And What Followed...

Friday, September 29, 2006

Marrow is holding it's own!

I got blood test results today that revealed my levels nudged up just a wee-little bit (first time WBC levels were above 2.0, normal is 4.0 to 11.0) and my platelets have NOT gone below 50 (normal is 150 to 350).

This means that the marrow is "holding its own", without any injections or transfusions. A good sign. Thus, there is a small small small possibility that I may be going home in a couple weeks! The next step on the way to recovery. We are
so lucky to have gotten this far. It was a one in three chance. It remains a one in three. But I am so so grateful to continue to still be here and share this beautiful life with you guys.

October 15 is the weekend of that great milestone : "Day 100". :)

Much much love,

P.S. FYI - In the middle of writing this message I had another emergency come up and went to the ER and back. Everything seems to be under control now. Each day is like Apollo 13. The situation, your strength and your fragility changes, with every hour. Makes you really appreciate the now.

Life is not about how many years you live, but how many moments you love.

Thursday, September 28, 2006

Rollercoaster recovery

I know I haven't sent an update in awhile. It's been a rollercoaster ride here, on all levels. I'm sitting at one of the "shared community" computers trying to bust this out before they call me into my next appointment.

After we got the good news of the marrow grafting, all sorts of complications and not-so pleasant things started happening all over and inside my body. Sometimes they were annoying, like random hives on my skin to downright excruciating pain in my abdomen. It felt like i was going through some weird intratransformational restructuring from the inside out. I've been to the emergency room a few times, had my medications switched and turned and re-dosed and changed again. I've been saved by a few transfusions along with lots of TLC. Because my blood levels have been so low for such a long time, it is taking a cumulative toll on my body. Blood feeds, cleans and connects EVERYTHING and when that system has been run down for so long... well, it's just not very fun.

But I am just so happy to be alive and breathing today. I am tearful every morning when I see the sun and the trees outside my window. Another day. Another gift. Another inhale. I've lost a few friends here during my stay. Each one a beautiful soul. Each one hoping, hoping, pleading for 'just a little more time' to be. To just be. There is no fear of death here. Only the fear that the life you planned for or the love you hoped for will never be.

Here you will often find yourself face to face with a stranger, but a stranger you know very well, because you both can hear the clock ticking and you don't know how much time you have left to live and love. A lot of my day is spent with other patients and their families, holding hands, answering questions, soothing anxiety with much needed hugs and... just being there for someone who needs someone who has been there too.

In a couple weeks I wil have another "graft test" done. Why? I asked the same thing. "I already have 100% graft!", but the doctor just nodded and said, "Yes, but sometimes things change". In late October I will get the BIG test, the PET/CAT scan that will give us a more definitive answer to my prognosis. We've beaten the odds thus far, but there are a lot more odds to face in the coming months. My next goal is to make it to New Year's Eve. Even in recovery, uncertainty still lays heavy. Right now it remains coin toss.

So each day continues. This fight. But I am trying to do good while I'm here. I'm still helping to spread the word, set up marrow drives and help with fundraisers. By the way, "Cinema Secrets" and In'n'Out burger have teamed up for a fundraiser/marrow drive at the end of October to benefit my foundation and help my friend Jerome. It's going to be huge. We'll be speaking at the event. Hope to see you there.

More updates. More often. I promise. The last two weeks have just been too hard. Wish I had a personal assistant. :)


P.S. I visited the blood donor center here yesterday and was told that they are in great need of platelet/blood donations. If you feel like doing some good, save a life and make a real difference, they could surely use your help.

Tuesday, September 19, 2006

Get yourself screened

I plan to send out a more detailed update on my progress very soon. Even with the 100% graft, it's still been a rollercoaster ride on all levels. My days are consumed with appointments, tests, waiting rooms, fatigue and naps. Reaching out to other patients and families, talking and connecting and sharing story, helps us all to learn and heal together. Everyone here is living on the precipice and that heightens the moments and makes simple words strikingly heavy and meaningful. A patient looking at you straight in the eye and saying "I hope to see you next week" is truly what is in his heart. I usually give the longest hug I can and try not to cry. The best response I've heard was (by a dark-humored patient) "If not, I'll catch up with you later." This is what they really mean by living on the edge.

For those of us who want to keep in the realm of life and vitality, I just found out that there will be a Health Fair at City of Hope tomorrow (Wednesday the 20th). There will be FREE Health screenings, information booths, pharmacists to question, and healthy food giveaways and door prizes. But the mother of all is the as- seen-on-TV, made famous by Huell Howser, 20 foot long 'Super Colon'that you can walk through. It's a pop-culture legend! I'd love to take a picture of Tom Cruise pouting in the middle of the colon with the line "Look at all the s**t I have to go through." Let's put that on the New York Post.

Well, I want my friends to stay healthy so I thought I'd send out this announcement. Get yourself screened!

Stay well. Be well.


Saturday, September 9, 2006

Day 66 (76 days in hospital) - Notes from the Edge of Life

This weekend all our thoughts are on the lives lost on September 11, 2001. And for the families who have kept the spirits of their loved ones alive each day since. As a native New Yorker, I hope we can all take a few moments of silence in remembrance and in honor.

Two nights ago, a tangerine moon rose over Los Angeles. I sat writing at the campus Bistro, as the last visitors silently filed out of the hospital. A patient waved from a window on the 5th floor, adjusting his mask before rolling out of sight, his I.V. poles in tow. Every night on campus, the air becomes thick with dreams, fear, faith, prayers, anxiety and existentialism. Sitting outside the hospital was like being next to a six-story sub-woofer, thundering the tearful, almost manic thoughts of all the souls inside fighting to stay alive.

I wished I could have lit a beacon and shined it into every room, to burn away any troubling thoughts and bring peace into hearts, including my own. Suddenly I felt a comforting hand upon me. It was Uncertainty, and she graced me with a smile of assurance. 'What will be will be and know that only good can come of this. It is not the challenges that enter life that define us, but how we live through them. Be brave. No matter what trauma or challenge you face, don't let it break your spirit because it is the only part of you that lives on.'

The next night, I sat between two great California pines overlooking the sculpture garden, thinking about my brother Francis Rex, who I like to think as watching from above. "Another New Day" by Stereolab from the album "In Between" randomly played next on the ipod. "How fitting", I thought. And how lucky am I, are we, to be alive and here at this moment. Our turn on the ride. Our chance to leave a mark, whether through sweeping worldwide changes or through loving one heart. How lucky are we to be given a chance to express whatever we want, in whatever form, and to share all of it with others. Our one chance to create light… or darkness. Our forefathers knew well that true happiness was not found in the goal, but in the pursuit.

We received news today, news so good that I am exhausted from the joy. Now that's a good place to be… Joy is good, but to be exhausted from joy is the ultimate of blessings. We got the results back from the latest `graft' test. As you all know, it was looking dicey there for a while because my marrow seemed to be fighting the donor's marrow. The transplant was chimeric, part-old marrow, part-donor marrow. Not good. It was creating all these troubling complications. But the test today read "100% donor marrow". It's official. The donor marrow has GRAFTED. This is a very good sign and a great sigh of relief. My doctor was jumping up and down and her assistant shouted "Woo-Hooooooo!!!" I felt like Miss America. I was one of the lucky few. Of course the rest of the day was spent calling immediate family, with lots of tears and "I love you" racing back and forth between wires and satellites.

I'm so thankful to be alive. Now our hopes and prayers focus on the donor's marrow happily and quickly setting up shop. It's all about reconstructing a brand new immune system and rebuilding the blood, from scratch. We've turned onto a promising road, but a long one. Well, I've always embraced adventure.

In the greater of things that illness can teach, is the lesson that what truly matters is not whether you live or die. Your body may survive but your soul may be broken. While we all want to live long and meaningful lives, the journey is more about keeping your soul intact and alive, not necessarily your body. Your spirit is what will be remembered and is the legacy that will be passed onto the future.

September 11 is Monday.

Much love,

Wednesday, September 6, 2006

Update from Jackie - Pray for better counts

Hi Everyone,

I talked to Christine today and she wanted me to let you know that they retested her blood today.

Her counts have not yet risen and her platelets have dropped by 50%.

She asked that everyone please pray for her. Pray that those numbers go up.

On a brighter note, I went to see her monday and her spirits were up and she looked so good! Her spiritual "counts" are way above normal range, and that's just as important as what comes out of the lab's scientific computer.

Much Love,

Sunday, September 3, 2006

Day 58 (68 Days in the hospital) - Exhausted

Life here on the hospital grounds has been about the simple pleasures and divine, yet fleeting, moments: Sitting in the Japanese garden watching Koi swim under the bridge. Listening to the waterfall with eyelids closed, in the rose garden. Resting under big oak trees, talking with friends old and new about life and the meaning of it all.

I've been moved to a different room in the village. It's set a little back from the pathway and has a small porch governed by a halogen-orange lamppost. It's a nice place for conversations with good company on a warm night. Crickets are chirping, furry critters are walking through the grass and the trees whisper all around. It feels like you're living "down on the Bayou", waiting for a Cajun to show up with a fiddle and a bucket of crawfish.

I just returned to my room after getting a blood transfusion. Hemoglobin levels are critically low. No wonder I've been feeling more exhausted than usual. Honestly, it's been a rough week. Blood counts have fallen again – plummeting down to a critical level, lower than when I left the main transplant ward. Had to get a couple not very pleasant injections because of it. The virus has given my system a beating. I'm weaker than I was a week ago and find myself back to relying on the wheelchair. My doctor is concerned and is re- adjusting my medications and dosages.

I asked if the latest test results were bad. She said "No, but they aren't good either." We were expecting blood levels to be much higher by now. I'm feeling relatively okay but things just don't look on paper. All those numbers just don't match to what I feel inside.

How can this be?! Just to answer some questions that a few have already asked:

"Can't you just put more marrow in? Flood out your old marrow?"
Alas, no, it just doesn't work that way, and according to the docs, it causes more serious complications.

"Can't they put another person's marrow in?"
Sadly, there is no other person. Secondly, it would literally be considered a secondary separate transplant with worse odds.

"Can't they just give you a shot?"
They can (and do) give you all the medications possible to help keep your body within a certain acceptable balance, (I take 25+ pills a day) but ultimately no one but God knows what the outcome will be. At this point all we can do is continue to hope and pray and live one day at a time.

It's hard to believe that summer is already over. Eight months ago, I didn't know if I would be alive to see Labor Day. Now that it is here, I look back and just want to thank every person who has prayed and worked and stood by my family every step of the way.

I know that many of us have been dealing with our own difficult times, but we take turns holding each other up and being strong for one another. One thing that defines a true friend is someone you can depend on to be there when times get rough. And who will also be there to celebrate when things turn good again.

This weekend is not just a last chance to wear your fabulous white pants. It's that time of the year when we have a chance to just stop and BE. To slow down, look around and spend the day with the people you love and who love you. Sometimes we get so obsessed with what we want from life, that we can't see the blessings that are right there in front of us, including the people in our lives. No matter what you are doing this weekend, going to the beach, having a BBQ, taking a luxurious afternoon nap or escaping to an exotic isle, don't forget to hold the people around you a little closer. Whether it be in your arms or in your heart. It's been scientifically proven that hugs are healthy for you.

I may be sequestered away in my little hospital room, but I want my friends to be healthy, so I'm sending out a huge, fuzzy, soothing bear hug… and I hope you can feel it.

Much love,