I just spent 10 hours at yet another BC event. I sat at a booth and heard about and talked about cancer all day. I went to Washington DC for 5 days of advocacy training and lobbying 2 weeks ago. I have committed to organizing a big rally/vigil for cancer survivors on the capitol steps this week. And I have to speak at another cancer thing in 2 weeks. I am fried and sick of cancer.
Without meaning to, I have become involved in at least 6 different organizations. And I mean involved. I think initially I wanted to check out all the different ones and find the right fit for me. But then I would meet the people involved and feel compelled to help out. There is just so much to be done, but why do I think I have to do it all?
Or maybe it is the fact that by being the volunteering maniac, I feel like I am stopping the cancer that I am sure is nipping at my heels and waiting for me to make one wrong step. This way when it comes raging back into my life, I will have all my resources in place. I am waiting for the other shoe to drop and I know it is not rational. But there is a large part of me that would not be able to take the trap door opening again and swallowing me-so it is a preemptive strike against the shock and I will be able to say "AHA!! I knew it!" I know it is nuts and I keep telling myself to start saying No to things and then I hear the words coming out.."You know what would be great is ......" and I am off on another. It's like serial dating, which I have never understood anyway, and I am ready for my big commitment-the NBCC. Oh, I am sure there will be flings along the way but if they are truly just flings, no one will get hurt-especially me.
Sunday, May 13, 2007
Thursday, May 10, 2007
Why I Got Cancer
I think that every person that has ever been diagnosed has their pet theory or theories as to why they got cancer. Here are just a few of mine:
-My father worked for NASA when I was born and we had to live in Houston.Yes, had to. There were huge mosquito infestations and they were afraid of malaria so they quarantined us and brought in the Foggers. We thought these were the coolest things EVER. My sisters and brother and I would follow it around on our bikes, or trike in my case, and pretend we were in a cloud. My mother has nightmares about this.
-I love swimming and have been in more over-chlorinated pools than I care to think about. I lived at our swim club all Summer long from about the age of 6 upwards. Or was it the zinc oxide?
-In Texas, it was considered normal to get your house fumigated for cockroaches on a regular basis. I didn't walk until I was over 2 years old so I was wallowing in it.
-Back in Colorado, there was a huge power line at the end of our block and I used to tell my mom that if anything ever happened to me-that was what did it. I could hear it humming and it looked sinister. I was 9.
-There was a company called Redfield Scope that was smack dab in the middle of a neighborhood and they made scopes for rifles. The problem with this is that they cleaned the grease off them with highly toxic material and then DUMPED IT ON SITE. It worked its way into the ground water and started seeping through the 'hood. The Brown Group Retail owned Redfield and hid this fact. There was a class action lawsuit but to no avail. They said it was without merit. Real Estate prices dropped, 8 people on our block alone got cancer (so far) . Where is Erin Brokovich when you need her? Luckily, my parents moved shortly before it all came out and were able to sell. Not so lucky for the family that moved in however.
-When I was 25, I was out of college and I decided to take off and got a one way ticket to Bangkok. I had to get about 9 scary shots before going and was given a prescription for malaria pills. These were on par with hallucinogens. I took them for the first few months and had such insane dreams that I had a hard time figuring out what was truth and what was just a dream. My mouth had a perpetual metal taste. There is no way that can be good for you.
-The sub-par meat we ate-sorry mom, but gross.
Some theories are more plausible than others but I will really never know. I had someone I have known almost my entire life insinuate that people give themselves cancer. I cannot stress how insulting this is , and if it were true- couldn't I cure myself, too?
I returned last week from Washington DC where I lobbied with the NBCC to push for the Breast Cancer and Environmental Research Act. When the word environment is used, most people think smokestacks but it simply means any cause that is NOT genetic. 85% of women diagnosed with BC have no family history.
Until we know what causes breast cancer, there will be no cure-plain and simple.
I'm off my soap box and out to enjoy the beautiful Spring weather.
-My father worked for NASA when I was born and we had to live in Houston.Yes, had to. There were huge mosquito infestations and they were afraid of malaria so they quarantined us and brought in the Foggers. We thought these were the coolest things EVER. My sisters and brother and I would follow it around on our bikes, or trike in my case, and pretend we were in a cloud. My mother has nightmares about this.
-I love swimming and have been in more over-chlorinated pools than I care to think about. I lived at our swim club all Summer long from about the age of 6 upwards. Or was it the zinc oxide?
-In Texas, it was considered normal to get your house fumigated for cockroaches on a regular basis. I didn't walk until I was over 2 years old so I was wallowing in it.
-Back in Colorado, there was a huge power line at the end of our block and I used to tell my mom that if anything ever happened to me-that was what did it. I could hear it humming and it looked sinister. I was 9.
-There was a company called Redfield Scope that was smack dab in the middle of a neighborhood and they made scopes for rifles. The problem with this is that they cleaned the grease off them with highly toxic material and then DUMPED IT ON SITE. It worked its way into the ground water and started seeping through the 'hood. The Brown Group Retail owned Redfield and hid this fact. There was a class action lawsuit but to no avail. They said it was without merit. Real Estate prices dropped, 8 people on our block alone got cancer (so far) . Where is Erin Brokovich when you need her? Luckily, my parents moved shortly before it all came out and were able to sell. Not so lucky for the family that moved in however.
-When I was 25, I was out of college and I decided to take off and got a one way ticket to Bangkok. I had to get about 9 scary shots before going and was given a prescription for malaria pills. These were on par with hallucinogens. I took them for the first few months and had such insane dreams that I had a hard time figuring out what was truth and what was just a dream. My mouth had a perpetual metal taste. There is no way that can be good for you.
-The sub-par meat we ate-sorry mom, but gross.
Some theories are more plausible than others but I will really never know. I had someone I have known almost my entire life insinuate that people give themselves cancer. I cannot stress how insulting this is , and if it were true- couldn't I cure myself, too?
I returned last week from Washington DC where I lobbied with the NBCC to push for the Breast Cancer and Environmental Research Act. When the word environment is used, most people think smokestacks but it simply means any cause that is NOT genetic. 85% of women diagnosed with BC have no family history.
Until we know what causes breast cancer, there will be no cure-plain and simple.
I'm off my soap box and out to enjoy the beautiful Spring weather.
Wednesday, May 9, 2007
Why I attended a Support Group after mocking them
Graphic Cancer Chat Alert:
I suppose I should address the title of this blog, and in order to do so and not bore anyone to tears, I will give an abbreviated version. And I will get there eventually.
I was diagnosed with Breast Cancer.
I had several surgeries.
I started chemotherapy, the first rounds being Adriamycin and Cytoxin. That's right-they boldly named it what it is, a TOXIN. This is commonly known among patients as "the red devil" or as I called it "Big Red". The nurses wore Haz mat suits and I just sat there in a haze of Ativan.
This went on for several months. When I finished my A/C, treatments, I felt like aliens had taken over my body. I was bloated from the steroids and had gained 25 pounds-Yes, yet another wonderful side effect. My chemo-port in my chest was just not happening and gave me such anxiety when it had to be Accessed that I went under to have it removed and another put in-when I woke up from the surgery, the Surgeon's first words were "It doesn't work-we think there is a kink in the tubing." Had I had the presence of mind, I would have said " Well fix it for fuck's sake." But I didn't, I just stared at them and wondered why it was all so messed up. My treatment was delayed until I could get a good port in and I had a reprieve for a few months.
I began exploring the BC Resouce Directory: More in detail later
Healing Hands- Reiki and energy work, signed up
Complementary and Alternative Therapies, signed up
Support Groups-SO not my scene, I hated sororities and would just cowboy up and get on with things.
Summit Exercise Program------just what I needed!
Summit held an orientation evening to explain the program. I attended and quickly noticed that everyone else had a family member or someone there with them. I always felt it would be a total drag for someone to have to go to the bajillion things I went to and went solo 95% of the time. The founder of the program, Karen Hornbostel, was a Master roadbiker and a 3 time BC Survivor. She was Stage IV and attributed her longevity at this Stage to exercise. She had been given a large Grant from the Lance Armstrong Foundation and was an award winner as their Survivor of the Year. She was funny, inspirational and I drank the Koolaid. Karen had us go around and give a brief intro and why we were there. When my turn came , I began speaking and then .....I truly lost my mind.
The last thing I remember saying is "I just feel so disgusting.." and began crying...no , sobbing. And I couldn't stop. And then it was as if I were having an out of body experience and was hovering over the room watching myself lose it. "Get a grip, what on earth are you doing?!" , I said to myself. This was SO entirely out of character for me that it scared me. Karen had to give me tissues and the crowd was very kind and comforting but I was so embarassed. The dam had broken and there was no stopping me. When it was over, I went and apologized to Karen saying that I had no idea what happened to me. She gave me a hug and said it wasn't so unusual . I got in the car to drive home and called a friend and I was laughing/crying at how crazy I had become. It was obvious that I needed a support group.
So I attended one and the women were about 20 to 30 years older than me and cried about how would they tell their Grandchildren. I selfishly thought "Jesus Christ, at least you got to have grandchildren." These were not my people.
I found YES! Young Empowered Survivors. Finally, I found women my age who could relate to all the freaky stuff that you just can't talk to your friends and family about:
"Oh my God, they actually stuck a wire through my boob and it was sticking out 2 inches and made my walk down the hall like Frankenstein and then... Get a mammagram ...with the wire sticking out of my chest!!!"
" Me too!"
I was home.
I suppose I should address the title of this blog, and in order to do so and not bore anyone to tears, I will give an abbreviated version. And I will get there eventually.
I was diagnosed with Breast Cancer.
I had several surgeries.
I started chemotherapy, the first rounds being Adriamycin and Cytoxin. That's right-they boldly named it what it is, a TOXIN. This is commonly known among patients as "the red devil" or as I called it "Big Red". The nurses wore Haz mat suits and I just sat there in a haze of Ativan.
This went on for several months. When I finished my A/C, treatments, I felt like aliens had taken over my body. I was bloated from the steroids and had gained 25 pounds-Yes, yet another wonderful side effect. My chemo-port in my chest was just not happening and gave me such anxiety when it had to be Accessed that I went under to have it removed and another put in-when I woke up from the surgery, the Surgeon's first words were "It doesn't work-we think there is a kink in the tubing." Had I had the presence of mind, I would have said " Well fix it for fuck's sake." But I didn't, I just stared at them and wondered why it was all so messed up. My treatment was delayed until I could get a good port in and I had a reprieve for a few months.
I began exploring the BC Resouce Directory: More in detail later
Healing Hands- Reiki and energy work, signed up
Complementary and Alternative Therapies, signed up
Support Groups-SO not my scene, I hated sororities and would just cowboy up and get on with things.
Summit Exercise Program------just what I needed!
Summit held an orientation evening to explain the program. I attended and quickly noticed that everyone else had a family member or someone there with them. I always felt it would be a total drag for someone to have to go to the bajillion things I went to and went solo 95% of the time. The founder of the program, Karen Hornbostel, was a Master roadbiker and a 3 time BC Survivor. She was Stage IV and attributed her longevity at this Stage to exercise. She had been given a large Grant from the Lance Armstrong Foundation and was an award winner as their Survivor of the Year. She was funny, inspirational and I drank the Koolaid. Karen had us go around and give a brief intro and why we were there. When my turn came , I began speaking and then .....I truly lost my mind.
The last thing I remember saying is "I just feel so disgusting.." and began crying...no , sobbing. And I couldn't stop. And then it was as if I were having an out of body experience and was hovering over the room watching myself lose it. "Get a grip, what on earth are you doing?!" , I said to myself. This was SO entirely out of character for me that it scared me. Karen had to give me tissues and the crowd was very kind and comforting but I was so embarassed. The dam had broken and there was no stopping me. When it was over, I went and apologized to Karen saying that I had no idea what happened to me. She gave me a hug and said it wasn't so unusual . I got in the car to drive home and called a friend and I was laughing/crying at how crazy I had become. It was obvious that I needed a support group.
So I attended one and the women were about 20 to 30 years older than me and cried about how would they tell their Grandchildren. I selfishly thought "Jesus Christ, at least you got to have grandchildren." These were not my people.
I found YES! Young Empowered Survivors. Finally, I found women my age who could relate to all the freaky stuff that you just can't talk to your friends and family about:
"Oh my God, they actually stuck a wire through my boob and it was sticking out 2 inches and made my walk down the hall like Frankenstein and then... Get a mammagram ...with the wire sticking out of my chest!!!"
" Me too!"
I was home.
Tuesday, May 8, 2007
Pro vs. Con
There are upsides to cancer, believe it or not.
There is even humor, albeit gallowish. Halloween offered me a chance to be the best Mr. Clean EVER and I could do a mid-evening switch to Sinead O'Connor.
Showers took about 5 minutes without any hair.
And best of all, no having to think up little white lies for things I want to get out of :
"Nope, sorry, I can't pick you up at the airport (which is practically in Kansas) , I have cancer"
"Super sorry I can't make it to your 4th g-damned baby shower, I have cancer"
"What?! Pass the salt?! I have cancer, for God's sake, get it yourself!"
And then there was the visit to the Psychic Expo when I was first diagnosed to see if I could flush out the charlatans. But upon arrival, I got a little weirded out by the karmic repercussions and couldn't go through with it.
There was the crystal clear view of what I think is important in life-which of course has been tempered with the passage of time and the harsh reality of financial burdens. I was a kinder, gentler person for while- or just completely exhausted and on really good narcotics.
There are the truly amazing people I met who were on the same awful journey. Thank God, Buddha, Yahweh, whatever is right, for them.
The downside, other than facing one's own mortality and the utter Hell that is chemotherapy, is the sadness and pain it caused my family, friends and loved ones. And for that reason, I will not
be cluing them into my little blog. They have been through enough and want to believe that I am fine and all is well. They should have that.
Being the source of their sadness was an added burden and I ended up worrying about them worrying about me. The day I was to go in to discuss my biopsy, my oldest friend came with me. When the Dr. told me I had cancer, I told her she had to call my Mother. You see, my oldest sister had passed away 2 years prior of cancer and I simply could not be the person who broke her heart again.
Cancer totally sucks.
There is even humor, albeit gallowish. Halloween offered me a chance to be the best Mr. Clean EVER and I could do a mid-evening switch to Sinead O'Connor.
Showers took about 5 minutes without any hair.
And best of all, no having to think up little white lies for things I want to get out of :
"Nope, sorry, I can't pick you up at the airport (which is practically in Kansas) , I have cancer"
"Super sorry I can't make it to your 4th g-damned baby shower, I have cancer"
"What?! Pass the salt?! I have cancer, for God's sake, get it yourself!"
And then there was the visit to the Psychic Expo when I was first diagnosed to see if I could flush out the charlatans. But upon arrival, I got a little weirded out by the karmic repercussions and couldn't go through with it.
There was the crystal clear view of what I think is important in life-which of course has been tempered with the passage of time and the harsh reality of financial burdens. I was a kinder, gentler person for while- or just completely exhausted and on really good narcotics.
There are the truly amazing people I met who were on the same awful journey. Thank God, Buddha, Yahweh, whatever is right, for them.
The downside, other than facing one's own mortality and the utter Hell that is chemotherapy, is the sadness and pain it caused my family, friends and loved ones. And for that reason, I will not
be cluing them into my little blog. They have been through enough and want to believe that I am fine and all is well. They should have that.
Being the source of their sadness was an added burden and I ended up worrying about them worrying about me. The day I was to go in to discuss my biopsy, my oldest friend came with me. When the Dr. told me I had cancer, I told her she had to call my Mother. You see, my oldest sister had passed away 2 years prior of cancer and I simply could not be the person who broke her heart again.
Cancer totally sucks.
To Blog or Not to Blog
WARNING: GRAPHIC DISCUSSION OF UNCOMFORTABLE SUBJECT.....CANCER
I am attempting to exorcise the demons that have haunted me since being diagnosed with Breast Cancer two and a half years ago. Why not just keep a Diary and spare you the gross details, you may ask. Because I just won't do it.....this format may create that extra guilty feeling that is the only remedy to my procrastination. And the subject has been taboo for far too long. 1 in 3 will get cancer. Yep, that's right. When it comes to Breast Cancer, or BC as I will now refer to it, the statistics are 1 in 8 and moving closer to 1 in 7. I joke with my friends that I took the bullet and that they owe me BIG time. This may relieve them but I know better.
The one question that everyone asks when they hear ( and I am sure you are wondering, too) is " Are you OK? Did they get it all?" or in truer terms....."Are you going to die from it?" I am what is called NED or No Evidence of Disease. This nebulous designation is cold comfort. There is no visible cancer and after undergoing 19 months of chemo and radiation, I live with the fear of recurrence. Not in a pervasive, all day long, woe is me way but more like middle of the night, planning my funeral, freaky way that usually dissipates with the rising sun.
This blog is a way to get it out of my head, on to the page, and stop the spinning thoughts in my head, and forge some new neural pathways in the gray matter. The theory needs to be tested. I recently read a piece about people with rage problems and they almost all said that they need to let out the rage, that it is healthier than keeping it inside. Considering the source, these are the folks tailgaiting, screaming obscenities, flipping you off....it is obviously not working. The professional opinion is that it is much wiser to figure out a way to calm down quickly, deep breathing, whatever, than to escalate into freak mode.
Confession: I lived in Venice, CA for a few years and had to commute into Hollywood for work everyday in my old Volvo "the Golden Gouda" and would attempt to shave minutes off my driving time . My friend Hans joined me one day for the drive and was visibly horrified at my behavior and told me he was going to put a camera in the car so I could see what I looked like ---Crazy. I had driven alone for too long.
So this blog will either feed the neuroses or squelch it.
I am attempting to exorcise the demons that have haunted me since being diagnosed with Breast Cancer two and a half years ago. Why not just keep a Diary and spare you the gross details, you may ask. Because I just won't do it.....this format may create that extra guilty feeling that is the only remedy to my procrastination. And the subject has been taboo for far too long. 1 in 3 will get cancer. Yep, that's right. When it comes to Breast Cancer, or BC as I will now refer to it, the statistics are 1 in 8 and moving closer to 1 in 7. I joke with my friends that I took the bullet and that they owe me BIG time. This may relieve them but I know better.
The one question that everyone asks when they hear ( and I am sure you are wondering, too) is " Are you OK? Did they get it all?" or in truer terms....."Are you going to die from it?" I am what is called NED or No Evidence of Disease. This nebulous designation is cold comfort. There is no visible cancer and after undergoing 19 months of chemo and radiation, I live with the fear of recurrence. Not in a pervasive, all day long, woe is me way but more like middle of the night, planning my funeral, freaky way that usually dissipates with the rising sun.
This blog is a way to get it out of my head, on to the page, and stop the spinning thoughts in my head, and forge some new neural pathways in the gray matter. The theory needs to be tested. I recently read a piece about people with rage problems and they almost all said that they need to let out the rage, that it is healthier than keeping it inside. Considering the source, these are the folks tailgaiting, screaming obscenities, flipping you off....it is obviously not working. The professional opinion is that it is much wiser to figure out a way to calm down quickly, deep breathing, whatever, than to escalate into freak mode.
Confession: I lived in Venice, CA for a few years and had to commute into Hollywood for work everyday in my old Volvo "the Golden Gouda" and would attempt to shave minutes off my driving time . My friend Hans joined me one day for the drive and was visibly horrified at my behavior and told me he was going to put a camera in the car so I could see what I looked like ---Crazy. I had driven alone for too long.
So this blog will either feed the neuroses or squelch it.
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