Velveteen Head

At our wedding last June Sheela and I selected a reading from the velveteen rabbit, a cute story about how love is like becoming real. My sister read it and got a particular laugh out of the line "Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby." I think I rubbed my head along with the line about the hair and everybody got the joke. Well, it's just about all gone now. It's not a complete sheen, but we went ahead and shaved it to nub to prevent patchiness problems. Now that's it's gone, I think the best plan is don't look back.

Guess which one is the real pumpkin head!



Next to my 'beautiful' head is my bucket friend. This week the nausea has been a real big problem; I've been coughing up all kinds of yellowy things that my digestive system needs to function and that's not good. I'm supposed to get better over the next few days and then I'll be able to keep things down. That will be swell.

Feeling Alright

I'm almost midway through my second cycle of chemo now and it's getting a bit rough. My white blood cells and neutrophils (wbc replacements) are pretty low so I have been washing my hands obsessively and avoiding crowds and people. My inner misanthrope has taken to the antisocial behavior, so that's not a big problem. I've been having more hiccups through the night which makes it tough to sleep and promotes regurgitation. I have a bucket friend to help and they have prescribed me some interesting anti-nausea medication. I'm taking Lorazepam now, which has multiple uses, the first one listed is treating anxiety. So you could say i feel 'alright,' in a Lou Reed sort of way. Overall things are not much fun but still temporary and manageable. I don't seem to mind my later day Howard Hughes lifestyle.

On the big plus side, I've had some nice visits from good friends, and that along with the notes I've received have gone a long way. I appreciate the effort from everybody. And the Sox beat the Yankees in even more dramatic fashion than I imagined, so the city and Dana Farber Cancer Institute have become quite the Red Sox nationstate. That's fun.

Meet the Cyclone

Today, a dispatch from Sheela:

Almost every day someone asks me 'How's Jon?' This week I'll tell them he's losing his hair. The other night he asked me to give him a haircut. His hair had gotten a bit longer than usual and we both figured that cutting off as much as possible would help manage what was to come. The clipping began. I cut and I cut and then I spent a good part of the evening sweeping up. The next day, in the morning light, I admired Jon's new look but quickly noticed a problem. At first, I thought that the patchy spots on Jon's head were due to my unskilled barber's hand, but after taking a closer look, I saw that his hair was dropping out in small chunks. And I was finding trails. Hair on the tabletop, countertop and even a few on my plate. It was all over the bathroom and covered the bedsheets - a little here, a little there.

After vacuuming (again) I suggested that we buzz it all off. Jon was unwilling but conceded to another idea as a preemptive measure. Here I am in action. Like the name of my new vacuum cleaner - I am the cyclone, vacuuming Jon's head.



Photo by Lu

Jimmy Fund

As I write this, the Red Sox are down 2 games to none in their series agains the Yankees, and are poised for the greatest comeback in the history of the rivalry. I'm not the biggest Sox fan, I only follow the playoffs, but this year I'm especially interested because of their tie to the Dana-Farber Cancer Institute.

In 1948 Dr. Sidney Farber brought a bunch of players from the Boston Braves to the Children's Hospital to meet a young child with Leukemia named Carl Einar Gustafson. They did a radio broadcast, found a new name for Carl, and the Jimmy Fund was born. "Jimmy" beat the odds and lived to the age of 65, as detailed in this Boston Globe article. The Braves moved to Atlanta and Ted Williams of the Red Sox stepped in to carry the fundraising flag. Over the years they raised a lot of money, and built the hospital where I'm receiving my treatments.



On the current team, my favorite player is knuckleballer Tim Wakefield. He won two games in the Yankees series last year and as my friend Geoff pointed out, he spends all his free time fundraising and visiting kids in the hospital. We think he's cool.

For myself, I'm doing alright. I'm between my first and second chemo cycle, which is the time you're given to recover from what they've done to you. One of the drugs, Bleomycin, gives me a fever and knocks me out for a couple days. It's all manageable, but not much fun. Overall, I'm doing well for what's going on and the drugs are saving my life.

Correspondence

I've received some wonderful notes over the past month or so, ranging from ill fated turtle stories to inspiring cancer survival advice.

Doug Berman of Car Talk fame passed along a great observation, "They say chemotherapy is like having the flu on a crowded bus in India." After nearly completing my first cycle I would say it's actually like having the flu flying business class on an 80 hour flight. They have snacks, televisions, and no chickens in the aisles, but you would rather be home.

Family friends Charles and Georgie Taylor have together succesfully fought cancer for a few years now. They offered the tip, "While most doctors deny it, there is a non-medical term called 'chemo brain' which is understood better by those who live with the patient undergoing chemo - there was even a Wall Street Journal article about it a month or so ago. Sheela will let you know when her brain is a bit ahead of your own - let her do it." This was happening well before my diagnosis so I don't think I'll need to make any adjustments there.

And my cousin Steve sent a simple request, "Take it easy on the political rhetoric. Us 'Right-Wingers' want you to be well also." which I think is pretty fair. I mean it to be tongue in cheek but maybe I went too far. I apologize. In these times that divide our country, I will instead focus my ire on fans of the NY Yankees.

Thank you to everybody. With all the support it's turning out to be quite manageable. I appreciate it with all my heart.

And on this post, I've turned on the Comments feature that allows you to add your own note. Please feel free.

Strong Arm

A few weeks ago a friend of mine at work gave me a Live Strong bracelet. These bands are sold to raise funds for cancer research and survivorship programs as part of the Lance Armstrong foundation. It was a thoughtful gift and I appreciated it quite a bit, but I've had a bit of trouble taking to it. I hadn't noticed the yellow wristbands at the Olympics, and as I started paying attention my first impressions were a bit rough. The first person I saw wearing one also had a ponytail and was driving a Mercedes convertible ahead of me in traffic, which is okay, but at the stop light he pulled out a feather duster and brushed up his dashboard. The second person I saw was a wanker type smoking a cigarette outside of a bar in the South End. The third person was a thoughtful individual that I met at a small get together. I was greatly relieved until talk of politics came up. Needless to say right wing republicans are out so I was batting 0 for 3 on this whole Live Strong campaign. I need heroes and compatriots, maybe a goofball like Tom Green is more my speed?

Turns out I just hadn't seen enough. Once I started chemo I noticed some of the patients wear them, people with courage who face odds much tougher than my own. Some nurses wear the wristbands too and they all kick serious butt. So if the bands fit on the people who keep up a smile while making the hospital run, then they work for me.

More Swollen than Swell

They pump a lot of fluid into you. On Thursday morning I weighed 176 and a day later I tipped the scales at 184 pounds. All of it is from retained fluid, so I've taken to wearing my wedding ring on a chain around my neck. It's not too bad overall, but I feel a bit crummy in the chest and I've had the hiccups for a day or so.

On the upside I spent the day with my brother Josh today and we got a chance to talk about all kinds of things, which is always a pleasure. Kerry did well in the presidential debate, so maybe we're a step closer to avoiding a George Orwell decade. And I've gotten a bunch of nice notes from people with some funny stories. I apologize if I can't get back to all of you, but they are greatly appreciated and please keep them coming. My email is jmarston@bu.edu