I felt like Billy Madison after his first day of fourth grade ("I'm never going back to school... never!")... for serious.
"Support Group -- For Young Survivors". In theory, this sounds great. A bunch of other young women dealing with similar issues... you can share your feelings and have people relate to you.
In reality, it's a rotating door of new people and random nursing students (there to watch and learn from the young women with breast cancer) sitting around a conference room table in a cold room snacking on store bought cookies... a group that's been dealt a similarly unfortunate hand... but ultimately, a group of strangers. How are you supposed to open up and make yourself any more vulnerable in a group like this? Why would I share anything with this group that I wouldn't share with my friends?
I suppose they can nod their heads and agree with how much it stinks to have cancer rip away the control you thought you had on your life, but I'm not sure how that helps. Despite my doubts, I decided to try a few meetings. I don't think I will go back. I know I won't.
There were a few women there who seemed like women I might be able to connect with... I was expecting to feel a camaraderie towards these women... a shared struggle... but for the most part, I just found myself annoyed.
There were the women a year or two out who "just wanted to give back to those newly diagnosed" --> and I was annoyed because "who were they to be sitting there so smug, giving back to me... I had been fighting this battle longer than any of them" (of course, I didn't say this... I just smiled and nodded)
There was the repetition of "I was stage I... I was stage II... thank goodness I caught it early before it was stage IV..." (I bit my tongue)
There was the woman 3 years out who is expecting a baby any day --> I should have been excited for her... but instead, I could feel my blood pressure rise as she casually commented "lucky for me I was er- so I could have a baby after my cancer"... and... "I'm not looking forward to the sleep deprivation"
And then... there was the conversation that devolved into how hard it is to be a mom and complaining about the challenges of motherhood. Not motherhood+cancer... just motherhood (terrible twos, back to school, playdate drama, etc). I felt like I had teleported from a "young women's breast cancer support group" to a "mommy's support group"... not that I am in any way questioning how hard it is to be a mom. I know it is a tiring and difficult job and it would have been fine if it had been a passing commentary. But we just stayed there, talking about their kids, for what felt like forever. Until I couldn't breathe. Until all I could do was to stand up and excuse myself in the middle of somebody's story and book it to my car... and sit there, and sob and think about how much I wished I had those "problems".
Is it just me... isn't the issue of fertility a particularly sensitive one for young women with breast cancer?!? Maybe that was a fun conversation for the 60% of the room who was married with kids... but what about those of us who had not yet started our families? Who are dealing with the fact that they may no longer have that option. Women for whom that decision has been made for them. What about the young woman next to me whose boyfriend broke up with her because he couldn't deal with her diagnosis? Who is wondering how she will ever meet a partner... let alone start a family.
A quick glance around the room and it was obvious to me that not everyone was engaged and, in fact, several people (myself included) were visibly uncomfortable. But because we are strangers, nobody was comfortable enough (myself included) to say "can we please change the subject?" Seriously.
I'm not sure what I was really expecting from the experience, but this was not it.
Wednesday, September 15, 2010
Thursday, September 9, 2010
the whole truth
As many of you know, my first set of follow-up tests were last week and I received the results today. While they brought mostly good news, they also brought a new reality... one that I've known in the back of my mind for some time now but I have been reluctant to face or to share.
CA-27/29 tumor markers are lower
CA 27-29 is a blood test that checks for a specific tumor marker. They don't use it for general tracking or diagnosis because the markers do not always appear elevated with the presence of cancer and sometimes they can appear elevated due to other reasons... basically, they are super finicky! They are, however, commonly used to determine whether a cancer is responding well to treatment, particularly in advanced disease. Dr Cairoli ran this test after we confirmed the cancer had spread to my liver this past June. At that time, my markers were over 200 (the normal range is 20-30!) At my appointment two weeks ago, he checked the marker again and the result came back with significant improvement. This is a sign that the chemo is working!
CT scan of liver & lungs look better
The first test that Dr Cairoli did when I called him in June was a CT scan of my chest/lungs. Based on the chronic cough and the results from the chest x-ray, he was initially looking for problems (read: cancer) in my lungs... and he happened to find the tumors in my liver. My lungs at the time showed no tumors, but they did appear a bit cloudy. Just to be safe, he scanned both my lungs and my liver last week to check how things are going.
The lungs look much clearer, which is not surprising, since my cough went away 2-3 weeks after I started chemo! This suggests that my cough was very much related to my breast cancer -- and that the early activity in my lungs has responded very well to treatment.
There are no new spots on my liver and some of the larger tumors appear to have gotten smaller. Again, very good news and a sign that the Abraxane is doing its job.
I have Stage IV breast cancer
While many of you probably realize this, I know that I haven't been as blunt about my diagnosis as I could be. Once cancer spreads from one organ to another, it is considered to be Stage IV. My initial diagnosis in 2005 was Stage IIB. My diagnosis this June was Stage IV. Stages I & II are commonly referred to as "early stage"... this is what you hear a lot about in the media. With improved testing and awareness, early detection has increased significantly, particularly in the US. This is great news because early stage breast cancer is considered extremely treatable.
Stages III & IV are referred to as "advanced stage". Sounds scary, I know. Nobody wants to be Stage IV. All the rest of the cancer patients give thanks that they are not Stage IV -- I know I sure did. There is no "cure" for Stage IV cancer. If you go online and start googling you will see all sorts of scary statistics about Stage IV cancer. I recommend against this.. but if you decide to do it anyway (many of you, I'm sure, already have) please remember this... I have never been one to let the statistics hold me back. I am a female engineer-turned-consultant who joined ROTC and a sorority in college, has worked for the same company for 11 years, plays ultimate frisbee in her freetime and lives in NJ... what are the odds of any of that?!?! (especially the NJ part for those of you who knew me when I swore "when I grow up I want to live somewhere in the northeast... anywhere but New Jersey")
I fully intend to be an "outlier"
As I've said -- I've never been content to be just "average". This time is no exception. From day 1 at ZS I was taught that outliers could totally skew your analysis... that in real life, data is messy. We would typically "pull the outliers out of our analysis"... and so for many years, I tossed the outliers aside. But now... I fully intend to become one of them. (once your done reading this, please go and read this NY Times article about an outlier I hope to emulate: "17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived")
Of course, the reality of this is that "treatment" will be a part of our reality for the rest of my life. It's kind of like having diabetes or some other chronic disease. If you ignore it, it inevitably gets worse (yes, Nancy... this was my public service announcement to warn people not to sit on public toilet seats!).
Abraxane is currently my best friend and will be indefinitely
My tumors are responding well to the Abraxane and my body is holding up well to the drug. The side effects have been tolerable and we are getting into a rhythm with it. This means we will continue with this chemo for the foreseeable future. 3 weeks on... 1 week off. Hopefully, the response will continue.
We will run tests again shortly after Thanksgiving to see how things are going... and we will take it from there.
CA-27/29 tumor markers are lower
CA 27-29 is a blood test that checks for a specific tumor marker. They don't use it for general tracking or diagnosis because the markers do not always appear elevated with the presence of cancer and sometimes they can appear elevated due to other reasons... basically, they are super finicky! They are, however, commonly used to determine whether a cancer is responding well to treatment, particularly in advanced disease. Dr Cairoli ran this test after we confirmed the cancer had spread to my liver this past June. At that time, my markers were over 200 (the normal range is 20-30!) At my appointment two weeks ago, he checked the marker again and the result came back with significant improvement. This is a sign that the chemo is working!
CT scan of liver & lungs look better
The first test that Dr Cairoli did when I called him in June was a CT scan of my chest/lungs. Based on the chronic cough and the results from the chest x-ray, he was initially looking for problems (read: cancer) in my lungs... and he happened to find the tumors in my liver. My lungs at the time showed no tumors, but they did appear a bit cloudy. Just to be safe, he scanned both my lungs and my liver last week to check how things are going.
The lungs look much clearer, which is not surprising, since my cough went away 2-3 weeks after I started chemo! This suggests that my cough was very much related to my breast cancer -- and that the early activity in my lungs has responded very well to treatment.
There are no new spots on my liver and some of the larger tumors appear to have gotten smaller. Again, very good news and a sign that the Abraxane is doing its job.
I have Stage IV breast cancer
While many of you probably realize this, I know that I haven't been as blunt about my diagnosis as I could be. Once cancer spreads from one organ to another, it is considered to be Stage IV. My initial diagnosis in 2005 was Stage IIB. My diagnosis this June was Stage IV. Stages I & II are commonly referred to as "early stage"... this is what you hear a lot about in the media. With improved testing and awareness, early detection has increased significantly, particularly in the US. This is great news because early stage breast cancer is considered extremely treatable.
Stages III & IV are referred to as "advanced stage". Sounds scary, I know. Nobody wants to be Stage IV. All the rest of the cancer patients give thanks that they are not Stage IV -- I know I sure did. There is no "cure" for Stage IV cancer. If you go online and start googling you will see all sorts of scary statistics about Stage IV cancer. I recommend against this.. but if you decide to do it anyway (many of you, I'm sure, already have) please remember this... I have never been one to let the statistics hold me back. I am a female engineer-turned-consultant who joined ROTC and a sorority in college, has worked for the same company for 11 years, plays ultimate frisbee in her freetime and lives in NJ... what are the odds of any of that?!?! (especially the NJ part for those of you who knew me when I swore "when I grow up I want to live somewhere in the northeast... anywhere but New Jersey")
I fully intend to be an "outlier"
As I've said -- I've never been content to be just "average". This time is no exception. From day 1 at ZS I was taught that outliers could totally skew your analysis... that in real life, data is messy. We would typically "pull the outliers out of our analysis"... and so for many years, I tossed the outliers aside. But now... I fully intend to become one of them. (once your done reading this, please go and read this NY Times article about an outlier I hope to emulate: "17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived")
Of course, the reality of this is that "treatment" will be a part of our reality for the rest of my life. It's kind of like having diabetes or some other chronic disease. If you ignore it, it inevitably gets worse (yes, Nancy... this was my public service announcement to warn people not to sit on public toilet seats!).
Abraxane is currently my best friend and will be indefinitely
My tumors are responding well to the Abraxane and my body is holding up well to the drug. The side effects have been tolerable and we are getting into a rhythm with it. This means we will continue with this chemo for the foreseeable future. 3 weeks on... 1 week off. Hopefully, the response will continue.
We will run tests again shortly after Thanksgiving to see how things are going... and we will take it from there.
Wednesday, September 8, 2010
the truth
This blog is an interesting thing... what started as a way to efficiently keep my friends and family informed about my health has evolved into a way for me to try to comfort the people I care about... to convince them that I am OK... so when I'm feeling down or depressed, I tend not to post anything at all... because I don't want to share that side of me or that side of my journey. I don't want to say anything that makes people upset. I'm realizing, however, that that is not really fair to anyone. Not to you... not to me...
My goal moving forward is to bring more truth to my posts -- to show you the struggles as well as the triumphs -- to share the whole entire journey (not just the pieces that are easy to share).
My goal moving forward is to bring more truth to my posts -- to show you the struggles as well as the triumphs -- to share the whole entire journey (not just the pieces that are easy to share).
Sunday, September 5, 2010
more from stumble beach
My friend Paul came out to visit us while we were at stumble beach. He's a photographer and he brought along his gear for a photo shoot. We need your help picking out which pictures to order (there are so many great ones!)! Let us know what you think!
You can check out more of his work here: north40 photography
You can check out more of his work here: north40 photography
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