Guest Blogger: Jacqui

I’d like to take a moment to acknowledge the hard work and dedication of Michael’s one super kidney. For those who haven’t heard the story, when Michael was first diagnosed last year he had to go through a series of tests including a CAT scan. The tech who was doing the testing turned to Michael part way through and said something like “…so when did you have your kidney removed?” Yup, turns out that my husband was born with a single, albeit enormous, kidney and he never knew. Well, his blood work came back from this morning and it appears that his amazing kidney has already metabolized the methotrexate in his body beyond where we need it to be to get out of here. This means that we can go home tonight after Michael’s last round of chemo (midnightish)!!

Michael is feeling pretty tired. In general I would say that this hospital stay was slightly less pleasant than the last two. We had some screamers on the hall last night and a nurse who didn’t exactly exude confidence. But it doesn’t matter much now because in about 5 hours we’ll be sleeping soundly in our own bed with super Otis and the super kidney.

Keep the emails and phone calls coming. They have been a tremendous pick-me-up when marathons of Northern Exposure start to tire. And of course a happy and healthy new year to all those celebrating. May it be a year of friendship, love, birth and de-lymphomatization.

Sleepy

Feeling tired today. Got the first dose of my second chemo drug this morning and I am feeling it. Not sick, just very sleepy.

Saw my doc this morning who told me that based on last week’s blood counts that things are going in the right direction, so we are very happy with that. I celebrated with a three hour nap. He also told me that I can expect to feel pretty crappy next week, given that this round of chemo is more immunosuppresant than the last round. Lucky me.

So with this bit of good news (the fact that the chemo is doing its job) I wish all members of the tribe out there following my progress a very happy Jewish new year. It was quite a 5766. Very much looking forward to being lymphoma-free in 5767.

I leave you tonight with another possible chemo look…

Otis in Solidarity

Having a good day. Treatment so far has been tolerable. Had a mild reaction to the rituximab at 2am last night. Just minor chills and a little nausea. Switched into a private room this afternoon thanks to the amazing staff on Rhoads 6. Thus Jacqui gets to spend the night, and all are happy, except Otis, who remains confused at the situation.

I miss him terribly.

When I was first diagnosed and a certain Dr. Death armed with the wrong information suggested that I would be heading toward the daisies, all I could think about was that my dog, the second love of my life, would outlive me. Until we had tests results, and the best doctors told me to chill out and that I wasn’t going the way of Campbell Scott in Dying Young, I used to cuddle with Otis in terror. I was horrified that my adorable dog would become the man of the house, always left wondering what had happened to me, and left alone to take care of my beloved Jacqueline. Thankfully, that is not going to be the case, and Otis, while confused at my absense, has taken to wearing a bandana around the house, and has even asked to shave his head. My dog, the genius.


It’s Showtime…Again

Here we go again.

The call came in at about 4:30 from Admissions at HUP. Bed ready. Report for chemo right away. Yes, sir!

We got to the hospital to find out that I was assigned to a shared room, which means that Jacqui cannot stay the night with me. The amazing nurses here on Rhoads 6 promised to switch me into a private room at noon tomorrow. A pregnant belly goes a long way in these parts. I’ll have instant messenger opened all night, plus my phone on, so Jacqui can contact me at any time.

As happy as I am to be back on the road to de-lymphomatization, I am not happy being back in the hospital, especially since that means a night away from Jacqui, and a few nights away from Otis. Plus we have water in our basement, and a parade of plumbers later, we have determined that the leak is external, and tomorrow the foundation guy comes. Don’t we have enough on our plate?! At least the exorcism peformed last week seems to be working.

This treatment is a little different from the last one. Tonight they’ll start me on Rituximab, and by early morning I’ll get my chemo chaser–a 24 hour drip of a nasty drug called methotrexate, for which they give me a secondary drug to help me secrete it. I can’t leave the hospital until the meth… is almost completely secreted. After the meth… is done, I get a different chemo, the name of which I am forgetting, for 2 days. Then I should be free to go home, maybe late Saturday night, but in all likelihood, Sunday morning.

I’ve been getting nice comments on the new bald Mike look, but I’d, of course, rather have a full head of hair. The strangest part of being bald is that my head gets cold, so as it gets cooler out I’ll definitely be switching back to the bandana and other head gear. I’ve got a bunch of new hats and such to take me through the winter. Here’s one…

Bald Mike (or Jeez, My Head is Cold)

Hair is now gone. Over the weekend, with just a few wisps of hair left, I started to look like a cross between Homer Simpson and Darth Vader under the helmet. Not a good look.

So last night, not wanting to spend the next six months underneath a hat or a bandana, I took out the clippers and shaved the giant Yudell head. The photo that follows may be shocking at first, but I do a mean Kojak imitation… “Who loves ya, baby?”

Once completely shaved, I discovered that Jews really do have horns. I have two moles on opposite sides of the back of my head that are located where it looks like my horns once were, cut down to little stubs. Mom, is there something you’ve been wanting to tell me all these years?

So what do you think? Who do I look like bald?

a) Telly Savalas;

b) Yul Brenner;

c) Sinead O’Connor;

d) Andre Agassi; or

e) Mr. Clean

Post your responses.

I go back in for the next round of chemo either tonight or tomorrow. Feeling great (save being a little tired in the mornings), and looking forward to getting a little closer to having this behind me.

Bad Hair Day

I am not a particularly vain person. I am a casual dresser (although I’ve been known to buy a nice suit here and there), I think botox and plastic surgery are signs of the apocalypse, and I know that my nose sits somewhere on the schnoz-scale between Cyrano De Bergerac and Jimmy Durante. Having lost a few pounds from puking last week, my proboscis is looking especially large these last few days.

But I have to admit that the thing I have found most repugnant about chemotherapy, even worse than the vomiting and neutropenic fevers, is the fact that I am going to be as bald as a baby’s bottom by this time next week. I know, I know, it all grows back. Thicker they say. And maybe even of a different texture. But at 38 I still have a great head of hair, and watching the remnants of my mane take the long, circular march down the drain each morning, and knowing that I am just days away from looking like Kojak on a bad day, stinks. I know it’s all for the ever-important cause of de-lymphomatization, but still. Couldn’t the makers of chemotherapy have come up with a different side effect? Like instant six-pack abs, X-ray vision, or the ability to travel back in time to set right what once went wrong (insert George Bush joke here).

On Monday night at dinner my scalp started feeling tingly, and by the time I got home, my temporary membership in the “Hair Club For Men” was already active. Just a simple tug at the follicles, and out would come a small clump. After a visit to Jacqui’s OB/GYN the next morning, where we listened to our baby’s beautiful heartbeat, we headed off to the barber. When our baby is born in just 2 1/2 months, he or she will have more hair than me.

Teri, my barber, gave me my chemo-cut on the house. Just another example of the wonderful acts of generosity and kindness that, despite the discomfort of chemo, have made the last few weeks extraordinary. I can’t wait to pay for a haircut again in 6 months or so. That will be a good day.


This photo was taken of Jacq and I just before the big cut. Notice the extra-thick hair.


Uh, oh. Do I really want to do this, or do I want to wake up tomorrow with all my hair on my pillow?


Ah, the unibeard. A good look if it was 1994!


Thanks, Teri! See you in 6 or 7 months with a big ‘ole mop of hair.

Mmmmm… New York Bagels

Having lymphoma has some benefits, I’ve found out.

Some of them are fairly obvious; gifts from friends, old and new, which has resulted in a stack of DVDs several feet high and the rapid expansion of my personal library.

Then there have been the acts of kindness and generosity. Friends bringing over meals, visits in the hospital, my cousin Emily starting a fundraiser (see earlier blog), offers by almost every last Philadelphian to walk Otis, my barber giving me my chemo cut on the house (tune in tomorrow for that story), and my colleagues at the Drexel Univ. School of Public Health offering to do whatever they can to ease any work-related challenges.

I have to admit though, that one of the most touching gifts came on Tuesday from a new friend, Carolyn Razanno, who is the Chapter Development Program Associate at the Lymphoma Research Foundation (LRF), the nations largest non-profit organization dedicated to raising awareness and research dollars for lymphoma: (http://www.lymphoma.org/site/pp.asp?c=bfIKIVMIG&b=36832). As some of you know, I am currently President of the LRF’s Delaware Valley Chapter, and Carolyn has been among those helping me with the logistics of getting the chapter off the ground.

As we chatted at our Chapter’s first organizational meeting a month ago, I complained loudly about the poor quality of bagels, knishes, matzo ball soup, and other Jewish foodstuffs in the Philadelphia area. Carolyn must have been listening, because the day after I got out of the hospital, two dozen delicous New York bagels arrived at my door like manna from Heaven delivered by the UPS man. Jacqui, her dad, and I have been feasting on bagels and cream cheese ever since. Thanks, Carolyn. You made my day. Now if one of you can get Zabars to open in Center City Philadelphia…

A final note, I am feeling great. Went to the gym tonight, have been sleeping well (save the strange sensation when I wake-up that I need to wheel my IV with me into the bathroom), and am looking forward to a relaxing chemo- and neutropenic-free weekend.