I like to think my blog is more about the emotional, introspective, thoughts of surviving cancer. But there are a few things you should take the time to look over this week...
As I'm sitting at Dana Farber, for some lovely treatment and EKG's. I'm reminded of a story from the Boston Globe, about the Ironworkers at Dana-Farber. They're constructing a new building here in Boston, for children with cancer (Yawkey Way for the Jimmy Fund Program). And, with each beam, they're spray painting the names of these children who are patients at DF, as they continue to build.. it's an absolutely beautiful and simple thing that they're doing.
Second, Hillary has yet again written an entry in her blog, if you have a minute. Take some time to read her feelings on disability discrimination on her February 27th entry, by clicking here. She writes about some pretty powerful stuff, for us kids, that are categorized, labeled, or point blank -- disabled because of illness, trauma, ect.
Lastly: for my shop-a-holics! This was brought to my attention by another hodge warrior, Kelly.
Apparently the GAP Banana Republic, and Old Navy have coupons for 30% off from March 12-15th. In turn 5% of your proceeds, when you go and buys some new clothes will go to the Leukemia and Lymphoma Society. Which is totally bankrupted right now, and they're having to turn people away left and right that have financial needs for patients. So, guys, go out and buy some new clothes! Click here for the coupon, and print it out. And PS - you can use the coupon as many times as you like, throughout the weekend, over and over again. How amazing is that?
Hope you all have a beautiful weekend,
Sending Love, love, love...
B!
Friday, February 27, 2009
Sunday, February 22, 2009
What if?
I recently wrote this on a Hodgkin's Support Board/Forum. The message is more or less for Hodgkin's warriors or any other cancer survivor battling their way through first or second-line treatment, with a hope of a cure.However, I do believe if you've experienced any traumatic event you will be able to relate to this post as well.
Also let it be known that without the knowledge of Sarah and Adrienne and Alison. I doubt I would be able to write the following...
(Refractory disease: those who are resistant to treatment or respond to treatment but the cancer continues to return, this is my type of disease.)
-----
Just as I was beginning to finish my six months of ABVD chemotherapy, Sarah Hawthorne (now a precious angel), posted a thread about relapse. In her own words, she said that if we were not facing relapse, we shouldn't think about it. That, it is a very small category of individuals, and that we should just live, LIVE, LIVE. After we completed treatment.
I took those words to heart, and at twenty two, only a month after my six months of chemo, moved back to my undergrad stomping grounds in Boston. Bald, scared, nervous, but ready to take on the world, a second grade teaching job, and master level classes. I was going to live. That's what Sarah said to do, so that is what I was going to do.
A lot of people struggle once completing their first line treatment. We worry, we have anxiety, the fears, the nightmares, and it's all understandable. I hear all of you when you say you're concerned, 'well what if it comes back?' I was completely guilty of those fears as well; however, something in Sarah's post motivated me to not let this disease entirely consume me. I had a choice. I could either, stay in my hometown with my family. And slowly, decide when to start my life again. Or, take life by the horns, and start now. I didn't focus on, if it would back. I did not question my doctors every visit. I made my choice. I was done, I moved, I left, and I began life.
I moved back to Boston in August of '07. I went out with friends, I started a job, I took four grad courses, I embraced Boston with everything I could, I tasted every day as if it was my last. And, I even had an incredible whirlwind romance that ended in the best friendship I could've dreamed of. All within a six month period. Did I think of cancer? Of course. Did i worry about it every day? No. Sarah told me not to. So, I pushed on. Looking back, without any hesitation, those five/six months were the best months of my entire life.
Six months after my last chemotherapy is January of '08 I relapsed. And within a quick, eight month period, I quit my job (for the second time), left school, my friends, the romance, my city, and fought for my life after undergoing a stem cell transplant. When August of '08 arrived, only sixty five days after transplant. I thought of Sarah. And , once again. I made a choice. I could either sit in my small home town and wonder.. what if I relapse again? What will I do if it comes back? How will I go on? Or, decide to not feel my neck every night, not focus on my scars, not question every bump or bruise on my body. And move back, to Boston.
Which is where I am typing these thoughts right now. There are a lot of new individuals who are going through first and second line-treatment on this board, and you will find this foruma wealth of information, the support is incredibly loving and kind hearted, and the friends you connect with, I guaratee will be some you will hold on to the rest of your lives. However, consequently, it is also a place, that introduces individuals who relapse, and relapse again, and that can cause some, concern. And the ability to form these anxious fears...
It turns out, at my hundred day scan. I did, in fact, relapse again. But my thoughts aren't here for you to read about being refractory. They are here for you, to carry with you, as I've carried Sarah's.
In life, we have many choices. Where we live. Our professions. Our partners. Friends. Where we decide to educate ourselves. But, there are some things we do not have any control over. Our disease, our staging, specific treatments. The point being. I hear a lot of ou... when you say, 'I can't stop worrying, it's just not that easy.' Trust me, I've been there. And, I recognize that none of this is easy. None of it.
I know, how hard this is. I know what it is like after six months of chemotherapy, feeling defeated, worn down, broken hearted, lost, scared, and questioning yourself, your beliefs, and possibly your faith. I have felt and experienced all of it. I know what it is like to scramble for finances, to lose sleep over health insurance, to wonder - truthfully and honestly how much time do I have left? I have been there, good g-d, I have been there.
However because of other refractory warriors. I have learned from the beginning - at the young, immature, age of twenty two. That, we all have choices. Remember: We do not have any control of our disease, but we DO have control over how we react to it. In my eyes, it is your choice what to do with your thoughts, and actions after you have completed treatment. Think, worry, overanalyze? Or focus on what can be done, what you can acheive, where you can go, and what you do now...
Sarah was right. We are a small group. The relapse and refractory. And I truly wish none of you take this path. But, these are lessons I learned two years ago. In my own head, if I allowed the fears of cancer to rule my life - it won. The disease itself might not have won physically, but emotionally, if I let it control a majority of my thoughts. It won. And, I don't like to lose.
This note is not meant to hurt, or offend anyone. More or less it is meant to open up your eyes. I know, I am only twenty four. There are things I have yet to experience, and I know for some of you.. you're thinking in your head. Well, she doesn't have a family or kids.
And you are right. I do not have a partner. I do not have children, that might be left behind. But, I am a young adult, with incredibly close family, friends that would take a bullet for me, health insurance to constantly worry about, and bills to be met. I have responsibilities, I live on my own, and I have made these choices, more or less with my family's blessings opposed to their own feelings. I understand the feeling of wanting to ask everyone... 'Well what if it comes back? What will we do? How will we cope? How am I going to financially, medically, physically, and emotionally survive?'
Cancer is frightening. It's scary. Relapse, is no one's cup of tea. And refractory...is absolutely bone-chilling. But, if you take anything from this, or me, or Sarah. Know that if you are not living it NOW. Do not let it consume you NOW. Those questions, 'What if it comes back?' Well it hasn't. And most likely. It won't. And that's where you get to make your choice. If a stubborn, twenty two year old... can put these thoughts aside. You can too. If a twenty three year old can battle through transplant, and then move six hours away from home... You can too. If a twenty four year old can live with cancer inside of them, and continue on with school, life and not have cancer be every single thought of their day.
You can too.
You have a choice. And yes, I realize it takes time. And yes, I believe everyone has to process this disease in their own way. But, at some point when you have completed your first or second line treatment, you will be faced with a fork in the road: to worry or not. To let it consume you, or not. To let these anxieties eat you alive, or get therapy. To lay awake at night wondering 'what if?' or to live now.
So, my message, I guess is this: Our hope is that your anxieties and worrying minds, lessen over time. And when you are faced with the decision to stay in your home-town, and dwell on cancer, or take life by the horns and move to Boston.
I hope you join me in Boston.
---
Sending you love, love love...
B
Also let it be known that without the knowledge of Sarah and Adrienne and Alison. I doubt I would be able to write the following...
(Refractory disease: those who are resistant to treatment or respond to treatment but the cancer continues to return, this is my type of disease.)
-----
Just as I was beginning to finish my six months of ABVD chemotherapy, Sarah Hawthorne (now a precious angel), posted a thread about relapse. In her own words, she said that if we were not facing relapse, we shouldn't think about it. That, it is a very small category of individuals, and that we should just live, LIVE, LIVE. After we completed treatment.
I took those words to heart, and at twenty two, only a month after my six months of chemo, moved back to my undergrad stomping grounds in Boston. Bald, scared, nervous, but ready to take on the world, a second grade teaching job, and master level classes. I was going to live. That's what Sarah said to do, so that is what I was going to do.
A lot of people struggle once completing their first line treatment. We worry, we have anxiety, the fears, the nightmares, and it's all understandable. I hear all of you when you say you're concerned, 'well what if it comes back?' I was completely guilty of those fears as well; however, something in Sarah's post motivated me to not let this disease entirely consume me. I had a choice. I could either, stay in my hometown with my family. And slowly, decide when to start my life again. Or, take life by the horns, and start now. I didn't focus on, if it would back. I did not question my doctors every visit. I made my choice. I was done, I moved, I left, and I began life.
I moved back to Boston in August of '07. I went out with friends, I started a job, I took four grad courses, I embraced Boston with everything I could, I tasted every day as if it was my last. And, I even had an incredible whirlwind romance that ended in the best friendship I could've dreamed of. All within a six month period. Did I think of cancer? Of course. Did i worry about it every day? No. Sarah told me not to. So, I pushed on. Looking back, without any hesitation, those five/six months were the best months of my entire life.
Six months after my last chemotherapy is January of '08 I relapsed. And within a quick, eight month period, I quit my job (for the second time), left school, my friends, the romance, my city, and fought for my life after undergoing a stem cell transplant. When August of '08 arrived, only sixty five days after transplant. I thought of Sarah. And , once again. I made a choice. I could either sit in my small home town and wonder.. what if I relapse again? What will I do if it comes back? How will I go on? Or, decide to not feel my neck every night, not focus on my scars, not question every bump or bruise on my body. And move back, to Boston.
Which is where I am typing these thoughts right now. There are a lot of new individuals who are going through first and second line-treatment on this board, and you will find this foruma wealth of information, the support is incredibly loving and kind hearted, and the friends you connect with, I guaratee will be some you will hold on to the rest of your lives. However, consequently, it is also a place, that introduces individuals who relapse, and relapse again, and that can cause some, concern. And the ability to form these anxious fears...
It turns out, at my hundred day scan. I did, in fact, relapse again. But my thoughts aren't here for you to read about being refractory. They are here for you, to carry with you, as I've carried Sarah's.
In life, we have many choices. Where we live. Our professions. Our partners. Friends. Where we decide to educate ourselves. But, there are some things we do not have any control over. Our disease, our staging, specific treatments. The point being. I hear a lot of ou... when you say, 'I can't stop worrying, it's just not that easy.' Trust me, I've been there. And, I recognize that none of this is easy. None of it.
I know, how hard this is. I know what it is like after six months of chemotherapy, feeling defeated, worn down, broken hearted, lost, scared, and questioning yourself, your beliefs, and possibly your faith. I have felt and experienced all of it. I know what it is like to scramble for finances, to lose sleep over health insurance, to wonder - truthfully and honestly how much time do I have left? I have been there, good g-d, I have been there.
However because of other refractory warriors. I have learned from the beginning - at the young, immature, age of twenty two. That, we all have choices. Remember: We do not have any control of our disease, but we DO have control over how we react to it. In my eyes, it is your choice what to do with your thoughts, and actions after you have completed treatment. Think, worry, overanalyze? Or focus on what can be done, what you can acheive, where you can go, and what you do now...
Sarah was right. We are a small group. The relapse and refractory. And I truly wish none of you take this path. But, these are lessons I learned two years ago. In my own head, if I allowed the fears of cancer to rule my life - it won. The disease itself might not have won physically, but emotionally, if I let it control a majority of my thoughts. It won. And, I don't like to lose.
This note is not meant to hurt, or offend anyone. More or less it is meant to open up your eyes. I know, I am only twenty four. There are things I have yet to experience, and I know for some of you.. you're thinking in your head. Well, she doesn't have a family or kids.
And you are right. I do not have a partner. I do not have children, that might be left behind. But, I am a young adult, with incredibly close family, friends that would take a bullet for me, health insurance to constantly worry about, and bills to be met. I have responsibilities, I live on my own, and I have made these choices, more or less with my family's blessings opposed to their own feelings. I understand the feeling of wanting to ask everyone... 'Well what if it comes back? What will we do? How will we cope? How am I going to financially, medically, physically, and emotionally survive?'
Cancer is frightening. It's scary. Relapse, is no one's cup of tea. And refractory...is absolutely bone-chilling. But, if you take anything from this, or me, or Sarah. Know that if you are not living it NOW. Do not let it consume you NOW. Those questions, 'What if it comes back?' Well it hasn't. And most likely. It won't. And that's where you get to make your choice. If a stubborn, twenty two year old... can put these thoughts aside. You can too. If a twenty three year old can battle through transplant, and then move six hours away from home... You can too. If a twenty four year old can live with cancer inside of them, and continue on with school, life and not have cancer be every single thought of their day.
You can too.
You have a choice. And yes, I realize it takes time. And yes, I believe everyone has to process this disease in their own way. But, at some point when you have completed your first or second line treatment, you will be faced with a fork in the road: to worry or not. To let it consume you, or not. To let these anxieties eat you alive, or get therapy. To lay awake at night wondering 'what if?' or to live now.
So, my message, I guess is this: Our hope is that your anxieties and worrying minds, lessen over time. And when you are faced with the decision to stay in your home-town, and dwell on cancer, or take life by the horns and move to Boston.
I hope you join me in Boston.
---
Sending you love, love love...
B
Monday, February 9, 2009
No words, just love.
Just shy of his one year (allo transplant) re-birthday. Fellow Hodgkin's fighter, Tyler Chambers, only a freshmen in college, suddenly passed away this weekend.
His mother, Kelly, writes....
After a three year long battle with Hodgkins Lymphoma, Tyler passed away suddenly Saturday night around 6:00pm.
Tyler was always a fighter but couldn't fight what ever took him from us Saturday.
Please visit Tyler's Blog, by clicking here.
To send your love, condolences, and thoughts to Kelly and the rest of her family, in which you can leave a comment on their blog.
My heart is with you Kelly,
I have no words,
just sending love.
- B
His mother, Kelly, writes....
After a three year long battle with Hodgkins Lymphoma, Tyler passed away suddenly Saturday night around 6:00pm.
Tyler was always a fighter but couldn't fight what ever took him from us Saturday.
Please visit Tyler's Blog, by clicking here.
To send your love, condolences, and thoughts to Kelly and the rest of her family, in which you can leave a comment on their blog.
My heart is with you Kelly,
I have no words,
just sending love.
- B
Thursday, February 5, 2009
How do you live with chronic cancer?
Throughout the last few months, I have been thinking, carefully. About this topic. About the beautiful, kind-hearted , soulful individuals who fall into this unforunate category.
Recently, after disclosing my disease to a class mate of mine, in one of my grad classes. She asked me, so how long do you have to straddle between both worlds, the world of normalcy and the world of disease. When, would treatment be over?
And, without hesitation, I told her never.
Most likely, I will have treatment the rest of my life.
And I began to think, about this population. Knowing, I'm no where close to being the only one in these shoes. That, somewhere, out there, while you are walking the streets. Picking up coffee, dropping your kids off at school, or sitting next to someone in class. You will cross paths with these individuals, individuals like me, who are somehow fixed between two worlds, attempting to survive, to move forward, to live. While managing a chronic illness. You think to yourself, that you could never do it. You could even comprehend, or imagine, what a future of drugs, and tests, and needles could be like. Trust me, I don't want you to.
But, there is also something else that you could never comprehend or imagine either. The drive. The desire. The passion. To suck, every bit of marrow out of life. In a world where people ask, 'how do you see yourself living in ten years?' I want to laugh, at them, and tell them. That, they know nothing. About life. Or the present. Or the beauty of now. I want to tell them, that I know the secrets. I know, more, about this, then them. I want to tell them as they look at my bright blue eyes, curls, and healthy laugh, that they have no idea. They have no idea.
I want to tell them, to stop thinking of three months, six months, two years. I want to tell them, to embrace today. I want to tell them a lot of things.
-
A few weeks ago, I had a dinner, with a beautiful couple in Ohio. The young woman, tried to convey how although she would never wish to have such a devastating illness, herself, or anyone around her, she desired this thinking. The mindset that everyone always 'claims' to have, but truly do not. The mindset, of living each day, till the last minute. And for every second within that minute. The mindset, in which we talk the talk, but trip and stumble when we actually attempt to walk the walk. And, its within these realities, that I realize, this is something, not many people, experience.
I live, with a cancer, that most likely will never be cured.
I live, with a disease, that might one day kill me. Or, the treatment, will kill me.
I live, with this, every day, of my life.
These are my realities.
I endure, pain, and discomfort, and instability, and honest to god, heartbreak, wrenching, tear-your-soul-out-heartbreak. From living with my own disease, and watching, for the last two years, and years to come, the devastation of cancer, illness and death. However, because of these factors. Because of this extreme. Somehow, my head and fragile heart creates another one, to somehow balance my world.
I experience pain.
therefore, I experience, beauty.
Just as my cancer, remains a consistent fear, during most parts of my life. So, does the love, that burns, deep within me, for individuals in my life. It is a deep, dark, secret of mine, but one, I finally wish to share. The notion that, I adore the people in my life, and love them, in ways, I did not even know existed. Therefore, I make it a point, to let, those people -- whether they be the sick, the healthy, or the inbetween. I let them know, how deep, my love, burns for them. Because for me, being honest, showing how much I care, and love, and adore others, calling out their beauty, their perfect uniqueness that no one else in this world can claim -- these are no longer my fears.
In truth, it is only cancer, I will allow myself to fear.
Which in turn, gives me the strength, to embrace
every day, every hour, every minute
and deeply love, every individual in both of my worlds --
as I continue to straddle, between them.
-
Today, I hope you take the time, to hug the ones you love.
B
Recently, after disclosing my disease to a class mate of mine, in one of my grad classes. She asked me, so how long do you have to straddle between both worlds, the world of normalcy and the world of disease. When, would treatment be over?
And, without hesitation, I told her never.
Most likely, I will have treatment the rest of my life.
And I began to think, about this population. Knowing, I'm no where close to being the only one in these shoes. That, somewhere, out there, while you are walking the streets. Picking up coffee, dropping your kids off at school, or sitting next to someone in class. You will cross paths with these individuals, individuals like me, who are somehow fixed between two worlds, attempting to survive, to move forward, to live. While managing a chronic illness. You think to yourself, that you could never do it. You could even comprehend, or imagine, what a future of drugs, and tests, and needles could be like. Trust me, I don't want you to.
But, there is also something else that you could never comprehend or imagine either. The drive. The desire. The passion. To suck, every bit of marrow out of life. In a world where people ask, 'how do you see yourself living in ten years?' I want to laugh, at them, and tell them. That, they know nothing. About life. Or the present. Or the beauty of now. I want to tell them, that I know the secrets. I know, more, about this, then them. I want to tell them as they look at my bright blue eyes, curls, and healthy laugh, that they have no idea. They have no idea.
I want to tell them, to stop thinking of three months, six months, two years. I want to tell them, to embrace today. I want to tell them a lot of things.
-
A few weeks ago, I had a dinner, with a beautiful couple in Ohio. The young woman, tried to convey how although she would never wish to have such a devastating illness, herself, or anyone around her, she desired this thinking. The mindset that everyone always 'claims' to have, but truly do not. The mindset, of living each day, till the last minute. And for every second within that minute. The mindset, in which we talk the talk, but trip and stumble when we actually attempt to walk the walk. And, its within these realities, that I realize, this is something, not many people, experience.
I live, with a cancer, that most likely will never be cured.
I live, with a disease, that might one day kill me. Or, the treatment, will kill me.
I live, with this, every day, of my life.
These are my realities.
I endure, pain, and discomfort, and instability, and honest to god, heartbreak, wrenching, tear-your-soul-out-heartbreak. From living with my own disease, and watching, for the last two years, and years to come, the devastation of cancer, illness and death. However, because of these factors. Because of this extreme. Somehow, my head and fragile heart creates another one, to somehow balance my world.
I experience pain.
therefore, I experience, beauty.
Just as my cancer, remains a consistent fear, during most parts of my life. So, does the love, that burns, deep within me, for individuals in my life. It is a deep, dark, secret of mine, but one, I finally wish to share. The notion that, I adore the people in my life, and love them, in ways, I did not even know existed. Therefore, I make it a point, to let, those people -- whether they be the sick, the healthy, or the inbetween. I let them know, how deep, my love, burns for them. Because for me, being honest, showing how much I care, and love, and adore others, calling out their beauty, their perfect uniqueness that no one else in this world can claim -- these are no longer my fears.
In truth, it is only cancer, I will allow myself to fear.
Which in turn, gives me the strength, to embrace
every day, every hour, every minute
and deeply love, every individual in both of my worlds --
as I continue to straddle, between them.
-
Today, I hope you take the time, to hug the ones you love.
B
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