And What Followed...

Friday, May 25, 2007

It's all worth it

I received this e-mail message last night.
This is because of the hard work we've done.
This is what makes it all worth it. :)

much love,

"I don't think you know who I am, but I am a friend of Jane's.
Because of your story my sister and I entered the bone marrow
donor program. It was unlikely that we were going to be a match
for you as we are not Filipino. We really thought that we would
never be called, because after all what are the chances of being a
match for someone. We were wrong my sister was called and she
is the match for a woman with leukemia (I think). She is having her
physical this week and if all goes well will be doing the donation
towards the end of June. I thought I would let you know that
because of you someone else has found a match.
Keep up the good work and best wishes to you."


Wednesday, May 23, 2007

Celebrating Health

The other day I fulfilled another one of my wishes. As most of you
know, while I was in the hospital, I started a list of wishes and
things I wanted to do after transplant. It gave me something to
look forward to, to aim for and dream about. It also helped me to
believe that I would indeed survive and do all those things one day.
Some wishes were simple, like "Walk along the beach at sunset".
Others were more ambitious, as in "Visit all the major cities in the

This weekend I fulfilled a simple wish. A couple friends and I went
to a festival in the park. An Afro-Cuban band drummed and
trumpeted from the stage. The wish fulfilled: To dance barefoot in
the grass. I felt so free and alive; with the sun piercing through the
tree branches above me and the branches themselves shuddering
to the boom beat of all the drums. I laughed as I let the hipsway
and the swirl overtake me. It felt so good, I actually started to cry.

To be outside in the fresh air dancing under the trees, without
having to worry about blood counts and statistics and scans…
that is freedom.

Save the date: To celebrate the one-year anniversary of the
transplant, my first BMT birthday, as well as my real Birthday
(which I had to postpone), I plan to have a party on a Saturday in
mid to late July. It’s going to be an 80s PROM.

The cheesy theme: “Forever Young: Reclaim the Dream”.

The uglier the prom dress the better. Ruffled shirts and blue
tuxedos strongly encouraged. Taffeta and poof sleeves welcomed.
I’m still trying to find a venue so if anyone has any suggestions
please let me know.

And just to get you guys TOTALLY PSYCHED ...

Dreaming of spiral perms and penny loafers,

Wednesday, May 16, 2007

Mother's Day

I was at City of Hope today. My blood counts are holding but we discovered a new complication. I have practically no hormones in my body, minimal enzymes, probably no endorphin-type guys either. My pituitary gland may be completely shut down and my thyroid might be next. So I'm up for another battery of tests very soon.

This explains the dry skin, the fact that I have no hunger or thirst reflex, why my mood has been lower than usual, why I feel dull and yet over-sensitive, and why Hugh Jackman just doesn't do it for me anymore. No wonder I haven’t been myself lately. Again, things might look okay on the surface, but it will take some time for my whole-self to completely heal. I trust that everything will come back into balance eventually. Our bodies are miraculously self-healing. When you cut yourself, you don’t have to worry and focus and meditate on the cut healing itself. You just KNOW it will, and you go on with your life and *voila* one day you look and the cut is healed. You didn’t see it or make it happen. It just happened. The same principles are at work even with the most traumatic of wounds. Our bodies are infinitely intelligent and incredibly resilient. All we need is time.

I had a very tearful, (in a good way) Mother's Day. With my Mom in New York, we talked on the phone for over an hour. We recounted last year and how we both tried to be strong for each other, as we desperately chased away the fear that this would be our last time together. There was so much love and support coming from everywhere, but it was my Mother who was in the trenches with me, who sacrificed so much just to stand by my side, who drove me insane with her worry but then brought me back to sanity with her faith and inner strength. To think that this was the FOURTH time she had to go through the nightmare of watching a child suffer through cancer; twice with me, once with my brother and again with my sister. And yet she remains as passionate about life, as trusting in God, as light in her heart, as mischievous as a little girl and as beautiful in her soul as on the day she married my father. (They just celebrated their 38th Wedding Anniversary.) She is my inspiration.


Tuesday, May 8, 2007

Life instead of Cancer

It’s been an emotional week, good and bad: Strange, wonderful, sad, beautiful.

GOOD NEWS – I had follow-up visits with doctors this week. City of Hope said (and I quote verbatim) “Considering what you were up against, you are doing EXTREMELY well”. It’s true. The GVH on my skin is still there but thankfully diminishing. My blood counts are steadily rising and no new complications have come up. My oncologist at the Angeles Clinic said, “Over the next three months, start shedding the ‘cancer patient’ and start preparing for the rest of your life.” Music to my ears. “The rest of your life.” My God, I actually have the rest of my life to live. Okay, there I go tearing up again.

It’s been 10 months since Day 0 of the transplant but I’ve only been out of the hospital for 4 months. Even if I get to have fun every once and awhile, I’m STILL recovering and have to wait for my body to heal and… well… I feel like I’m sitting on the bench, turning to God and pleading “Put me in the game, coach!”

Last weekend I dubbed the “Bone Marrow Extravaganza weekend”. Friday was the BMT reunion at City of Hope. I was singled out and honored among the thousands of patients there and was humbled by the shouts and applause as I stood and waved. Saturday I had the honor of being the guest speaker at Asians for Miracle Matches’ annual luncheon. It felt so good to be able to stand up at the podium one year later and thank the organization, staff and volunteers who made a difference in my life and continue to make a difference in the lives of others. I ended up going off the paper and spoke from my heart. Sunday I attended my first marrow drive since the BMT. My friend Barak funded the entire drive and signed 80 more people onto the registry at the Israeli Independence Day Festival with the help of City of Hope and other volunteers. Being there to answer questions and spread the word as a BMT success story, I felt like I had come full circle. It was an awesome place to be.

Now for the fun stuff. Last week I had a “cameo” in the Gilmore Girls episode “Lorelei Lorelei”. I was visiting the set when I was invited to jump in a scene and *voila* there’s the camera tracking me across the Sookie’s kitchen. I think I had more fun doing it than watching it. Also, May 18 starts a new show on TLC called “Making the Cut”. As some of you know, I was a hair model for Vidal Sassoon until I lost all my hair. I met the show’s director while visiting the salon and before the end of the day, they put me in front of the camera for an interview. My story of hair regained will be used in a segment in one of the episodes. My guess is that I will be in the “Giving Back” episode airing June 8. Finally, I will be fulfilling my fantasy to be a runway model at the Vintage Fashion Expo this weekend at the Santa Monica Civic Auditorium. It’s so cool to think that less than a year later I am literally strutting my stuff.

This is all a wonderful transition and something I have been looking forward to for a long time: To write about life instead of cancer.

Much love,