...life is easier on me, most of the time.
As always, I so appreciate the positive vibes and energy you all send my way during scan time. I completely believe in those healing vibes and since I'm feeling so wonderful physically, I know that my body IS in fact receiving them.
Although my blood counts, weight, and body show zero signs of symptoms or cancer related issues -- the scan did not show what we had hoped. There is definite progression of nodes, a few new nodes, ranging from 1-3cm's and SUV's between 7-9. Nothing to be too worried about, but nothing to celebrate either.
Our next steps are to have Dr. O, Dr. Zain (NYC) and Dr. Bollard (Houston) discuss if this is too much progession to attempt a different arm of the EBV+ vaccine down in Texas. We won't know for sure what the next steps will be for another week; however, we have a plan A, B and C as always.
Although I'm back in the ring, I have all the confidence in the world through my oncology teams, my family, my partner and I that this will only be another small bump in the road and life will continue on to be semi-normal as I approach my last year of Grad School, and finish off my long awaited internships.
Will update when I have more information and a plan is in place.
Sending all of you love and light, as always.
And remember to hug the ones you love today, and everyday.
xoxo,
B!
isn't she aware that life (who never grows old) is always beautiful, and that nobody beautiful ever hurries?
Friday, August 19, 2011
Saturday, August 13, 2011
Inside the mind
If you sat down with one hundred cancer patients I can garentee you they would all agree with a similar emotion when it comes to the days approaching a PET/CT scan...
In truth, the days or sometimes even weeks before scan time can create the most anxiety-ridden, insane thought process of even the most logical and rational individuals out there. Although I find myself fairly well-balanced emotionally, I am no different from those who jump off the deep end and belly flop into the insanity pool, sometimes even taking observers with me.
Whether you live in three month incremental scans, as I do, or once a year the emotions and turmoil that occur inside the mind of a cancer patient can be difficult to understand. A reason, I felt the need to write this post. Although I can not speak on behalf of all cancer patients, I can tell you that the days before and after a scan are my most unstable and inconsistent in my mind, soul, and identity. In turn, these are the things that happen:
1) Thinkers (such as myself) tend to over-analyze during these days. I find myself not only thinking of what the scan may reveal but how A) my family will react, B) my partner will react C) my friends will react and D) how my school/work enviornment will react. I take it a step further but think of the outcomes -- if it is a good scan: how will I feel (where major survivors guilt comes into play) if it is a poor scan: what are my options? I think about the latest research, what friend of mine is on what trial and is it available on the east coast, where I will fit in different treatments, and what toxicity level am I willing to endure this time around. I also contemplate: how should I spin this story so everyone will feel okay with my results and be confident that I will be fine? Without even knowing the results my brain will go into a tail spin and all confidence of a semi-normal life and a future appears it can be ripped away with in an instant, and the stable rug I have been standing on the last six months will be taken out from under me. It is mentally exhausting and emotionally draining and it's hard. But these are things that I need to think about to prepare for what is to come.
2) Putting up walls. During the week before and after scans I tend to emotionally isolate myself (and others) for protection. For many reasons. Reasons due to not wanting to answer how I feel or what I think the scan will be -- because especially during this week, I have no clue. Questions regarding what my next steps will be (because without knowing how big or small the cancer is, I can't tell you yet). Protection from normalcy. During scan time is the week before or after that I truly recognize I am not a normal twenty-seven year old, when placed in a normal scene at a bar, party, or even just having coffee with friends I compare -- and it is awful. I think of how different my life is and although I attempt with all my might not to throw a small pity party, I recognize that here I am after five years of treatment, mentally hoping that I do not have to receive more toxic chemo. Because, although I can accept this life and live it well, and although it all makes me stronger, it would be nice not to have toxic drugs flow through my veins for the rest of my life. Therefore, walls go up.
In addition, I try to pull myself away from social situations and want to reflect and probably become a bit too introspective. Promised phone calls and social dates are usually canceled last minute with lots of apologies later, and I tend to crawl into my safe shell for a matter of days. But, those that come near me, or push too hard emotionally the week before or after (which are usually the ones I care for the most) are the ones that tend to crack this shell and watch frustration, sadness or disappointment pour out of me. I attempt to keep these walls up for a reason, I am vulnerable, I am a bit crazy, and still waters run very deep during this time. To be pushed or prodded, even if it is something unrelated to cancer can result in destruction. With most individuals, we tend to act out or (unintentionally) hurt those we love the most because we feel safe with them. We can yell, scream, and lash out because we know they are loyal, loving, family and friends that get it. But, it still does not make it better, easier, or acceptable. I am well-known for these moments during close proximity to my scans, and I always feel terrible at the end of these two or three weeks when all is said and done, so therefore, walls are needed. No matter how much friends and family say 'it is okay... to break down, or let go...' it is never easy, and along with the emotional drain from my own experiences I tend to feel guilty for expresssing myself in an inappropriate way afterward. Unfortunately, it is not healthy for either party -- but sometimes, you do what you have to do to get through, you do the best you can do and sometimes that has to be enough. I am lucky that those around me understand this dynamic, and hope if you are a caregiver you understand that sometimes this is how cancer warriors tend to think, this is how we survive.
3) Lastly and most importantly is that vulnerability is a huge component during scan-time. During these days of introspection the things I think about the most are my relationships. I carefully go through mental photographs in my mind of my best friends, my partner, my past relationships, family and how much I care for each of them. I find myself during these days thinking of specific people who are close to me that I could not imagine living without, in the car driving, or cooking, and all of a sudden as if a small emotional button was softly pushed tears of love will come pouring out. I find myself listening to a certain song on a long drive and thinking about an individual: have I told them I love them this week? What could I send them in the mail? I wish I could show them how much I deeply and truly care for them without them thinking "There goes Bekah again... being deep again... " Scan time is a horrible mix of vulnerability and protection, thoughts of what more I can do in my relationships and friendships circulate, and just like a carousel I end up going around, jumping from one person to another in my mind hoping they know how much they mean to me, and how grateful I am to have them in my life, and how amazing I think they are as an individual. And, at the end of most days I am so overwhelmed not only by my thoughts but the knowledge that I am surrounded by so much love that I always think: how the hell did I get so lucky?
As you can see all of these conflicting, raw, and vulnerable thoughts can continue on for days or even weeks at a time depending on who you speak to. I am fortunate that I have narrowed these moments down to a week before and after my scans; but, none of this is easy. I would never wish anyone to understand these days -- because to do that you would have to experience cancer yourself; however, I hope these words at least offer some guidance and insight inside the mind of other warriors and myself.
In turn, it is during these days (leading up to my scan this Thursday the 18th) that I want to thank those who support, comfort, and allow me to be crazy, knowing that I will resurface to normalcy soon. It is because of these individuals who see my tears of pain that coincidentally also cause tears of gratitude during my long drives on summer afternoons in the days leading up to that inevitable scan.
Love and Light,
B.
we feel crazy.
In truth, the days or sometimes even weeks before scan time can create the most anxiety-ridden, insane thought process of even the most logical and rational individuals out there. Although I find myself fairly well-balanced emotionally, I am no different from those who jump off the deep end and belly flop into the insanity pool, sometimes even taking observers with me.
Whether you live in three month incremental scans, as I do, or once a year the emotions and turmoil that occur inside the mind of a cancer patient can be difficult to understand. A reason, I felt the need to write this post. Although I can not speak on behalf of all cancer patients, I can tell you that the days before and after a scan are my most unstable and inconsistent in my mind, soul, and identity. In turn, these are the things that happen:
1) Thinkers (such as myself) tend to over-analyze during these days. I find myself not only thinking of what the scan may reveal but how A) my family will react, B) my partner will react C) my friends will react and D) how my school/work enviornment will react. I take it a step further but think of the outcomes -- if it is a good scan: how will I feel (where major survivors guilt comes into play) if it is a poor scan: what are my options? I think about the latest research, what friend of mine is on what trial and is it available on the east coast, where I will fit in different treatments, and what toxicity level am I willing to endure this time around. I also contemplate: how should I spin this story so everyone will feel okay with my results and be confident that I will be fine? Without even knowing the results my brain will go into a tail spin and all confidence of a semi-normal life and a future appears it can be ripped away with in an instant, and the stable rug I have been standing on the last six months will be taken out from under me. It is mentally exhausting and emotionally draining and it's hard. But these are things that I need to think about to prepare for what is to come.
2) Putting up walls. During the week before and after scans I tend to emotionally isolate myself (and others) for protection. For many reasons. Reasons due to not wanting to answer how I feel or what I think the scan will be -- because especially during this week, I have no clue. Questions regarding what my next steps will be (because without knowing how big or small the cancer is, I can't tell you yet). Protection from normalcy. During scan time is the week before or after that I truly recognize I am not a normal twenty-seven year old, when placed in a normal scene at a bar, party, or even just having coffee with friends I compare -- and it is awful. I think of how different my life is and although I attempt with all my might not to throw a small pity party, I recognize that here I am after five years of treatment, mentally hoping that I do not have to receive more toxic chemo. Because, although I can accept this life and live it well, and although it all makes me stronger, it would be nice not to have toxic drugs flow through my veins for the rest of my life. Therefore, walls go up.
In addition, I try to pull myself away from social situations and want to reflect and probably become a bit too introspective. Promised phone calls and social dates are usually canceled last minute with lots of apologies later, and I tend to crawl into my safe shell for a matter of days. But, those that come near me, or push too hard emotionally the week before or after (which are usually the ones I care for the most) are the ones that tend to crack this shell and watch frustration, sadness or disappointment pour out of me. I attempt to keep these walls up for a reason, I am vulnerable, I am a bit crazy, and still waters run very deep during this time. To be pushed or prodded, even if it is something unrelated to cancer can result in destruction. With most individuals, we tend to act out or (unintentionally) hurt those we love the most because we feel safe with them. We can yell, scream, and lash out because we know they are loyal, loving, family and friends that get it. But, it still does not make it better, easier, or acceptable. I am well-known for these moments during close proximity to my scans, and I always feel terrible at the end of these two or three weeks when all is said and done, so therefore, walls are needed. No matter how much friends and family say 'it is okay... to break down, or let go...' it is never easy, and along with the emotional drain from my own experiences I tend to feel guilty for expresssing myself in an inappropriate way afterward. Unfortunately, it is not healthy for either party -- but sometimes, you do what you have to do to get through, you do the best you can do and sometimes that has to be enough. I am lucky that those around me understand this dynamic, and hope if you are a caregiver you understand that sometimes this is how cancer warriors tend to think, this is how we survive.
3) Lastly and most importantly is that vulnerability is a huge component during scan-time. During these days of introspection the things I think about the most are my relationships. I carefully go through mental photographs in my mind of my best friends, my partner, my past relationships, family and how much I care for each of them. I find myself during these days thinking of specific people who are close to me that I could not imagine living without, in the car driving, or cooking, and all of a sudden as if a small emotional button was softly pushed tears of love will come pouring out. I find myself listening to a certain song on a long drive and thinking about an individual: have I told them I love them this week? What could I send them in the mail? I wish I could show them how much I deeply and truly care for them without them thinking "There goes Bekah again... being deep again... " Scan time is a horrible mix of vulnerability and protection, thoughts of what more I can do in my relationships and friendships circulate, and just like a carousel I end up going around, jumping from one person to another in my mind hoping they know how much they mean to me, and how grateful I am to have them in my life, and how amazing I think they are as an individual. And, at the end of most days I am so overwhelmed not only by my thoughts but the knowledge that I am surrounded by so much love that I always think: how the hell did I get so lucky?
[Annual Furey-Cousin Beach Photo]
Because I am -- so incredibly lucky for those who choose to be in my life.
As you can see all of these conflicting, raw, and vulnerable thoughts can continue on for days or even weeks at a time depending on who you speak to. I am fortunate that I have narrowed these moments down to a week before and after my scans; but, none of this is easy. I would never wish anyone to understand these days -- because to do that you would have to experience cancer yourself; however, I hope these words at least offer some guidance and insight inside the mind of other warriors and myself.
In turn, it is during these days (leading up to my scan this Thursday the 18th) that I want to thank those who support, comfort, and allow me to be crazy, knowing that I will resurface to normalcy soon. It is because of these individuals who see my tears of pain that coincidentally also cause tears of gratitude during my long drives on summer afternoons in the days leading up to that inevitable scan.
Love and Light,
B.
Thursday, August 4, 2011
Life-force
I began this summer semester in a remission, with one of my courses being Bereavement Counseling. I am conditioned and familiar with clients who are alive, understanding and trying to comprehend the complexity and dynamics these individuals have with remaining, alive, family members, friends, and peers. However, I wanted to delve deeper into the souls of survivors of lost ones. I also, selfishly, knew this was a course I needed for myself. I was ready to approach death (while being in remission), and as I see more of my friends pass away, I wanted to understand from every single lens how to make this better, easier, for the survivors of people who've passed.
But the cold hard truth is -- nothing makes death, or loss, easier or better. I could write you pages upon pages of how grateful we all are about life, and every beautiful individual that I have lost, or others have seen pass, but loss is loss. It is hard, painful, heartbreaking, and unjust for most in the cancer world. And to put it bluntly, I hate it. Every single warrior that passes, chips away a part of my soul and creates a huge hole for those family members missing that innocent warrior who has fought tooth and nail for their life.
But what I can also tell you? The individuals who have passed that I've experienced are more graceful, beautiful, and stunning than you or I could ever be. There are days, when I think about Anne (who passed a way a little over a month ago) or Kirsten, Adrienne and Eric who in their moments of accepting death were still able to shine such a bright light onto others lives. They, in my mind were a culmination of a life force: a beautiful mess of calm, peace, and loss.
In the last month, the Refractory Hodgkin's community has lost Anne, and as of very recent, Andy. I have words, lots of words, but nothing I write in these circumstances ever seems to justify how I feel, or the pain that streams through the bodies of those living with a missing piece of their heart day in and day out. So I wanted to share something with you to at least give pause to these two magnificent individuals
About two months or so before Anne passed away I sent her my favorite book Meditations from the Mat. The book encompasses daily reflections of life, meditations, the path of Yoga and Life. Yet again, as days, life, and beautiful individuals pass by, I come to these thoughts that I shared with Anne during her last months. The emails after our book exchange breathed life into me more during those weeks than at any other time this year, and in these moments I told her, she was in fact the light of the world. Knowing that she and others who have passed encompass(ed) this passage each day they were here, and continue to do so through their energy and through their families. It is all about choice, and how we day after day choose to react to what is in front of us. Something, those we've lost have accomplished with the most grace I've ever seen and continue to see...
My favorite part of these time worn pages is that I write down an individuals name that reminds me of the concept, theory, voice, or energy of that passage. And this is where, when you turn the pages to Day 271, you will see Anne in big, bold letters.
Walking along a beach, I watched hundreds of little crabs digging tunnels into the sand. Each crab tunnel was the equivalent of my digging a tunnel twenty feet deep with my bare hands in thirty or forty seconds. This commonplace miracle was possible because it was necessary. If crabs are going to get by in this world, they are going to have to possess that much strength, that much life-force -- and so they have it. Life force is like that -- ubiquitous and inexhaustible. Nothing is impossible for those who have it. The root of the word pranayama is prana, or life force. What we call a miracle is often imply the presence of a little extra prana.
Prana does not differentiate between good and bad; we do. Prana simply is. It infuses the mouse with the ability to run, and it infuses the hawk with the ability to fly swiftly. It is up to each of us to make proper use of the prana available to us. Most of us have been unconsciously minimizing the amount of prana we channel into our lives because we are afraid of what we might do with all that life force if we had it. This is why surrendering to goodness is so important. Once we surrender, we can get on with the business of being magnificent, trusting that we will be guided by a higher power along the way. As we practice pranayama, we are learning to open up our energy channels. We're saying we are ready to be the 'light of the world.'
To Anne, and her amazing, joyous family, I continue to send you all love, and think of Anne every single day that goes by. To Andy, Kimberly, Calvin, and Olivia, I send you strength, comfort, and love during these difficult days.
We all, the HL community, and others hold Anne and Andy in our hearts.
To these families, and you, today I wish you a little extra Prana in your days and days to follow.
Love and Light,
B.
But the cold hard truth is -- nothing makes death, or loss, easier or better. I could write you pages upon pages of how grateful we all are about life, and every beautiful individual that I have lost, or others have seen pass, but loss is loss. It is hard, painful, heartbreaking, and unjust for most in the cancer world. And to put it bluntly, I hate it. Every single warrior that passes, chips away a part of my soul and creates a huge hole for those family members missing that innocent warrior who has fought tooth and nail for their life.
But what I can also tell you? The individuals who have passed that I've experienced are more graceful, beautiful, and stunning than you or I could ever be. There are days, when I think about Anne (who passed a way a little over a month ago) or Kirsten, Adrienne and Eric who in their moments of accepting death were still able to shine such a bright light onto others lives. They, in my mind were a culmination of a life force: a beautiful mess of calm, peace, and loss.
Anne
In the last month, the Refractory Hodgkin's community has lost Anne, and as of very recent, Andy. I have words, lots of words, but nothing I write in these circumstances ever seems to justify how I feel, or the pain that streams through the bodies of those living with a missing piece of their heart day in and day out. So I wanted to share something with you to at least give pause to these two magnificent individuals
Kimberly, Calvin, Andy, Oliva
About two months or so before Anne passed away I sent her my favorite book Meditations from the Mat. The book encompasses daily reflections of life, meditations, the path of Yoga and Life. Yet again, as days, life, and beautiful individuals pass by, I come to these thoughts that I shared with Anne during her last months. The emails after our book exchange breathed life into me more during those weeks than at any other time this year, and in these moments I told her, she was in fact the light of the world. Knowing that she and others who have passed encompass(ed) this passage each day they were here, and continue to do so through their energy and through their families. It is all about choice, and how we day after day choose to react to what is in front of us. Something, those we've lost have accomplished with the most grace I've ever seen and continue to see...
My favorite part of these time worn pages is that I write down an individuals name that reminds me of the concept, theory, voice, or energy of that passage. And this is where, when you turn the pages to Day 271, you will see Anne in big, bold letters.
Day 271
"Each one of us is merely a small instrument. When you look at the inner workings of electrical things, often you see small and big wires, new and old, cheap and expensive, lined up. Until the current passes through them, there will be no light. That wire is you and me. The current is a higher energy. We have the power to let the current pass through us, use us, produce the light of the world. Or we can refuse to be used and allow darkness to spread" - Mother TeresaWalking along a beach, I watched hundreds of little crabs digging tunnels into the sand. Each crab tunnel was the equivalent of my digging a tunnel twenty feet deep with my bare hands in thirty or forty seconds. This commonplace miracle was possible because it was necessary. If crabs are going to get by in this world, they are going to have to possess that much strength, that much life-force -- and so they have it. Life force is like that -- ubiquitous and inexhaustible. Nothing is impossible for those who have it. The root of the word pranayama is prana, or life force. What we call a miracle is often imply the presence of a little extra prana.
Prana does not differentiate between good and bad; we do. Prana simply is. It infuses the mouse with the ability to run, and it infuses the hawk with the ability to fly swiftly. It is up to each of us to make proper use of the prana available to us. Most of us have been unconsciously minimizing the amount of prana we channel into our lives because we are afraid of what we might do with all that life force if we had it. This is why surrendering to goodness is so important. Once we surrender, we can get on with the business of being magnificent, trusting that we will be guided by a higher power along the way. As we practice pranayama, we are learning to open up our energy channels. We're saying we are ready to be the 'light of the world.'
To Anne, and her amazing, joyous family, I continue to send you all love, and think of Anne every single day that goes by. To Andy, Kimberly, Calvin, and Olivia, I send you strength, comfort, and love during these difficult days.
We all, the HL community, and others hold Anne and Andy in our hearts.
To these families, and you, today I wish you a little extra Prana in your days and days to follow.
Love and Light,
B.
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