Monday, January 29, 2007

Chemo Delayed

My counts are recovering more slowly this round. Apparently that's what happens when they kick the crap out of you with R-HYPR-CVAD. Thanks for saving my life toxic chemicals, but can we please get this over with as quickly as possible. While I wish I was going in tonight to get this round done, I am so happy that I have a few more nights at home with Jacq, Sophia, and Otis feeling relatively strong and good.


I am slated to start chemo now on Thursday or Friday, which means I am probably having a chemo-tastic Super Bowl party in the hospital this Sunday night. Chemo + football = fun!

So bring the beer, chips, and nachos. I'll supply hospital food.

Saturday, January 27, 2007

Fun With Chemo Hair

On our flight back from Florida this morning, with my hair falling out by the minute at 41,000 feet, and with little Sophia's face and clothes covered in it, I knew that it was time to shave the noggin. But before I shaved it completely off, I tried a few new looks...

"The Hole In The Head"

"The Angry Yarmulke"

"The Clubber Lang"

"The Sophia Head"

The Return of Bald Mike


Friday, January 26, 2007

Sophia Flys Again


With my counts finally out of the crapper, Jacqui, Sophia and I are making a quick trip to Florida to visit our families and spend some time with my dad who is still recovering from surgery last month. He continues to improve and Sophia has proven to be the best medicine for his recovery.

Chemo starts again on Monday or Tuesday. Welcome to the dreaded B cycle. Should be fun. I am stocking up on platelets and hemoglobin to get me through.

If anyone is A+ blood and you live in Philly, please think about donating. I recently purchased an antique "Do It Yourself" blood donation kit, rusty needles and all, and we can take care of the transaction in the comfort of your living room.

If you are not A+, please still think about donating. There is always a need for blood donors, especially for our soldiers in Iraq.

http://www.redcross.org/donate/give/

Tuesday, January 23, 2007

You Look Great... NOT!

Last night, while looking at photos from Sophia's birth, Jacqui finally admitted to me how freaky and frightening I looked at the end of the last B-cycle. With barely any red blood cells and hemoglobin, down a few pounds, and exhausted and beat up from chemo, I knew I looked like Jeff Goldblum mid-transformation in The Fly.

Witness exhibit A:

I looked like a freak. Bald. Skinny. Pale. My nose looking bigger than ever. But my wife, who obviously loves me even in my Frankenstein stage, kept insisting that I looked OK. And so did many of you. Wow, denial is one powerful coping tool.

I beg you all, if the chemo should again transform me into a circus freak, PLEASE DO NOT tell me I look good. If I look like crap, it is part of the process. Chemo is not a day at the spa, and looking like shit is the norm. May I suggest the following approach: "Mike, holy crap do you look bad! Clearly the chemo is working!"

And now for a bonus shot of me reading to little Sophia.

Monday, January 22, 2007

Danger, Will Robinson, Danger! Platelets Are Low

My counts are recovering nicely today, save my platelets which were at 8000, a number low enough to activate my "platelets are low warning system" which caused my arms to wildly flail up and down in the air like the Robot from Lost in Space. After a fresh bag of platelets this afternoon, I am feeling good, ready to lead the Drexel School of Public Health team at tomorrow's rugby match against those rubes from Penn. Thanks anonymous platelet donor from Cleveland, because of your help I still get to knock some skulls at tomorrow's match.

The rest of this week will be easy, except for the fact that my hair has begun to fall out. I'll probably shave it in a few days, making the metamorphosis back to bald Mike complete, at least until I am in my 70s and have a comb-over. See you in early April hair!

Saturday, January 20, 2007

Thanks, Grandma

Thanks for coming to take good care of me! See you soon. Love, Sophia

Friday, January 19, 2007

Sophia's Super Poo

This photo was taken just moments before Sophia had the biggest poo of her young life all over grandma. Grandma was a great sport, laughing so hard on the way to hose herself down in the shower.

Meanwhile, as of yesterday, I was officially neutropenic with my counts down in the cellar. I had hoped to have rebounded for the weekend. Oh, well. Just means more snuggle time with my little super-pooper and lovely wife. Not bad considering.

Wednesday, January 17, 2007

Chemo Hair

I have written a lot about my hair during this ordeal, a topic on which some of you have mocked me as being a bit vain.

I can accept that. And now that my hair has grown back (albeit until next week and then again back for good in April), I can safely vouch for the magical powers of chemotherapy in hair restoration.

But there is something about my hair regrowth that is frightening me and maybe even you if you have looked closely--I now have hair growing out of my nose and ears at a pace that is making me look like an 80-year-old, gold-chain wearing, shuffleboard playing grandfather named Maury living in Miami Beach circa 1984. Or even worse, will I look like that ubiquitous guy on the ski lift who you can't stop staring at because of the frozen block of snow and boogers hanging off his nose hair?

I am happy that chemotherapy has saved my life, but I am now left to worry about the long term side effects of "Nair"-ing my nose and ears for the rest of my days. Yuck.

Monday, January 15, 2007

Celebrity Sophia

This afternoon Jacq, Sophia, and I made what will be post-chemo twice weekly trips to the 15th floor of Penn Tower to have my blood tested to confirm that the chemo is doing its job, and, of course, not doing its job not too well. Witness last cycle's bottomed out platelet and hemoglobin counts that left me barely able to move and requiring multiple transfusions. I am happy that the whole process worked, but vigilance will keep me safe and hopefully without neutropenic fevers.

So far, the counts are all dropping normally, I am not yet neutropenic, and we are therefore looking forward to a nice dinner of my choosing tonight. I am feeling tired, but I have not yet hit bottom.

There is definitely a different feeling to our trips to 15 Penn Tower now that we have little Sophia and now that I am lymphoma free. First, having Sophia with us not only makes us focus on health over wellness, life over death, but in a place that sees so much sickness we watch in wonder how Sophia seems to inspire smiles in doctors, nurses, staff, and most certainly fellow patients. We walk in the door to the clinic and our little Sophia is mobbed, a baby celebrity in a world that needs it so badly. And that is a good thing. Second, that my lymphoma is gone now and hopefully forever, the visits seem routine, and we are focused on the future, and on health, and on long life. We could ask for nothing more in this wondrous new year.

Saturday, January 13, 2007

Otis's Surge

I noticed earlier this evening that traffic to the blog had risen dramatically during the last few days. On a typical day the blog sees anywhere between 100 and 250 readers. Yesterday we had well over 1000 visitors. Being a bit chemo-brained it took me a while to figure out that it wasn't delymphomatization that was attracting new readers, nor was it that our adorable daughter's smile had suddenly gone viral on the web, but rather it was furry little Otis registering his opposition to our President's so-called "surge" who was attracting all the attention. Otis, you are more than man's best friend, you are now a national symbol against a failed war and a failed presidency. Way to go little man. You've made us proud.

So a hat-tip to the folks at buzzflash.com who somehow discovered that Otis too had come out against the "surge" and posted our little puppy on their site.

By the way, Otis is still against the surge, despite being threatened by a neighborhood pit bull (neutered) named Cheney.

Sophia Smiles

I can tell you the first time that Sophia smiled at Jacq and I. It was two weeks ago when we were in Miami for some quick R&R. It wasn't just one of those looks babies give when they have a little gas. It was her first full faced smile. Mouth, cheeks, eyes, forehead. It was quick. It melted our hearts.

I have quickly discovered that the milestone moments of parenthood--your child staring at you for the first time, their first smile, etc.--are life changing moments, made all the more powerful and lovely by our crazy situation.

We wait for these moments, knowing that they will come. We anticipate them impatiently. And when they come they are permanently etched in our hearts and minds, never to be forgotten and always cherished. They are moments taken out of time, especially when my time has been spent these last 5 months recovering from round after round of chemotherapy. They are for me, not simply moments to help me get through the nausea, the exhaustion, and the discomfort, but they are beacons of the future, knowing that I should get to enjoy a lifetime of these milestones, from a simple smile, to a first step, to her first words and onward.

Friday, January 12, 2007

Home Sweet Home

Home.

Sleeping it off.

Goodnight.

Thursday, January 11, 2007

Going Home Today

With another chemo just about behind me, I am excited to get home to my lovely family and the comfortable confines of my couch. While this has been an easy stay--barely any nausea, plenty of good sleep, and the knowledge that I am lying here lymphoma-free--it has sucked to be away from Jacq and Sophia. Sophia seems to change a little bit every day. And while I've gotten to see her each day, I want to be with her all the time, literally watching her grow, coo, and play all day.

Home today means a few days of nausea, then a brief respite before the mild neutropenia of the A cycle. I can't say that I am looking forward to three more chemos, but each stay here means having this process closer to being behind us. And that, my friends, is a great thing to be looking forward to.

We are currently in the planning stages of a huge lymphoma free celebration in late May or early June. We are planning to do a 5k run/walk in Philly and then having a big bash at the house. More details to come.

Wednesday, January 10, 2007

Bored

It has been an uneventful stay for the A cycle thus far. The most excitement was the 9 hours of continuous sleep I got last night. Ah, the irony of checking into the hospital for chemo to get a good nights sleep. On the other hand, Sophia must miss me terribly because she has been sleeping poorly since I left on Monday, which means that Jacq too has not been getting much sleep. Urg.

Otherwise just been doing some work this morning while waiting for the crew to show up. Can't wait to see Sophia's smiling face.

Tuesday, January 09, 2007

Manny Poppins

On Sunday night, Manny Poppins (aka one of my closest friends, Bill Shein), blew in with the north wind from the Berkshires, umbrella and all. Bill will be staying with us for the next few weeks, helping out with the baby, sitting with me in the hospital having heated political discussions until I fall asleep, and walking Otis and his sweet dog Ella until they are so tired they too fall asleep.

Bill has been an incredible friend through all of this lymphoma-related nonsense. He has called every day, been in Philadelphia for each of my treatments, and helped me put together baldmike.com with his nerdy web skills. He is also single, so for all you ladies out there looking for a great guy, he fits the bill, literally. I am screening potential suitors, so if you are interested, please send me an email and photo and I will let you know if you are up to snuff.

When Bill was not much older than Sophia, he lost his father to leukemia, so I know that it must feel good for him to be able to see me get through this, and be such an integral and essential part of the process. I can only hope that the long life I will live and calling him Manny Poppins for the rest of our days, let's him know how I feel about his friendship, his dedication, and his love for Jacqui, Sophia, Otis and I. We all love you too Manny.

Supercalifragilisticexpialidocious!!!


No Pants, No Like Baby... Then No Nookie Dude!


It was a rainy Monday in Philadelphia and I waited all day for the call from the hospital, which came late, and we didn't get to my room until 7pm. Because it takes several hours to prepare the drugs once I am checked in, Jacqui, Sophia, Bill and I were able to go out for a few hours to a nice dinner. I ate some sushi in anticipation of the neutropenic diet that will begin over the weekend and last into next week.

Several things struck me at dinner: the first, that even though I knew what was coming later that night, I was able to put it aside, relax, and enjoy the company and food, that is, until the hospital wrist band popped out from under my sweatshirt to remind me what was about to begin; and second, that when eating dinner in a restaurant full of stodgy, awkward academics, nobody cares about a baby. One of the most incredible things these last (almost) six weeks is how Sophia attracts (generally positive) attention wherever she goes. The attention isn't always wanted. It is amazing how people are so quick to say inappropriate things or offer unwanted and obnoxious advice. And it isn't as if I want Sophia to constantly be poked at and talked about. I don't. But last night was narcissism night in West Philly and there was barely a peep out of a soul as they smugly chomped on their Asian fusion. Heartless academics.

The one person in the restaurant who was excited about the baby was the estrogened-half of a youngish couple sitting at the table behind us. They actually looked completely out of place even for a relatively trendy Philly restaurant, instead looking like they belonged at a skanky club on South Beach--he with a bad tan and goofy shirt, and she wearing a potato-sacky looking dress that barely made it down past her butt cheeks. And I mean barely. Concerned for her well being, Bill even offered her his pants, but she politely rejected him, noting that he had a size 36 waist, and she was at best a 0. The no pants thing kept us laughing all night, but as we walked out, she reminded me that some humans do actually have hearts (even if they don't wear pants), and we stopped at their table for a second so she could gush over the baby. What shocked me was her boyfriend's reaction. Dude, if you are out with a girl who is not wearing pants and who's foot is under the table rubbing your nuts all night, try not to scowl at us for stopping at your table for a second so your girlfriend can look at our baby. Definitely not the way to keep her doing the Paris Hilton-esque thing at dinner with you, if that is what you are into, of course.

I have decidedly mixed feelings about these next four rounds. On the one hand I am the first guy who my nurse practitioner has seen excited to be admitted to the hospital for chemo to both begin this final stage of delymphomatization and get a good night's sleep. On the other hand, my place is at home with Jacqui and Sophia, and it breaks my heart even to be away from them for a few nights. Jacqui and I have been so lucky to be at home with Sophia these last six weeks. It has been an extraordinary time and I wouldn't trade it for a thing in this world. I've even begun playing the lottery, going to Atlantic City to play craps, betting on football, etc., in the hope of hitting it big so I never have to work another day and can just hang with my baby and wife.

Monday, January 08, 2007

It's Showtime One More Time!!!


Checked into 6th floor Rhodes to begin the final stage of delymphomatization earlier this evening.

I just received an IV of benadryl (part of the prep for Rituxan) and can barely keep my fingers awake to type this.

So I will update tomorrow.

Please come and visit. I am in 6020 Rhodes. Goodnight!

Sunday, January 07, 2007

Otis Comes Out Against "The Surge"


Date Night


Summer came early in winter today. It's January 6, and it was in the 70s here in Philly. We took advantage of the beautiful weather and took Sophia and Otis for a summer's stroll, a swim in the Skuykill River, and tried to figure out if our townhouse would be beach front property in the post-global warming era.

Jacqui and I had our first night out alone since Sophia joined us, going out for a great dinner, looking back fondly on the last 5 weeks, talking about the craziness of the last 4 months, and looking forward to having the next 2+ months behind us. We spoke about our fears while we waited to see if the chemo worked, and wondered what tonight's date would have been like had I instead been going in for a month long hospital stay and transplant. We ordered an extra bottle of wine and three desserts to celebrate all that has gone right. Special thanks to our friends Avi and Ivy, their daughter Maya, and Ivy's grandparents Mitzi and David Einstein who all babysat for little Sophia tonight.

Chemo begins again on Monday so regular blogging shall return then. Until then, enjoy summer.


Sophia and her new friend Maya

Friday, January 05, 2007

Mother and Child

Thursday, January 04, 2007

Monday, Monday

Still have a cold, though it is now finally on the way out. Chemo is now scheduled for Monday through Thursday, so come and visit me on 6 or 7 Rhodes at Penn. I'll post the room number on Monday once I am checked in.

Because Sophia takes priority, Jacq will be spending minimal time with me in the hospital this run, so I'll need visitors after I catch up from the lack of sleep these last 5 weeks. Otis managed to pull a piece of friend chicken off the counter, aggravating what was a healing stomach, and once again dragged me out three times to poo last night. The lack of sleep is not helping me get rid of this cold.

Being without Sophia, Jacq, and Otis for three nights is really going to suck, but it sure beats the transplant alternative, which would have meant 3-4 weeks away. I am thankfully for that on so many levels, most especially the fact that I didn't need the transplant itself. Bring the chemo on. I can't wait to get this over with.

Tuesday, January 02, 2007

Jacqui's Giant Juice


Took little, or should I say, big Sophia to the doctor today for her 1 month check-up.

She is now 9lbs, 14oz and is 22 inches tall. That places her in the 90th and 95th percentiles for height and weight. Wow! The doctor says that she'll slow down at around 6 months so she probably won't be a superstar in the WNBA, but that hasn't kept me from teaching her the fundamentals of the game.

Snot Stops Chemo/Need Jets Tickets

No chemo for at least the next day or two. My big nose, now producing prodigious amounts of boogers, is preventing the start of my favorite chemical cocktail... the A cycle. As soon as the cold is gone, I'll start, but I am hoping that that is after the weekend so I can fly up to Boston and go see the Jets beat the Patriots in Foxboro. Should my chemo be delayed, anyone got two tickets?

Sophia in her Jets shirt. J-E-T-S JETS, JETS, JETS!!!

Monday, January 01, 2007

Resolutions


It's early morning New Year's day, and I can't fall back asleep after walking Otis in the pouring rain for the third time since last night. The poor little fella has a bad case of the runs, and the last two nights have been mostly sleepless for me, anticipating him jumping on the bed, staring at me and panting loudly to let me know he has to go out NOW.

The New Year tends to be a sentimental time, a feeling made more pronounced by the extraordinary highs and lows of the last year. Jacqui and I have such mixed feelings about 2006. It was certainly a difficult year. Delymphomatization scared us at first, and then tested our mettle individually and as a couple--a test I am happy to report we passed with flying colors. Jacqui, Otis, and I (and now Sophia) are strong, we found new ways to work together as a family, and are more in love today than we were when this nonsense started. But it is not a process I would wish even on my worst enemy. The uncertainties of cancer are haunting, and even with the hope that we now know the future holds for us, lymphoma will be our companion for many years to come. It will probably be a decade until we can rest easy, knowing that we have slain this beast forever.

Despite all of this, 2006 is the year that gave us the miracle Sophia. And when we look at her-- adorable, innocent, and constantly filling diapers--we know that no matter what went wrong in 2006, so much went right. The cycles of life have a way of balancing themselves out, and Sophia reminds us of that every day.

The next few months will again be difficult, made more complicated by the arrival of Sophia. But if the last chemo cycle is any indication of what is to come, it won't be that bad. Neutropenic fevers are more bark than bite, and I've discovered the magical powers of zofran and compazine.

Finally, I have all of you out there to thank for helping to make all of this so much easier than it could have been--you, my family, friends, colleagues, and acquaintances, who have followed my progress on these pages, checking in periodically with me personally to let me know that you are out there thinking of us, visiting me in the hospital, helping out Jacqui, coming to take care of me while I am recovering at home, sending get well cards, etc. That has made such a difference in all of this. And for that I can only say thank you. Happy. Healthy. Peaceful. New. Year.

I want to share with you a few of the New Year's resolutions I've been cooking up the last few days. I hope to hold to as many of these as I can, most especially the first one.

I resolve to be lymphoma-free in 2007.

I resolve not to call Otis derogatory names and threaten to ship him off to the nearest ASPCA when he has the runs and I am forced to walk him repeatedly in the middle of the night.

I resolve to do my part--write letters, make phone calls, support progressive candidates any way I can, etc.--in holding our political leaders accountable for their misdeeds which include lying to the American public, war profiteering, ignoring Supreme Court rulings, trampling the Constitution, etc. etc. etc.

I resolve not to refer to Sophia as Squirmin' Merman when she is 17 years old and her boyfriend shows up at the house.

and

I resolve to do everything I can to repay Jacqui, Sophia, and Otis for the heartache I put them through in 2006 and early 2007 because of being treated for the aforementioned lymphoma. This includes but is not limited to extra clean-up duties around the house, being personal chef to aforementioned parties, making sure to schmear Jacqui's cream cheese properly on her bagels each morning and never making fun of her for the (bizarre) way in which she prepares her bagels, being the person-in-charge of changing poopy diapers, making sure to sing songs, play music, dance, make funny faces so that the changing of poopy diapers can be as pleasant as possible (this, of course, excludes all music written and/or recorded by The Wiggles whom Sophia has banned from this house), taking Otis on long hikes, etc., etc., etc.