Today is a bad day. I can't imagine it being worse than today. I am full of regrets, sorrow and pity. I cry non-stop for the past 2 hours. Chemo was the past two days and this morning I am fully symptomatic: diarrhea, nausea...my scalp even hurts. The nurse tells me it is a sign that whatever I have left is going to fall out. She informs me of the image recovery center downstairs on level 1 and that the first buzz cut is free. She books me an appt. at 10:45.
I am to go home today but the medical staff forgets to give me a medicine intravenously earlier today. Now my mom and I have to sit until 6 (it takes 4 hours and the doctors didn't decide until 2). All seems better until about 3:30 pm. I've started at least 4 new meds today that include things to help me grow my brother's marrow within my own body and another med that helps me maintain a healthy white blood cell count. I'm so uncomfortable by 6:30 the team suggests I might as well stay an extra evening and begin outpatient Friday. They might as well keep an eye on me. My mom stays until 8:00 pm.
By 8:30 pm I'm all restless legs, body aches, hot skin and scalp, unable to sleep and without a medicine that can cure my ailments -- I'm G.I. Jane in the mirror, I'm incurable, I'm malaise. By 9:30 I call the funniest and most supportive friend I think will be available for a distraction but I get voice mail. By 10:00 I break down with the nurse. I just can't take this anymore and I can't believe what I've done to myself. 12:00 am: 2 back to back Roseanne episodes aren't distracting enough and I'm drowning in self-pity. 12:10 am I walk across the hall to the office to type my frustrations. I don't know if I can survive another day like this...
Thursday, July 30, 2009
Friday, July 24, 2009
Day 0
Transplant day is July 24! The nurses and staff have "Happy Bday" posted on my visual chart. It is a new day, like Patti LaBelle declares, and I can't get that tune out of my head. My brother was up by 5:30 and he was being drilled and mutilated for his bone marrow by 10:00. Luckily they knocked him out but my mom said he seemed like he was in a lot of pain. She leaves for the day to take care of him an d make sure he is taken care of.
They simply transfuse his marrow through my Hickman Catheter as if it were blood.
Many people wondered how that works. My brother's marrow is placed into one of those plastic bags, like the ones found at blood drives and its disbursed into my blood stream. C'est finis!
They're continuously playing this movie in my $10/day television rental at Hopkins starring Ice Cube called "The Longshots". I absolutely love this movie. I believe it's a story that begins with believing in someone else to the point where you make them great and moves into a much greater theme of simply believing in yourself. I must've watched it 10 times already and still can't get enough. Simply Brilliant! I'm so grateful to be a part of this trial at Hopkins and am hoping to prove to be worthy enough of this blessing. To be cured of this disease is a longshot, but I believe -- in myself, in fate, in my destiny.
Thank you for reading.
Peace and Blessings,
Christina Madry
They simply transfuse his marrow through my Hickman Catheter as if it were blood.
Many people wondered how that works. My brother's marrow is placed into one of those plastic bags, like the ones found at blood drives and its disbursed into my blood stream. C'est finis!
They're continuously playing this movie in my $10/day television rental at Hopkins starring Ice Cube called "The Longshots". I absolutely love this movie. I believe it's a story that begins with believing in someone else to the point where you make them great and moves into a much greater theme of simply believing in yourself. I must've watched it 10 times already and still can't get enough. Simply Brilliant! I'm so grateful to be a part of this trial at Hopkins and am hoping to prove to be worthy enough of this blessing. To be cured of this disease is a longshot, but I believe -- in myself, in fate, in my destiny.
Thank you for reading.
Peace and Blessings,
Christina Madry
Thursday, July 23, 2009
Wolverine
I ask for your forgiveness in advance. I am on a heavy dose of narcotics to sedate me, therefore my words may not read clear. I will try my best.
It's been a fight since Monday but I am hanging in there. Surprisingly, I am doing well. The pain was a bit much for me to manage as an outpatient and it's taken the team at Hopkins about 3 days to get me to this point. I am quite grateful for my progress, however.
I was watching Wolverine again and there is dialogue between Logan and Dr. Carol Frost just before Striker makes Wolverine indestructible. It reads something like this:
Dr. Carol Frost: When it starts, whatever the reason is that you're doing this, focus on that.
Logan: Trust me, I've been through worse.
Dr. Carol Frost: No you haven't.
How apropos. I have never been through anything as bad as this experience. I constantly ask myself why I did this to myself but I just try to focus on my goal. Hopefully Dr. Frost's words will prove to be valuable.
Twas the night before my transplant and I am feeling many things.
Shame, for some of my old behaviors and the ways in which I under represented myself, my family or friendships. "Always do your best," is one of Don Miguel Ruiz' 4 personal agreements and I think my old self rarely did my best. Why? I believe when you grow up sickly, people automatically give you a pass. That or blonde. It's just a theory but something I hope to explore in the coming months. I cannot go forward with a pass. (I cannot believe I'm actually writing it down - now it's official.)
I am also ashamed for going through life so selfishly. People give of themselves through their occupation, community service or within their (nuclear) families daily. After receiving so much from the service of others as a sick individual, I would like to try to be there in the same manner when I return back to life. In the meantime, I'll have to sit back and continue to be the recipient of kind deeds but it doesn't make it any easier. If you're someone that has ever helped me, whether as a nurse or caring agent or just to give me words of encouragement I want to thank you. I don't say it enough and I hope to change that in the future.
Thank you for reading.
Peace and blessings,
Christina
It's been a fight since Monday but I am hanging in there. Surprisingly, I am doing well. The pain was a bit much for me to manage as an outpatient and it's taken the team at Hopkins about 3 days to get me to this point. I am quite grateful for my progress, however.
I was watching Wolverine again and there is dialogue between Logan and Dr. Carol Frost just before Striker makes Wolverine indestructible. It reads something like this:
Dr. Carol Frost: When it starts, whatever the reason is that you're doing this, focus on that.
Logan: Trust me, I've been through worse.
Dr. Carol Frost: No you haven't.
How apropos. I have never been through anything as bad as this experience. I constantly ask myself why I did this to myself but I just try to focus on my goal. Hopefully Dr. Frost's words will prove to be valuable.
Twas the night before my transplant and I am feeling many things.
Shame, for some of my old behaviors and the ways in which I under represented myself, my family or friendships. "Always do your best," is one of Don Miguel Ruiz' 4 personal agreements and I think my old self rarely did my best. Why? I believe when you grow up sickly, people automatically give you a pass. That or blonde. It's just a theory but something I hope to explore in the coming months. I cannot go forward with a pass. (I cannot believe I'm actually writing it down - now it's official.)
I am also ashamed for going through life so selfishly. People give of themselves through their occupation, community service or within their (nuclear) families daily. After receiving so much from the service of others as a sick individual, I would like to try to be there in the same manner when I return back to life. In the meantime, I'll have to sit back and continue to be the recipient of kind deeds but it doesn't make it any easier. If you're someone that has ever helped me, whether as a nurse or caring agent or just to give me words of encouragement I want to thank you. I don't say it enough and I hope to change that in the future.
Thank you for reading.
Peace and blessings,
Christina
Sunday, July 19, 2009
Chemo Jihad
Today was simply another day on my chemo jihad (jihad being Arabic for "struggle"). I took this self-portrait at Hopkins. I must wear this mask at all times because of the germs people so easily pass to one another. The only time I am permitted to remove it is in my house or in my station at the Cancer clinic, but then those around me must wear it. I was thinking today that my current struggles are two battles that conflict with each other, occurring at the same time. In one instance, I am having a Sickle Cell Crisis. To recover from this type of sickness, I must hydrate the body so that I can reproduce stronger red blood cells and raise my hemoglobin levels. I also can numb the pain with opiates, knowing that eventually my body will become stronger and I'll get back to normal. In another instance, I am taking chemotherapy drugs, whose goal in my body is to destroy, or at least temporarily disable, my immune system including bone marrow, red blood cells and white blood cells. So how is it that I can recover from my crisis while going through chemotherapy?
By Thursday, my body is to be in such a weakened state that I will be ready for my day of total body irradiation and by Friday, for my bone marrow transplant. To ponder this and just sit back and watch is even more interesting. I'm not worried. Even as I sit here with such an equation that only the divine laws of the human body can solve, I find myself fascinated. I can't wait to see how things will work themselves out...keep you posted.
Thank you for reading.
Peace and blessings,
Christina Madry
Saturday, July 18, 2009
Day -9 to -6 ATG: complete
I started ATG on Wednesday. It was bad. Real Bad. Michael Jackson.
The purpose of this blog is to take my family and friends through this experience but I'm not so sure you should endure everything with me. Diana Ross was always known for saying you have to talk about things -- get it out there. John Mayer with say what you need to say, but somehow it will not feel therapeutic for me to talk about this. ATG is one of those things you want to forget about and move onto a better part of your life -- quickly.
So what was this past week like? I had my Hickman catheter placed on Tuesday. It's a fairly simple procedure and the purpose of the Hickman is that it provides and "in" for the IV meds and chemotherapy drugs while providing an "out" for blood and other blood culture tests the medical staff needs to perform without poking you with a needle everytime. I have the "Power Hickman" which means I could go as far as having that colored material placed into the Hickman for various CAT scan tests. The following images were taken hours after my catheter was placed:
There is a line connected to my vein that runs under my skin. It is stitched to hold it into place (marked by the bandaid), while the other end is shown coming out of my skin with two lines extending from it. That's where all the magic happens.
The next day, Wednesday July 15, I began receiving ATG intravenously. The side effects I received from ATG, included, but were not limited to, chills, fever, high blood pressure, nausea, vomitting and exhaustion. I also went into a Sickle Cell Crisis, afterall, what would this disease be without leaving kicking and screaming. For that reason, I was admitted into the hospital. Too bad for the disease because I'm getting the last word in this time. So since Wednesday, I've been medicating for joint pain, living in the hospital and coping with any side effects of the ATG.
Saturday, I began Cytoxan and Fludarabine. This is what me and my catheter receiving chemo and a pint of blood (transfusion for the loss of red blood cells due to Sickle Cell crisis) looks like:
Yes it's that simple. The Fludarabine took about 30 minutes and the Cytoxan was approximately 60 minutes to funnel through the catheter. I will also receive my brother's marrow through the same facilities. Another interesting fact I forgot to mention: my bladder, and it's contents, are considered lethal. I must be very careful and ensure I drink plenty of fluids and that I wash pre- and post- bathroom trips.
The doctors say I have been through the worse part of it all with the medication ATG. I doubt that much is true, but they are making me feel better. The past three days have not been a walk in the park but I am ready for this, with the occassional emotional breakdown allowed. Again, I pray you are enjoying your summer and I'll see you on the other side of this..this...monumental occassion! I am beginning to feel quite tired, either from the joint pain medication, or from the chemoterapy. Either way my body is calling me to rest and I must listen.
Thank you for reading.
Peace and Blessings,
Christina Madry
The purpose of this blog is to take my family and friends through this experience but I'm not so sure you should endure everything with me. Diana Ross was always known for saying you have to talk about things -- get it out there. John Mayer with say what you need to say, but somehow it will not feel therapeutic for me to talk about this. ATG is one of those things you want to forget about and move onto a better part of your life -- quickly.
So what was this past week like? I had my Hickman catheter placed on Tuesday. It's a fairly simple procedure and the purpose of the Hickman is that it provides and "in" for the IV meds and chemotherapy drugs while providing an "out" for blood and other blood culture tests the medical staff needs to perform without poking you with a needle everytime. I have the "Power Hickman" which means I could go as far as having that colored material placed into the Hickman for various CAT scan tests. The following images were taken hours after my catheter was placed:
There is a line connected to my vein that runs under my skin. It is stitched to hold it into place (marked by the bandaid), while the other end is shown coming out of my skin with two lines extending from it. That's where all the magic happens.
The next day, Wednesday July 15, I began receiving ATG intravenously. The side effects I received from ATG, included, but were not limited to, chills, fever, high blood pressure, nausea, vomitting and exhaustion. I also went into a Sickle Cell Crisis, afterall, what would this disease be without leaving kicking and screaming. For that reason, I was admitted into the hospital. Too bad for the disease because I'm getting the last word in this time. So since Wednesday, I've been medicating for joint pain, living in the hospital and coping with any side effects of the ATG.
Saturday, I began Cytoxan and Fludarabine. This is what me and my catheter receiving chemo and a pint of blood (transfusion for the loss of red blood cells due to Sickle Cell crisis) looks like:
Yes it's that simple. The Fludarabine took about 30 minutes and the Cytoxan was approximately 60 minutes to funnel through the catheter. I will also receive my brother's marrow through the same facilities. Another interesting fact I forgot to mention: my bladder, and it's contents, are considered lethal. I must be very careful and ensure I drink plenty of fluids and that I wash pre- and post- bathroom trips.
The doctors say I have been through the worse part of it all with the medication ATG. I doubt that much is true, but they are making me feel better. The past three days have not been a walk in the park but I am ready for this, with the occassional emotional breakdown allowed. Again, I pray you are enjoying your summer and I'll see you on the other side of this..this...monumental occassion! I am beginning to feel quite tired, either from the joint pain medication, or from the chemoterapy. Either way my body is calling me to rest and I must listen.
Thank you for reading.
Peace and Blessings,
Christina Madry
Monday, July 13, 2009
T-minus 2 days
Relax. Take a deep breath. We have the answers you seek.
Anxiety is at an all-time high but the universe (God, Allah, Buddha or whatever you choose to call it) continues to send me messages. I am sitting here this evening bonding with Ira and Amy. I've had a rough couple of days. The doctors have inundated me with information and they can tell I'm losing it. Cancer will likely occur in the next 10 years! Menopause and belly weight gain! A stigmatism is likely to occur from the radiation! Ira yahoo's "stigmatism" and the first line reads:
Relax. Take a deep breath. We have the answers you seek.
Okay...if that's not the universe talking to me then I'll never get it. Still I can't help but think if I had been armed with all the information 6 months ago, I would have made the same decision. There is good news so I don't want to reflect on all things bad, but I must be honest and write down my current emotional state this evening.
Good news: All my doctors are incredibly optimistic and they say my current bill of health only contributes to their optimism. In fact, things are unusually in my favor. My brother is a 100% match and my health is abnormally good so I have been removed from the trial. It is simply a Mini Allogeneic BMT.
Bad news: I'm about to endure the worse 100 days of my life. Nothing can prepare me for it and the advice I'm receiving now is to take it day by day. I will try my best, but being the Cancer that I am, I can't help but worry and feel anxiety about this. I mean how does one psyche oneself out of something they know is coming at them and coming at them hard.
Cytoxan, the chemotherapy drug, is so powerful and potent a drug. It's purpose is to kill fast growing cells found in your body: bone marrow cells, hair cells and cells lining the gastrointestinal tract. Good and bad cells -- Cytoxan is going to kill it. Immediate side effects of Cytoxan include nausea and vomitting but it can also hurt the wall of your bladder. Long-term side effects include the lowering of your blood cells and platelets while very high doses can cause sterility and hair loss. Hair loss is temporary and usually grows back in a few months.
I begin receiving Cytoxan on Saturday but the immunosuppressant drug, ATG, begins on Wednesday. The purpose of ATG is to prevent rejection of my brother's marrow after the bone marrow transplant. ATG not only helps the body accept the transplanted marrow but it also decreases the body's harmful response to diseases affecting the immune system. Side effects I should expect include low platelet and white blood cell counts, dizziness, headache, nausea or vomitting and diarrhea.
It seems nausea and vomitting are imminent, while other side effects I pray skip over me. All this while I still have Sickle Cell Anemia. I'm not officially cured of SCA yet so I run the risk of going into crisis. The doctors say if that occurs then they will respond to any symptoms I have, but that I should expect the next 100 days to be quite difficult.
Again, I want to thank everyone for all the words of support and pray you are enjoying every blessing that life brings you. I will see you on the other side of this...
Thank you for reading.
Peace and blessings,
Christina Madry
Anxiety is at an all-time high but the universe (God, Allah, Buddha or whatever you choose to call it) continues to send me messages. I am sitting here this evening bonding with Ira and Amy. I've had a rough couple of days. The doctors have inundated me with information and they can tell I'm losing it. Cancer will likely occur in the next 10 years! Menopause and belly weight gain! A stigmatism is likely to occur from the radiation! Ira yahoo's "stigmatism" and the first line reads:
Relax. Take a deep breath. We have the answers you seek.
Okay...if that's not the universe talking to me then I'll never get it. Still I can't help but think if I had been armed with all the information 6 months ago, I would have made the same decision. There is good news so I don't want to reflect on all things bad, but I must be honest and write down my current emotional state this evening.
Good news: All my doctors are incredibly optimistic and they say my current bill of health only contributes to their optimism. In fact, things are unusually in my favor. My brother is a 100% match and my health is abnormally good so I have been removed from the trial. It is simply a Mini Allogeneic BMT.
Bad news: I'm about to endure the worse 100 days of my life. Nothing can prepare me for it and the advice I'm receiving now is to take it day by day. I will try my best, but being the Cancer that I am, I can't help but worry and feel anxiety about this. I mean how does one psyche oneself out of something they know is coming at them and coming at them hard.
Cytoxan, the chemotherapy drug, is so powerful and potent a drug. It's purpose is to kill fast growing cells found in your body: bone marrow cells, hair cells and cells lining the gastrointestinal tract. Good and bad cells -- Cytoxan is going to kill it. Immediate side effects of Cytoxan include nausea and vomitting but it can also hurt the wall of your bladder. Long-term side effects include the lowering of your blood cells and platelets while very high doses can cause sterility and hair loss. Hair loss is temporary and usually grows back in a few months.
I begin receiving Cytoxan on Saturday but the immunosuppressant drug, ATG, begins on Wednesday. The purpose of ATG is to prevent rejection of my brother's marrow after the bone marrow transplant. ATG not only helps the body accept the transplanted marrow but it also decreases the body's harmful response to diseases affecting the immune system. Side effects I should expect include low platelet and white blood cell counts, dizziness, headache, nausea or vomitting and diarrhea.
It seems nausea and vomitting are imminent, while other side effects I pray skip over me. All this while I still have Sickle Cell Anemia. I'm not officially cured of SCA yet so I run the risk of going into crisis. The doctors say if that occurs then they will respond to any symptoms I have, but that I should expect the next 100 days to be quite difficult.
Again, I want to thank everyone for all the words of support and pray you are enjoying every blessing that life brings you. I will see you on the other side of this...
Thank you for reading.
Peace and blessings,
Christina Madry
Friday, July 10, 2009
This Woman's Worth
What a week I have had! First things first, I had one last follow-up appointment with my cardiologist. I had to have an echo again because of the heart problems they detected while I was in the hospital in May. My cardiologist, Dr. Hailu, said she would give her recommendation for me to continue with the BMT, but she still wanted to look at what was going on with my heart. As was predicted, it is a slight issue -- a leaking valve, but most people, approximately 1 in 10 have this issue with their heart and it would not prove to be anything concerning.
During my time with specialists or doctors, I find myself involved in the most interesting conversations. I feel that everyone has a story to tell and maybe it's the reason why I find it so easy to socialize with people. I have a desire to know people's stories, or to share mine, and connect on an intimate level.
When I originally went to the heart specialist in November, this transplant was just an idea I read about in a magazine. When I told the heart specialist of my ambitions, she not only wished me the best of luck in my endeavors to get accepted into the trial, but ended up being one of those positive voices in my head that encouraged me to press on in my weakest moments.
This trip to the cardiology specialist was no less inspiring. I told her that, after 8 long months, I had been accepted and I begin my chemo on July 15. I also told her about my fertility experience and how I didn't have a donor -- how my faith is the only thing keeping me motivated to go through this thing knowing that I will be menopausal and infertile after. Even the feeling of saving eggs sometimes feels like I didn't do enough. I told her of the last minute scramble for a donor wasn't quite what I had expected of my experience with Hopkins, of not being armed with all the information for such an austere process, and how disappointing that was for me. I pray that I have read and researched enough so that the same kind of loophole won't find its way to my Bone Marrow Transplant.
She then shared her life story. How she married in her thirties and thanks God daily that she didn't have children with him as they divorced many years ago. She went on a blind date at 41 and knew at that moment she had met her husband. Six months later they were married and one year later she had their first and only son. They've lived a happy and loving life since. As a woman in her fifties, it was her gift to tell me that life is so unpredictably wonderful. That my life is about to change in ways I could not possibly imagine yet and everything that happened before this transplant will not only seem, but will also be, another lifetime ago.
I look forward to bringing with me, in this new life, all of the wonderful memories of the past 3 decades, but I also look forward to creating a new existence for myself. I take with me a few words of advice to live by that I've picked up from some of this centuries most amazing women:
Cathy Black: "The worst-case scenario is rarely as bad as you think."
Oprah Winfrey: "Worthiness is our birthright."
Suze Orman: "Happiness [is a quality of a wealthy woman]. When you're happy,
you don't spend your money on things you don't need."
Desiree Rogers: "Laissez le bon temps rouler!"
Carine Roitfield: "I don't know what I will do next but I cannot do the same for the next 10 years. I love to change."
Thank you for reading.
Peace and blessings,
Christina Madry
During my time with specialists or doctors, I find myself involved in the most interesting conversations. I feel that everyone has a story to tell and maybe it's the reason why I find it so easy to socialize with people. I have a desire to know people's stories, or to share mine, and connect on an intimate level.
When I originally went to the heart specialist in November, this transplant was just an idea I read about in a magazine. When I told the heart specialist of my ambitions, she not only wished me the best of luck in my endeavors to get accepted into the trial, but ended up being one of those positive voices in my head that encouraged me to press on in my weakest moments.
This trip to the cardiology specialist was no less inspiring. I told her that, after 8 long months, I had been accepted and I begin my chemo on July 15. I also told her about my fertility experience and how I didn't have a donor -- how my faith is the only thing keeping me motivated to go through this thing knowing that I will be menopausal and infertile after. Even the feeling of saving eggs sometimes feels like I didn't do enough. I told her of the last minute scramble for a donor wasn't quite what I had expected of my experience with Hopkins, of not being armed with all the information for such an austere process, and how disappointing that was for me. I pray that I have read and researched enough so that the same kind of loophole won't find its way to my Bone Marrow Transplant.
She then shared her life story. How she married in her thirties and thanks God daily that she didn't have children with him as they divorced many years ago. She went on a blind date at 41 and knew at that moment she had met her husband. Six months later they were married and one year later she had their first and only son. They've lived a happy and loving life since. As a woman in her fifties, it was her gift to tell me that life is so unpredictably wonderful. That my life is about to change in ways I could not possibly imagine yet and everything that happened before this transplant will not only seem, but will also be, another lifetime ago.
I look forward to bringing with me, in this new life, all of the wonderful memories of the past 3 decades, but I also look forward to creating a new existence for myself. I take with me a few words of advice to live by that I've picked up from some of this centuries most amazing women:
Cathy Black: "The worst-case scenario is rarely as bad as you think."
Oprah Winfrey: "Worthiness is our birthright."
Suze Orman: "Happiness [is a quality of a wealthy woman]. When you're happy,
you don't spend your money on things you don't need."
Desiree Rogers: "Laissez le bon temps rouler!"
Carine Roitfield: "I don't know what I will do next but I cannot do the same for the next 10 years. I love to change."
Thank you for reading.
Peace and blessings,
Christina Madry
Monday, July 6, 2009
Bucket List
Today started, what would end up being, a weekend with my family. The fourth of July is my great-grandmothers birthday. She was born July 4, 1900 and turned 109 this year. I'm exhausted at 33 -- so much respect to her. I was around family members all day Sunday but maybe I should've stayed home. I didn't feel completely welcome but I made the best of it. When indulging in a discussion I was asked, with all that I am to endure, how do I stay strong, where do I draw my strength from since it's not from my family? I reflected and realized I don't have a specific source. I do have friends who keep me sane. Some always check in or send little voice notes on the blackberry to keep me smiling. It definitely helps, but I internalize many things. What are my choices? I just don't have the opportunity to be vulnerable. I wish I could but that's not my reality. I would be remiss if I said I don't feel like I need a source. Everyone needs a shoulder to lean or cry on, or maybe its bigger than me and because its not tangible I didn't claim it at that moment. Now I will...Redemption!
Something funny has been developing in my relationships and I wish to share it with you. Whenever I apologize or do something apparently "outside of my character" in recent weeks, instinctively my friends or family label it "Bucket List". For my foreign friends, "Kicking the bucket" is an english idiom that refers to death and dying. Hence a "Bucket List" is something you wish to do before you die.
Let me just say I am 30+ and there comes a time when we need to grow up. Some of us are still in our second childhood yes, but not me. If I do something that I know is wrong, it is my responsibility to apologize. If I misjudged, hurt, ignored, was too impatient or was selfish, trust me I will realize it eventually and apologize. I am not perfect however, but shouldn't we all aspire to be? My point is: Can I just be maturing into a good person? Why does it have to be my "bucket list"? Jay-z said it best, "This ain't a movie dog!"
I just think it's insanely funny that people wait until death is knocking at their door to resolve things in their lives. I may be having a bone marrow transplant but death is not imminent. You may cross the street at 5:00 pm today and get hit by a bus. Will you feel like you lived a happy productive life that will be remembered? Or do you feel your lack of compassion, quest for wealth, or ambitions to achieve or be something that you are not is what will remain of your legacy? These are things that I pray we can all be aware of in our everyday lives.
I wrote down something a decade ago and my mom saved it after all these years. She just gave it to me last month and I find it to be quite apropos for this blog:
To laugh often and much,
to win the respect of intelligent people and
the affection of children,
to earn the appreciation of honest critics
and endure the betrayal of false friends,
to appreciate beauty,
to find the best in others,
to leave the world a bit better,
whether by a healthy child,
a garden patch...
to know even one life has breathed easier
because you have lived.
That is to have succeeded! - Emerson
Great, yes? So if I had a bucket list what would it be? Do I have any regrets? I have sat down and thought about things I wish to do once I gain a healthy life. Or things I wish I had been a part of. Some are funny but ALL are true. I hope you enjoy them (or join me for others).
1. Childbirth/Rearing a child
2. I wish I had seen the David LaChappelle exhibit at Monnai de Paris in May
3. Financial Freedom
4. I never aspired to model or act but I wish I had been a part of Lenny Kravitz' "Fly away" video! (Call me Lenny for the comeback video.)
5. Tandem: I will be jumping out of that plane in 2010! Who's with me?
6. Completing a half marathon.
7. Go to Tokyo and Singapore for a shopping trip.
8. Sailing for no less than 3 days.
9. A fine dining cooking class that includes dessert, preferably with a handsome man and a nice glass of perrier (or a skinny girl margarita) on ice. Three turn-ons in one night -- Heaven!
10. Visit New York, Africa and Europe with my nephew. (A place where you'll discover who you really are, A place where we came from and a place where they don't care and still love you.)
What would your list look like? Hopefully things that you can plan for and not things that you could do today but have chosen not to resolve.
Thank you for reading.
Peace and blessings,
Christina
Something funny has been developing in my relationships and I wish to share it with you. Whenever I apologize or do something apparently "outside of my character" in recent weeks, instinctively my friends or family label it "Bucket List". For my foreign friends, "Kicking the bucket" is an english idiom that refers to death and dying. Hence a "Bucket List" is something you wish to do before you die.
Let me just say I am 30+ and there comes a time when we need to grow up. Some of us are still in our second childhood yes, but not me. If I do something that I know is wrong, it is my responsibility to apologize. If I misjudged, hurt, ignored, was too impatient or was selfish, trust me I will realize it eventually and apologize. I am not perfect however, but shouldn't we all aspire to be? My point is: Can I just be maturing into a good person? Why does it have to be my "bucket list"? Jay-z said it best, "This ain't a movie dog!"
I just think it's insanely funny that people wait until death is knocking at their door to resolve things in their lives. I may be having a bone marrow transplant but death is not imminent. You may cross the street at 5:00 pm today and get hit by a bus. Will you feel like you lived a happy productive life that will be remembered? Or do you feel your lack of compassion, quest for wealth, or ambitions to achieve or be something that you are not is what will remain of your legacy? These are things that I pray we can all be aware of in our everyday lives.
I wrote down something a decade ago and my mom saved it after all these years. She just gave it to me last month and I find it to be quite apropos for this blog:
To laugh often and much,
to win the respect of intelligent people and
the affection of children,
to earn the appreciation of honest critics
and endure the betrayal of false friends,
to appreciate beauty,
to find the best in others,
to leave the world a bit better,
whether by a healthy child,
a garden patch...
to know even one life has breathed easier
because you have lived.
That is to have succeeded! - Emerson
Great, yes? So if I had a bucket list what would it be? Do I have any regrets? I have sat down and thought about things I wish to do once I gain a healthy life. Or things I wish I had been a part of. Some are funny but ALL are true. I hope you enjoy them (or join me for others).
1. Childbirth/Rearing a child
2. I wish I had seen the David LaChappelle exhibit at Monnai de Paris in May
3. Financial Freedom
4. I never aspired to model or act but I wish I had been a part of Lenny Kravitz' "Fly away" video! (Call me Lenny for the comeback video.)
5. Tandem: I will be jumping out of that plane in 2010! Who's with me?
6. Completing a half marathon.
7. Go to Tokyo and Singapore for a shopping trip.
8. Sailing for no less than 3 days.
9. A fine dining cooking class that includes dessert, preferably with a handsome man and a nice glass of perrier (or a skinny girl margarita) on ice. Three turn-ons in one night -- Heaven!
10. Visit New York, Africa and Europe with my nephew. (A place where you'll discover who you really are, A place where we came from and a place where they don't care and still love you.)
What would your list look like? Hopefully things that you can plan for and not things that you could do today but have chosen not to resolve.
Thank you for reading.
Peace and blessings,
Christina
Saturday, July 4, 2009
Day 3 pre-testing
11:45 am
Amy and I are so busy chatting and running illegal lights that we get pulled over by the cops. I'm going to be late! Fortunately it's a female cop who's understanding of the fact that we're going to Hopkins and let's us go.
12:12 pm
Dr. Brodsky is waiting in the patient room already. I tell him we got stopped by the cops (excuse #1) and he pretends to be entertained. First words: So are you ready to do this? My reply: Absolutely! He notices I cut my hair, something he warned me about during our initial consult. During that consult I expressed to him quite passionately that I didn't care about losing my hair and actually, this meeting shows him how committed I am to this transplant. I don't have anything to prove to Dr. Brodsky but, light bulb moment, I immediately feel how empowering (on so many levels) it is that I cut my hair off a month before my procedure instead of waiting for it to fall out from the chemo. He says I look great. Thanks doc! We talk for about 30 minutes and he clarifies any questions I have:
Madge: Is this procedure really going to be outpatient?
Dr. B: Yes it is. We've had success with Allogeneic Mini BMT's performed on the outpatient level. If any problems arise, such as an elevation in temperature, we'll immediately admit you into the hospital. Otherwise it's okay to go home to your own bed every night.
Madge: Recovery? I've been saying 6 months. How long can I truly expect to go through recovery?
Dr. B: Two months of a difficult recovery and by 3 months we'll know if you are grafting the new marrow from your brother. By the fourth month you should be getting back to yourself again.
Madge: That is great news. I've applied to graduate school in London, I know your answer is dependent on so many things that can not be predicted, but realistically speaking, is it a possibility to begin a program in January if I can commit to come home every 2 months?
Dr. B: You're right it does depend on many things. If the bone marrow successfully grafts, which I think your experience will be successful and if you're recovering well, it's a possibility, with a commitment to return every 8 weeks maximum to be away. However, if you acquire GVHD (graft v. host disease) where the marrow does not regenerate or if there are other complications, I would say definitely not. It's really too early to speculate.
Madge: Can we re-visit this conversation in October?
Dr. B: That might be more realistic.
Madge: Okay Dr. Brodsky thank you so much for everything! I'll see you July 15!
12:45 pm
I rush to call Ira on her way back from teaching. She usually gets back around 12:30. Serendipity! She's 10 minutes away and I catch a ride back to Amy's with her. Young and the Restless (Gasp! Sharon is having Nicholas' baby, but tells Jack it's his even though Nick left his wife to get back together with her and she's telling Nick today.), bday leftovers for lunch, a chat with the homies about M.J.'s death, the brilliance of "Remember the Time" video and how the news in America sucks. 3:30, I'm off to Hopkins again.
3:40 pm
I get off the elevator and I see my brother sitting in the lobby chatting it up with a BMT patient, Wanda, and her 8 year old nephew and donor, Wayne. Ironically my bro is telling them to come to his barber shop and he'll give them haircuts. Huh? Can I, your sister get one please? I've been bugging him for 2 weeks now. He's embarrassed and rightfully so.
My brother was there because he just received an aspiration. It is an extremely painful process to obtain a patients bone marrow, somewhere between a root canal and a gunshot wound. I've included a youTube tutorial of the process:
I did not know my brother had to experience that today. Although I feel incredibly sympathetic for him, we all could not stop laughing. The way he tells the story of his experience is priceless. Guess you had to be there, but you know what they say, "Humor is the instinct for taking pain playfully."
I'm off to my 4:00 BMT review class where apparently, I was supposed to bring my 24/7 care provider. Didn't know that before 4:05 but thanks anyway Hopkins. I learned interesting facts:
Interesting fact #1. Sicklers struggle more with grafting their bone marrow because we've had so many blood transfusions in our lifetime.
Interesting fact #2. When receiving a BMT and your donor is an unidentified match, African-American or Asian populations only stand a 50% chance of receiving a match through the registry whereas Caucasians have a 93% chance and Japanese have a 99% chance. Why? Because they've found that African-Americans or Asians are rarely genetically linked. So when I call a brother "a brother", or a sister "a sister" they really aren't? Say it ain't so!
Interesting fact #3. Allogeneic Mini-BMT's usually take longer to graft, approximately 2.5-4 weeks. (Allogeneic means I have a donor and Mini dictates that it involves less chemo or just enough to suppress the immune system.)
Interesting fact #4. 100% matched patients and donors, like myself, have less chemotherapy related issues (ie. mouth/oral sores, hair loss or risk of organ damage), lower risk of infections but are more likely to acquire graft v. host disease.
Finally my day is over! I'll be back at Hopkins July 9 for a cardiology exam. Heart issues but hopefully nothing too serious. :0)
Thank you for reading.
Peace and Blessings,
Christina Madry
Amy and I are so busy chatting and running illegal lights that we get pulled over by the cops. I'm going to be late! Fortunately it's a female cop who's understanding of the fact that we're going to Hopkins and let's us go.
12:12 pm
Dr. Brodsky is waiting in the patient room already. I tell him we got stopped by the cops (excuse #1) and he pretends to be entertained. First words: So are you ready to do this? My reply: Absolutely! He notices I cut my hair, something he warned me about during our initial consult. During that consult I expressed to him quite passionately that I didn't care about losing my hair and actually, this meeting shows him how committed I am to this transplant. I don't have anything to prove to Dr. Brodsky but, light bulb moment, I immediately feel how empowering (on so many levels) it is that I cut my hair off a month before my procedure instead of waiting for it to fall out from the chemo. He says I look great. Thanks doc! We talk for about 30 minutes and he clarifies any questions I have:
Madge: Is this procedure really going to be outpatient?
Dr. B: Yes it is. We've had success with Allogeneic Mini BMT's performed on the outpatient level. If any problems arise, such as an elevation in temperature, we'll immediately admit you into the hospital. Otherwise it's okay to go home to your own bed every night.
Madge: Recovery? I've been saying 6 months. How long can I truly expect to go through recovery?
Dr. B: Two months of a difficult recovery and by 3 months we'll know if you are grafting the new marrow from your brother. By the fourth month you should be getting back to yourself again.
Madge: That is great news. I've applied to graduate school in London, I know your answer is dependent on so many things that can not be predicted, but realistically speaking, is it a possibility to begin a program in January if I can commit to come home every 2 months?
Dr. B: You're right it does depend on many things. If the bone marrow successfully grafts, which I think your experience will be successful and if you're recovering well, it's a possibility, with a commitment to return every 8 weeks maximum to be away. However, if you acquire GVHD (graft v. host disease) where the marrow does not regenerate or if there are other complications, I would say definitely not. It's really too early to speculate.
Madge: Can we re-visit this conversation in October?
Dr. B: That might be more realistic.
Madge: Okay Dr. Brodsky thank you so much for everything! I'll see you July 15!
12:45 pm
I rush to call Ira on her way back from teaching. She usually gets back around 12:30. Serendipity! She's 10 minutes away and I catch a ride back to Amy's with her. Young and the Restless (Gasp! Sharon is having Nicholas' baby, but tells Jack it's his even though Nick left his wife to get back together with her and she's telling Nick today.), bday leftovers for lunch, a chat with the homies about M.J.'s death, the brilliance of "Remember the Time" video and how the news in America sucks. 3:30, I'm off to Hopkins again.
3:40 pm
I get off the elevator and I see my brother sitting in the lobby chatting it up with a BMT patient, Wanda, and her 8 year old nephew and donor, Wayne. Ironically my bro is telling them to come to his barber shop and he'll give them haircuts. Huh? Can I, your sister get one please? I've been bugging him for 2 weeks now. He's embarrassed and rightfully so.
My brother was there because he just received an aspiration. It is an extremely painful process to obtain a patients bone marrow, somewhere between a root canal and a gunshot wound. I've included a youTube tutorial of the process:
I did not know my brother had to experience that today. Although I feel incredibly sympathetic for him, we all could not stop laughing. The way he tells the story of his experience is priceless. Guess you had to be there, but you know what they say, "Humor is the instinct for taking pain playfully."
I'm off to my 4:00 BMT review class where apparently, I was supposed to bring my 24/7 care provider. Didn't know that before 4:05 but thanks anyway Hopkins. I learned interesting facts:
Interesting fact #1. Sicklers struggle more with grafting their bone marrow because we've had so many blood transfusions in our lifetime.
Interesting fact #2. When receiving a BMT and your donor is an unidentified match, African-American or Asian populations only stand a 50% chance of receiving a match through the registry whereas Caucasians have a 93% chance and Japanese have a 99% chance. Why? Because they've found that African-Americans or Asians are rarely genetically linked. So when I call a brother "a brother", or a sister "a sister" they really aren't? Say it ain't so!
Interesting fact #3. Allogeneic Mini-BMT's usually take longer to graft, approximately 2.5-4 weeks. (Allogeneic means I have a donor and Mini dictates that it involves less chemo or just enough to suppress the immune system.)
Interesting fact #4. 100% matched patients and donors, like myself, have less chemotherapy related issues (ie. mouth/oral sores, hair loss or risk of organ damage), lower risk of infections but are more likely to acquire graft v. host disease.
Finally my day is over! I'll be back at Hopkins July 9 for a cardiology exam. Heart issues but hopefully nothing too serious. :0)
Thank you for reading.
Peace and Blessings,
Christina Madry
Subscribe to:
Posts (Atom)