Month: November 2006

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.

It is election day, and Jacqui and I exercised our democratic birthright just after lunch at the Russian Orthodox Church two blocks from our home.

It was a rough night and morning, and the puke-o-meter ticked up one notch to seven at around 6:30pm last night. It was not fun. When I vomit I look like a character out of The Omen, shooting green goo and Satan’s lymphatic spawn across the room, hopefully aiming well into a toilet.

I did my best to sleep off the post-nausea sickies, so I could eat enough democracy-laden food to give me the strength to vote. A scrambled egg, wheat toast, and a banana did the trick, and at around noon Jacq and I headed down to the polling place. The person in charge of the polling site noted that I had changed my hair, as my ID showed me with a full doo. I told her, eliciting great guilt, that my chemo laden head was not by choice, but that I would be OK, and that I was glad to be able to vote, even though I was afraid I might puke on the machine at the sight of the name Santorum (I am, at this moment, watching Santorum give what is a surprisingly gracious concession speech).

The nausea returned later in the day, and I ended up back at Penn for some routine blood tests, some fluids to fill up the tank following last night’s pukage, and anti-pukage medicine that has left me relaxing at home watching election returns come in (which, it is entirely possible, may also make me puke at some point, depending on the results).

Once again, after a heavy dose of methotrexate, my super kidney has done its job and metabolized one ginourmous bag of yellow chemo. I was discharged at around 1:30pm, and now me and my tired kidney are at home resting.

The B cycle crash will probably come earlier this week as my counts already began to drop even before I left the hospital, so I suspect that by Wednesday or Thursday I’ll be mushed into the pillows of our comfy red couch.

Special thanks to all of those who came to visit me in the hospital this week–my mom and sister, Rick, Vandana, Paul, Bette, Jaime, Renee, Bill, Ivy, Maya. Special thanks to our friend Matt who drove down from NYC for a visit and brought with him the good news that he starts his first job as a nurse at Mt. Sinai on Monday, and the yummyness of Zabar’s in the form of fresh bagels, sturgeon, fresh cream cheese, and, most importantly, a pound of whitefish brought especially for my doctor who ate breakfast (and sometimes lunch) with me to chat about lymphoma, chemo, good Jewish food, and Jacqui’s giant belly.

Given that Jacq will be busy taking care of me and Lester this week, and I will be short on hemoglobin and brain power, I am welcoming contributions for guest blogs. So if you feel like blogging, send ’em over to myudell@gmail.com. See you online!

The dreaded B cycle, which should knock my socks off some time late next week with very low blood counts, has been pretty easy going down so far. Right now I am getting an IV dose of a drug called leucovorin, a “recovery drug”, which helps my body metabolize the 24-hour-straight chemo that I finished last night. I cannot leave the hospital until that chemo is well metabolized, which was not a problem last round, so I should be good to go home by about 3pm tomorrow just after my final dose.

I got a new roommate last night, who was here only briefly, was very nice, and had working ears. Last night was thus quiet night. Hopefully tonight is the same.

My nurse just told me a crazy story which proves that truth is much, much stranger than fiction. On Halloween night last week, one of the patients here on the lymphoma floor had their young son come to visit in full costume. Take a second to consider what the most offensive costume someone could choose to dress up as on an oncology floor? A zombie doctor? No. Dr. Jack Kevorkian? No. How about a four foot tall grim reaper going door to door on Rhoads 7 trick or treating? Yes! And how about the transplant patient who had to be medicated after opening her door and finding a miniature grim reaper, scythe and all, yelling trick or treat.

No grim reapers tonight. Hopefully one doesn’t show up as my roommate for the evening.