And What Followed...

Thursday, June 29, 2006

Message from Sharyn - Donating platelets is easy!

If you can sit in a recliner for an hour and watch television - you can donate platelets.

Donating platelets is so EASY!

I had a great experience donating platelets for Christine today. Everyone at City of Hope is extremely nice. After a few minutes of paperwork they test your blood for an iron level and to estimate if you can donate 1 or 2 units. There is only (1) one, very small needle that goes in (1) one arm (just like any blood sample you've given at the doctor's office).

Technology has figured out a way for the needle to connect to a couple of tubes. One takes blood out, it goes into the machine and removes the platelets. Then another tube sends the rest of the blood back into the same arm. This process alternates every few minutes till they have enough platelets. Really amazing. It took about 2.5 hours from when I walked in to when I left and that was for 2 units!

Anyone can do it. You don't have to have a matching blood type. Everyone has platelets that can help Christine, and she is going to need them. Platelets are only good for 5 days. Yep. 5 days.

Christine is going to need platelet transfusions before, during and after her transplant over the next 100 days. So don't worry if you have Fourth of July plans. You can still be a HUGE help to Christine by donating sometime over the next month or so.

Another thing about donating platelets is that with the blood returned to you, so you can donate more often. Every two weeks to be exact.

Best thing about it, is you can swing by and say "hi" to Christine afterwards. The true reward is seeing that smile.

Remember, if you can sit and watch tv for an hour - you can donate platelets.

Big thanks to Jocelyn T for coordinating donors with City of Hope. All I had to do was give her my name and number and a person from City of Hope person contacted me days later to set up an appointment at my convenience.

Call Jocelyn now and set up your appointment today!

Sharyn

Message from Janice - Visit with Christine

I spent the day with Christine today and she was in good spirits. Her mom and brother had just left for the airport as he was heading home. He will be back when she goes into her 100 days of rebirth.

This is the time when her new bone marrow will be growing. She was in great spirits. I had a good laugh over her imitation of the transplant coordinator nurse. I laughed but deep down I was thinking that this person should not be dealing with transplant patients. Compassion was a class I think the coordinator missed in nursing school.

Christine tried to order her lunch much like Meg Ryan would do in "When Harry Met Sally" I'll have the chicken strips but I want the sauce on the side and I want two pack of mayo, 1 pack of mustard and 1 pack of honey, Oh can't have honey, well give me ranch dressing then. I'll have the baked potato and two pats of butter. When the lunch came she had 1 pack of ranch dressing two packs of mustard, two baked potatoes and 1 pat of butter. Another good laugh. I noticed there is a new hospital but the menu is still the same from when I was in for my transplant. She still had a good sense of humor about it.

We took a walk and then she settled in for a nap. She is doing great and is in good spirits. I left her with a movie that is totally silly and CD of spa music to relax by and some mindless magazines to read the latest on who is sleeping with whom in Hollywood. She knows what is ahead and I can't think of better medicine than to see her friends while they can still take a walk in the hall with her, share laughter with her and let her know you are thinking of her.

Janice

Message from Doug - T-minus 7 days to transplant

Hello All,

Just wanted to give a heads up on Christine.

I went to see her today to drop off some DVD's. When I went into her room, she was making a butterfly out of construction paper to decorate her door. Her creativity knows no limits. Her entire bed was covered with scraps of construction paper, and it reminded me of third grade. She kept her bed busy with stuff so that she wouldn't be sitting on it. She wants to move around as much as she can before the transplant on July 5th.

She looked strong and bright and indefeatable. Her brother Marc and her mom were there keeping her company. It was good seeing them too. Marc was very impressed with her I.V. pump. I think he said it was the xbox 360 of I.V. pumps, compared to the "Pong" I.V's he has to work with on the east coast. It was good to see that she was surrounded by the state of the art.

During the time chilling and goofing around, she had to rinse her mouth with some medicine. The rinse happens every 2 hours and after every meal to prevent mouth infections. She also has to eat her food within the hour otherwise she has to trash it.

We went walking around the floor for excercise, and I got to shake hands with Dr. Forman, the resident guru who is a god among cancer doctors. He'll be the one in charge of her transplant. I felt better knowing that she was going to be in the best hands in the field. After a few laps, I helped her make some flowers to keep her butterfly company. She got introspective and thought it was funny that we were making flowers out of construction paper, in the middle of a cancer ward. I think when she creates, it feeds her soul and is a medicine in itself. I like to
think that just being there and spending some time with her was strong medicine. It gives reason to think of the present and live in the moment. I practiced my popping and locking moves for her. Something about wearing gloves makes me want to do the robot.

There is a dry erase board in the front of her room. On it was written "Day -7". Its a count down to Day 0, which is July 5th. After that, she'll be in her room for a 100 days. She won't be able to move around much and will be basically bedridden. She won't be able to have people in her room for a hundred days. At least, that is to my understanding. I can't imagine what it would be like to be in a room for a hundred days, let alone in bed for that amount of time. She'll need visitors to drop by and say hello throughout her treatment, but if you want to see her and spend time with her in the same space, it would be best to do so before July 7th. So go see her now! And bring something to cheer up her room. Something that will make her think about you when she sees it. Wall decorations, posters, pics. Frankly, I think she needs
a lot of wall decorations.

Doug

Wednesday, June 28, 2006

Don't Give Up - Little Jacob

Hi everyone. I posted this on the savechristine.com website the other day and have cut/paste it here. (see below)

Real quick about visiting: NOW is the good time. You can come into the room provided you wash hands and wear mask and gloves. Next Wednesday, the day of the transplant, I will be in a bad state. It is the two to four weeks following the transplant that will be the most critical. I may be in and out of conciousness but a familiar face is always welcome. If things go well, 4-6 weeks after the transplant, I can start having visitors inside the room again. Things change day by day. The best thing is to read the posts or call ahead.

xo,
Christine

-------------
www.savechristine.com

It is Tuesday Night, June 27, 2006. Last week I got the final word. We could not wait any longer for a miracle match. Time had run out. The window was closing fast. I needed to have my transplant NOW, but even with all our efforts and hard work, we never did find a miracle match. The closest potential the doctors could find was a partial donor with mismatches. And he was not even in the National Registry. He literally lives on the other side of the world. Donating marrow is a very simple procedure with only slight soreness for the donor. However, for the patient, a bone marrow transplant is a devastating procedure, very risky and full of complications. Using an unrelated donor with mismatches is a tremendous gamble beyond the already known risks. Unfortunately if that is the only option you are given to live, you have to take it.

I am now in the hospital being conditioned for this high-risk transplant, my only hope for survival. Yesterday they drained 60% of my B+ blood and replaced it with O+ blood. The donor's blood type is O+. In Bone Marrow Transplantation, blood type does not matter because the patient releases her own blood type and adopts the donor's blood type in its place. I am now B- but by next week I will be O+. Replacing the blood ahead of time makes the transition a little easier and the transplant more likely to succeed.

I started chemotherapy last night and will continue throughout the week. My blood counts will probably be down to zero by this Monday. Saturday I will get a major dose of Melphalan, a heavy-duty chemotherapy to sledgehammer the cancer with one last big chemo wallop. That will be followed by a few days of anti-rejection transplant drugs. If things are well, I undergo the bone marrow transplant on Wednesday, July 5. The next three weeks will be the most critical; as we pray and hope that the marrow grafts and healthy new blood cells replace the unhealthy ones. I pray that my body does not reject the donor's stem cells (marrow) and that his stem cells (marrow) do not reject my body. If things stay under control, I will remain in the hospital for 100+ days. More than half of those days will be spent in isolation.

I titled this day's journal "Don't Give Up", not for me, but for everyone. For everyone who has coordinated a marrow drive, put up posters, knocked on doors and drove across town to volunteer. For every person who has sent out an e-mail, handed out flyers, stuffed envelopes and gave up so much of their own time to make a difference. To each person who has donated to the foundation, signed up on "Christine's Army", signed up on the marrow registry and persuaded their family and friends to join as well.

I say
"Don't give up" because even if it may be too late for me to find my miracle match, it is not too late for others. There are still not enough Filipinos and minorities on the registry. Our job is not yet done. Visit aadp.org and asianmarrow.org to see the countless stories of other Asians desperately searching for their miracle match. Signing people up on the marrow registry should become regular community practice like bake sales and blood drives. It does not matter what your minority or ethnic background is. Make it a part of you. Deep within, each one of us has the power to save a life. But your potential will never be tapped unless you sign up!

Martin Luther King once had a dream that children of every nation would walk together someday in peace. I have a dream that cancer patients of every ethnicity will one day have an equal chance to walk together in health. But this revolution doesn't happen with walks on Washington or sit-down protests. This dream starts with a phone call or a mouse click. And it can only happen with you. It is you yourself who decides whether to make a difference or to walk away. Sign up on the registry. A Patient's face on a website may look calm and distant, but in reality she is desperately fearful of never finding a match. She is dying, and searching for the one person who holds her key to life. And the only person who can give that life, who is the key, will forever be lost until he/she signs up in the marrow registry.

I wrote this in my journal last May:

Today we signed 108 people onto the Registry at St. Denis Catholic Church in Diamond Bar. I met Peter and his son, Jacob, who just turned two and is battling a rare blood disease called XLP. He is in need of a donor. Little Jacob was the sweetest angel of a boy. His smile evidenced the innocence of any knowledge of his own health condition.

His
father, dressed all in black with a teardrop tattooed near his eye, stood like a tough East L.A. gangster, but when we talked his spirit was fatherly and soft. His voice was calm with the serenity of acceptance. The profound love he had for his son made the air around him thick with emotion. Most children with XLP do not survive beyond sixteen months. Little Jacob has beaten the odds and outlived expectations. His father, Peter, watched his son climb chairs, eat Hershey Kisses and run laughing and squealing across the church courtyard.

"I believe that God trusted me with his little angel" Peter said "to
take care of him while he is here to accomplish his heavenly mission on earth. I believe that Jacob is here to save other people's lives by signing up more Hispanics on to the marrow Registry."

This father's devotion and love for this tiny little soul was thunderous and echoed the
threatening storm clouds above. Jacob chased a foam baseball with his friend, Mateo. He was happy and completely unaware of the watchful eyes of this great man whom God chose to be his father, the one man strong enough to carry this blessed, yet heavy weight.

You may be the miracle little Jacob is searching for.


Don't give up. This is just the beginning. The fight is not over yet.

Much Much Love,
Christine

Update from Maxine - Second Chemo

Dear Friends,
Christine asked me to call regularly so I talked with her mother, Lu, early this morning. She said Christine is doing well. Yesterday, she went through the second chemo and took it well. Her brother Marc stayed with her overnight as only one person can stay at a time. Being super-careful about infections right now, visiting is through the window on the phone for now.
Marc and Lu decorated her room with beautiful calendar photos of Route 1 going north along the California coast. This is one of Christine's favorite places, so that is very happy for her!..
Thanks for all your continued hope and love,
Maxine in Seattle

Tuesday, June 27, 2006

Update from Maxine - Transplant begins

Dear Family and Friends of Christine,
I talked with Christine last night and she asked me to give an update. She only has dial up so can't do emails now.
Yesterday, June 26th, she had a long slow transfusion, as she says "Costco-sized" transfusion of O positive blood which went very smoothly. Actually, she slept through most of it! Her brother Marc decided to donate platelets for his sister at the same time so they were lying in adjacent rooms. Marc had such a good platelet count, he was able to give two units instead of usual one! There was a window between their two rooms so when Christine opened her eyes, she could see Marc and they waved at each other. It was very good for both of them!
At 4 pm she was admitted to the Bone Marrow Transplant floor of City of Hope and when we talked, she sounded great and was eating dinner! Chemo starts tonight for about seven days to "erase" the white cells and prepare for the new stem cells from the donor. The actual bone marrow transplant is scheduled for next Wednesday, July 5th.
According to Dr Nade, Christine is a high risk patient. So Christine is asking for LOTS of prayers, especially over the next two weeks!. She has had such good care, including Dr. Effie Petersdorf, the Fred Hutichinson doctor in Seattle who gave the second opinion. Come to find out, she is one of the TOP people in the field of HLA research and know-how and she agreed that Christine needs this transplant now. Coincidentally, she and Dr. Nade have been personal friends for over twenty years! It's a small world and one with many good people giving the best there is for Christine!
Visiting will be possible in the next 5 days or so, but no one with sniffles, etc etc. and you get to wear the lovely gown and mask! Check out her last email with her wish-list for music, pictures and whimsical items for her room that will make her smile! We love that beautiful, thousand-watt smile of hers!
I also talked with Lu, her wonderful mom and she has a comfortable place to stay which is near the hospital. LOTS of prayers to all the family, nurses and doctors who are helping Christine create another miracle!

Thank you all for your prayers.

Gratefully,
Maxine in Seattle

Monday, June 26, 2006

Message from Kurt - Odds and Percentages

Kurt gave me permission to share this message with you guys. I thought it was awesome.
-CP
__________

Hey Christine,

Just wanted to say how great it was to see you today. Also, I re-read your email from this
morning about odds and percentages, and just wanted to share a few thoughts that occurred to me on the drive home:

Fewer than 15% of all applicants get into USC film school. Far worse odds than you face
now. You beat that.

A miniscule percentage of the people who produce a low-budget documentary get
picked up for theatrical distribution. Immensely worse odds than you face now. You
beat that.

The odds of becoming a successful, working, produced Hollywood screenwriter? Probably
less than 1% of the people who want to do it. Bokenkamp's done it. The odds of becoming a Nicholl Fellow? Less than 1 in 1500. I've done it.

We're a pretty amazing group of people, and we've all been beating far worse odds than
this on a regular basis; you're going to be fine. Jon, Zahir and I were talking about this in
the car on the way home: we just know you're going to be fine. We don't know how we know, it's just a certainty we all feel separately. Just wanted you to know that.

__________

For fun I also thought:
Chances of selling your very FIRST spec script? Alex
Chances of starting your own company in your garage and have it turn into a million- dollar business? Al
Chances of marrying a controversial yet lovable actor named Robert? Susan :)
Chances of becoming a big cheese exec at Disney? Jason
Chances of starting and owning a super awesome and successful website? Dan
Chances of having your pilot picked up? Emily
Chances of being forever known in the Star Trek Encyclopedia as "Dillard"? Mike
Chances of supervising multi-million dollar movie digital effects departments? Eric
Chances of being nominated for an Oscar? Lance, Pia (Ooh, I know I am forgetting a few!)
Chances of being THE guy who gets to yell "You Idiot!" at Tom Cruise in Mission Impossible 2? Tony
Chances of having your play put up at the Public in NYC? Julia
Chances of winning multiple Emmys before the age of 30? Sharyn
Chances of retiring before the age of 30? Mark
Chances of travelling around the world performing lead roles in Broadway shows? John
Chances of having a fight scene with Jennifer Garner on Alias? Vicky
Chances of getting your very FIRST book published? Steve
Chances of your very FIRST book getting on the Best Seller list? Rory
Chances of having the script you wrote attract two A-list stars AND having it produced
AND distributed? Katie AND Jon (and I'm sure there is more... help me with this...)
Chances of doing what you love and pursuing your dream? All of us!

Live passionately,
: ) CP

Sunday, June 25, 2006

The Night before the Big day

It is late Sunday night. Everything is packed and ready to go. None of us can sleep. Tomorrow is the big day. The transplant process begins with the draining of the B- blood from my body to be replaced by O+ blood. Starting at 11am tomorrow my body will never be the same. It's brings a sort of disquiet excitement.

The Saturday BBQ was lovely. A beautiful day. The Open House became a party and ended
up going much longer than expected. The CNN crew was polite and unobtrusive. They were very moved by the story and by the end it almost felt like they were part of our gang. My brother Marc had a great time meeting everyone. Carole showed us how to do healing touch when coming to visit. Den showed up with a shaved head in solidarity with my newly freed scalp. Steve handed out "F--k Cancer" bracelets. And Judy and Eric handed out endless glasses of Sangria and were impeccable hosts. It was good to have that time with everyone. To be able to at least take a few precious important moments to hit the pause button, and connect and hold one another's hands before the big leap.

Because of so much happening so fast, I realize I left out a few details that I need help with. It's much too late in the night for me to be more graceful and eloquent about it but here is the help I need right now. It seems silly at this point but:

1) Help to pick up my mail once a week
2) Help to water my plants twice a week
3) And a request. There will be consecutive days when I will be unable to send updates to this YAHOO group. What I am asking is that we make a GROUP effort to keep everyone posted on the latest. On the most critical days, the situation will be changing by the hour. If you happen to speak to my mother, myself, or whomever, and you find out "what is going on" please share it with the group.

Some have asked what they can send since they can't send fresh pretty flowers: You all know I LOVE music and anything from Andrea Bocelli to Riley K, to your own mixes would make my day. Also let's see� prints from artists like Klimt, Bouguereau, Degas, Monet, Sisley,Van Gogh, Redon, or Modigliani to brighten the dull hospital room. Anything whimsical that you think would make me laugh. Or make me go "ooooh! Aaaah!", like a hanging mobile or chimes. Books on CD. A hip cool scarf for my head. Photographs of us. Art supplies. Pretty girly things. Colorful tees and cute socks. Stuff like that.

Also, please don't think that when you visit, that you can only see me "through the window". That will happen on only the most critical days (most likely days 7-21) after my admission. Most days you WILL be allowed in the room, of course you will have to wear a protective gown, mask and gloves. Think of it as an adventure. And call first. This first week is actually a good time to stop by, especially for those awesome folks who are donating blood and platelets!

Tonight Michelle came over and helped me write an extensive wish list for a cure and full recovery. We prayed for every wish to come true. Soon after, no kidding, the skies broke open in thunder and lightning and a short heavy rain washed down from the sky. And just as soon as it started, it was over.

I wish I had some wise words to impart before going in tomorrow. There is not much to say at this point. Just know that I am sending love in all directions tonight and praying that in 100 days we will be having another BBQ to celebrate life.

Much love,
Christine

Friday, June 23, 2006

Surreal Seattle - The Transplant must go on

Hi all,

It's been a crazy 48 hours.

Last night I was rushed into the Emergency Room at the University of Washington with a
102-degree fever, nauseated and in pain. Seeing that I was a cancer patient, the nurses
put me in a separate room with a glass wall between the waiting room and me. This was a
good thing because it was full of drunk and bloodied fraternity boys, as well as sorority
girls having panic attacks, from a party that went bad.

As I sat in triage, I got a text msg from Den that I was about to be on Nightline. I looked
up and suddenly there was my face on every television monitor. It was very surreal. The
irony is that I couldn't watch it because I had to be quarantined from the infested waiting
room and I was so sick that the nurses quickly scuttled me into an ER room. No worries,
I'm recovering now and I'll catch the video later. I heard ABC did a good job.

The last couple days have been difficult. The statistics that Seattle gave me were tailored
specifically to my case and the numbers were even worse. Less than 50% chance of being
alive six months from now. Less than 30% chance of being alive a year from now. These
were hard numbers based on actual cases, not some random abstract idea from a doctor's
head. The mismatches are a real problem, especially the "C", which results in increased
chance of rejection.

The first thing they will do when I get admitted on Monday is DRAIN me of 60% of my
blood and then replace it with O+ blood (the blood type of the donor). Then they will
immediately start me on the rigorous chemotherapy, which will bring my cell counts down
to zero. 7-10 days later, when I am at my nadir, they will infuse me with the donor's
marrow. This is the most critical point of the transplant process. After that day, it is a long and precarious wait to see if the marrow will graft, to stem off any graft-versus-host disease and ward off any potentially fatal bacterial or viral infection. If things go well, after 4-6 weeks I will be moved to another part of the hospital grounds called "the village". I will not be allowed to leave the hospital campus for a minimum of 100 days. Music CDs, pretty calendars and posters, and buddies for board game nights are all welcome.

I'm praying for not only a cure, but a life free of any acute or long-term complications from the transplant procedure. I've learned that less than 20% of transplant survivors are able to live without serious complications or secondary diseases. One social worker recently said, "You need to be prepared for the possibility of being on permanent disability". Not this girl.

To give you an idea of how crazy this whole thing transplant is: The partial donor is male. HIS marrow and eventually HIS blood and chromosomes will be running through MY bones and veins. THUS, if I accidentally cut myself, the skin that gets cut will have the XX chromosome, but I will BLEED the XY chromosome. My body will be female but I will bleed male blood. (Insert Twilight Zone music here) NOTE to my screenwriter friends: Yeah, I thought this would make a great spec script for CSI or some other crime investigation show but I heard it has already been done before.

So it appears that CNN will be at the Open House tomorrow. Looking forward to seeing all
of you then!

Much Love,
Christine

Thursday, June 22, 2006

A New Version of the PSA - Swabs!

HERE is the new, improved version of the PSA!
No more finger pricks! It's all about the mouth swabs now!

Update from Colleen - Hutchinson's Opinion

Christine is resting and asked us to write an update about her meeting at Fred Hutchinson Cancer Research Center in Seattle.

We accompanied Christine to Fred Hutchinson where she met with a wonderful doctor who had taken the time to read Christine’s large medical file before talking with her. The doctor gave Christine a detailed explanation about the care and treatment she would receive at Fred Hutchinson.

The turning point in the conversation was when the doctor said they would have to start from zero and would need to do an entire new work-up on Christine. Therefore, the transplant could not be done at Fred Hutchinson until August.

That is too long to wait because the key to a successful transplant is to do the transplant while the lymphoma is most stable.

Because Christine just went through a series of chemo treatments and the lymphoma shrunk, now is best time to do the transplant. Right now, Christine’s liver and kidney functions are both very strong and that will increase her body’s ability to accept the new marrow. If she waited and had more chemo, before the transplant, that could change.

The doctor confirmed that Christine needs to have the transplant ASAP. She said the procedures/protocol at Fred Hutchinson and City of Hope is very similar. Plus, she has known the doctors at City of Hope for 20 plus years and has great admiration for them and their work. The doctor agrees with City of Hope doctors’ treatment plan and with using the partial match donor that has been located.

Christine will be flying back to LA on Friday and will probably begin the transplant procedure on Monday, June 26.

The Seattle Team
Colleen and Maxine

Christine on ABC-Nightline! See Video Here

I had the honor of being interviewed by Jon Donvan at ABC Nightline. Here is the piece that aired Thursday, June 22, 2006.


Tuesday, June 20, 2006

Sunshiny lemonade - Open House

This was my horoscope for today. I love that my situation was described as a "bummer":

"You'll be well loved today for your inspiring attitude of peaceful acceptance. Things that are way beyond your control might be bumming you out especially hard, but try not to get discouraged: There is always hope. Take a brighter, more peaceful
approach and talk things out with the people around you who feel the same. Together, you can all get on a happier topic and turn even the sourest lemons into delicious, sunshiny lemonade. There's an inspiring force deep inside of you, and it can only be revealed through a trial."

-------------

Thank you, everyone, for all the offerings of help. Julia will be accompanying me to City of Hope tomorrow (Tuesday) for my Bone Marrow Aspiration Procedure (a surgical test to make sure there is no cancer in the bones) and Jackie will drive me to the 4pm doc appt. Also, thank you to all the generous hearts offering up your homes for the Open House. Together, we are an incredible group of not only beautiful and talented, but also authentic and caring people.

With that said, the Open House will be held this Saturday, June 24th from 11:30am to 4:30pm at Judy & Eric's house in West LA. It will be a very casual, small and intimate backyard BBQ. It won't be like the usual blow-out parties I used to be known
for, just a lovely afternoon where friends can come and go as they please and time will be well spent connecting with one another without any fa├žade or pretense. Expect freshly grilled burgers & sausages, soda & beer, veggie platters and chips. In the backyard, there is a lovely hammock presided over by a lemon tree and lots of rosemary, lavender and roses.

Again, unless a better match is found in the next few days or if the doctors in Seattle (Thursday) recommend something completely different, I will be admitted into the transplant ward this Monday, the 26th. The donor with the mismatches remains our only hope. Enough has been said about statistics. I'm tired of hearing about "the odds" from doctors. My friend Taylor said that if this were Texas Hold'Em, I'd be a Four to the Flush after the Flop. And when that happens, you GOTTA go for it! My friend Steve says I may be the one to get tackled, but the football is in my hands and the rest of the team is running and blocking for me. I just love how men talk: Enough sap, let's roll.

I have to admit. I am scared. I'm not going to inflate myself with false bravado or distract everyone with meaningless platitudes. The last six months has tested every ounce of strength and we have all been working so hard and not getting any sleep, trying to make this miracle happen. When I go into that transplant ward, I'm going to be thinking about you guys and I will to do my darnedest, not give up, and kick some motherfreakin' ass.

I'm going to need you all to help me, because I can't do this alone. The next few weeks will be the most critical. So whether you are a coach, a player, a cheerleader or the waterboy, we need to come together as a team and maybe, just maybe, we can
manifest our own miracle. This is it.

Hope to spread the love on Saturday. I look forward to sharing some sunshine and lemonade.

much love,
Christine

Friday, June 16, 2006

FINALLY, some good news!

My doctor called with the results of the last PET/CAT scans. They looked good!

It appears the chemo worked very well! One of the tumours is "completely resolved". The other two
shrank to 1/3 of their original size. I was jumping up and down on my bed so much that I slipped and landed on my bum.

However, even with the great news, it is still necessary for the transplant to happen. Though the amount of cancer activity has drastically reduced on the PET scan (yay!), there is still some uptake (waah!). My doctor says that without transplant, I will
most likely have another relapse very soon and that I really don't have any fighting options left in terms of chemotherapy. But the good news is that if I do survive the transplant, I have a better chance at a longer life since the tumors have shrunk so much.

I've spoken about going the alternative route with a Chinese acupuncturist/herbalist, an ayurvedic doctor, a naturopath and a homeopath. All of them said that with my diagnosis/prognosis, alternative treatments won't help anymore. The only thing they can do for me is to strengthen body and mind in preparation for the transplant and to help in the recovery after.

Even if I am going to Seattle for a second opinion, City of Hope is still moving forward with the transplant date. (They have been forewarned, however that I can still change my mind.)

So unless a perfect match is found in the next week, it appears I will be admitted on the 26th. I will get high-dose chemotherapy that first week, which will kill my marrow and my body will start dying. When I hit nadir about 7-10 days later, they will infuse marrow (from the donor with the mismatches) into me. We will know within a few days of the transplant whether or not the marrow grafts.

If it does graft, I will remain in the hospital for another 3-6 weeks as my body slowly rebuilds from zero. During this time, I will be in a "bubble" and visitors will probably not be allowed in the room. But there is an inside window, and if I am awake and coherent, you can call me on the phone and we can speak to each other that way. Sort of like visiting someone at prison.

Until then, it's more appointments and help needed. I need a friend for this Tuesday, June 20, someone to drive me to City of Hope for a Bone Marrow aspiration. I will be "going under" with anesthesia for the procedure. We have to leave my place by 8am. If things go smoothly, we will likely be home by 2pm. Later that same day I have another appointment in West LA. I will probably be sore from the procedure and will need help again with another ride. The appointment is at 4pm and will take about one hour. Please let me know if you can help.

It's late and I have to go to bed. I will send more info soon!

Stay well and sleep tight,
Christine

Thursday, June 15, 2006

Update from Wonsun C - Preparing for the Transplant

Dear family and friends of Christine,

Yesterday, Wednesday June 14, 2006, I accompanied Christine to the City of Hope for her daylong testing in preparation for her June 26th transplant procedure. Pulminary, cardio, vitals (blood pressure), etc. were normal, her examiners said. Her heart is looking even better than before the chemo!

Her last stop was with the nutritionist who reoriented her to the 100-day post-transplant diet. Mainly she needs to control bacterial intake - staying from raw food items, water from certain sources and even our homemade goodies if delivery time exceeds one hour since food collects bacteria in transport.

Throughout the day, Christine spoke about her deep appreciation for all of the support that is around her. She thanked me for simply listening to her and being there with her. I told her that we just need to get her better. Eyes alert and with a small smile, she nodded at me - true to form - showing me the Christine I have always known: A person who remains determined to make it.

Next Wednesday, Christine will be going to a 2-night 3-day trip to Seattle for a second opinion.

Here I end with a familiar request: Please pray for Christine and her family. Anytime, every time. Christine is joined with us as our sister in humanity and when we pray for her, we are doing what is only natural: thinking about her while driving to and from work, over a cup of latte, when we get writer's block and can't get through a scene, etc. All of this is prayer. Christine and her family will feel the power of your prayers even from great distances, benefitting in ways we cannot measure or predict.

I believe that whether one believes in God totally or sometimes or never, is irrelevant. It is not that we love God that but
that God loves us - it is not that we choose God but that God chooses us. The framework for our oneness is already there regardless of our humanly opinions. We just have to be willing - for Christine's sake.

- Wonsun Choi

Friday, June 9, 2006

the Difficult news

Dear Friends,

I can't believe I'm actually writing this. It just feels so unreal. Sorry it took so long for me to get over the shock.

Here is what happened on Monday:

In May, the last I was at City of Hope, I was told that my next appointment would be a simple follow-up visit, with blood work, a possible injection and on to schedule my next PET/CAT scan to restage me and figure out if I should do another round of chemo.

Instead, on Monday, Dr. Nade marched in with a Transplant nurse and told me that we couldn't wait any longer for a true match. That I needed to go into transplant immediately with the donor that has the mismatches. That the longer I waited, the less of a chance I would have of survival. Suddenly she was pointing to a calendar and saying I was going to be admitted by next Tuesday for chemo conditioning and transplant by the 28th.

Then a packet of papers got shoved in front of my face… release forms, consent forms, liability bullyragging, a bunch of lines for me to sign. Then the transplant nurse handed me a bag of stuff I needed to take home as part of all the tests I was going to be scheduled for over the next week, pulmonary, blood, urine, EKG/EKO, PET, CAT, Chest X-Ray etc. My head was spinning.: No more drives. It's too late. We have to go into transplant NOW.

Reality hit hard.

Everything suddenly came down, came to a head, became accelerated, became real, happening so fast. I thought I was going to have a blood test and go home but instead there I was sitting on the edge of an exam table, being dictated my schedule for the next and possibly last few weeks of my life.

So here is the hard news. Dr. Nade said that the mismatch means increased morbidity, increased chance of (possibly fatal) infections, increased short and long term complications, increased Graft vs. Host disease and increased chance that the
marrow won't even graft. There is a major mismatch at "C" and another mismatch at "B". The odds given were 30% chance of surviving the actual procedure and 50% chance of being alive and well a year from today. I hate statistics.

I am planning to rush up to Fred Hutchison Cancer Center in Seattle for a second opinion. (Thank you Mike for the First Class ticket!) At the very least to give me some peace of mind that this is the best thing to do given the unfortunate circumstances. Dr. Nade said I would quickly succumb to the lymphoma if we don't do the transplant now, but I refused to be admitted so soon. I need time to get my body and mind prepared. However, unless something happens to change things, it appears I will be admitted for the transplant procedure the last week of June.

If you still are planning marrow drives or e-mailing friends, please do so in my honor. There are other patients who are still desperately searching for their match and it is not too late for them…. yet. Also, you never know… maybe something miraculous can still happen…

Whatever the outcome, I love you guys and just know that we together have made such a huge difference in the world and in the lives of so many others.

Love,
Christine

P.S. I would really love to be able to see each and everyone of you. Spend time and talk and just be. Unfortunately with this sudden change in situation, with all the immediate tests, doctor appointments etc, time is crunched and I just don't have the
luxury. Therefore, I plan to have an open house soon. A day when friends can stop by and we can hug and share and forget about statistics and just enjoy life. I'll keep you all posted. xo

Wednesday, June 7, 2006

Message from Janice - Comforting Christine

Time with a friend - I came to comfort a friend in need today. She is frustrated with the obstacles she has encountered, frightened that she may not be able to fulfill her dreams, and tired of the endless discussion about her current state of health.

You know how people say that you can't know how someone feels until you have stood in their shoes. I have been there. The person I am talking about is Christine, a person we all know and love. I had the fortune/misfortune to meet Christine when we were both at City of Hope for our transplants, 4 years ago. At that time, I had Christine comforting me as I stood at a critical point in my fight to survive my battle with Leukemia. I am there today because of the blessings of God, the miracles of
medicine, and the love and support of my husband, son, family and friends.

Now Christine is facing this same battle again and is having many of the same feelings I have had. She is frustrated with
her search for the optimal donor, her physical state including her lack of hair, fatigue, and fear for what the future holds for her. She will have some battles ahead of her physically and emotionally. There will be days where she wants to be surrounded by friends and days where she needs to address her feelings in her own way.

I know it is hard for friends and family who want to spend time with her to understand this. She has asked me to try and share with all of you that she treasures you all and owes her life to all of you who have given your time and love to help her. The best of friends will not ask too much about the details of her treatment, prognosis and statistics or what she is feeling about it all. Christine wants to focus on life. She wants to know what you are doing. She needs the distraction and your love.

She promises to share her updates on the group site. She is searching for hope and inspiration from you all. Talk about your future with her and how she fits into that part of your life. That is the best medicine for her. She said to me today that she feels God's purpose for her is to love and be loved.

I feel he has great plans for her. There are movies still to be made and poems to write.

Love you Christine, Janice

Sunday, June 4, 2006

A Much Lived Life

Hi everyone. I actually wrote this in my journal yesterday. I hesitated at first to share it, but after I completed the second half, I felt that I should. It's a beautiful day out today. I hope you all get to take advantage of it. -CP

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This morning I woke up with despair looming over me. Fear circled round my bed. Death reached out and grabbed my heart with thick icy fingers. I closed my eyes and breathed deeply. "I am still alive" I thought, "You don't have me yet".

I took another deep breath and focused on light and love. I was alone. I thought of God. Another breath. "Love" and breathed deep again. A warm fire emerged from deep within my heart. A gold light enveloped me. "I am alive." Fear, Death and Despair slowly transmuted into Faith, Hope and Trust. The experience was almost alchemic. Perhaps this is what is meant by the Philosopher's Stone. By prayer, being aware of the preciousness of life and allowing love to flow, you can turn lead into gold.

I felt safe at that moment. And then I gently wondered, how many tomorrows do I have left?

Mom went back home to New York to rest and recharge her batteries. It has been so hard for her and I am glad that she is getting a bit of a respite. Monday, is a day of doctor appointments and I will get an update on the search for a donor. I will likely have scans in a week or so to see if the current chemotherapy is working… possibly buying a little more time.

I spend each day in gratitude, in quiet contemplation. Conversations are open and run deep. I savor the taste of a fresh crisp apple. I breathe in the pungent aroma of jasmine in the early morning. A tree is at its most wondrous when you walk underneath it and look up. The faces of my friends are so beautiful. Hugs are held longer and tighter. The sky looks different these days. I am reminded that the sun always shines even when you can't see it.

Very soon the dice are going to roll, weighted with the odds against us. I am still praying for a miracle. When facing hardship and/or death, you can try to run away or you can face it. Live not in denial, but in defiance. I think of Stephen Hawking and what he has accomplished despite the ravaged body he was given. Can you imagine the challenges of his everyday? And yet he inspires us by how he lives DESPITE them. It is not the external situation that matters but the inner being.



A Much Lived Life

If you were told you had less than 10 years to live, what would you do?
Would you mourn the lost years of the life you thought you could have had,
Or would you finally live the life you always dreamed of?

If you were told you had less than five years to live,
Would you spend your months in grief and anger,
Or live 50 years worth of life in five?

If you were told you had less than a year to live,
Would you isolate and be consumed with the sorrow of your impending death,
Or would you reach out, make a difference while you still can, take advantage of
every sunrise, making every moment, every word, every touch and every relationship
meaningful, pure, loving and fully alive?

If you were told you only had one month to live,
Would you curse and weep and lament your fate,
Or would you spend those last precious days sharing love with your family and friends,
remembering and laughing at the memories of your crazy beautiful luscious life,
thus creating new memories for your loved ones to cherish and carry on in their hearts?

If you were told you only had one day left to live,
Would you look back at your life in regret,
Or would you look back with peace?

The truth is, each one of us will die someday. And it doesn't matter if that day will happen tomorrow or in 50 years.
The question is: What will you do with the time you have left?
It is not too late.

It's not how long you live that matters, but how much.
And the biggest moments in life are the little ones.

With love,
Christine

Friday, June 2, 2006

Moifee

Such a nice thing this guy wrote on his blog. My story comes about halfway in the post. Thanks to Gregg D for sending it in.

http://moifee.blogspot.com/2006/06/screening-room.html