Author: Michael

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.

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!

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

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.

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.

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!!!

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.

As my chemo intermission draws to a close, it is time to update everyone on what is to come. As you know, I spent the first two weeks of December going through the prepping for and then harvesting of my stem cells. This was not a particularly pleasant procedure. The daily high dose neupogen shots left my bones aching and me sweating so badly at night that I needed to change my clothes at least two or three times per night and put a towel down on the bed after each sweat. The harvesting required me to be hooked up to a machine (via a temporary catheter in my neck) that circulated my blood and filtered out my stem cells over a three hour period. This process, which was repeated over four days, left me tired to the core for over a week.

For now and hopefully forever, thankfully and most likely, I will not be needing those stem cells. They have been preserved in liquid nitrogen where they shall remain should I ever need them. But because my doctor is so pleased at my progress, I will NOT be undergoing an autologous stem cell transplant. The doctor says that for now there is no need for it. That the risks from the transplants and the fact that patients like me seem do equally well following both transplant and continued chemo made it a no brainer. Transplant risks include permanent damage to my heart, thyroid, testicles (both in terms of reproduction and in terms of production of testosterone), and an increased risk of secondary malignancies in the future (the testicles piece sold me on the chemo regimen). Had the disease not been totally gone, we would have gone ahead with the transplant. But because I am lymphoma free, it’s time for four more chemo influsions which begin next Tuesday. I am not looking forward to this, but we are now halfway through this, and there is an end in sight.

So after this incredible intermission which brought us Sophia and the return of my hair in places that I didn’t even know were supposed to have hair, it’s time for a little more chemo. So here goes nothing. Come mid-March this will be behind us…

In more exciting news, Sophia had her first bath on Sunday. She is so cute.