the loss of my mane. So if you don’t mind the gory details, at least some of them, read on. Otherwise, you may want to skip ahead to the photo below of Otis as a puppy just after his first bath (boy did he smell. He was stuck in the pound for three weeks and barely got out for a walk. So if you are thinking about getting a dog, go rescue one at the pound).

Appetite and Weight
After the first treatment I dropped almost 15 pounds due to a combination of the vomiting and neutropenic diet. I have put back on almost 10 of those 15, but my weight varies by a few pounds after each treatment and neutropenic cycle. I generally have a normal appetite the first day of chemo, but the second two days I feel mildly nauseous, and don’t eat much. During the week following chemo I am on a neutropenic diet, and eat Whole Foods waffles and a banana for breakfast, Wolfgang Puck’s veggie soup and a grilled cheese sandwich for lunch, and grilled chicken, baked potato, and steamed broccoli for dinner. Sometimes I mix it up and go crazy with minestrone soup for lunch or dinner. That’s living on the edge for me, otherwise I eat the same thing all week. Following the lifting of the neutropenic diet, I always go right to my neighborhood sushi bar for some raw fish, and then eat from a feed-bag pretty much for a week straight to replenish the lost stocks. And then it starts all over again…

Hair
It’s not just my head hair that’s gone. My body hair has thinned in most places and is completely gone in some others. When I look in the mirror, I look like a 12-year-old. Even my back hair is mostly gone (the one thing Jacqui is thankful for in all of this). Two strange things: on the outside of my legs and my knee caps, my hair is gone, but on the inside of my legs, from thigh to ankle, it remains thick; and, between cycles my hair comes back on my face, just around my mouth, at first white, and then thick and dark. I am told that once this is done my hair, already thick, will come back with a vengeance. I think I’ll look like the wolfman for a while.

Smell, Taste, and Touch
For the first three or four days after chemo, my senses of smell and taste are dulled. Nothing tastes normal, and nothing smells right. And I smell funny too. The chemo gives me a strange ripeness that drives Otis away. For most of the remainder of the chemo period, my sense of smell becomes very intense, and smells that normally don’t bother me are a little overwhelming. I can even smell fear, shoplifting, and my neighbor’s upset stomach. Finally, right after chemo my skin is sensitive to the touch, something between a tickle and a pinch. That goes away pretty quickly though.

Neutropenia
During the neutropenic period when my counts bottom out, there are two things that feel weird–the exhaustion and heart pounding. The exhaustion comes from the chemo recovery and the fact that I have few red blood cells and barely any hemoglobin (the protein that delivers oxygen to tissue throughout the body). The heart pounding is the worst part. That is due to the fact that my heart has to work much harder, because of the low hemoglobin, to supply oxygen throughout my body. Sounds fun, huh?!

Chemo Brain
I’ve described in past entries the dulling effect of this whole thing on my mind. The first few days out of chemo are the worst, and then it gets bad again during the blood count crash. My hemoglobin starved brain is fuzzy during these periods, and sometimes I have trouble with my memory, especially with recalling names and simple facts (I knew my brain was a mess when I asked for a-write-in-ballot last Tuesday and tried to vote for Richard Nixon). Chemo brain is a strange sensation, one that goes away after a few days, but for a guy who allegedly relies on his noggin to make a living, it is not a good feeling.

So there you have it. Other than the fact that after each cycle my finger and toenails ache and I am severely constipated (thank you, Colace!), that’s pretty much the extent of it so far. I’ve been spared the balance problems, mouth sores, skin rashes, and eye problems, so I feel pretty lucky.

And now for two cute photo of Otis to make you forget this blog…

Here is Otis after his first bath. Look how small he is. And so cute.

And here are Otis and his mama. Goodnight!

Tonight my white count finally began to creep back up from a low of zero, zots, zilch. I had, for a few moments this morning, absolutely no white blood cells, leaving me with a bad case of…

Don’t worry though, my face will regain its normal features by tomorrow afternoon.

Visiting us tonight are Jacqui’s parents Debbie and Alan, and my oldest friend, Scott Jacoby, whom I have known since birth. Our fathers used to cruise Long Island’s beaches together back in the 1960’s, where Scott’s father and mother met. Our mothers even went to summer camp together. There is A LOT of history between us. Our families yearly trips to the Jewish Borscht Belt, and later to Vermont, were filled with wonderful moments of laughter, good skiing, and watching our fathers eat too much food and tell early versions of what would later become dirty old man jokes. Good times were had by all.

Tonight in the hospital, we reminisced at little, I fell asleep from some Ativan they gave me to counter a reaction to a platelet transfusion, and we all laughed a lot. We also took these silly photos to celebrate this evening’s rising white count (now at .3).

Here Debbie casts a spell on her husband which results in…

Yikes, Alan is magically transformed into identical twins stuck in craftmatic adjustable hell…

Meanwhile, Scott rejected the advances of a cute nurse in the hospital, who, in an act of revenge, injected him with head shrinking juice.

Finally, Jacqui is a mutant all on her own, no special effects necessary, seen here schleping around 8 1/2 months of my alien child.
My amazing nurse Charlotte had her own problems tonight, admitting to everyone on the floor that she was actually a cyclops. It remains uncertain how this will affect her career.

Still roughing it out on Rhoads 6 at Penn, hoping that my blood counts start heading north before my frustration requires a room with padded walls.

I am putting out another call for donor blood. I am all out of bags after yesterday’s transfusion.

So, if you are either A or O type, have not had mono, Epstein-Barr, hepatitis, any strange STDs, or cooties, I want your blood.

Local Philly blood works best. If you are eligible, please email me and I will help set things up. The sooner, the better. Peace!

Here is the link to general Red Cross eligibility guidelines:

http://www.redcross.org/services/biomed/0,1082,0_557_,00.html

Time for a short, frustrated entry, following today’s earlier happy blood blog.

Unfortunately, just after I got my blood today I spiked a low fever, and because I am neutropenic, I am back at Rhoads 6 at Penn. I’ll be here until Sunday (hopefully that’s my maximum sentence).

As you may remember from the last neutropenic fever almost two months ago, I am kept in the hospital as a precaution, given lots of antibiotics to prevent or kill infection, and massaged by Jacqui three times a day to literally rub the white blood cells back to life.

So come and visit as long as you don’t have a cold, ebola, or leprosy. Room 6011 Rhoads.

This morning, with my blood counts dropping more quickly than the mood of Republicans on Capitol Hill (OK, I’ll quit it for now with the political jabs), I received two pints of blood and a bag of platelets to soften the B-cycle chemo crash.

Today’s gift of life comes from my Rabbi and friend Avi Winokur, and my friend and fellow Philadelphian Brian Rubenstein. Thanks, guys! Today your generosity of self and spirit literally made me a better man.

There are two temples in a Jewish man’s world–shul and a baseball stadium. I look forward to the three of us spending some time together in both places soon, especially given that I now look like this…

For the first time in a few weeks, maybe even months, I slept soundly through the entire night without getting up to use the bathroom to drain off some chemo, wheel my I.V. line around the hall to get some exercise, have a late night snack to quell nausea, or check election punditry and/or results to curb my fear that I would wake up strapped to the bed in a mild, nicely packaged dictatorship where they refused to treat my lymphoma because of my political views.

It felt great waking up to the quiet city sounds of a car driving by and a few birds. Not bad for life in our (mostly) big city. In our old apartment revelry was usually courtesy of Philadelphia Sanitation Department trucks, and the anxiety-provoking sounds of their back-up beep… Beep-Beep-Beep.

The Zen-like state I awoke in this morning has two very different causes. The first, of course, is that we again finally live in a nation of checks and balances. Tuesday’s elections addressed, for the moment, that problem.
A part of me still worried though that last night’s episode of Lost, and all TV for that matter, would be interrupted by Dick Cheney dressed up as the Emperor from Star Wars, announcing that he was taking over things now, that George Bush was no longer in power, and that the Democratic leadership had been exiled to Artus Prime to mine the planets’ crystal deposits (by the way, what kind of world do we live in where I can type “star wars planets” into google.com and get 5 million hits? Maybe that is why the country has been asleep at the wheel these last 6 years?! CUT TO:
THE WHITE HOUSE, PRESIDENT’S QUARTERS.
THE FIRST LADY: (suggestively) Now, now Georgie, you need to stop playing with the computer and come to bed. We can read the transcript from your appearance on Rush Limbaugh together?!
THE PRESIDENT: Just a few more moments on the google and I’ll have this whole Iraq thing figured out.

The second cause for my good night’s sleep is actually a few causes wrapped into one: de-lymphomatization is at least 50% complete, and based on preliminary lab work, seems to be doing its job of making me lymphoma free; as crazy and sometimes miserable as all of this has been, it has, to a small degree, become a “normal” part of my life (only, temporarily, of course); and the karate kicks of our soon-to-be-baby are always reminding me that despite all this nonsense, the kid’s got good legs, and I can’t wait to see him or her dance at their wedding. That final point especially gives me peace of mind that I can find nowhere else.

You may also have noticed, unless you are color blind, that baldmike.com has a shiny, colorful new format. The bland white background and black text was boring. Given my own dropping hemoglobin and red blood cell levels, I thought I could definitely “use a little color”, as my late Grandma Sarah used to say. As in: when I was getting off a plane in Miami from NY mid-winter and she’d say in her old-time New York Jewish accent: “you could use a little color, here’s some oil,” (always Hawaiian tropic #2) as she pushed me out the door with a towel, saying “there’s already a chaise lounge waiting for you downstairs by the pool.” Thanks for the color, grandma! And to all the color obsessed Jewish grandma’s out there, thanks for also encouraging us to get regular checkups for skin cancer.