Tuesday, October 02, 2007

Ibby Caputo - Fighter, Writer and Activist

Many of you know Steve Caputo, a Plainfield attorney whose practice includes real estate transactions. When I worked with him back in my real estate days, I also learned he was a deeply spiritual person who devoted a great deal of time to the Catholic Diocese Metuchen. He is also one of TWO people I know who are Princeton graduates.

Yesterday, I learned that Steve's daughter Elizabeth, known to all as 'Ibby', has been diagnosed within the past few weeks with Acute Myeloid Leukemia and is fighting the disease from her stomping grounds in the Cape Cod/Boston area.

Steve has been kind enough to share some of his and Ibby's emails reflecting the news and its impact on Ibby and her family. You will find them posted below. Also, see my post on PLAINFIELD TODAY, concerning how to help Ibby and others facing this disease.

-- Dan

On August 28, Ibby shares the news of her diagnosis --
Dear Family & Friends,

I have some good news: I'm taking up meditation. Unfortunately, I also have some bad news: I was diagnosed with AML acute leukemia this past weekend. Again, good news: it's totally curable. Bad news: the next four to six weeks are going to suck big time, and then after that I'm going to have a year or two of pretty heavy duty healing, which of course will involve some pretty sucky moments, along with some really good moments I think too.

I know this comes as a shock, and I'm really sorry. I'm going to be okay. I'm at Brigham & Women's Hospital in Boston, one of the top oncology centers in the world. My doctors are all brilliant and have been explaining things very clearly to me. I have applied for and have been told that I will receive Massachusetts Health Care, which means my medical bills (and I'm racking them up by the minute) will be paid for.

The back story is this: I got an infection that wouldn't go away. I went to the hospital late morning Saturday to have it checked out. They took blood which revealed severe anemia and other abnormalities.
I stayed at the community hospital in Cape Cod until the next evening when they then transferred me here for more sophisticated care.

It's been a ridiculous whirlwind so far. On the same weekend two years ago my life changed just as drastically, so I guess in some ways Hurricane Katrina prepared me for this. There's a lot of information to take in, along with this sudden new life... but I'm just going with it. I'm not looking back because that won't do me any good, but I will let you all know that I have had an amazing summer - I love Cape Cod, I love the radio station and coffee shop where I work, I've made some really good friends and thank God because they've been so supportive through this craziness, I've walked on the beach, I've relaxed, I've gone sailing... When all this stuff is over, I'm pretty sure I'm going to plant my roots here, always checking in with New Orleans and New Jersey of course.

So that's my story for right now. What do I need from you? Love love love love love and more love. Ya'll know I love to be loved, so send it to me in huge dosages whenever and however you can. You can call or write to me and hopefully some of you can come visit, but just know when you do I won't look the same at least for a little while and I temporarily might be less sprightly than usual.

If I don't answer your calls, or I don't get back to you right away, please don't take it personally. I'm going to find myself a spokesperson among you to e-mail this list with updates when I'm not feeling up to it. Many of you won't actually know the spokesperson, but I'm sure if you did you would like her a lot.

I'm being well taken care of by doctors and nurses of course, and by family and friends who are keeping me so busy by visiting and calling that I hardly have time to remember this cancer thing. Every once and a while I remember and that sucks, but I'm kind-of psyched to use this as an opportunity to learn to meditate - I always thought if I went to prison I'd use it as an opportunity to watch my breath, and this is about as close to prison as I ever want to get (so far when I've been in patient waiting areas, I've had the inclination to turn to the guy sitting next to me to ask, "what are you in for?", but I haven't yet because I'm not sure ill people are supposed to be so funny.) Anyway, my friend is helping me find a meditation coach to come visit me in the hospital. I think I'm doing okay spiritually.

Don't send flowers, because they're not allowed on the floor. Do send post-cards, letters, art and stories from the outside world. I love stones, music, good food... (if you are a visitor, please feel free to bring food. Hospital food sucks, and I can eat everything but raw fish and meat. I'm looking not for comfort food but for good, healthy, organic nutritious stuff. Carrots over cookies please,
unless their homemade).

I guess that's it for now.

May my blood be healed. May you all be well.

I love you,

Ibby's father, Steve, shares the news with family and friends --

August 30, 2007

    Over my 25 years of legal practice as well as in the rest of my life as a friend, acquaintance, Montgomery resident, Princeton alumnus, etc. I have had the opportunity to suffer life’s ups and downs with you. Many of you I have helped through family ups and downs, your low points and triumphs. Because of our ongoing relationships and because as a group you are largely a spiritual people, I thought I would share some unfortunate news rather than having to do it one on one many times.

    Elizabeth called us from Cape Cod on Saturday morning saying she was sick and going to the ER. By the evening they had diagnosed her as having Leukemia. She is now in Brigham and Womens Hospital in Boston (She wouldn’t come to NYC for chemo) and will be hospitalized for around six weeks for the first installment of chemo. She is suffering from Acute Myelogenous Leukemia. She has subtype M0 or M1. This form of Leukemia is the most common for adults. The subtypes range that she fits in is neither the best nor the worst. But, it is very serious with only a moderate survival rate. We are especially concerned that she is in Boston and we are in NJ. It limits our ability to be there at her bedside when the chemo gets gruesome.

    Needless to say our lives have been turned upside down. We celebrated thirty years married exactly a week before this happened. We thought life was finally getting under control.

    The ironies? Her masters thesis at Columbia Grad School for Journalism was a long article on a guy who was diagnosed with leukemia and underwent both western medical protocols and eastern medical protocols. The day before the thesis was due, he died and she had to rewrite part of it.

    Then there is the fact that she taught medical students at Tulane the medical-human arts in the art and creative writing therapy course she started at the Ochsner Hospital in New Orleans for pediatric cancer and leukemia patients.

    And then the fact that my niece Marcella ended her chemo treatments for Leukemia three months ago.

    And Sarah spent the last week with Marcella at the American Cancer Society Camp Adventure for cancer patients and their siblings. (Sarah was Marcella’s pseudo sibling). The camp loves Sarah and wants her to become a Jr. counselor at the camp over the next two years. However, Sarah was the only person at the camp without a sibling who had cancer. Sarah has taken the news courageously because she is very close to Marcella, spoke to her nearly every day over the two year chemo regimen, and was with Marcella when Marcella was rendered totally incapacitated by the chemo treatments. If you have the opportunity to interact with Sarah, I ask for your kindness and any help you can give in helping her vent but keeping her strong.

    Perhaps this means that we are as prepared as we can get for this. Put how can you ever be prepared for your child getting Leukemia?

    We ask for your thoughts and prayers for Ibby as she undertakes this challenge. Those of you who know her well know that she is a strong, headstrong, young woman who at 26 has thought deeply and traveled widely. I would like to think that if anyone can sustain the challenge, she can. We shall see.

    Thanks for caring. And God Bless you and your families.

    Steve Caputo

Ibby writes her family and friends from Boston's Brigham and Women's Hospital --
Subject: There is no more room in Ibby's body for cancer cells.

Dear Family and Friends,

I had a friend shave off my hair tonight. Only a few of you may know, but I'm really vain about my hair: I love to brush it. I love how long it had grown - I even had fantasies that when it got long enough to put in a bun, I'd consider getting married... But I wanted to shave it off before it fell out.

I have to say, I kind-of like this look too. I look like a warrior.

I got some news today. They found some more leukemia cells in my blood. What this means is I may have to go through another intensive round of chemo before I leave the hospital, prolonging my visit here, among other things. They will know for sure after they do another bone marrow biopsy on Thursday.

I already completed a 7-day, 24-hour chemo drip last week. At times there were some pretty intense side-effects, but all-in-all the doctors said I handled it really well. Possibly too well.

What's supposed to happen after you finish the chemo is that your blood counts - good and bad - drop almost completely (they say from 48,000 white blood cells to 50). Well, I dropped to around 1,400 white blood cells, and then my counts started bouncing back, earlier than most people's do.

At first, when they didn't see any cancer in my blood, they thought I was just awesome. Now, (though they may still think I'm awesome), they are also worried that the cancer cells are as headstrong as I can be. Apparently, 25% of all people with AML Acute Leukemia have headstrong cancer cells, and they say this extra round of chemo that I may have to go through doesn't affect overall prognosis or recovery, which is good news.

BUT, there is a chance that the leukemia cells they saw in my blood today are the last of a dying breed. This is what I want. Because I do not want to go through an extra round of chemo, and I do not want to spend an extra two weeks in this hospital, and most importantly, I want to finish this week off knowing with confidence that this first battle has been won.

So, I was wondering if you all could do me a favor.

When you think of me in the next couple of days, could you please think to yourself, "THERE IS NO MORE ROOM IN IBBY'S BODY FOR CANCER CELLS."

When they explained this disease to me, they said this: "see this room? it's like your bone marrow, and the leukemic cells are crowding themselves in here and your good cells are getting smushed and have no room to flourish." The last two weeks I've concentrated so much on accepting this twist of fate in my life and tolerating (with a healthy dose of sass) the chemotherapy regimen, that I didn't really concentrate at all on fighting the disease.

That changes now. Because now I'm a warrior. Please be my army.

There's no more room in Ibby's body for cancer cells.

Thank you so much for the love and support you have all been sending my way. I feel it, and I do believe it's going to heal me.

All my love,

Ibby shares two experiences from the hospital -- and you learn how good a reporter she is --

I wanted to share two experiences I've had recently. The first was a few days ago.

A doctor around my age came in during morning rounds. Brigham and Women's is a teaching hospital, so many of the doctors rotate, and I am one of their learning tools. Once I figured this out, I started to resent it, and have not had much patience for the young, inexperienced docs. When I first got admitted and diagnosed and my carefree life suddenly snapped into something else, I was obsessed with the age of my doctors, especially the one who told me at 1:27 AM on August 27th that I had Acute Leukemia. She looked like me. Long brown hair, dressed well, young, smiley, she even had on a turquoise ring. It was like the mirror was telling me I was sick.

Anyway, the other day a young doctor comes into my room and asks me how I'm doing. I respond by asking, "Mentally, physically or emotionally?" because I'm never sure what they're asking after. She
said all three, so I told her: I woke up depressed, I had crazy dreams and my stomach is cramping.

Then she came around the other side of the bed to listen to my lungs, etc., and she asked me how long I've been here and how I was diagnosed. I told her the story you already know: I came in a month ago because of an infection and fever; I haven't left since.

Then the most amazing thing happened. She started to cry. The doctor. She put her hands on mine and then hugged me. She said she had a Buddhist prayer wheel she would try to find to give me. She hugged me again, still crying. I told her she was a good doctor. She kept apologizing for crying, and after she had washed her hands and face at the sink, she stood in front of me and said, "It's just, I'm 28, and it could be me in that bed, or one of my friends."

When she left I experienced an incredible stillness. I'm her and she's me. I suspect other doctors have had this thought, and I suspect others have denied it - I can tell by the way they treat me -
but this doctor had this thought and let me know it. She calmed something in me.

Now I have to tell you about another experience.

I woke up yesterday morning tormented by such horrible anxiety I couldn't lift my head off the pillow and yet I couldn't keep it still. I felt like I was suffocating. Like I wanted to crawl out of my skin and escape. Be someone else. Be on a ferry to Martha's Vineyard. Be working at the radio station or coffee shop. Be having a completely inane conversation. Anything else. It lasted almost all day long, until around 2 pm I curled into a crying ball with my head in the lap of my brother. I'm a strong fucking independent woman. I've never experienced vulnerable like this.

Steve stroked what's left of my hair. When the moment passed, he said, "See, you got through that moment."

I've been on a steady stream of Valium since then and I finally feel on top of the panic, at least for right now.

During that panic, though, for a moment while in the fetal position my higher-self kicked in and I realized how lucky I am: I'm suffering in a hospital, where people are nurturing me, where they are fighting for my survival, where I can get drugs like Valium, where I'm consistently being loved and supported by family and friends. I thought about all the other people in this world who are also suffering - experiencing intense claustrophobia in their pain. Most don't get the perks I get.

I shared this thought with a nurse much later on in the day and she advised me not to think about other people's suffering. I did not say this to her, but I think ignoring other people's suffering is like ignoring the inevitability of death. Blink. It's still there.

These experiences are some of what being sick is like for me.


On October 1st, Ibby looks forward to getting away from the hospital --
A note to her brother today:

Steven, my whole entire life is changing so quickly. The girl who I was is gone now and I have absolutely no clue who comes next. This for me is bone-crushing heart-breaking, because I really liked her. The thought of saying goodbye to her sometimes seems like too much.

But I'm going to grit my teeth and go through with it and give it my best shot. And while I understand it *may* - and I stress the word may, since it still seems like the doctor said suffering is increased by distance but not necessarily risk - be safer for my body to be ten minutes away from this hospital, it is safer for my spirit to be in Woods Hole.

Also, my instincts say Woods Hole. And my friends found me a treehouse.

Here is a sample of Ibby's activities and writings --
Ibby was heavily involved in post-Katrina relief and helped start a project for New Orleans kids to capture what was going on and what it meant to them in a Kids Camera Project.

Katrina Help Center: "Our Town: New Orleans youth document life post-Katrina"
and the project's website: "The New Orleans Kid Camera Project"

An online story Ibby wrote for The Villager: "Hit send for therapy, or take the stage"

And, lastly, a story from the Princeton Packet about Ibby, the master fencer: "Athlete of Week: Ibby Caputo
Montgomery fencer finished third in state epee competition"

About Me

Plainfield resident since 1983. Retired as the city's Public Information Officer in 2006; prior to that Community Programs Coordinator for the Plainfield Public Library. Founding member and past president of: Faith, Bricks & Mortar; Residents Supporting Victorian Plainfield; and PCO (the outreach nonprofit of Grace Episcopal Church). Supporter of the Library, Symphony and Historic Society as well as other community groups, and active in Democratic politics.