It's hard to believe that less than 11 months ago I was told that I had less than a year to live. Now it's countdown to 2007.
At City of Hope yesterday, the latest results showed blood counts have stayed the same. A bit of calculating found that levels are:
White blood cells = 30% of a normal healthy person
Red blood cells = 60% of a normal healthy person
Hemoglobin = less than 60% of a normal healthy person
Platelets = less than 20% of a normal healthy person
No wonder I've been feeling so tired and out of it! Expressing impatience for my counts to go up, my oncologist DID point out that I was very lucky to be alive, in full-remission, without any major complications. Full-recovery is just going to take "some time".
Time.
I want so badly to live and get out there and fly, dance, climb, love, explore and BE. It's torturous, actually. But the risks are too great, so I have to sit, wait, hope, watch, rest and pray for my immune system to kick in and for cells to flourish. Time is precious, even when it means sacrificing some so that you can hopefully have more.
My doctor did say that one way to help blood counts & health (for anyone!) is to reduce the amount of stress in life. Most post-BMT survivors return to a home filled with loved ones to take care of the everyday. I have the challenge of living on my own. Over the last couple weeks, I experimented with the possibility of being as independent as possible and have learned
that, at this point, it is doing more harm than good. Simply doing the mundane such as dishes or laundry is a slow and deliberate process that leaves me worn out and on the couch for multiple catnaps a day. I hate to admit that I end up spending a lot of the day in bed.
So I humbly write this e-mail, of necessities and requests for help. And a solution to reduce the number of e-mails/calls for everyone.
Less stress… I hope.
Every Tuesday I need a ride to City of Hope. It's tricky to say how long the day will be. On a good day, the appointments will last 2-3 hours. On a bad day, 6-8 hours, though those days are very rare. Every once in awhile, I may need a lift to other appointments. Occasionally I may just drive myself if it's a quick trip and I'm feeling feisty and ambitious, but the less driving I do, the better.
Since I am my own caretaker and advocate, the YAHOO group Calendar will be used as a passive way to ask for help. Save the link below for easy access to the Calendar. If you feel like helping, want to visit or need a great excuse to drop by, check the calendar. Unless it is urgent or unusual, scheduled requests for help will not be sent out by e-mail.
I also need help with errands. I`m not exactly sure how to work that out. I guess if you happen to be in my neck of the woods, give me a call and maybe serendipity will step in. Or if you know that you will be going to Trader Joe's, Whole Foods, The Co-op, Cost-co, or any errand-type place (i.e. post-office, pharmacy, hardware store) and you'd like some company
or have time to pick something up, call or e-mail to let me know. I will probably need something too.
I know the holidays are here and everyone is crazy busy and I don't wish to inconvenience anyone. But if you feel like taking a break from the crowded rush & bustle and want to walk at the pace of healing, recovery and self-discovery, I got a nice hot cup of tea waiting.
One last request: Flu season is upon us so please, if you have the sniffles or any ills, it would be best to send Season's Greetings through non-physical contact avenues of love. Happy Holidays. Let's celebrate this Season of Love. And Blessings always. Looking forward to a bright New Year.
Much love,
Christine
P.S. Looks like I will be on TV again. I have a shoot with TLC tomorrow. Not exactly sure what it's all about, but we'll see...
"Measure your Life in Love"
A.Pascual
Wednesday, November 29, 2006
Wednesday, November 22, 2006
From Rob B - Happy Turkey Day from C
Happy Turkey Day all,
I spoke with Christine last night for about an hour and she asked me to give everyone an update on how she is doing. First of all, she sounds amazing and is in good spirits. She loves being home but is still adjusting to her new old life. All of the wonderful phone calls and e-mail's are still reaching her and she is grateful for every one of them. But part of her recovery process is to take things easy and not over tax herself. Just going to the market to pick up an item requires an hour and a half nap afterwards. This is mainly due to the fact her red blood cell count is still very low and I am sure that those of you who have donated blood in the past know how tired you get afterwards. So she is currently trying to build her count back up and until she does, even the smallest chore exhausts her.
All of the messages that she is receiving are being read, but she doesn't quite have the energy to respond to all of them. I had a friend who had to rebuild their blood in much the same way Christine does and he told me that it does take some time and quite a bit of eating to accomplish. But keep those well wishes coming for they are much appreciated and eventually we shall hear from our special friend.
Again, she is doing well, her spirit is positive as always, and her commitment is strong. If anyone has any specific questions, please feel free to write back. Until then a very tired Christine and I wish everyone a very Happy and well fed Thanksgiving.
Rob
I spoke with Christine last night for about an hour and she asked me to give everyone an update on how she is doing. First of all, she sounds amazing and is in good spirits. She loves being home but is still adjusting to her new old life. All of the wonderful phone calls and e-mail's are still reaching her and she is grateful for every one of them. But part of her recovery process is to take things easy and not over tax herself. Just going to the market to pick up an item requires an hour and a half nap afterwards. This is mainly due to the fact her red blood cell count is still very low and I am sure that those of you who have donated blood in the past know how tired you get afterwards. So she is currently trying to build her count back up and until she does, even the smallest chore exhausts her.
All of the messages that she is receiving are being read, but she doesn't quite have the energy to respond to all of them. I had a friend who had to rebuild their blood in much the same way Christine does and he told me that it does take some time and quite a bit of eating to accomplish. But keep those well wishes coming for they are much appreciated and eventually we shall hear from our special friend.
Again, she is doing well, her spirit is positive as always, and her commitment is strong. If anyone has any specific questions, please feel free to write back. Until then a very tired Christine and I wish everyone a very Happy and well fed Thanksgiving.
Rob
Monday, November 20, 2006
From Barak - Video Links to CBS TV News stories
Did you miss Christine on CBS?
The story was called "Culver City Woman Gets Marrow Transplant."
CBS 2 and KCAL 9 are sister-stations so it ran on both channels Sunday night. Click HERE to watch the video.
http://www.cbs2.com/video/?id=28919@kcbs.dayport.com
Also attached is the previous story link for "Culver City Woman Needs
Bone Marrow To Live." Click HERE to watch.
Barak R
The story was called "Culver City Woman Gets Marrow Transplant."
CBS 2 and KCAL 9 are sister-stations so it ran on both channels Sunday night. Click HERE to watch the video.
http://www.cbs2.com/video/?id=28919@kcbs.dayport.com
Also attached is the previous story link for "Culver City Woman Needs
Bone Marrow To Live." Click HERE to watch.
Barak R
Sunday, November 19, 2006
On TV tonight!
Hey all,
It's 6:00pm Sunday night and I just got off the phone with CBS and they are coming RIGHT NOW with a camera crew to interview me. The segment airs TONIGHT!
Also, I will be interviewed tomorrow at the KSCI studios for their Thanksgiving special. The taping is tomorrow but I'm not sure exactly when the show will air.
xo,
Christine
It's 6:00pm Sunday night and I just got off the phone with CBS and they are coming RIGHT NOW with a camera crew to interview me. The segment airs TONIGHT!
Also, I will be interviewed tomorrow at the KSCI studios for their Thanksgiving special. The taping is tomorrow but I'm not sure exactly when the show will air.
xo,
Christine
Thursday, November 9, 2006
Donor letter has to be anonymous
Stop the Presses!!! BM, a very aware friend and City of Hope post-transplant survivor cautioned about some of the limitations of writing a thank you letter to the donor:
"My donor didn't get a hat that I included because it had an American flag on it. I wasn't allowed to include anything that hinted at who I was or where I was from..... The receiving hospital will probably screen everything..... and eliminate anything that is 'locational'."
Because BOTH identities of the donor and patient must remain anonymous for at least one year, we have to be careful not to leave any clues that may reveal who I am or where I live. WE aren't even supposed to know that my donor is from China. Someone goofed and the privileged information accidentally slipped out of his/her mouth. Oops!
Soooo... obviously NO names, NO locations... even country should not be mentioned in the letter. No mention of any aspect of my story or the fact that I was on TV or written about in newspapers and magazines. NO clues whatsoever that could indicate anything more than my age and that I am female. Sections of your letter may be blocked out or your entire letter
may be rejected if there is revealing information.
I hope this hasn't hindered anyone's desire to write. My adivce is to just write from the heart. Love. All you need is love. :)
-Christine
"My donor didn't get a hat that I included because it had an American flag on it. I wasn't allowed to include anything that hinted at who I was or where I was from..... The receiving hospital will probably screen everything..... and eliminate anything that is 'locational'."
Because BOTH identities of the donor and patient must remain anonymous for at least one year, we have to be careful not to leave any clues that may reveal who I am or where I live. WE aren't even supposed to know that my donor is from China. Someone goofed and the privileged information accidentally slipped out of his/her mouth. Oops!
Soooo... obviously NO names, NO locations... even country should not be mentioned in the letter. No mention of any aspect of my story or the fact that I was on TV or written about in newspapers and magazines. NO clues whatsoever that could indicate anything more than my age and that I am female. Sections of your letter may be blocked out or your entire letter
may be rejected if there is revealing information.
I hope this hasn't hindered anyone's desire to write. My adivce is to just write from the heart. Love. All you need is love. :)
-Christine
I am in tears as I write this from home!! And still in a daze and overjoyed by this major turning point. We did it! To reiterate:
MRI Scan- Clear
CT Scan - No indication of disease.
PET Scan - No abnormal uptake.
Marrow – No indication of Lymphoma
Graft - Results pending
Prognosis - Promising
As I turned the key to my door, I was overwhelmed by the thought that I was truly lucky and blessed to be walking THIS threshold and not "the other". I entered and found my apartment stuffed with gifts and cards and photographs. I fell to my knees and cried and sent out love and thanks in all directions. Before long my neighbors came over with hugs and cookies.
I am savoring every little moment and inhaling each and every sweet/bitter/sour/salty taste on my tongue. Everything is fascinating and beautiful. The pitch-black silhouette of palm trees against a blue-orange sky, the hazel eyes of the check-out clerk at Trader Joe's, the thick aroma of Korean-tofu soup, the glowing faces of friends and the sound of my family laughing again. TC came to visit tonight and gave me my first homecoming gift: A solid-body mahogany electric guitar complete with Marshal amp and all the trimmings! Woo-hoo!
Though I no longer will be a resident at City of Hope, I am still a patient. The recovery phase can be slow and the doctors will be monitoring my condition weekly. But at this very moment my body is free and crystal clear and it just feels DELICIOUS.
I would not be here writing this had not a complete stranger on the other side of the world agreed to donate his marrow to another complete stranger on the other side of the world. Though he was only a partial-match, he was my one and only hope. If he had refused to donate, I would have not lived through the summer. His gift of life made him my hero. I am not allowed to know his identity for the first year of the transplant, but I am allowed to send one single letter. After one year,
if he agrees, we will meet.
Though the donation center said that I could only send one letter to this hero of ours, they didn't limit to how long it could be. ;) Each member of my family plans to contribute to this great Thank-You letter and we decided to open it up to anyone who wants to be a part of it. If you'd like to thank this man for saving my life, please e-mail the message to me and I will paste it in along with my words. Or send a card or letter by snail-mail and I'll personally wrap together the bundle of love and mail it in one big package. I won't open sealed letters. We will post selected open letters and thanks anonymously on the website so that others can see what a single person, in a single act, can do to make a difference in this world. Hopefully it will inspire others to do the same.
After my last e-mail, I was sent this quote about "Providence" and just had to share:
"Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation), there is one elementary truth the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. A whole stream of events issues from the decision, raising in one's favor all manner of unforeseen incidents, meetings and material assistance, which no man could have
dreamt would have come his way. "
-William Hutchison Murray
Fear just isn't worth it.
Much much love,
Christine
P.S. My mother will finally go home on the 13th and from there, I'm flying solo. I am still in a weakened and vulnerable state so I'm going to be asking for alot of help.
In the meanwhile, my first big outing will be this Friday, November 10 at the NuArt in Santa Monica for the opening of F**K (a documentary I had a hand in co-producing before the relapse). There will be screenings at 5, 7:30 and 10pm, and Q&A afterwards with director Steve Anderson at the 5pm and 7:30. I plan to attend the 7:30 screening. Even if you cannot make it on Friday, the film will be playing all weekend and until November 16th, including matinees. For the NuArt calendar schedule, please visit: http:// www.landmarktheatres.com/Market/LosAngeles/LosAngeles_Frameset.htm
It's good to be back.
MRI Scan- Clear
CT Scan - No indication of disease.
PET Scan - No abnormal uptake.
Marrow – No indication of Lymphoma
Graft - Results pending
Prognosis - Promising
As I turned the key to my door, I was overwhelmed by the thought that I was truly lucky and blessed to be walking THIS threshold and not "the other". I entered and found my apartment stuffed with gifts and cards and photographs. I fell to my knees and cried and sent out love and thanks in all directions. Before long my neighbors came over with hugs and cookies.
I am savoring every little moment and inhaling each and every sweet/bitter/sour/salty taste on my tongue. Everything is fascinating and beautiful. The pitch-black silhouette of palm trees against a blue-orange sky, the hazel eyes of the check-out clerk at Trader Joe's, the thick aroma of Korean-tofu soup, the glowing faces of friends and the sound of my family laughing again. TC came to visit tonight and gave me my first homecoming gift: A solid-body mahogany electric guitar complete with Marshal amp and all the trimmings! Woo-hoo!
Though I no longer will be a resident at City of Hope, I am still a patient. The recovery phase can be slow and the doctors will be monitoring my condition weekly. But at this very moment my body is free and crystal clear and it just feels DELICIOUS.
I would not be here writing this had not a complete stranger on the other side of the world agreed to donate his marrow to another complete stranger on the other side of the world. Though he was only a partial-match, he was my one and only hope. If he had refused to donate, I would have not lived through the summer. His gift of life made him my hero. I am not allowed to know his identity for the first year of the transplant, but I am allowed to send one single letter. After one year,
if he agrees, we will meet.
Though the donation center said that I could only send one letter to this hero of ours, they didn't limit to how long it could be. ;) Each member of my family plans to contribute to this great Thank-You letter and we decided to open it up to anyone who wants to be a part of it. If you'd like to thank this man for saving my life, please e-mail the message to me and I will paste it in along with my words. Or send a card or letter by snail-mail and I'll personally wrap together the bundle of love and mail it in one big package. I won't open sealed letters. We will post selected open letters and thanks anonymously on the website so that others can see what a single person, in a single act, can do to make a difference in this world. Hopefully it will inspire others to do the same.
After my last e-mail, I was sent this quote about "Providence" and just had to share:
"Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation), there is one elementary truth the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. A whole stream of events issues from the decision, raising in one's favor all manner of unforeseen incidents, meetings and material assistance, which no man could have
dreamt would have come his way. "
-William Hutchison Murray
Fear just isn't worth it.
Much much love,
Christine
P.S. My mother will finally go home on the 13th and from there, I'm flying solo. I am still in a weakened and vulnerable state so I'm going to be asking for alot of help.
In the meanwhile, my first big outing will be this Friday, November 10 at the NuArt in Santa Monica for the opening of F**K (a documentary I had a hand in co-producing before the relapse). There will be screenings at 5, 7:30 and 10pm, and Q&A afterwards with director Steve Anderson at the 5pm and 7:30. I plan to attend the 7:30 screening. Even if you cannot make it on Friday, the film will be playing all weekend and until November 16th, including matinees. For the NuArt calendar schedule, please visit: http:// www.landmarktheatres.com/Market/LosAngeles/LosAngeles_Frameset.htm
It's good to be back.
Monday, November 6, 2006
Providence!
EVERYBODY!!!!!!
I am between hospital appointments but I have to share this right now. Remember how I said that life can be sudden and unpredictable?
Bad news: The sample from my bone-marrow biopsy (that contained the info that I've been biting my fingernails about for the last two weeks) somehow got LOST. The lab doesn't have it and no one can find it. That's why the results seemed to be taking so long. No test was ever done!!!
My blood counts may be low, but they are hanging in there, so the doctors do not feel it is necessary to do another biopsy. (whew!) Instead, we drew blood for an HLA test today. Results to come next week.
Good News: After 134 days, I am finally breaking out of this cocoon and GOING HOME!!!!!!!!!!!!!!!! (As soon as tomorrow!!!!)
Better News: I am going home a HEALTHY and happy cancer-free girl!!
Best news: It's an effin' MIRACLE!!!
Look out world!
More later.
Love, Hugs & Kisses too!
Christine
I am between hospital appointments but I have to share this right now. Remember how I said that life can be sudden and unpredictable?
Bad news: The sample from my bone-marrow biopsy (that contained the info that I've been biting my fingernails about for the last two weeks) somehow got LOST. The lab doesn't have it and no one can find it. That's why the results seemed to be taking so long. No test was ever done!!!
My blood counts may be low, but they are hanging in there, so the doctors do not feel it is necessary to do another biopsy. (whew!) Instead, we drew blood for an HLA test today. Results to come next week.
Good News: After 134 days, I am finally breaking out of this cocoon and GOING HOME!!!!!!!!!!!!!!!! (As soon as tomorrow!!!!)
Better News: I am going home a HEALTHY and happy cancer-free girl!!
Best news: It's an effin' MIRACLE!!!
Look out world!
More later.
Love, Hugs & Kisses too!
Christine
Wednesday, November 1, 2006
Day 119 - (129 Days in hospital) Update
Wow. I've been in the hospital for 129 days. Holy peach pits. That's longer than a semester in college. That's longer than it takes to write a Hollywood script (based on a best-seller). That's longer than Boy George's much-buzzed-about musical "Taboo" played on Broadway. That's longer than the ENTIRE official NFL season.
Life is always in transition and in the 129 days that I have been sequestered away, so much has happened.
Some of us joined into marriage to begin a new life, some of us moved to another state to start all over. Some of us were devastated with the loss a loved one. While quite a few were blessed with a baby boy or girl. (One of us, who was told she could not have children because of her marrow transplant, is now pregnant with twins!) Some hearts were broken and some new loves were found. Some of us traveled far to walk through ancient ruins and bask in exotic suns. While some of us focused on the nest and re-discovered ourselves. The home of one my family members burned to the ground. While another friend built his dream second home in the mountains.
In 129 days, two friends who were of my greatest cheerleaders, supporters and activists were suddenly and unexpectedly diagnosed with cancer. They lived the last weeks of their lives fully, grasping every moment, not withholding words of love, holding the hands of those who loved them, those who stayed at their side every step of the way. In the time they had left on earth, they lived a much-lived life. With grace, they stepped up, faced forward and did not run away from their fears.
I've said this before and I'll say it again: Life can be sudden and unexpected and your whole world can open up or be crushed in a split second. We all live in uncertainty, but it is in the unknown that ANYTHING is possible. Trust in the uncertain. I think of how different just my one little life was one year ago, before the relapse. The hopes and expectations of how 2006 "should" have been. I was excited to start a life anew, but cancer, for the second time, took that dream away. For a moment, I thought all was lost and that this story would end dark like a Greek tragedy. I'm glad that I was wrong. I look back now and see that I HAVE started a new life. Not the glossy romanticized drunken bohemian picture painted in my head, but one that is true, honest and real, rich and meaningful. 2006 was not what I thought it should be. It was so much more.
I've spent the majority of the last two weeks in bed. It is taking a long time to get up from the serious knockdown from earlier this month. I can't believe it's November already. I'm on even MORE medication, which has turned my brain into oatmeal. I feel like a zombie underwater. But I reached a MAJOR milestone today. I ate breakfast OUTSIDE. For the first time, I am allowed out of my room WITHOUT a heavy surgical mask! Yes, under the trees, in the grass, with nothing between my lungs and the luscious air. Small steps, though. I still have to wear a mask in the hospital or if I find myself in a crowd. It's flu season, so we have to be careful: visitors still ought to wash hands and wear masks and I can't do any huggin' or kissin' until my blood counts get a little higher. Baby steps. It's so vital yet so torturous!!!
Another wonderful milestone: I can EAT OUT!!!!!!!!! I am no longer on a restricted diet! Though again, baby steps. I'm now on a "cautious" diet. No sushi, restaurant salads, medium-rare steaks or buffets. Only thoroughly cooked food in uncrowded restaurants. But, oh the joy of a fine meal and fine conversation with my beautiful friends!!! I can't wait!!
At City of Hope, they held a Halloween parade for all the pediatric patients. These sweet kids and their families gathered at Helford, the main building and then followed a path around the hospital dotted with candy stops, manned by costumed staff from the many departments on campus. The little patients looked like any Trick-or-Treaters: vampires, Cinderellas, pirates, angels and ghouls. The only things that gave away the fact that these adorable faces were fighting cancer were the wheelchairs and I.V. poles. But their eyes shone with the same excitement and glee of any child as they would stop at a desk or a gaggle of nurses and get handfuls of candy. Many of the kids used pillowcases swiped off their own hospital beds. There was so much love and preciousness in the air. All we wanted to do was help these kids feel normal. To feel like they were still a part of this world, this celebration, and this life. It was the best Halloween party I ever went to.
We still have not received the final results of the marrow graft test, but early summaries have shown that there is NO INDICATION OF LYMPHOMA. Now we are waiting to hear if the graft is still holding on and how well the marrow is performing. So far, its performance has been far less than the doctors have hoped for, but they are delighted that I am still alive and kicking. A miracle. Truly a miracle. Prayers WORK.
I am so happy to be alive and I can't wait to start living again. My desire is to be the proverbial "bird out of a cage", "first out of the gate", "man with a mission", but I have been told that going home is merely the next small step in my recovery process. "Whoa, Nelly" is the message I'm getting from doctors and fellow BMT survivors. There is still that "50% mortality rate at 6 months" statistic looming over my head. I'm at Day 119. That leaves another 61 days to go to beat the odds of the next stage. Every day is a coin toss.
Simple pleasures. Soul connection. Meaning. Love, laughter and joy. (And occasional moments of complete nonsense just to stir things up a bit.) That, for me, is enough for now. Enjoy this Autumn. Its wonders. Its snap. Its crispness. We are blessed.
Much love,
Christine P
P.S. Thanks to everyone who came to the Oct 28 Fundraiser/Marrow Drive. It felt like a mini-reunion wrapped up into one big pre-Halloween party. Because of everyone's hard work and participation, it was a tremendous success!!!
Life is always in transition and in the 129 days that I have been sequestered away, so much has happened.
Some of us joined into marriage to begin a new life, some of us moved to another state to start all over. Some of us were devastated with the loss a loved one. While quite a few were blessed with a baby boy or girl. (One of us, who was told she could not have children because of her marrow transplant, is now pregnant with twins!) Some hearts were broken and some new loves were found. Some of us traveled far to walk through ancient ruins and bask in exotic suns. While some of us focused on the nest and re-discovered ourselves. The home of one my family members burned to the ground. While another friend built his dream second home in the mountains.
In 129 days, two friends who were of my greatest cheerleaders, supporters and activists were suddenly and unexpectedly diagnosed with cancer. They lived the last weeks of their lives fully, grasping every moment, not withholding words of love, holding the hands of those who loved them, those who stayed at their side every step of the way. In the time they had left on earth, they lived a much-lived life. With grace, they stepped up, faced forward and did not run away from their fears.
I've said this before and I'll say it again: Life can be sudden and unexpected and your whole world can open up or be crushed in a split second. We all live in uncertainty, but it is in the unknown that ANYTHING is possible. Trust in the uncertain. I think of how different just my one little life was one year ago, before the relapse. The hopes and expectations of how 2006 "should" have been. I was excited to start a life anew, but cancer, for the second time, took that dream away. For a moment, I thought all was lost and that this story would end dark like a Greek tragedy. I'm glad that I was wrong. I look back now and see that I HAVE started a new life. Not the glossy romanticized drunken bohemian picture painted in my head, but one that is true, honest and real, rich and meaningful. 2006 was not what I thought it should be. It was so much more.
I've spent the majority of the last two weeks in bed. It is taking a long time to get up from the serious knockdown from earlier this month. I can't believe it's November already. I'm on even MORE medication, which has turned my brain into oatmeal. I feel like a zombie underwater. But I reached a MAJOR milestone today. I ate breakfast OUTSIDE. For the first time, I am allowed out of my room WITHOUT a heavy surgical mask! Yes, under the trees, in the grass, with nothing between my lungs and the luscious air. Small steps, though. I still have to wear a mask in the hospital or if I find myself in a crowd. It's flu season, so we have to be careful: visitors still ought to wash hands and wear masks and I can't do any huggin' or kissin' until my blood counts get a little higher. Baby steps. It's so vital yet so torturous!!!
Another wonderful milestone: I can EAT OUT!!!!!!!!! I am no longer on a restricted diet! Though again, baby steps. I'm now on a "cautious" diet. No sushi, restaurant salads, medium-rare steaks or buffets. Only thoroughly cooked food in uncrowded restaurants. But, oh the joy of a fine meal and fine conversation with my beautiful friends!!! I can't wait!!
At City of Hope, they held a Halloween parade for all the pediatric patients. These sweet kids and their families gathered at Helford, the main building and then followed a path around the hospital dotted with candy stops, manned by costumed staff from the many departments on campus. The little patients looked like any Trick-or-Treaters: vampires, Cinderellas, pirates, angels and ghouls. The only things that gave away the fact that these adorable faces were fighting cancer were the wheelchairs and I.V. poles. But their eyes shone with the same excitement and glee of any child as they would stop at a desk or a gaggle of nurses and get handfuls of candy. Many of the kids used pillowcases swiped off their own hospital beds. There was so much love and preciousness in the air. All we wanted to do was help these kids feel normal. To feel like they were still a part of this world, this celebration, and this life. It was the best Halloween party I ever went to.
We still have not received the final results of the marrow graft test, but early summaries have shown that there is NO INDICATION OF LYMPHOMA. Now we are waiting to hear if the graft is still holding on and how well the marrow is performing. So far, its performance has been far less than the doctors have hoped for, but they are delighted that I am still alive and kicking. A miracle. Truly a miracle. Prayers WORK.
I am so happy to be alive and I can't wait to start living again. My desire is to be the proverbial "bird out of a cage", "first out of the gate", "man with a mission", but I have been told that going home is merely the next small step in my recovery process. "Whoa, Nelly" is the message I'm getting from doctors and fellow BMT survivors. There is still that "50% mortality rate at 6 months" statistic looming over my head. I'm at Day 119. That leaves another 61 days to go to beat the odds of the next stage. Every day is a coin toss.
Simple pleasures. Soul connection. Meaning. Love, laughter and joy. (And occasional moments of complete nonsense just to stir things up a bit.) That, for me, is enough for now. Enjoy this Autumn. Its wonders. Its snap. Its crispness. We are blessed.
Much love,
Christine P
P.S. Thanks to everyone who came to the Oct 28 Fundraiser/Marrow Drive. It felt like a mini-reunion wrapped up into one big pre-Halloween party. Because of everyone's hard work and participation, it was a tremendous success!!!
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