Wednesday, January 16, 2013
Sunday, January 13, 2013
Roller Coasters
This journey is teaching me many things about myself and my family, both good and not so good. For one thing I am learning that every time I start to think I can't handle anymore, I just move forward and somehow I have handled it. Admittedly not always in the most graceful way but handled just the same. As for the family part well what can I say some are wonderful and some really can't handle this, while others are just plain selfish or in denial. I have also learned that I must find a way to let go of my anger towards those that fall short...I am not there yet!
This is yet another blog post that has been in draft form since January 1st. On December 31st mom and I went to the dreaded Radiation Oncologist appointment. Mom had been off to a rough start with the Tamoxifen. The pain had been so intense that she went from working Full-time (and adamantly insisting the diagnosis wouldn't change that) to no longer working or driving within three days of starting the medicine. At one point she could barely walk. She was mortified, but more than that she had let the fear creep in. I could see it in her eyes.
As we went in to see the Doctor she noted that it had been a good week and allot of the pain had subsided. What that really means is the Percocet was not needed so much as Ibuprofen and my mother's tolerance for living in constant pain. The doctor was truly wonderful, one of the few angels on earth I suppose. She took the time to explain allot of what the primary Oncologist left out (flat out avoided). She went on to say that the risks of radiation at this time far out weighed the benefits and that since there was no spine pain and the other pain was manageable she would not be needed, for now. She was very hopeful that these were indicators that the Tamoxifen was doing it' s job.
We left feeling hopeful too. Mom was having a good week so far. She was not struggling to walk and was optimistic about driving again and soon. Those weeks are rare and t to be treasured.
Then my car broke down and we paid way too much for a dealer to diagnosis the problem only to move it to my brother in-laws who has his own shop.
Then my husband' s grandmother returned to the hospital for the second time in one week at age 92. A third trip would follow in the next week...a trip for my son proceeded it (allergic reaction, he' s fine now) and a trip for myself proceeded that (chest pain, not my heart - my inability to manage stress).
We've postponed the New Year's tradition of Christmas with the in-laws three times now.
This is right when I start to think there is no way I will make it through...
Back to mom...
She spent that night at our house on New Year's Day, excited that she would be well enough to care for my son (almost 4) the next day while I went to work. Mom has had him every Wednesday since I went back to work from maternity leave. She has given us and especially him a gift that is priceless. He was only in pre-school 3 part time days a week until recently. Unfortunately by the end of the day it was evident to me that this is just too much for her. I had anticipated this and made plans to add a day to pre-school. I know this is hard for them both but I can't have her making our needs her priority over surviving.
It's very difficult to look in her eyes and see that she is being robbed of this time with him. So, we have agreed from time to time he'll stay home to be with her if it makes sense and we'll visit her on Tuesday night's instead. He asks everyday if it's a Grammy day...how do you explain this to a 4 year old. Honesty? For the most part that's the route I travel but the "C" word...that is not a reality I want him to face so young.
This is when I start to unravel inside...I hide it well until I am home. Then the panic sets in. I don't know how I have made it through the week, my heart is racing, the tears come with no warning and I completely lose it. My doctor have me anxiety meds to try and help me from getting to this point...I haven't taken any. I didn't even fill the script - she knew I wouldn't.
You see the pain hadn't subsided for long. Mom is back to needing the Percocet and has pain in her spine. The fear is in her eyes again. And it's the one random thought that leads me to that look in her eyes or the 7 that she consistently marks on the calendar for her pain level (her 7 is unbearable for most).
A few more days pass. I bury myself in my work during the day and check in with mom a few times each day. I make the necessary calls to set-up her disability and I listen to her and try not to be weak in front of her. I remind myself...
She is the one with Cancer...
I will lose her...
But she is the one living this agony.
Somehow the week I thought I couldn't survive is gone and we both made it through.
This is yet another blog post that has been in draft form since January 1st. On December 31st mom and I went to the dreaded Radiation Oncologist appointment. Mom had been off to a rough start with the Tamoxifen. The pain had been so intense that she went from working Full-time (and adamantly insisting the diagnosis wouldn't change that) to no longer working or driving within three days of starting the medicine. At one point she could barely walk. She was mortified, but more than that she had let the fear creep in. I could see it in her eyes.
As we went in to see the Doctor she noted that it had been a good week and allot of the pain had subsided. What that really means is the Percocet was not needed so much as Ibuprofen and my mother's tolerance for living in constant pain. The doctor was truly wonderful, one of the few angels on earth I suppose. She took the time to explain allot of what the primary Oncologist left out (flat out avoided). She went on to say that the risks of radiation at this time far out weighed the benefits and that since there was no spine pain and the other pain was manageable she would not be needed, for now. She was very hopeful that these were indicators that the Tamoxifen was doing it' s job.
We left feeling hopeful too. Mom was having a good week so far. She was not struggling to walk and was optimistic about driving again and soon. Those weeks are rare and t to be treasured.
Then my car broke down and we paid way too much for a dealer to diagnosis the problem only to move it to my brother in-laws who has his own shop.
Then my husband' s grandmother returned to the hospital for the second time in one week at age 92. A third trip would follow in the next week...a trip for my son proceeded it (allergic reaction, he' s fine now) and a trip for myself proceeded that (chest pain, not my heart - my inability to manage stress).
We've postponed the New Year's tradition of Christmas with the in-laws three times now.
This is right when I start to think there is no way I will make it through...
Back to mom...
She spent that night at our house on New Year's Day, excited that she would be well enough to care for my son (almost 4) the next day while I went to work. Mom has had him every Wednesday since I went back to work from maternity leave. She has given us and especially him a gift that is priceless. He was only in pre-school 3 part time days a week until recently. Unfortunately by the end of the day it was evident to me that this is just too much for her. I had anticipated this and made plans to add a day to pre-school. I know this is hard for them both but I can't have her making our needs her priority over surviving.
It's very difficult to look in her eyes and see that she is being robbed of this time with him. So, we have agreed from time to time he'll stay home to be with her if it makes sense and we'll visit her on Tuesday night's instead. He asks everyday if it's a Grammy day...how do you explain this to a 4 year old. Honesty? For the most part that's the route I travel but the "C" word...that is not a reality I want him to face so young.
This is when I start to unravel inside...I hide it well until I am home. Then the panic sets in. I don't know how I have made it through the week, my heart is racing, the tears come with no warning and I completely lose it. My doctor have me anxiety meds to try and help me from getting to this point...I haven't taken any. I didn't even fill the script - she knew I wouldn't.
You see the pain hadn't subsided for long. Mom is back to needing the Percocet and has pain in her spine. The fear is in her eyes again. And it's the one random thought that leads me to that look in her eyes or the 7 that she consistently marks on the calendar for her pain level (her 7 is unbearable for most).
A few more days pass. I bury myself in my work during the day and check in with mom a few times each day. I make the necessary calls to set-up her disability and I listen to her and try not to be weak in front of her. I remind myself...
She is the one with Cancer...
I will lose her...
But she is the one living this agony.
Somehow the week I thought I couldn't survive is gone and we both made it through.
Why not pink?
For sometime now I have had misgivings about the Pink Ribbon Campaign and this post has been in draft form since December.I thought I should take the time to explain my thoughts on pink. To be honest, pink, along with blue have always been my favorite colors. Pink actually looks great on me and my mom too. I suppose it's our fair complexion that we share that pairs just perfectly with pink.
When mom was first diagnosed with Breast Cancer a little more than four years ago we embraced that pink symbol of hope, courage and surviving. It was a symbol I was proud of. Who wouldn't be proud to be sitting alongside a courageous woman fighting her own battle and winning against Breast Cancer. You see when the diagnosis is anything but Stage IV there is great hope. There's allot of , "well if she's going to have cancer it's one of the better ones to have" or "they've come along way and Breast Cancer is treatable". There's not allot of discussion about the very real fact the 30% of women with Breast cancer metastasize approximately 36 months from the start of the initial treatment.
Well it's been about 36 months and mom didn't beat the odds this time. I can't help feeling that pink and pink ribbons are just a reminder of all the ways we are failing 40,000 women annually. It was exciting the first time I saw the NFL wearing pink. I was touched to think that they would change their uniforms to support Breast Cancer Research and awareness. Anyone who follows football knows the rules regarding uniforms are strict, look how often they scrutinized Bill Belichick for his fashion faux pas until they realized there was something there to capitalize on. Hence the Bill Belichick clothing line! And come to think of it the pink uniforms in support of Breast Cancer awareness got off to a slow start right around the time that the "pink hat phenomenon" was full speed ahead. For those of you unfamiliar there are true long time female sports fans and then there are the "pink hats", fans because it's fashionable to be one. Don't get me wrong, I have a few pink hats -- they are way cuter, but I am not a "pink hat". The NFL has done a fabulous job capitalizing on the movement and then some.
I realize now that the percentage of profits related to anything pink or pink ribbon far outweigh the percentage of money donated to research and even that far outweighs the actual money spent on research after paying for countless expenses and frivolous salaries to the individuals that run these foundations. Now that sounds dramatic right? Well to that I say do some real research. Don't just look at what goes to the research and the really important work like helping those living with cancer. Look at those salaries and ask yourself could you or someone you know do that job well for a more reasonable salary? I bet your answer is yes. You see its one thing for the CEO of a multi-billion dollar for profit company who built it from nothing to set her salary at 6+ figures but it's another thing entirely for that same position in a non-profit foundation to be so high...it's non profit people...you can be paid well without becoming a member of the 1%! I say that as a conservative at heart so don't get all political on me.
That's really just the tip of the ice burg.
In truth there are a few foundations, especially local ones that truly are non profit and do their jobs very well. There are I imagine some larger foundations who also do better than others. Don't get me wrong, I believe that without this campaign and the true intentions behind it we would not have come so far . As they say, we have come far. I give credit where credit is due.
But you see, pink is no longer my favorite color because it is a reminder of something that no longer includes mom, of conversations that are never had about the reality of Metastatic Breast Cancer outside of that private meeting when you get the news and the few wonderful bloggers such as But, Doctor I Hate Pink and other support groups.
It's all a bit disheartening really. And until you join this club that no one speaks of...I think it's really hard to understand this point of view. I hope this club membership dwindles and those of you who don't quite understand why I feel this never do. I hope that someday the research that is done and done well eliminates this club altogether. But forgive me if I support you despite my dislike of pink.
When mom was first diagnosed with Breast Cancer a little more than four years ago we embraced that pink symbol of hope, courage and surviving. It was a symbol I was proud of. Who wouldn't be proud to be sitting alongside a courageous woman fighting her own battle and winning against Breast Cancer. You see when the diagnosis is anything but Stage IV there is great hope. There's allot of , "well if she's going to have cancer it's one of the better ones to have" or "they've come along way and Breast Cancer is treatable". There's not allot of discussion about the very real fact the 30% of women with Breast cancer metastasize approximately 36 months from the start of the initial treatment.
Well it's been about 36 months and mom didn't beat the odds this time. I can't help feeling that pink and pink ribbons are just a reminder of all the ways we are failing 40,000 women annually. It was exciting the first time I saw the NFL wearing pink. I was touched to think that they would change their uniforms to support Breast Cancer Research and awareness. Anyone who follows football knows the rules regarding uniforms are strict, look how often they scrutinized Bill Belichick for his fashion faux pas until they realized there was something there to capitalize on. Hence the Bill Belichick clothing line! And come to think of it the pink uniforms in support of Breast Cancer awareness got off to a slow start right around the time that the "pink hat phenomenon" was full speed ahead. For those of you unfamiliar there are true long time female sports fans and then there are the "pink hats", fans because it's fashionable to be one. Don't get me wrong, I have a few pink hats -- they are way cuter, but I am not a "pink hat". The NFL has done a fabulous job capitalizing on the movement and then some.
I realize now that the percentage of profits related to anything pink or pink ribbon far outweigh the percentage of money donated to research and even that far outweighs the actual money spent on research after paying for countless expenses and frivolous salaries to the individuals that run these foundations. Now that sounds dramatic right? Well to that I say do some real research. Don't just look at what goes to the research and the really important work like helping those living with cancer. Look at those salaries and ask yourself could you or someone you know do that job well for a more reasonable salary? I bet your answer is yes. You see its one thing for the CEO of a multi-billion dollar for profit company who built it from nothing to set her salary at 6+ figures but it's another thing entirely for that same position in a non-profit foundation to be so high...it's non profit people...you can be paid well without becoming a member of the 1%! I say that as a conservative at heart so don't get all political on me.
That's really just the tip of the ice burg.
In truth there are a few foundations, especially local ones that truly are non profit and do their jobs very well. There are I imagine some larger foundations who also do better than others. Don't get me wrong, I believe that without this campaign and the true intentions behind it we would not have come so far . As they say, we have come far. I give credit where credit is due.
But you see, pink is no longer my favorite color because it is a reminder of something that no longer includes mom, of conversations that are never had about the reality of Metastatic Breast Cancer outside of that private meeting when you get the news and the few wonderful bloggers such as But, Doctor I Hate Pink and other support groups.
It's all a bit disheartening really. And until you join this club that no one speaks of...I think it's really hard to understand this point of view. I hope this club membership dwindles and those of you who don't quite understand why I feel this never do. I hope that someday the research that is done and done well eliminates this club altogether. But forgive me if I support you despite my dislike of pink.
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