Month: October 2006

In less than six weeks (and hopefully a few weeks sooner) Jacqui will give birth to our first born, who as a fetus, we have nicknamed Lester. I am not sure where the name came from. We called the fetus Junior for a while, but at some point early on I called it Lester, and the name just stuck. I apologize to all the Lesters out there, but the name has a funny ring to it, and it makes us laugh each time one of us talks into Jacqui’s belly-button microphone and says “hi Lester.” We, of course, do not know the gender of the baby, so if Lester turns out to be a girl, I suppose we should start putting money towards her therapy bills now.

Our firstborn is arriving at an obviously crazy time in our lives. While we knew that we would have to deal with me and my wacky lymphatic system some day, this is not what we envisioned for our first, or for that matter, any of our children. When I was diagnosed, and then got past the one-year-with-no-change-in-my disease hurdle, the odds were with us that we’d have significant time before I had to go through delymphomatization. Screw you Las Vegas bookmakers who put the over/under at five years!

There are moments when I look at Jacqui’s belly and wonder what lies ahead for little Lester, Jacqui, and I. At what point in Lester’s life will I tell him/her about what I went through from when she/he was little more than a clump of cells? How can I make sure that Lester doesn’t grow up afraid of losing dad, but realizes that there are no guarantees that my lymphoma will not come back some day, that I’ll need to be retreated, or that that treatment might be more brutal than what I am going through now? How will I let the little dude(tte) and future sibling(s) know that everything will be ok?

Should I need to be retreated, one option, the “home run” of lymphoma treatments, would be an allogenic bone marrow transplant, which means that a family member or total stranger donates their marrow to me (this is different from an autologous bone marrow transplant, where I donate my own marrow back to myself. The auto-transplant is a safe procedure, one that I will be going through later this year as part of the process of delymphomatization).

Donor (allogenic) bone marrow transplants, while potentially curative, are also very dangerous (a 10-25% mortality rate). So it is not, as you might understand, an attractive option, except as one of last resort. FOR THOSE OF YOU THAT MIGHT BE CONFUSED, I REPEAT, THIS IS NOT THE PROCEDURE THAT I WILL BE GOING THROUGH, SO DON’T FREAK OUT. I HOPE TO NEVER HAVE TO GO THROUGH THIS, BUT…

Hopefully the current treatment does its job forever and we never, ever have to think about IVs, neutropenic diets, and delymphomatization again. Lymphoma treatments are evolving quickly, and the need for such brutal cures will hopefully be a thing of the past soon. But should I ever need a donor transplant, there is a good chance that the marrow that saves me could come from my firstborn. At birth, we will be collecting Lester’s umbillical cord blood, and it will be stored somewhere in the Arizona desert, where I hope it will collect dust forever, or be donated to someone else in need. But should I ever need it, and Lester’s marrow is a match to mine, it’s there. And should I need it, and Lester’s immune system in the form of his/her marrow saves my life, it will be a miracle, our lives literally meshed together, father and child as one in the ways of medicine and in life. And to Lester I will forever say thanks and love.

Some time late next week, once the dreaded “B” cycle begins again, I will probably need another transfusion to prevent my platelets and hemoglobin from dropping to levels so low that I actually slip between the cushions of the couch. Two bags of blood await: one is a holy bag, the descendants of Abraham’s finest in the form of blood from my Rabbi; the other, a bag from my friend Brian, a local Philly guy who is such a rabid Philly sports fan that I fear his blood will just make me sit in the corner and cry for days about blown chances.

The bag of blood I unfortunately won’t be getting is from my sister Andrea, who has been truly amazing during this time, coming down for my treatments, and especially taking good care of Jacqui and Otis while I am in the hospital. My sister, it turns out, despite being an A+ blood donor match, is ineligible to give me blood. Exposure to the Epstein-Barr virus from a long-ago bout with mono (because EBV is may be a contributing factor to some lymphomas, the folks at the blood bank suggest I steer clear). Damn you, boy with mono who kissed my sister in the 9th grade!!!

And while the Rabbi’s blood might have me dancing The Hora and eating too much whitefish, and Brian’s blood might send me running out for a Philly cheese steak, I’ve been wondering what Andrea’s blood might have done for me? Andrea’s empathetic abilities (she is a social worker, after all) would, I am convinced, have finally qualified me for the position of ship’s counselor aboard the Starship Enterprise. There I would be, standing besides Captain Picard, using my empathetic senses to warn him that the evil Romulan was hiding something. And it would have been Andrea’s other wonderful trait, her free spirit, now coursing through my veins, that would have led me into joining Star Fleet in the first place.

Andrea is my little sister, which means that since she was born she suffered through brutal teasing, the occasional pulling of hair, and certainly the “I am too cool for you and your little friends” years of high school (save, of course, her one little friend who crawled into my bed at 2am the night before I left for college). But through it all she always showed unswerving love and dedication to her big brother, and has most importantly, forgiven me for torturing her. With her blood in my veins would that mean that I’d actually be easier on myself?

And while blood may be the literal gift of life, I say to my sister (assuming I get the holy blood): “Behold, Andrea! While thou may not giveth thy brother the corpuscles of life, thou are thy brother’s keeper, and hath giveth him so much more.”

Saw the doctor today for my routine between chemo appointment. Blood test showed that I am no longer neutropenic, and that my counts continue to recover nicely.

Immediately following the appointment, no longer on any dietary restrictions, I headed right to the neighborhood sushi bar where I downed some delicious tuna, salmon, and yellowtail. The food-fest continued at the Famous Deli, where Jacq and I ate sandwiches, pickles, and french fries. It’s now almost midnight and I just made myself a salad. And the night is yet young. What should I eat next? One more wafer thin mint? Get me a bucket!

Despite overeating tonight, I am feeling remarkably well. I said to Jacqui tonight that I have not felt as good as I do now since the first drop of chemo started flowing nearly two months ago in this wacky process of delymphomatization. My recovery from the first two rounds never felt complete. And while I am 6 pounds underweight and still sometimes try to place the square block through the triangle hole, tonight, in the crisp autumn air, walking around the city with Jacq, I felt a semblance of myself in mind and body. And boy did that feel good! I am looking forward to writing tomorrow, teaching Wednesday, solving the crisis in the Middle East Thursday, and writing some more on Friday. Bonus points to those of you out there who can identify the source of the title of today’s blog (Hint: It comes from one of the 900 movies that I’ve watched in the past 2 months).

A final word of thanks to all of those who visited this weekend–the Jacoby’s, Greg, Nicole, Paul, Jen, Ruthie, Paul, Bette, Hollie, Chris, Josh, Melissa, and Andrea–and especially Jacqui’s parents, who took good care of me in my weakened state. I may have been a little weak from the low blood counts, but it never dulls my feelings of love and gratitude for all that all of you are doing for us during this time.

It’s Saturday morning, a week out of chemo, and the expected blood count drop has arrived.

That makes today couch day, where I will sit in a semi-exhausted state from my low hemoglobin level, nap a little, and knit the baby a sweater which says “My Daddy Survived Lymphoma and All I Got Was This Lousy T-Shirt.”

We’ve got a full house here this weekend, with Jacqui’s parents, brother and girlfriend, and a slew of friends coming by to join my knitting circle. Please send yarn. Time for a nap.

Just a quick note to say that Michael is doing very well. He had his blood tested today and his white blood cell count is hanging tough– we can even go out for dinner tonight instead of cooking the standard bland chicken and baked potato that has been getting Michael through his days of neutropenia. He still might be neutropenic over this weekend, but at least the recovery from this round has been a world of difference from the first two.

In other news, pregnancy is going well. I am 33 weeks now and looking forward to the next 7 going by as quickly as possible. At least we have lots of friends and family stopping by to visit this weekend. Thanks again for all of your support, friendship and love. I’d like to say a special thank you to my parents, Michael’s parents, Andrea, and my friends Ivy, Avi and Marci who routinely go above and beyond the call of duty to keep us warm and smiling. It makes us feel good to know that Junior will be protected even in the moments when Michael and I are also focused on his health.

Last night, 48 hours out of chemo, Jacqui and I headed up to ole’ NYC for the annual Lymphoma Research Foundation dinner. I dragged myself out of bed (literally), got in the car, drove about 4 blocks, turned around, and went instead to the train. So we trained up to NYC, a much better choice given the very pregnant wife and the chemo-brain (more on that later).

Thanks to the incredible transfusion I received last Friday from my buddy Neil, my blood counts were so good that I got a pass off the home base for the night to head to the dinner (normally, I was told by the doc, a unit of blood raises one’s hemoglobin by about a point. Neil’s overly generous donation almost ticked me up three points. Thanks again, buddy).

The dinner was lovely. I schmoozed the room for a few hours before the exhaustion set in, but not before chemo-brain managed to embarass myself at least once, and possibly more (Jacqui swears that she found me trying to buy pizza from a urinal in the Penn station men’s room just before we got on our train back to Philly). The most embarrassing moment of the night came when I walked up to one of the doctors who consulted on my diagnosis almost 2 years ago, totally mistaking her for someone else, giving her a big hug, a kiss, and chatting on and on until she told me who she was. Oops. We had a good laugh, and then I almost did it again with another guy, who I also thought was a doctor we consulted with 2 years ago. The whole thing was bizarre, but I am laughing about it today (that is, until the restraining orders arrive).

Now I am home, dug back into the couch, cuddling with Otis, and in the special company of my father-in-law who has donated himself to taking care of Jacqui, Otis, and I for the week. A special word about my father-in-law Alan.

(Here is Alan performing his version of the plague of “darkness” during last year’s Passover Seder)

For those of you lucky enough out there to know Alan, you, like me, know him in two ways, as a bit of a character (understatement heavy), and as a dedicated father, husband, and family-man extraordinaire. Alan’s explosive laugh is both jarring and infectious. But most important to me, he, along with Jacqui’s late mom, step-mom, and extended family, raised an incredible daughter with poise, a keen intellect, and a lot of love, all the while wearing, I am told, goofy white sweat socks raised above his knees and enough zinc-oxide to protect the earth from the sun’s ultraviolet rays for decades to come (how Jacqui became so stylish, we may never know). Jokes aside, his committement to his daughter, to his family, and to me, has deeply touched me, and I am happy to have him here nursing me back to good health. Thanks, Alan!

Got home last night at around 8pm thanks to the incredible care from the nurses and doctors on Rhoads 7 at Penn.

Woke up this morning feeling ok. Looking forward to sleeping and watching football all day.

A special thanks to everyone for their continued love and support.

Turning the blogging pen over to Jacq later today for a while until my mind clears of the life-giving poison.

Go Jets!

Treatment is going well, and I feel OK. Will be home by tomorrow night, and then in bed for a few days of sleep.

This morning, because my hemoglobin is still low (a normal chemo side-effect), I received the gift of life, granted by one of my oldest and closest friends Neil Schwartz, who donated a pint of his finest for me last Sunday. The blood has been irradiated to make sure that his strain of cooties doesn’t get passed on to me.

So thanks Neil, I am deeply touched by your gesture and your generosity. As a lymphoma survivor I am ineligible ever to give blood again. What can I give you? You’ve also got a full head of hair, so a hair transplant is out of the question. Hmmmm, I’ve only got one kidney so I can’t spare one of those. Tell you what, if you ever need some extra back hair, I am happy to share. Just let me know.

The only strange side effect of the transfusion so far, is that I’ve found myself calling Neil’s college girlfriends just to say hello. Hi Stacy Sager. Hello random girl at The Jumbo.

In college, if you put Neil, myself, and a guy named Brett Ruth together it looked like we were related by degrees with Brett being the missing link between us. But after the transfusion, I’ve been through a bit of a metamorphosis and now look like this…

Everything is good, but what a strange night last night was.

Got the call from Penn at around 5ish yesterday that my bed was ready, and after a great day of shopping for the baby, I took Otis for a walk in the rain, packed up the car, had my daily shot of whiskey, and headed over to the hospital.

At around 7pm we boarded the elevator in the Rhoads Pavilion to head up to my room. I noticed right away another couple on the elevator with us. They were dressed oddly for a rainy Philadelphia night–he wearing a bolo tie, she these giant rhinestone-trimmed eyeglasses that suggested Boca Raton or the South Shore of Long Island. And, they must have been big fans of Johnny Cash, the man in black, as they both looked like they were heading to a funeral. He carried a wooden case that I figured was for a trumpet, or maybe even an accordion. Were they a family act that traveled from hospital to hospital across the land to entertain bored patients? Was my night going to be filled with the musical stylings of Johnny Cash on the trumpet, or even worse, a night of chemo patients doing the polka?

Since Jacq is very large these days, we are used to people striking up conversation with us wherever we go. “When are you due…?” “What are you having…?” “I’ll bet my house that your baby has a giant nose…” This particular elevator ride was no different. The woman in the rhinestone glasses immediately chatted us up. She was in good spirits, friendly in a way that might make us city-folks a bit uncomfortable.

WARNING: THE STORY GETS PRETTY GRISLY HERE ON OUT. SO IF YOU ARE EXPECTING OR HAVE A WEAK STOMACH YOU MAY WANT TO STOP READING HERE AND SKIP TO THE ALTERNATE ENDING

Once the rhinestone-glassed woman realized that we too were on our way up to Rhoads 7, she felt the need to share with us (why, WE DO NOT KNOW!) that they were funeral directors, coming to the hospital to retrieve the fetus of a patient on our floor who had just miscarried. The box, it turns out, did not contain a musical instrument, but would be used to… well you know what it was for.

We were mortified. Not normally short on words, I didn’t know what to say. Jacqui, equally quick with a quip, managed to blurt out something like, “I am really glad you shared that with me.” The folks in black said nothing more, sauntered off the elevator, and disappeared down the hall to do their sad and grisly business.

I checked in with the nurse, got Jacqui into our room, and immediately retold our crazy story to the nurses and doctors at the front desk. They were mortified, and to their credit, did an incredible job protecting us and reassuring us (without violating HIPAA rules) for the rest of the night and into today. We were both very upset (obviously), and I told Jacqui that we should leave. We cried a little, and decided that it was best to stay on schedule, and within a few minutes we managed to crack a few jokes about the whole crazy situation. Within an hour, we realized that what had happened was so outrageous and bizarre, that we were laughing and back to focusing on the important matters at hand–delymphomatization and a healthy baby-to-be.

The nurses, who today were still enraged at what had transpired, have let hospital administrators know what went on (as I will as well), so that we are sure that this never happens again, and that the accordion playing, fetus gathering, funeral directors know that they are not welcomed in this hospital.

ALTERNATE ENDING: THE COUPLE IN BLACK WISHED US WELL, PLAYED A FEW POLKA TUNES, AND HEADED BACK ON THE ROAD TO WISH OTHER PREGNANT COUPLES ALL THE BEST.

Last week, it seems, was summer. I finished the Philadelphia Triathlon on June 25, we closed on our home on the 26th, and then Jacqui and I spent a few days on the beach in Cape May over the July 4th weekend. I had scans a week or so later, and so began a month of testing which led to where I am today–bald, low on hemoglobin, and wishing that I could travel back in time to stop myself from drinking that pesticide flavored milkshake that probably caused my lymphoma. Mmmmmmm, pesticides.

And then suddenly it was fall. Earlier this week I noticed that the leaves had begun to change on the tree outside our bedroom window. A few days later I felt a chill in the air for the first time, and today I got several unsolicited suggestions that I dress as Nosferatu for Halloween.

I have had little sense of the passage of time these last three-plus months. It was shocking when I realized it was Fall. I suppose I could write this off as some strange chemo side-effect, or caused by watching reruns of Star Trek over and over again, but I think that it feels more like time outside of our home has been suspended rather than its having slipped away. By this I mean that when I am home and recovering with Jacqui and Otis and whoever else comes to visit I feel far away from the passage of time in the outside world (which includes, I’ve been told, a country that actually seems to be marching backwards in time).

My best measurement of time has been Jacqui’s growing belly, and the continued growth of our baby-to-be. Unlike the suddenness of fall, each day when Jacqui comes home I see her growing belly and realize that we are getting closer to that extraordinary day. Next thing I know it will be “Junior’s” fifth birthday party at Chuck-E-Cheese, his or her Bar/Bat Mitzvah, or parent’s weekend at college. Better start saving now.

Tomorrow (Wednesday), should a bed be available on 6 or 7 Rhoades at Penn, treatment 2A in the HYPR-CVAD chemo cycle begins, and we are a little bit further down the road to de-lymphomatization.

I was hoping for this week off, but my blood counts keep bouncing back quickly (a good sign, I am told by my doctors), and so my life as a lymphoma patient continues and time marches on.