Dear Friends of Christine,
I just received a call from her mother, Lu Pechera, and she requested that I send out this note to you all urging you to pray for Christine. She didn't give me any details other than that and just wanted everyone to focus their thoughts and prayers to her right now. Wishing you all the best as we pray for her.
-Tony C
Tuesday, October 10, 2006
Monday, October 9, 2006
Scared right now - Need prayers
I am fighting through a sedative fog in my hospital bed to write this so forgive me if i sound less than eloquent.
The past 24 hours have been a terrible storm of 104 degree fevers, cramping, burning, violent chills, heart palipilations, swelling and malaise. My blood counts plummeted to critical levels, lower than when I was moved to the village. I am writing because a doctor said that this may be an indication of graft failure. What that means is that even though the marrow grafted, it may fail to produce enough white cells, red cells and platelets to keep a patient alive. So I just need you guys to pray for me because there isn't much else the doctors can do if that is the case. I'm tethered to IV poles again. And honestly, though I have peace in my heart for whatever God has planned for me, I'm sorta scared right now.
The "cardiac failure" miscommunication occured not just because of a bad cell phone connection, but probably because I was terribly out-of-it when I talked to Cray, There was a nurse in the room taking my vitals and i probably mumbled to Cray about how my blood pressure was too high and my pulse rate was way above normal and that they were going to do an EKG because they were worried about my heart.
It's so weird to live in these extremes. Saturday night I spoke to a black-tie standing ovation, escorted to the stage by Mr. Helford himself (as in the guy whose name is on the hospital I am in right now) and the very next night I am too weak to stand and fighting for my life. I was shaking in tears throughout the night because of the pain and my mom tried to comfort me by saying, "just remember last night, you were in glory." One day the you feel like the world is wide open and the next you feel like the world is ending. But you just got to keep pushing and going and loving and BELIEVE.
I love you guys all so much. I'm not exactly sure what is going on myself. But I am sending my heart out to all of you.
much love,
Christine
The past 24 hours have been a terrible storm of 104 degree fevers, cramping, burning, violent chills, heart palipilations, swelling and malaise. My blood counts plummeted to critical levels, lower than when I was moved to the village. I am writing because a doctor said that this may be an indication of graft failure. What that means is that even though the marrow grafted, it may fail to produce enough white cells, red cells and platelets to keep a patient alive. So I just need you guys to pray for me because there isn't much else the doctors can do if that is the case. I'm tethered to IV poles again. And honestly, though I have peace in my heart for whatever God has planned for me, I'm sorta scared right now.
The "cardiac failure" miscommunication occured not just because of a bad cell phone connection, but probably because I was terribly out-of-it when I talked to Cray, There was a nurse in the room taking my vitals and i probably mumbled to Cray about how my blood pressure was too high and my pulse rate was way above normal and that they were going to do an EKG because they were worried about my heart.
It's so weird to live in these extremes. Saturday night I spoke to a black-tie standing ovation, escorted to the stage by Mr. Helford himself (as in the guy whose name is on the hospital I am in right now) and the very next night I am too weak to stand and fighting for my life. I was shaking in tears throughout the night because of the pain and my mom tried to comfort me by saying, "just remember last night, you were in glory." One day the you feel like the world is wide open and the next you feel like the world is ending. But you just got to keep pushing and going and loving and BELIEVE.
I love you guys all so much. I'm not exactly sure what is going on myself. But I am sending my heart out to all of you.
much love,
Christine
Sunday, October 8, 2006
From Mike - Pray for Christine- possible Graft failure
An update relayed from Christine in the ER.... Want to correct that rumour saying that Christine is having cardiac arrest right now. Christine said “cardiac failure” should have been “graft failure,” and blamed a poor cell phone connection for the miscommunication. In other words, she’s been told the fever and symptoms she’s currently experiencing are possibly due to graft failure – so she definitely needs all of our prayers, meditations and positive thoughts. She also said she can’t take calls right now because she’s being sedated, but updates will continue to be posted here. Christine is being readmitted to the acute care part hospital. They don’t know what’s causing all of this.
Thanks
MS
Thanks
MS
From Debbie - PRAY FOR CHRISTINE NOW!
I want to inform all of you to please send out all your prayers and meditations to Christine NOW!
She is in the ER ROOM and is going to be admitted to the hospital. The doctors don't know what is wrong with her and it is very bad!
I just spoke with her 2 minutes ago and she is very weak and doing everything she can to stay alive! Give her all the support you can through your prayers and meditations.
p.s. sorry if this is getting to you several times...we are having difficulties posting this message.
-DF
She is in the ER ROOM and is going to be admitted to the hospital. The doctors don't know what is wrong with her and it is very bad!
I just spoke with her 2 minutes ago and she is very weak and doing everything she can to stay alive! Give her all the support you can through your prayers and meditations.
p.s. sorry if this is getting to you several times...we are having difficulties posting this message.
-DF
Thursday, October 5, 2006
Day 89 (99 Days in the hospital) - Busy little patient
Today is Day 89 post-transplant. 99 days in the hospital. The big milestone "Day 100" (post-transplant) falls on Friday the 13th! My counts are still lower than hoped for at this point, so we still don't know how much longer until I go home for the next stage of recuperation. I am tearfully thankful that I am still here. Tomorrow I go in for the next battery of tests to see how the weather is inside.
But right now I need some help. "Cinema Secrets" in Toluca Lake will be holding a fundraiser/marrow drive on Saturday, October 28. Debra, Mike and their team of make- up and costume maestros have generously stepped forward to make a difference. There will be an In'n'Out truck at the event from (I think) something like 11 to 4. Every burger sold will go towards helping Jerome and I in our fight against cancer. Jerome is a very good friend of mine who will be admitted for a bone marrow transplant in the next month. His odds are the same as mine. So tell all your friends, (especially ethnic minorities!) to go there if they haven't signed up on the registry yet, if they haven't got their Halloween costume yet, if they have a few dollars they can drop into the donation can, or if they just want a good burger. I plan to have my very first "double-double-animal-style" of 2006 that day!
This Saturday my Mom and I will be kidnapped by Limo to a hoity-toity fundraiser for City of Hope where I will be honored as a "special guest speaker". From what I hear, the Los Angeles equivalents of the Rockefellers, Vanderbilts and Astors will be there. It's going to be weird speaking to such a discriminating crowd whilst sporting a big blue surgical mask.
One more thing, remember that F-Word movie I worked on? We are rolling out in theaters across the country starting in November.
It's a long road to recovery. But it sure never gets boring around here.
From the hospital bed,
Christine
But right now I need some help. "Cinema Secrets" in Toluca Lake will be holding a fundraiser/marrow drive on Saturday, October 28. Debra, Mike and their team of make- up and costume maestros have generously stepped forward to make a difference. There will be an In'n'Out truck at the event from (I think) something like 11 to 4. Every burger sold will go towards helping Jerome and I in our fight against cancer. Jerome is a very good friend of mine who will be admitted for a bone marrow transplant in the next month. His odds are the same as mine. So tell all your friends, (especially ethnic minorities!) to go there if they haven't signed up on the registry yet, if they haven't got their Halloween costume yet, if they have a few dollars they can drop into the donation can, or if they just want a good burger. I plan to have my very first "double-double-animal-style" of 2006 that day!
This Saturday my Mom and I will be kidnapped by Limo to a hoity-toity fundraiser for City of Hope where I will be honored as a "special guest speaker". From what I hear, the Los Angeles equivalents of the Rockefellers, Vanderbilts and Astors will be there. It's going to be weird speaking to such a discriminating crowd whilst sporting a big blue surgical mask.
One more thing, remember that F-Word movie I worked on? We are rolling out in theaters across the country starting in November.
It's a long road to recovery. But it sure never gets boring around here.
From the hospital bed,
Christine
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,
Christine
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.
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,
Christine
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. :)
love,
Christine
www.savechristine.com
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.
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. :)
love,
Christine
www.savechristine.com
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.
love,
Christine
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.
love,
Christine
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,
Christine
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,
Christine
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,
Jackie
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,
Jackie
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,
Christine
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,
Christine
Sunday, August 27, 2006
msg from Julie D - Visit with Christine
I spent an hour yesterday walking on the COH grounds with Christine. It's good to see Christine out of the hospital. After 63 days, now staying in the cottages as she recovers.
To think she only had about a 30% chance to survive because her bone-marrow match was a partial one, but, right now it looks like she is doing just that. Her family have been to hell and back with all this but have been sustained by their deep faith.
As we slowly walked around (had to do it after sunset because she can't be exposed to the sun) she, wearing a heavy-duty mask to keep out bacteria and germs, marveled at a cottontail rabbit, a squirrel, and even a large spider we saw dangling in front of us. She chose to leave the sidewalk to walk on the grass just to feel it beneath her feet, even through her shoes. All of these sights and sensations gave her instant pleasure.
While the rest of us are stressed to the max just getting through our daily lives, Christine is teaching us how to live and appreciate the small yet important things. Along with other cancer warriors, her story and her writings from her first transplant will be in a book, Writing for Wellness.
The book will hopefully find a publisher soon. I believe that the method developed in the writing class at City of Hope is a good one and one that can help many, many people as they and their family members go through the "cancer experience" which mostly, today, includes survival, thank God.
-Julie D
To think she only had about a 30% chance to survive because her bone-marrow match was a partial one, but, right now it looks like she is doing just that. Her family have been to hell and back with all this but have been sustained by their deep faith.
As we slowly walked around (had to do it after sunset because she can't be exposed to the sun) she, wearing a heavy-duty mask to keep out bacteria and germs, marveled at a cottontail rabbit, a squirrel, and even a large spider we saw dangling in front of us. She chose to leave the sidewalk to walk on the grass just to feel it beneath her feet, even through her shoes. All of these sights and sensations gave her instant pleasure.
While the rest of us are stressed to the max just getting through our daily lives, Christine is teaching us how to live and appreciate the small yet important things. Along with other cancer warriors, her story and her writings from her first transplant will be in a book, Writing for Wellness.
The book will hopefully find a publisher soon. I believe that the method developed in the writing class at City of Hope is a good one and one that can help many, many people as they and their family members go through the "cancer experience" which mostly, today, includes survival, thank God.
-Julie D
Wednesday, August 23, 2006
A little set-back
Well, I just found out today that I've contracted a dreaded viral infection. No one can say where it came from. In addition to the concerning "chimeric" transplant, it also explains why my blood counts are not rising. For normal healthy persons, this virus is common and does not cause any acute problems, but it can prove fatal for newborns and those with "suppressed immune systems" (moi!) Thankfully, it is treatable with heavy medication. 15 years ago, it would have been curtains for me, so in a strange way, I'm "lucky" to have contracted it now. It's amazing how far medicine has come in just a short matter of time. It's another mountain to climb over but I'm just hoping to see waterfalls on the other side.
My hair is slowly growing in. It sort of feels like thick peach-fuzz, or a little chihuahua. I've finally mastered the G-D-C chords on the guitar. Visitors are staying longer. Walking is easier but is still exhausting, but with each day I am walking farther and walking longer, even if it is just a few extra feet.
Like all of us, I'm just taking it one day at a time. And putting trust in God. Today was warm, sunny and beautiful... and I'm
breathing it all in while I can.
love,
Christine
My hair is slowly growing in. It sort of feels like thick peach-fuzz, or a little chihuahua. I've finally mastered the G-D-C chords on the guitar. Visitors are staying longer. Walking is easier but is still exhausting, but with each day I am walking farther and walking longer, even if it is just a few extra feet.
Like all of us, I'm just taking it one day at a time. And putting trust in God. Today was warm, sunny and beautiful... and I'm
breathing it all in while I can.
love,
Christine
Monday, August 21, 2006
Day 46 (56) - Fighting from the inside out
Since I last wrote we got some news explaining why my WBC blood count has dropped so low, to neutropenic levels. We received the results from the marrow/graft test. It appears that, at this point, the transplant is not 100% successful….. yet. My blood is partly the donor's and partly my "old" marrow. I guess you could say there is a serious turf war going on inside me. The dueling WBC's, the cells that fight off infections and foreign bodies, are in battle with each other over who gets to stay. Civil War. Of course, in order for the transplant to work, we need the donor's marrow to graft.
When I got the news I just closed my eyes and took some deep breaths. This was not good. The doctor left the room to order another blood test, leaving the door open. I sat alone on the examination table watching my feet dangle. I could hear a woman sobbing into her cell phone in the courtyard below. Sunk into his wheelchair, an obese man pushed past my door, his oxygen tank trailing behind. The flourscent lights hummed above me and, on cue, the room began to spin. I focused on my breath again. Just a little more faith. Just a little more strength. Just a little more time. There is hope. It's strange to think that a part of me has to die in order for me to live.
I just want to thank everyone for all the cards, gifts and care packages. The encouraging e-mails, calls, and visits all add up to a blanket of love, wrapping me up in the good stuff.
You have all been a source of comfort as well as courage during the past several weeks. A bunch of savvy girlfriends even put together a huge "Diva box" and filled it with all sorts of luxurious goodies and sparkly stuff. Each day, for ten days, I'd reach into the box and open a new gift that would hint at a new brilliant life ahead. It was wonderful.
I'm sorry to be missing out on all the weddings, baby showers, house warmings, screenings, readings, concerts, birthdays and opening nights. I really wish I could be there. SO much has happened for so many of us in the last eight weeks. But
summer is almost over. I hope all of you are taking advantage of the time that is left to create some chocolate dip strawberry-topped memories.
Meanwhile, here is a poem that my friend Michelle wrote for me in a card included in the "Diva box". It was lovely, I had to share it. Like the poems says, I wish that all our "hearts will always remember…"
Much Love,
Christine
- - - - -
May you soon wander freely
Among life's lovely flowers
Reveling in the beauty
Of each joyous hour
May you soon stroll
Along your beloved seashore
Glowing under the warm sun
Enjoying the fury of the ocean's roar
May the coming of your summer
Soon be announced by the gentle turtledove
And may your heart always remember
Just how much you are loved.
-M Mirandon
August 2006
When I got the news I just closed my eyes and took some deep breaths. This was not good. The doctor left the room to order another blood test, leaving the door open. I sat alone on the examination table watching my feet dangle. I could hear a woman sobbing into her cell phone in the courtyard below. Sunk into his wheelchair, an obese man pushed past my door, his oxygen tank trailing behind. The flourscent lights hummed above me and, on cue, the room began to spin. I focused on my breath again. Just a little more faith. Just a little more strength. Just a little more time. There is hope. It's strange to think that a part of me has to die in order for me to live.
I just want to thank everyone for all the cards, gifts and care packages. The encouraging e-mails, calls, and visits all add up to a blanket of love, wrapping me up in the good stuff.
You have all been a source of comfort as well as courage during the past several weeks. A bunch of savvy girlfriends even put together a huge "Diva box" and filled it with all sorts of luxurious goodies and sparkly stuff. Each day, for ten days, I'd reach into the box and open a new gift that would hint at a new brilliant life ahead. It was wonderful.
I'm sorry to be missing out on all the weddings, baby showers, house warmings, screenings, readings, concerts, birthdays and opening nights. I really wish I could be there. SO much has happened for so many of us in the last eight weeks. But
summer is almost over. I hope all of you are taking advantage of the time that is left to create some chocolate dip strawberry-topped memories.
Meanwhile, here is a poem that my friend Michelle wrote for me in a card included in the "Diva box". It was lovely, I had to share it. Like the poems says, I wish that all our "hearts will always remember…"
Much Love,
Christine
- - - - -
May you soon wander freely
Among life's lovely flowers
Reveling in the beauty
Of each joyous hour
May you soon stroll
Along your beloved seashore
Glowing under the warm sun
Enjoying the fury of the ocean's roar
May the coming of your summer
Soon be announced by the gentle turtledove
And may your heart always remember
Just how much you are loved.
-M Mirandon
August 2006
Saturday, August 19, 2006
msg from Tim S - Ebb and Flow
While at City of Hope for my own three month oil change, I was able to track Christine down over the course of the day. She was about 20 minutes ahead of me in get blood drawn, appointments, and consultations.
My inside sources lost track of her for about 20 minutes, but I found her in the Village. As you can tell from her most recent posts her strength and stamina has a natural ebb and flow. On this day she was able to walk to the hospital which is about two blocks. This is a good thing, but then who knows what tomorrow will bring. Being able to travel in a car also shows that she is doing okay.
If you have been through this process, you know that at one moment you can be feeling your freedom returning only to have it snatched away, by natures callings, fatigue, or just over doing the most simple thing.
Talking is exhausting. Being 'on' is exhausting.
Currently it seems as if her own blood cells are having to teach donor-man's cells how to act appropriately. Seems that donor-man's cells are still a little slow on the uptake a bit in learning what they should be doing. Obviously, they have never lived within a woman before and are taken aback by the whole deal. Bufferfly's cells are being tolerant as they can be, but will soon just grab the little dudes and get them working for their pay. This will be good.
As usual she was in good spirits. When she comes out the other side of this she has a lot on her plate. Each items will be a work of joy. She is blessed to have so many dear friends and you to are blessed by making her aquaintance.
She looked good, Envisions the wonderful salad that will come in 50+ days. I can stil taste the first one I had. Folks always guess that BMT folks want some exotic mean when they become free. What we really crave are fresh fruit, berries, and that salad...
Always a joy to visit with Christine.
Tim S
My inside sources lost track of her for about 20 minutes, but I found her in the Village. As you can tell from her most recent posts her strength and stamina has a natural ebb and flow. On this day she was able to walk to the hospital which is about two blocks. This is a good thing, but then who knows what tomorrow will bring. Being able to travel in a car also shows that she is doing okay.
If you have been through this process, you know that at one moment you can be feeling your freedom returning only to have it snatched away, by natures callings, fatigue, or just over doing the most simple thing.
Talking is exhausting. Being 'on' is exhausting.
Currently it seems as if her own blood cells are having to teach donor-man's cells how to act appropriately. Seems that donor-man's cells are still a little slow on the uptake a bit in learning what they should be doing. Obviously, they have never lived within a woman before and are taken aback by the whole deal. Bufferfly's cells are being tolerant as they can be, but will soon just grab the little dudes and get them working for their pay. This will be good.
As usual she was in good spirits. When she comes out the other side of this she has a lot on her plate. Each items will be a work of joy. She is blessed to have so many dear friends and you to are blessed by making her aquaintance.
She looked good, Envisions the wonderful salad that will come in 50+ days. I can stil taste the first one I had. Folks always guess that BMT folks want some exotic mean when they become free. What we really crave are fresh fruit, berries, and that salad...
Always a joy to visit with Christine.
Tim S
Thursday, August 17, 2006
Baby Steps
We are now 42 days post transplant, 52 days since being admitted to the hospital with another 58 days to go.
I just wanted to write in real quick. Transition to the village has been both wonderful and challenging. Been taking lots of baby steps. Ten days ago I was bedridden. Five days ago I was shuffling around, relying on a wheelchair for support. Today I can walk the two blocks to the hospital without having to stop to rest. It's simple yet extraordinary.
I've been blessed to meet many heroes and courageous souls during my stay here. Some stories are inspirational, some break the heart. The word "cancer" may conjure thoughts of fear and death in some people, but here in "the village", daily conversation whirls around the subject of life and love. Of connection, commitment, faith and trust. There is no time for facades.
My daily routine is scheduled around doctor appointments and prescription medications. It's a matter of finding the balance between light exercise, deep rest, meditation and mental stimulation. Cabin fever is a good sign. I get emotional with every hug I share with visiting friends and family. When alone, I escape by reading or playing music. There's a grand piano in the small theater here and I've been tinkering with "Daydream Believer" by the Monkees: (I like to listen to it on my ipod as I hop around the rose garden.) A couple friends came by the other day and we thought to take advantage of the theater for rehearsals and skits. I plan to sit in the orchestra and shout "More energy!"
These days, it is challenging to remember things and write fluently. My doctor assures it has to do with what my body has been through. "Cognitive dysfunction" or "ChemoBrain" thankfully is temporary, but it's disquieting when your brain is only able to think in sentence fragments.
Even though I must hide from the sun and wear a heavy surgical mask, it is so revitalizing to be outside. My doctor just gave the approval for me to ride in a car. I can leave campus, but only for a short time and have to stay in the general vicinity. The
first place I visited, of course, was REI. It was the first time I left the hospital grounds in over seven weeks.
It means a lot that there are angels out there who continue to spread the word, conducting marrow drives, and educating friends and family about signing up on the registry. Let's continue the good.
In terms of health and recovery, my blood counts plateau'd last week and this week the levels have actually gone down to a semi-critical level. This has caused a bit of concern and we are praying that things improve soon. Each day is still a struggle but to be alive… that alone is a blessing
The other night my mother and I briefly left the room to watch the Perseid meteor shower. We only saw one shooting star, but it was enough to make a wish.
Much Love,
Christine
I just wanted to write in real quick. Transition to the village has been both wonderful and challenging. Been taking lots of baby steps. Ten days ago I was bedridden. Five days ago I was shuffling around, relying on a wheelchair for support. Today I can walk the two blocks to the hospital without having to stop to rest. It's simple yet extraordinary.
I've been blessed to meet many heroes and courageous souls during my stay here. Some stories are inspirational, some break the heart. The word "cancer" may conjure thoughts of fear and death in some people, but here in "the village", daily conversation whirls around the subject of life and love. Of connection, commitment, faith and trust. There is no time for facades.
My daily routine is scheduled around doctor appointments and prescription medications. It's a matter of finding the balance between light exercise, deep rest, meditation and mental stimulation. Cabin fever is a good sign. I get emotional with every hug I share with visiting friends and family. When alone, I escape by reading or playing music. There's a grand piano in the small theater here and I've been tinkering with "Daydream Believer" by the Monkees: (I like to listen to it on my ipod as I hop around the rose garden.) A couple friends came by the other day and we thought to take advantage of the theater for rehearsals and skits. I plan to sit in the orchestra and shout "More energy!"
These days, it is challenging to remember things and write fluently. My doctor assures it has to do with what my body has been through. "Cognitive dysfunction" or "ChemoBrain" thankfully is temporary, but it's disquieting when your brain is only able to think in sentence fragments.
Even though I must hide from the sun and wear a heavy surgical mask, it is so revitalizing to be outside. My doctor just gave the approval for me to ride in a car. I can leave campus, but only for a short time and have to stay in the general vicinity. The
first place I visited, of course, was REI. It was the first time I left the hospital grounds in over seven weeks.
It means a lot that there are angels out there who continue to spread the word, conducting marrow drives, and educating friends and family about signing up on the registry. Let's continue the good.
In terms of health and recovery, my blood counts plateau'd last week and this week the levels have actually gone down to a semi-critical level. This has caused a bit of concern and we are praying that things improve soon. Each day is still a struggle but to be alive… that alone is a blessing
The other night my mother and I briefly left the room to watch the Perseid meteor shower. We only saw one shooting star, but it was enough to make a wish.
Much Love,
Christine
Tuesday, August 8, 2006
Update from Jocelyn - The new digs
Hi Everyone,
I spoke with Christine today at her new digs, which she calls the ultimate slacker's pad, and she sounded great. She's still tired, of course, but getting stronger every day. In fact, yesterday she learned (drumroll), that she won't be needing anymore platelets!!! However, she still encourages us to donate on her behalf as she has many friends at City of Hope who could use them (she didn't give specific names). Stephanie, who donated last Saturday, gave 2 almost 3 units of platelets...(I am told she didn't make it to 3 because the machine couldn't keep
up with her!!! Christine calls her the Barbarella of the platelet world!) will be Christine's last batch of platelets because she is doing so well!
Also wanted to pass on some information for visitors. Christine loves having visitors, make sure to call ahead as she has many appointments during the day in the hospital, and, at the doctor's request for the next one to two weeks, we should try to limit visitation time to under an hour since it is imperative that Christine gets plenty of rest during this time.
Jocelyn
I spoke with Christine today at her new digs, which she calls the ultimate slacker's pad, and she sounded great. She's still tired, of course, but getting stronger every day. In fact, yesterday she learned (drumroll), that she won't be needing anymore platelets!!! However, she still encourages us to donate on her behalf as she has many friends at City of Hope who could use them (she didn't give specific names). Stephanie, who donated last Saturday, gave 2 almost 3 units of platelets...(I am told she didn't make it to 3 because the machine couldn't keep
up with her!!! Christine calls her the Barbarella of the platelet world!) will be Christine's last batch of platelets because she is doing so well!
Also wanted to pass on some information for visitors. Christine loves having visitors, make sure to call ahead as she has many appointments during the day in the hospital, and, at the doctor's request for the next one to two weeks, we should try to limit visitation time to under an hour since it is imperative that Christine gets plenty of rest during this time.
Jocelyn
Sunday, August 6, 2006
Six weeks later
Alas, the new room in the village had NO DSL. And for some reason I can't access my dial-up either. I only have access online when I go to the "main house" of the village. Only two computers are provided for the entire community and are available only during business hours, thus there is usually a wait and a time limit. My point: I should be able catch up with my e-mail by 2010.
Last night, for the first time in six weeks, there was nothing between me and the sky. The stars were dim but palpable. Though having to wear a heavy surgical mask prevented me from breathing in the night air, I could feel it in the pores of my skin and it was delicious.
There is quite a bit of wildlife on campus. I saw a hawk swoop by clutching its prey. I watched a cottontail bunny rabbit in the grass munch on a guava. A squirrel came up to my door, hoping for a treat. Hummingbirds and butterflies flit and whizz by. It's like a mini- animal park.
My energy wanes from low to extremely fatigued so I am not romping through the grass just yet. But it is SO GOOD to feel the sun and the wind and the earth.
much love,
Christine
Last night, for the first time in six weeks, there was nothing between me and the sky. The stars were dim but palpable. Though having to wear a heavy surgical mask prevented me from breathing in the night air, I could feel it in the pores of my skin and it was delicious.
There is quite a bit of wildlife on campus. I saw a hawk swoop by clutching its prey. I watched a cottontail bunny rabbit in the grass munch on a guava. A squirrel came up to my door, hoping for a treat. Hummingbirds and butterflies flit and whizz by. It's like a mini- animal park.
My energy wanes from low to extremely fatigued so I am not romping through the grass just yet. But it is SO GOOD to feel the sun and the wind and the earth.
much love,
Christine
Friday, August 4, 2006
Day 30 (29) - Good News
August 4, Day 30 (39)
Good news.
My blood counts have been doing so well over the last couple days that the doctors have decided to move me to the village... TODAY. The village is a small cluster of "outpatient"
bungalows located on campus. The rooms are by no means fancy... more like a medically
themed Hotel 6, but at least we will be out of the busy main building. It is quieter, has
more privacy and each unit has its own kitchenette.
The nurses keep on reiterating "You're not out of the woods yet" and then follow with a laundry list of things to avoid (like sunlight), symptoms to watch out for (like a cough) and
medications that are essential. Supposedly if I forget to take two pills in particular, I won't survive more than 24 hours. The hospital staff goes on to say that if complications, infections or rejection were to occur, it would most likely haqppen in the next 6 months, but more likely in the next 70 days. No champagne popping yet but things are looking good so far. Think good thoughts.
The staff here says that my recovery had been "remarkable". I attribute it to all the prayers and good vibes that are whizzing through the air. Thank you so much for the continued prayers and for being with me every step of the way. Medicine can treat, but it is love that heals.
love,
Christine
Good news.
My blood counts have been doing so well over the last couple days that the doctors have decided to move me to the village... TODAY. The village is a small cluster of "outpatient"
bungalows located on campus. The rooms are by no means fancy... more like a medically
themed Hotel 6, but at least we will be out of the busy main building. It is quieter, has
more privacy and each unit has its own kitchenette.
The nurses keep on reiterating "You're not out of the woods yet" and then follow with a laundry list of things to avoid (like sunlight), symptoms to watch out for (like a cough) and
medications that are essential. Supposedly if I forget to take two pills in particular, I won't survive more than 24 hours. The hospital staff goes on to say that if complications, infections or rejection were to occur, it would most likely haqppen in the next 6 months, but more likely in the next 70 days. No champagne popping yet but things are looking good so far. Think good thoughts.
The staff here says that my recovery had been "remarkable". I attribute it to all the prayers and good vibes that are whizzing through the air. Thank you so much for the continued prayers and for being with me every step of the way. Medicine can treat, but it is love that heals.
love,
Christine
Tuesday, August 1, 2006
Trasnplant Day 27, (36 days in the hospital)
Tuesday, August 1, Day 27 (36) .
Halleluiah! I'm online! A tech came into my room this afternoon and said "Congratulations, you have DSL!". Good timing, because it's only now that I feel strong enough to sit, focus, read and type, for a few minutes at a time, at least. There is still a long way to go but I am so thankful to have made it this far into the transplant. It's been a rough ride, but I'm SLOWLY getting better with each passing day.
Picture a boundary of a 15-foot radius surrounding your humble bed. Now imagine not going beyond that boundary for almost an entire summer. Yet, within that circle you experience one of the most remote and arduous of journeys, with 90% of the time not extending beyond center. It's been 36 days since the heavy doors of this hushed, sterile ward sealed off the aromatic chatter and pungent textures of the outside world. And each day has been draped with uncertainty, with Hope clinging to the yards with long arms.
The effulgence of life is so real here because death lingers so close. It would be too easy to describe the experience as "surreal", but the world inside the heavy doors does bear closer to a disjointed dream or stuff of placid nightmares. Except for the one hour when you are "unhooked" in order to take a shower, your heart is literally tethered to a pair of six (or seven?) foot long vertical poles on rolling casters, via catheter tubing from your chest. This is also known as the "IV tree", whence hangs a buffet of chemotherapy, narcotics, nutrient support, antibiotics, antifungals, antivirals, and antirejection drugs.
Nurses and long-term patients share a special dark humor with each other to help cope with the daily activity of holding on. One of the running jokes is that you are "married" to the "IV Tree" for your entire stay. As a result, some people have taken to christening their trees with special names. Men, especially those under 40, call their trees the "mother-in-law" or simply "in-law". Women tend to be more whimsical, with "Antonio Banderas" or "George Clooney" being the popular guys to have by your side 24/7 while facing each day.
And with each day it is the tiny goals, the littlest of accomplishments that bring applause and tears: Going 24 hours without needing narcotic pain medication; Feeling well enough to raise your arms above your head; Regaining the ability to swallow food. Less than a week ago, I tested my strength and stamina by trying to stand in the shower. When I was finally able to stand for the entire five minutes, the nurse clapped and cheered and then sheepishly pumped her light-blue, non-latex glove in the air.
I love showering. Though the private bathroom is just five feet from my bed, the shower is only time I can "escape" from the bland heavy air of the hospital ward. The faucets turn, the hot water flows down, I close my eyes and suddenly I am covered in Plumeria lather in an outdoor shower on Maui; I am kayaking sea caves in the Meditterean; I am dancing in Virginia rain.
Four days ago, I was finally allowed to leave my room, covered in mask, gloves and isolation gown. I took a short walk in the morning and starting yesterday, I take another short walk in the evening. There are many stories in this hallway. Some tragic, some inspiring. There was the 3-year old girl and her mother who waved to me through the window. A year and a half ago the little toddler was fighting for her life . Three times her mother was told that her little girl would not make it through the night. Now the little girl smiles with cherubic cheeks, healthy.
There is also Rodrigo, who had a transplant 28 years ago and now works as a BMT nurse to help others make it through.
Okay, there goes my energy... need to doze off for now. 27 Days Down. 73 more days to go before I can leave the hospital.
I can't believe it's August. Sending much much much love.
xo,
Christine
Halleluiah! I'm online! A tech came into my room this afternoon and said "Congratulations, you have DSL!". Good timing, because it's only now that I feel strong enough to sit, focus, read and type, for a few minutes at a time, at least. There is still a long way to go but I am so thankful to have made it this far into the transplant. It's been a rough ride, but I'm SLOWLY getting better with each passing day.
Picture a boundary of a 15-foot radius surrounding your humble bed. Now imagine not going beyond that boundary for almost an entire summer. Yet, within that circle you experience one of the most remote and arduous of journeys, with 90% of the time not extending beyond center. It's been 36 days since the heavy doors of this hushed, sterile ward sealed off the aromatic chatter and pungent textures of the outside world. And each day has been draped with uncertainty, with Hope clinging to the yards with long arms.
The effulgence of life is so real here because death lingers so close. It would be too easy to describe the experience as "surreal", but the world inside the heavy doors does bear closer to a disjointed dream or stuff of placid nightmares. Except for the one hour when you are "unhooked" in order to take a shower, your heart is literally tethered to a pair of six (or seven?) foot long vertical poles on rolling casters, via catheter tubing from your chest. This is also known as the "IV tree", whence hangs a buffet of chemotherapy, narcotics, nutrient support, antibiotics, antifungals, antivirals, and antirejection drugs.
Nurses and long-term patients share a special dark humor with each other to help cope with the daily activity of holding on. One of the running jokes is that you are "married" to the "IV Tree" for your entire stay. As a result, some people have taken to christening their trees with special names. Men, especially those under 40, call their trees the "mother-in-law" or simply "in-law". Women tend to be more whimsical, with "Antonio Banderas" or "George Clooney" being the popular guys to have by your side 24/7 while facing each day.
And with each day it is the tiny goals, the littlest of accomplishments that bring applause and tears: Going 24 hours without needing narcotic pain medication; Feeling well enough to raise your arms above your head; Regaining the ability to swallow food. Less than a week ago, I tested my strength and stamina by trying to stand in the shower. When I was finally able to stand for the entire five minutes, the nurse clapped and cheered and then sheepishly pumped her light-blue, non-latex glove in the air.
I love showering. Though the private bathroom is just five feet from my bed, the shower is only time I can "escape" from the bland heavy air of the hospital ward. The faucets turn, the hot water flows down, I close my eyes and suddenly I am covered in Plumeria lather in an outdoor shower on Maui; I am kayaking sea caves in the Meditterean; I am dancing in Virginia rain.
Four days ago, I was finally allowed to leave my room, covered in mask, gloves and isolation gown. I took a short walk in the morning and starting yesterday, I take another short walk in the evening. There are many stories in this hallway. Some tragic, some inspiring. There was the 3-year old girl and her mother who waved to me through the window. A year and a half ago the little toddler was fighting for her life . Three times her mother was told that her little girl would not make it through the night. Now the little girl smiles with cherubic cheeks, healthy.
There is also Rodrigo, who had a transplant 28 years ago and now works as a BMT nurse to help others make it through.
Okay, there goes my energy... need to doze off for now. 27 Days Down. 73 more days to go before I can leave the hospital.
I can't believe it's August. Sending much much much love.
xo,
Christine
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