From a YSC acquaintance:
--------
sorry to leave ya'll hanging...no go for tykerb, billirubin was too high...saw oncologist today, billirubin is still going up....it's at 23....he sounds like i might have a week, i'm due for doxil on monday, but he's not sure it's doing much good for me...my husband asked to try xeloda again, he said he wasn't sure how much dose he could give with my liver so bad....he said he's still trying cause i had originally told him in the beginning to never give up...whatever, i wish he would think of something miraculous....
i'm sorry i haven't taken the calls, but i felt all cried out and didn't want to cry anymore....but i cried a plenty today.....now i've got to tell my kids something....something.....poor little sara did tell me that if she couldn't see me anymore could she always stare at my pictures....okay, there i go again....tired of crying....love ya'll
----------
I pray that this is wrong, that I'm reading this wrong, that "might have a week" turns into decades. This is so unfair.
I hate cancer.
Monday, January 08, 2007
Friday, January 05, 2007
An exciting 2007
I keep meaning to blog more often; there are so many things that I'd like to say, and so many updates that I'd like to give...and yet life often gets in the way and I am so busy all the time that time passes without my getting to the computer.
Here is a short attempt to catch up:
My single New Year's Resolution is to be more patient with Tessa. I find myself barking at her, or giving a time out, too often, and I am determined to check myself and to be more understanding of her wants and desires. Included in this resolution is the promise to spend more active 1:1 time with Tessa. Of course, she and I are together almost all the time, but often we are doing different things when we're together; I'm chatting with another mom as she plays with her friend, or I'm making dinner while she's doing art, or I'm cleaning up breakfast as she's playing. I'm trying to read to her more often, really play with her at the park, and get down on my hands and knees to make puzzles, play Polly Pocket, play a board game, etc. This is my number one priority for the year. Time has already been stolen from us, with over a year of cancer treatment, and I'm determined to make the most of our time together. Tessa will never remember if the laundry was caught up, but she will remember that her mother played with her.
2007 has started with a bang, and many exciting opportunities are on the horizon. It is my goal -different than a resolution, I think - to run a marathon in 2007, and so I'm training toward that goal. I plan to do the Whidbey Island Half Marathon in April, right before we go to Hawaii, and to have a bikini-ready body for Hawaii. (Wahooooo!) "The big event" is the Portland Marathon on October 7, 2007....if only I could travel again right after that! LOL
My breast cancer life has changed quite significantly in the past year, and it's not just the length of my hair that I'm talking about. Last year, there were dozens of appointments each month, and I felt so terrible that every moment was taken up with breast cancer. This year, my personal fight has turned into a public one, and I'm fighting the beast in other ways. I have three main "breast cancer" events in 2007:
- The Breast Cancer 3-Day. We have assembled a team of more than a dozen women, and I'm so excited to do this event again. Last year we raised $32,000 - I hope to raise $60,000 next year. It CAN be done, and I'm looking forward to it!
- Working actively with The Komen Foundation. I am getting quite involved with the local office (the Puget Sound affiliate of the Susan G. Komen Breast Cancer Foundation), and I'm on the committee for Race for the Cure. (It is my primary responsibility to write web content for the race.) I am also talking to the local Komen CEO about a speakers' bureau and participating in such.
- (This just in!) Today I spoke with a representative of Genentech, and I am officially signed up as a Patient Advocate. As such, my responsibilities would include public speaking, media opportunities, and possibly educational or promotional videos, all to promote breast cancer awareness and Herceptin. Genentech is the manufacturer of Herceptin, a drug which I have been taking since last September. Herceptin is perhaps THE biggest breakthrough in breast cancer research, and promises to cut my risk of recurrence by 52%, and so I am quite comfortable in promoting it. As Genentech is a for-profit corporation, I feel no need to work for them for free, so I will be paid an "honorarium" for my services to compensate me for my time. I'm excited to speak out for the cause, and I'm also excited to bring in some income for our family - we will see where this takes us. I will be working only occassionally, sometimes doing a telephone interview from home, and occassionally traveling within the northwest to do speaking engagements. My first activity is a training weekend in San Francisco next weekend, and I'll get paid for that. I hope that this is the begining of a very productive relationship between Genentech and myself...so we will see!
With that, I will close, as I am tired and the slopes of the Cascades (snowshoeing and sledding) call for tomorrow morning, weather permitting. It is mostly a good life that I lead, despite it all.
Love,
Kristina
Here is a short attempt to catch up:
My single New Year's Resolution is to be more patient with Tessa. I find myself barking at her, or giving a time out, too often, and I am determined to check myself and to be more understanding of her wants and desires. Included in this resolution is the promise to spend more active 1:1 time with Tessa. Of course, she and I are together almost all the time, but often we are doing different things when we're together; I'm chatting with another mom as she plays with her friend, or I'm making dinner while she's doing art, or I'm cleaning up breakfast as she's playing. I'm trying to read to her more often, really play with her at the park, and get down on my hands and knees to make puzzles, play Polly Pocket, play a board game, etc. This is my number one priority for the year. Time has already been stolen from us, with over a year of cancer treatment, and I'm determined to make the most of our time together. Tessa will never remember if the laundry was caught up, but she will remember that her mother played with her.
2007 has started with a bang, and many exciting opportunities are on the horizon. It is my goal -different than a resolution, I think - to run a marathon in 2007, and so I'm training toward that goal. I plan to do the Whidbey Island Half Marathon in April, right before we go to Hawaii, and to have a bikini-ready body for Hawaii. (Wahooooo!) "The big event" is the Portland Marathon on October 7, 2007....if only I could travel again right after that! LOL
My breast cancer life has changed quite significantly in the past year, and it's not just the length of my hair that I'm talking about. Last year, there were dozens of appointments each month, and I felt so terrible that every moment was taken up with breast cancer. This year, my personal fight has turned into a public one, and I'm fighting the beast in other ways. I have three main "breast cancer" events in 2007:
- The Breast Cancer 3-Day. We have assembled a team of more than a dozen women, and I'm so excited to do this event again. Last year we raised $32,000 - I hope to raise $60,000 next year. It CAN be done, and I'm looking forward to it!
- Working actively with The Komen Foundation. I am getting quite involved with the local office (the Puget Sound affiliate of the Susan G. Komen Breast Cancer Foundation), and I'm on the committee for Race for the Cure. (It is my primary responsibility to write web content for the race.) I am also talking to the local Komen CEO about a speakers' bureau and participating in such.
- (This just in!) Today I spoke with a representative of Genentech, and I am officially signed up as a Patient Advocate. As such, my responsibilities would include public speaking, media opportunities, and possibly educational or promotional videos, all to promote breast cancer awareness and Herceptin. Genentech is the manufacturer of Herceptin, a drug which I have been taking since last September. Herceptin is perhaps THE biggest breakthrough in breast cancer research, and promises to cut my risk of recurrence by 52%, and so I am quite comfortable in promoting it. As Genentech is a for-profit corporation, I feel no need to work for them for free, so I will be paid an "honorarium" for my services to compensate me for my time. I'm excited to speak out for the cause, and I'm also excited to bring in some income for our family - we will see where this takes us. I will be working only occassionally, sometimes doing a telephone interview from home, and occassionally traveling within the northwest to do speaking engagements. My first activity is a training weekend in San Francisco next weekend, and I'll get paid for that. I hope that this is the begining of a very productive relationship between Genentech and myself...so we will see!
With that, I will close, as I am tired and the slopes of the Cascades (snowshoeing and sledding) call for tomorrow morning, weather permitting. It is mostly a good life that I lead, despite it all.
Love,
Kristina
Monday, January 01, 2007
the new spam
This is the kind of thing I have the pleasure (not) of reading regularly. The statistics are particularly dreary; making it worse is that I've received this letter three times already.
-----------------------------
Dear Friend of the Young Survival Coalition,
As the holiday season is upon us, I find myself reflecting on my seven years with the YSC. I am so proud of what the YSC has achieved on behalf of the more than 11,000 young women who are diagnosed yearly with breast cancer. As a young breast cancer survivor myself, I have experienced firsthand just how much the YSC gives to young women diagnosed with the disease.
However, no matter how in awe I am of the gifts we give to young women diagnosed with breast cancer – hope, peer support and a home – I am always struck by how much more we as an organization need to do.
This fall, a long time friend, colleague and founding member of the YSC called, letting me know that after eight years of being ‘cancer free,’ she had been diagnosed with advanced breast cancer. The cancer had spread to her bones. This happened just two years after giving birth to her beautiful daughter, a miracle in so many ways.
That same week, another one of our close friends and constituents, Dona, a 44-year-old African American mother of three who, upon her return from a wonderful vacation in Puerto Rico, learned that her cancer, already in her liver and bones, had now progressed….now it was in her lungs…after being stable for four years, her body had become resistant to her treatment. Dona is trying to get past the fear that this may be her last Christmas with her husband and three sons...
To listen to the stories of both of these women, and countless others, and know they are experiencing breast cancer yet again, even after all the YSC has done for so many, is not only heart wrenching, it is unacceptable. And, it means that, while all of us in the breast cancer community and within the YSC have done SO much, we have SO much more to do.
The facts:
More than 11,000 young women will be diagnosed with breast cancer
Close to 1,400 of these young women will die
Only 50% of women diagnosed under the age of 40 will live 10 years past their initial diagnosis
There is NOT enough research done on young women diagnosed with breast cancer
These facts are haunting and inspiring at the same time, as they inspire us and drive the need for the YSC to continue to work passionately and ferociously to fight this disease; to provide young women with needed resources; and work with researchers to find out WHY young women are diagnosed with breast cancer.
And, it is this drive that has allowed the YSC to achieve more in 2006 than we have since our inception. Just a few of these accomplishments include:
Impacting the lives of more than 2,000 young women diagnosed with breast cancer who have found the answers to their questions and the peer support they need through the YSC’s ResourceLink – our premier peer support program.
Receiving more than 40 million hits on www.youngsurvival.org, the first place a young woman turns when diagnosed and the face of the organization. Since its inception in 1999, the YSC’s website has received more than 1 billion hits.
Launching a new program for young women living with advanced breast cancer including a monthly telephone support group as well as an educational video for young women diagnosed with metastatic breast cancer helping to decrease the sense of isolation a young woman feels when diagnosed with advanced breast cancer.
Continuing to co-host the largest international patient advocacy conference for young women diagnosed with breast cancer where 700+ attendees can network with each other, learn about the newest research and know that they are NOT alone.
Our eight affiliates continue to bring the mission of the YSC to their local communities decreasing isolation and building a much needed community.
Your support and your gifts make all of this possible.
There is not a day that goes by that I don’t think of the women we here at the YSC serve, and not just because I am a 10-year survivor diagnosed at the age of 27, but because they are truly my heroes and my inspiration.
I hope you will help the YSC continue to give the gift of hope and peer support to these women this holiday season by making a gift today. Your gift will truly make a difference, and will help young women attend our annual conference; provide them with informational resources – books, educational videos and fact sheets; and most importantly provide them with knowledge that they are not alone.
You can easily make your donation by visiting www.youngsurvival.org/donate or calling us at (646) 257-3000, and we will be more than happy to assist you over the phone.
I know that all the young women we work with will not just be appreciative of your gift and your thinking of them this holiday season, they will be delighted! It will be the best holiday gift they have ever received.
But, please make your gift today, before another young woman is diagnosed with breast cancer.
-----------------------------
Dear Friend of the Young Survival Coalition,
As the holiday season is upon us, I find myself reflecting on my seven years with the YSC. I am so proud of what the YSC has achieved on behalf of the more than 11,000 young women who are diagnosed yearly with breast cancer. As a young breast cancer survivor myself, I have experienced firsthand just how much the YSC gives to young women diagnosed with the disease.
However, no matter how in awe I am of the gifts we give to young women diagnosed with breast cancer – hope, peer support and a home – I am always struck by how much more we as an organization need to do.
This fall, a long time friend, colleague and founding member of the YSC called, letting me know that after eight years of being ‘cancer free,’ she had been diagnosed with advanced breast cancer. The cancer had spread to her bones. This happened just two years after giving birth to her beautiful daughter, a miracle in so many ways.
That same week, another one of our close friends and constituents, Dona, a 44-year-old African American mother of three who, upon her return from a wonderful vacation in Puerto Rico, learned that her cancer, already in her liver and bones, had now progressed….now it was in her lungs…after being stable for four years, her body had become resistant to her treatment. Dona is trying to get past the fear that this may be her last Christmas with her husband and three sons...
To listen to the stories of both of these women, and countless others, and know they are experiencing breast cancer yet again, even after all the YSC has done for so many, is not only heart wrenching, it is unacceptable. And, it means that, while all of us in the breast cancer community and within the YSC have done SO much, we have SO much more to do.
The facts:
More than 11,000 young women will be diagnosed with breast cancer
Close to 1,400 of these young women will die
Only 50% of women diagnosed under the age of 40 will live 10 years past their initial diagnosis
There is NOT enough research done on young women diagnosed with breast cancer
These facts are haunting and inspiring at the same time, as they inspire us and drive the need for the YSC to continue to work passionately and ferociously to fight this disease; to provide young women with needed resources; and work with researchers to find out WHY young women are diagnosed with breast cancer.
And, it is this drive that has allowed the YSC to achieve more in 2006 than we have since our inception. Just a few of these accomplishments include:
Impacting the lives of more than 2,000 young women diagnosed with breast cancer who have found the answers to their questions and the peer support they need through the YSC’s ResourceLink – our premier peer support program.
Receiving more than 40 million hits on www.youngsurvival.org, the first place a young woman turns when diagnosed and the face of the organization. Since its inception in 1999, the YSC’s website has received more than 1 billion hits.
Launching a new program for young women living with advanced breast cancer including a monthly telephone support group as well as an educational video for young women diagnosed with metastatic breast cancer helping to decrease the sense of isolation a young woman feels when diagnosed with advanced breast cancer.
Continuing to co-host the largest international patient advocacy conference for young women diagnosed with breast cancer where 700+ attendees can network with each other, learn about the newest research and know that they are NOT alone.
Our eight affiliates continue to bring the mission of the YSC to their local communities decreasing isolation and building a much needed community.
Your support and your gifts make all of this possible.
There is not a day that goes by that I don’t think of the women we here at the YSC serve, and not just because I am a 10-year survivor diagnosed at the age of 27, but because they are truly my heroes and my inspiration.
I hope you will help the YSC continue to give the gift of hope and peer support to these women this holiday season by making a gift today. Your gift will truly make a difference, and will help young women attend our annual conference; provide them with informational resources – books, educational videos and fact sheets; and most importantly provide them with knowledge that they are not alone.
You can easily make your donation by visiting www.youngsurvival.org/donate or calling us at (646) 257-3000, and we will be more than happy to assist you over the phone.
I know that all the young women we work with will not just be appreciative of your gift and your thinking of them this holiday season, they will be delighted! It will be the best holiday gift they have ever received.
But, please make your gift today, before another young woman is diagnosed with breast cancer.
Wednesday, December 27, 2006
Another breast cancer angel
Today I received the news that an online "friend," whom I had mentioned in my earlier post as having posted her good-bye to the YSC group, passed away yesterday. She was a lovely woman, and a fighter, and she leaves behind children.
I hate cancer.
I hate cancer.
Sick Tessa
Well, Tessa's cold has morphed into something yucky, and the poor kid isn't doing all that well. We met friends for lunch in the Junction, but Tessa didn't really want to talk or play...she just wanted to lay her head on me. Uh oh - that's not my girl at all! We called the nurses' line at the clinic, and the nurse was concerned that her symptoms (fever, deep cough, lethargy, lack of appetite) all pointed to pneumonia. Needless to say, we went to the doctor today in a hurry when we heard that! The doc does not believe that it's pneumonia...yet. Tessa's lungs don't sound like she has pneumonia, but sometimes the doc says they can miss that, so the poor girl is on her second round of antibiotics this month. (Fortunately, the last time she had any was April '05 so she hasn't been overdosed with them. Phew.) I really discussed the pros and cons of another round of antibiotics with the doc, but in the end, the fear of this bug really getting into her lungs worse than it aldready is prompted us to go for the second round.
Soooo, our Christmas vacation isn't full of going to the Children's Museum or aquarium or snowshoeing or having friends around for dinner...instead, it's filled with Clifford videos, reading stories, snuggling, and naps. We are disappointed, but the required downtime is probably good for all of us at some level.
I went to Barnes & Noble and picked up some chapter books for Tessa - I can't believe that she's ready for them, but she's just eating them up. We finished an entire "Junie B. Jones" book in one sitting today (big thumbs down from me on that one, but Tessa liked it) and now we're reading one about a princess who loves ponies - you can imagine what a hit that one is! I have a feeling we'll make it through several of them by the time Tessa perks up.
Tomorrow Ryan will stay home with Tessa while I go to get Herceptin and then spend some quality time with Michele; Friday, Ryan will go out and about (I sense a bike ride coming on!) while I stay home with Tessa. If we're lucky we'll go snowshoeing this weekend, but only time will tell.
Love,
Kristina
Soooo, our Christmas vacation isn't full of going to the Children's Museum or aquarium or snowshoeing or having friends around for dinner...instead, it's filled with Clifford videos, reading stories, snuggling, and naps. We are disappointed, but the required downtime is probably good for all of us at some level.
I went to Barnes & Noble and picked up some chapter books for Tessa - I can't believe that she's ready for them, but she's just eating them up. We finished an entire "Junie B. Jones" book in one sitting today (big thumbs down from me on that one, but Tessa liked it) and now we're reading one about a princess who loves ponies - you can imagine what a hit that one is! I have a feeling we'll make it through several of them by the time Tessa perks up.
Tomorrow Ryan will stay home with Tessa while I go to get Herceptin and then spend some quality time with Michele; Friday, Ryan will go out and about (I sense a bike ride coming on!) while I stay home with Tessa. If we're lucky we'll go snowshoeing this weekend, but only time will tell.
Love,
Kristina
Saturday, December 23, 2006
Taking a moment to catch my breath
With all of the chaos in my life lately, I feel like I haven't sat down for a moment just to breath. It's 10:28 on December 23, though, and I'm finally feeling like maybe I'm going to get it all done. Maybe!
All of the Christmas shopping is done, and all but a couple of gifts are wrapped. The groceries for Christmas are purchased (including an absolutely huge prime rib that has become the family favorite for Christmas dinner), and the menu is planned. The house has been decorated for a while, and it's pretty clean (except the floors, but with a dog, a cat, and a child, it's hopeless to keep them clean so we'll do the big scrub an hour before people arrive on Monday). The cranberry nut loaf that I make every year is a bit different this year due to a cranberry shortage (what the heck?! we called a dozen grocery stores, everyone was sold out) so it's raspberry nut bread, but in any case most of them are done and a few are in the oven as I speak. Tessa made gifts for family members, and they are complete.
Now, we're moving into the phase where it's time to relax. It's not a moment too soon, because much more of this running around and I would have completely lost my mind! It's been hard to get into the spirit this year with my fears and back pain, but I'm taking periodic pain killers for my back (no idea what it is, but it can wait) and the fears have been set aside for the moment.
Tessa is delighted with all this Santa business, and who can blame her? Her child's delight is so wonderful, and genuine, that it helps to bring me out of my grinchy-ness.
Tomorrow we will be with extended family on the Dahl side, with a visit (we hope) from the Surface7. It's a big potluck feast, and it will be wonderful to just hang with everyone and catch up. The young cousins - Tessa, Caleb, Joshua, and Gavin - will run around and play, and the parents will get a chance to sit back and just watch them. We might even go for a swim at my parents' pool...it's all very low key, and I can't wait.
Christmas Day will be at our house. In the morning, it will be just the three of us, hanging out in our pajamas and opening gifts slowly. Around noon I'll start prepping the roast - there are 13-14 of us for dinner, and I hope to have a sit down affair with all the china and a crisp white tablecloth and candles. Good food, family, friends, wine....it should be wonderful.
And a little highlight to keep me going when I feel too busy - we're going to Hawaii in April! My parents decided that we must go, and we did NOT say no! We haven't been on a big vacation in a few years, and I can't wait to relax on the beach. When I'm feeling down or overly stressed, the thought of laying on the Hawaiian sand is enough to keep me going. :-)
And that's all for now. Merry Christmas, everyone!
Love,
Kristina
All of the Christmas shopping is done, and all but a couple of gifts are wrapped. The groceries for Christmas are purchased (including an absolutely huge prime rib that has become the family favorite for Christmas dinner), and the menu is planned. The house has been decorated for a while, and it's pretty clean (except the floors, but with a dog, a cat, and a child, it's hopeless to keep them clean so we'll do the big scrub an hour before people arrive on Monday). The cranberry nut loaf that I make every year is a bit different this year due to a cranberry shortage (what the heck?! we called a dozen grocery stores, everyone was sold out) so it's raspberry nut bread, but in any case most of them are done and a few are in the oven as I speak. Tessa made gifts for family members, and they are complete.
Now, we're moving into the phase where it's time to relax. It's not a moment too soon, because much more of this running around and I would have completely lost my mind! It's been hard to get into the spirit this year with my fears and back pain, but I'm taking periodic pain killers for my back (no idea what it is, but it can wait) and the fears have been set aside for the moment.
Tessa is delighted with all this Santa business, and who can blame her? Her child's delight is so wonderful, and genuine, that it helps to bring me out of my grinchy-ness.
Tomorrow we will be with extended family on the Dahl side, with a visit (we hope) from the Surface7. It's a big potluck feast, and it will be wonderful to just hang with everyone and catch up. The young cousins - Tessa, Caleb, Joshua, and Gavin - will run around and play, and the parents will get a chance to sit back and just watch them. We might even go for a swim at my parents' pool...it's all very low key, and I can't wait.
Christmas Day will be at our house. In the morning, it will be just the three of us, hanging out in our pajamas and opening gifts slowly. Around noon I'll start prepping the roast - there are 13-14 of us for dinner, and I hope to have a sit down affair with all the china and a crisp white tablecloth and candles. Good food, family, friends, wine....it should be wonderful.
And a little highlight to keep me going when I feel too busy - we're going to Hawaii in April! My parents decided that we must go, and we did NOT say no! We haven't been on a big vacation in a few years, and I can't wait to relax on the beach. When I'm feeling down or overly stressed, the thought of laying on the Hawaiian sand is enough to keep me going. :-)
And that's all for now. Merry Christmas, everyone!
Love,
Kristina
Thursday, December 21, 2006
Clean scan!
Thank you for your thoughts and prayers.....they worked!
I just returned from the bone scan. The tech, Mike, had me wait while "the experts" reviewed my scans, and he confirmed that there was no evidence of disease. I now consider Mike to be my personal Santa Claus, and my Christmas wishes are taken care of!
Of course I still have to figure out what's wrong; I have pain and I need to figure it out. Frankly, though, I don't care what it is. If it's not going to kill me, I can deal with it. Herniated disc? Fine. Muscle spasms? Fine. Just not cancer!
Lying in the scan, which took about an hour, I believe I actually tasted fear. Fear tastes metallic and cold. Fear is looking up at the ugly ceiling tiles and wondering if this is it, if my time is up. Fear is wondering if this will be my last Christmas. Fear is wondering if my family could handle another cancer diagnosis. Fear, fear, fear. Unfounded fears, as it turns out. I have been granted a reprieve.
Love,
Kristina
I just returned from the bone scan. The tech, Mike, had me wait while "the experts" reviewed my scans, and he confirmed that there was no evidence of disease. I now consider Mike to be my personal Santa Claus, and my Christmas wishes are taken care of!
Of course I still have to figure out what's wrong; I have pain and I need to figure it out. Frankly, though, I don't care what it is. If it's not going to kill me, I can deal with it. Herniated disc? Fine. Muscle spasms? Fine. Just not cancer!
Lying in the scan, which took about an hour, I believe I actually tasted fear. Fear tastes metallic and cold. Fear is looking up at the ugly ceiling tiles and wondering if this is it, if my time is up. Fear is wondering if this will be my last Christmas. Fear is wondering if my family could handle another cancer diagnosis. Fear, fear, fear. Unfounded fears, as it turns out. I have been granted a reprieve.
Love,
Kristina
Wednesday, December 20, 2006
having a hard day
The news about my YSC friend has me down. My impending bone scan (tomorrow) has me down. My never-going-to-get-it-done feelings about Christmas have me feeling bah-humbug.
But here's the zinger. I recently read, from a reputable source, that women diagnosed with breast cancer when they are under the age of 45 have a 50% 10 year survival rate. Translated, that means that I have a 50% chance of being dead in 8.5 years. I already knew that I had an 82% five year survival rate, but somehow that seems easier to beat than 50% over 10 years.
**** (put your nastiest four letter word here)
Reading the statistic doesn't change anything, but I'm having a very hard time not thinking about it and basically it makes me feel weak.
Please do not say, "This doesn't apply to you." Please do not tell me that my good attitude will save me. Please do not tell me that it's all going to be okay, because you don't know that. Nobody knows that. I am watching amazing women fall, and it makes me hurt. Breast cancer doesn't discriminate, and it often takes strong, vibrant, amazing women with good attitudes, good diets, and good doctors. And I HATE IT.
Merry freakin' Christmas. I am feeling like Scrooge right now, and the lights on my tree, the cards on my wall, the carols on the stereo are not knocking me out of my bad attitude.
I hope this feeling passes soon.
Kristina
PS If anyone knows of a good place to buy a new washing machine, please let me know. Ours died and we are currently on the hunt for a new one. That's what I'm doing today instead of wrapping gifts (sigh).
But here's the zinger. I recently read, from a reputable source, that women diagnosed with breast cancer when they are under the age of 45 have a 50% 10 year survival rate. Translated, that means that I have a 50% chance of being dead in 8.5 years. I already knew that I had an 82% five year survival rate, but somehow that seems easier to beat than 50% over 10 years.
**** (put your nastiest four letter word here)
Reading the statistic doesn't change anything, but I'm having a very hard time not thinking about it and basically it makes me feel weak.
Please do not say, "This doesn't apply to you." Please do not tell me that my good attitude will save me. Please do not tell me that it's all going to be okay, because you don't know that. Nobody knows that. I am watching amazing women fall, and it makes me hurt. Breast cancer doesn't discriminate, and it often takes strong, vibrant, amazing women with good attitudes, good diets, and good doctors. And I HATE IT.
Merry freakin' Christmas. I am feeling like Scrooge right now, and the lights on my tree, the cards on my wall, the carols on the stereo are not knocking me out of my bad attitude.
I hope this feeling passes soon.
Kristina
PS If anyone knows of a good place to buy a new washing machine, please let me know. Ours died and we are currently on the hunt for a new one. That's what I'm doing today instead of wrapping gifts (sigh).
Please pray for a friend
Today I went to the YSC website, and read this:
-------
This is the hardest e-mail I will ever have to write. I will be admitted into the hospital tomorrow. I would post this general thread but since out wind storm I do not have service. I have a terrible feeling that I will not survive this time. l want everyone to know how much I love you I am scheduled to be admitted tomorrow for drug rehabilitation- there are telling me finally that at the dosage to Deluded that I am currently on I am addicted and need to immediately be tampered down,
Even if I survive the rehabilitation I do not get a sense of exception that I will survive long term, and to be honest I do not have a positive feeling about the situation. I hate to say good-bye but to tomorrow you all and I do not want to leave without being honest with you and me. Excuse my drug induced writing I am sure that it does make a lost of sense.
I am making Peace with my fate so far and I resent leaving my family so young. I wish the best for everyone.
--------
This wonderful woman has been living with stage IV cancer, and things are not going well. She needs a miracle.
She and I have never met, but I've shared her wisdom online. My heart is breaking for her, and for her family.
Kristina
-------
This is the hardest e-mail I will ever have to write. I will be admitted into the hospital tomorrow. I would post this general thread but since out wind storm I do not have service. I have a terrible feeling that I will not survive this time. l want everyone to know how much I love you I am scheduled to be admitted tomorrow for drug rehabilitation- there are telling me finally that at the dosage to Deluded that I am currently on I am addicted and need to immediately be tampered down,
Even if I survive the rehabilitation I do not get a sense of exception that I will survive long term, and to be honest I do not have a positive feeling about the situation. I hate to say good-bye but to tomorrow you all and I do not want to leave without being honest with you and me. Excuse my drug induced writing I am sure that it does make a lost of sense.
I am making Peace with my fate so far and I resent leaving my family so young. I wish the best for everyone.
--------
This wonderful woman has been living with stage IV cancer, and things are not going well. She needs a miracle.
She and I have never met, but I've shared her wisdom online. My heart is breaking for her, and for her family.
Kristina
Monday, December 18, 2006
Update from Storm 2006
Just a quick update to let everyone know that we are okay after the big storm that hit Seattle last week. Our only damage was that our computer room got some water (seeping from the ground? we're still not sure how it entered the house) and ruined the carpet; we never lost power. We consider ourselves extremely fortunate, as we know many people who are still without power, all these days later. It's been at freezing level at night, and so this is particularly difficult for those who don't have heat and electricity. We have tried our best to help people out; we have friends staying with us as their house still doesn't have power and because they had the additional misfortune of having four feet (yes you read that correctly) of water in their newly remodeled basement. They are taking it well and I feel that I can learn a lot from their optimism and positive attitudes. It's especially hard during the busy Christmas season to have such troubles, and I am reminded how fortunate we are to have come out so unscathed from such a nasty storm.
My parents and my aunt & uncle are still without power; my grandma just got her power back yesterday. My parents' business is still without power and we are all hoping that it goes back online soon....pools etc without power can cause big problems and I hope that soon it will be back to normal so that my extended family can breathe a sigh of relief. My parents are living in their motorcoach - thank goodness for that, because they have a generator and so they're snug and warm.
I need to add here that I consider it a major gift that we are able to help our friends in their time of need. For over a year, all I did was take and take and take the support that was offered, and I am eternally grateful to all those who gave generously of their time and gifts to keep our family afloat. Now, as I sit here in good health, it is a gift and a treat to be able to help others. I am so grateful to have a house with a guest room, filled with toys for the girls to play with; for food in the cupboard; for warm bed linens; for friends and family. I am grateful for my strong body, so that I can easily provide a little babysitting or make a meal for others. I am so grateful to be in a position to GIVE instead of just taking, and I hope that our friends understand that really, they are giving ME a gift by accepting our help.
A short note here on the nature of floods: My heart goes out once again to the Katrina victims. Here in Seattle, many were impacted by the storm (though not nearly as badly as those in Katrina, I realize) but the major difference is that not EVERYONE was impacted, and so neighbors can help neighbors. Many families have bonded to help our friends...the men shoveled out mud together, some families took loads of muddied laundry and bed linens to be cleaned, others sorted through photographs and albums to save them, etc. In Katrina, everyone needed help, so many couldn't help each other, each needing their own help. In Seattle, many families have the resources to help each other. I can only imagine the devastation of Katrina, now that I've had this tiny taste of it here, and my heart goes out to those who still suffer from the aftereffects.
This is my first time on the computer since Thursday; since our computer room was soggy we had to remove everything, of course, and so we've just gotten back online. If I owe you an email, please forgive me!
Love,
Kristina
My parents and my aunt & uncle are still without power; my grandma just got her power back yesterday. My parents' business is still without power and we are all hoping that it goes back online soon....pools etc without power can cause big problems and I hope that soon it will be back to normal so that my extended family can breathe a sigh of relief. My parents are living in their motorcoach - thank goodness for that, because they have a generator and so they're snug and warm.
I need to add here that I consider it a major gift that we are able to help our friends in their time of need. For over a year, all I did was take and take and take the support that was offered, and I am eternally grateful to all those who gave generously of their time and gifts to keep our family afloat. Now, as I sit here in good health, it is a gift and a treat to be able to help others. I am so grateful to have a house with a guest room, filled with toys for the girls to play with; for food in the cupboard; for warm bed linens; for friends and family. I am grateful for my strong body, so that I can easily provide a little babysitting or make a meal for others. I am so grateful to be in a position to GIVE instead of just taking, and I hope that our friends understand that really, they are giving ME a gift by accepting our help.
A short note here on the nature of floods: My heart goes out once again to the Katrina victims. Here in Seattle, many were impacted by the storm (though not nearly as badly as those in Katrina, I realize) but the major difference is that not EVERYONE was impacted, and so neighbors can help neighbors. Many families have bonded to help our friends...the men shoveled out mud together, some families took loads of muddied laundry and bed linens to be cleaned, others sorted through photographs and albums to save them, etc. In Katrina, everyone needed help, so many couldn't help each other, each needing their own help. In Seattle, many families have the resources to help each other. I can only imagine the devastation of Katrina, now that I've had this tiny taste of it here, and my heart goes out to those who still suffer from the aftereffects.
This is my first time on the computer since Thursday; since our computer room was soggy we had to remove everything, of course, and so we've just gotten back online. If I owe you an email, please forgive me!
Love,
Kristina
Wednesday, December 13, 2006
spoke to Dr. Rinn
Well, today Dr. Rinn called me back (she'd been out of the office) and after hearing my symptoms she said she was not at all concerned. Femara causes joint pain (no surprise to hear that) and as she put it, "makes you creakier and more susceptable to pains." She said that the pain I had the other night was likely a muscle spasm, and that Femara might have influenced that, too.
She also said that if I needed a bone scan for peace of mind, she'd order it for me. I am now waiting for the scheduling call - I want that peace of mind. Ryan's the love of my life, but I want NED* to stay my boyfriend!
This is probably nothing. I just want to be sure.
And this, my friends, is what breast cancer is like. Lots of uncertainty. Lots of tests. Lots of needles. Lots of radioactive dye. Lots of 3 hour appointments.
I read recently in an abstract from the recent San Antonio conference for breast cancer website that there is a study that has determined that ER+ women (that's me) are most likely to recur between years 2-3 after diagnosis. This knowledge weighs heavily on me; June is my two year diagnosis anniversary. The good news is that after 10 years my odds of a recurrance are no greater than the general population, according to this study. Just waiting until 2015!
Love,
Kristina
*NED = No Evidence of Disease
PS I am scheduled for Thursday the 21st; I should have results on Friday, just before Christmas.
She also said that if I needed a bone scan for peace of mind, she'd order it for me. I am now waiting for the scheduling call - I want that peace of mind. Ryan's the love of my life, but I want NED* to stay my boyfriend!
This is probably nothing. I just want to be sure.
And this, my friends, is what breast cancer is like. Lots of uncertainty. Lots of tests. Lots of needles. Lots of radioactive dye. Lots of 3 hour appointments.
I read recently in an abstract from the recent San Antonio conference for breast cancer website that there is a study that has determined that ER+ women (that's me) are most likely to recur between years 2-3 after diagnosis. This knowledge weighs heavily on me; June is my two year diagnosis anniversary. The good news is that after 10 years my odds of a recurrance are no greater than the general population, according to this study. Just waiting until 2015!
Love,
Kristina
*NED = No Evidence of Disease
PS I am scheduled for Thursday the 21st; I should have results on Friday, just before Christmas.
Monday, December 11, 2006
alternate gift ideas
I got this in email today and thought I'd pass it along. My favorite breast cancer charity is the Susan G. Komen Breast Cancer Foundation (they are the recipients of the Breast Cancer 3-Day and Race for the Cure funds) at www.komen.org , but breastcancer.org is very informative and they do good work too.
-----------------------
This holiday season, give the gift of medical knowledge and personal confidence to women and their loved ones around the world. Help them overcome their fears and get the best breast cancer treatment possible. Your donation will help breastcancer.org continue to provide our programs at no cost to over 8 million visitors next year.
Perhaps you would like to make a gift in someone else's name this holiday season. Honor your family members, friends and co-workers with a heart-felt gift that is sure to be appreciated. This type of holiday gift is life-affirming, positive, and comes in any price denomination you like beginning at $5.
Consider the beauty of a gift that never goes to waste. For example:
-- Rather than giving bubble bath, a $10 gift to breastcancer.org can provide 22 young women with the tools to assess their own personal risk of breast cancer and make lifestyle choices that reduce those risks.
-- Instead of buying an expensive pair of jeans, consider making a $50 gift to provide 110 newly diagnosed women with the gift of knowledge so that they can fully research and understand their diagnosis, pathology report, and treatment options.
-- In place of a $100 department store gift card, a $100 gift helps breastcancer.org distribute 75 booklets to breast cancer patients and their loved ones who are seeking answers to critical questions about their pathology report, treatment options and fears about treatment.
Please know that every $10 that you contribute allows breastcancer.org to support and educate the lives of another 22 of the millions of individuals living today who will be diagnosed with breast cancer in their lifetime. Thank you for your support!
To give a gift, please click here:
http://www.breastcancer.org/dh.html
Our very best holiday wishes to you and yours.
Most sincerely,
Marisa C. Weiss,
President and Founder, breastcancer.org
Hope Wohl,
CEO, breastcancer.org
-----------------------
This holiday season, give the gift of medical knowledge and personal confidence to women and their loved ones around the world. Help them overcome their fears and get the best breast cancer treatment possible. Your donation will help breastcancer.org continue to provide our programs at no cost to over 8 million visitors next year.
Perhaps you would like to make a gift in someone else's name this holiday season. Honor your family members, friends and co-workers with a heart-felt gift that is sure to be appreciated. This type of holiday gift is life-affirming, positive, and comes in any price denomination you like beginning at $5.
Consider the beauty of a gift that never goes to waste. For example:
-- Rather than giving bubble bath, a $10 gift to breastcancer.org can provide 22 young women with the tools to assess their own personal risk of breast cancer and make lifestyle choices that reduce those risks.
-- Instead of buying an expensive pair of jeans, consider making a $50 gift to provide 110 newly diagnosed women with the gift of knowledge so that they can fully research and understand their diagnosis, pathology report, and treatment options.
-- In place of a $100 department store gift card, a $100 gift helps breastcancer.org distribute 75 booklets to breast cancer patients and their loved ones who are seeking answers to critical questions about their pathology report, treatment options and fears about treatment.
Please know that every $10 that you contribute allows breastcancer.org to support and educate the lives of another 22 of the millions of individuals living today who will be diagnosed with breast cancer in their lifetime. Thank you for your support!
To give a gift, please click here:
http://www.breastcancer.org/dh.html
Our very best holiday wishes to you and yours.
Most sincerely,
Marisa C. Weiss,
President and Founder, breastcancer.org
Hope Wohl,
CEO, breastcancer.org
Roller coaster ride
I hesitated to post this here, but since I'm aiming at honesty I've decided to post it. I originally wrote this for a post on YSC to get consolation from my breast cancer support group.
Every woman I've met (mostly online) has freaked out about mets at one time or another. I guess it's my turn to freak out...I'm still on the roller coaster ride.
----------------
Okay, it's my turn.
So far I have done a very good job of not freaking out over things. Up until now, I have not spent time dwelling on the idea of mets. Until now, I have not wondered if each little ache or pain was mets.
Sigh. I knew this would come but that doesn't make me any more prepared for it!
So it's my turn to freak out. I have had some pain in my lower back/hip area for a few months. I had chalked it up to being active and taking up running and having lots of surgeries in my upper chest/lat flap areas, so I had decided not to stress. I brought it up to my oncologist, casually, and she said, "No wonder you have a bit of pain every now and then - look at how hard you push yourself!"
But then last night I decided to have a bubble bath. I was just about to submerge myself under water, and I raised my hand to smooth my hair from my face, and suddenly I felt searing pain. I've had little tastes of that before and thought they were muscle spasms or something, but this was mind-numbnig. I waited for it to pass. I held still for 15 minutes, hoping that it would go away. Finally, I called to my husband (who was downstairs) to come up, and by the time he heard me I was sitting there crying. I couldn't move at all without searing pain in that area - sort of right above my butt, low back, on the right side. It took us 15 minutes to figure out how to get me out of the tub - I was terrified that if he lifted me the pain would be tooooo awful.
It took about 15 more minutes to get me out of the tub, dried off, and into the bedroom. Ryan helped me get in PJs, and got me some Flexoril and Vicodan (leftovers from my last surgery) and I was finally able to get into bed, where I sat without moving for another hour before the pain went away enough for me to sleep.
This morning the pain isn't unmanageable, but it's still there, and more than it had been in the past couple of months.
Now I can't make the thought of bone mets go away. I called the onc, who is out of the office today, but they'll call me back within the day. I've asked for a bone scan.
Can anybody talk me off the ceiling? Can you either assure me that this is not bone mets and a lucky pinched nerve or something, or convince me that if it's bone mets I will still be fine and live to be 100? Please?
-------------
One of the girls on the YSC site recently had something like this, but in her neck. It turns out that she "just" has a broken neck. Everyone has been cheering her and saying "I'm so glad it's nothing" and "Thank God it's a broken neck and nothing worse" and the like. She needs surgery, but the sentiment is understood: as long as it's not permanent and won't kill you, WHO CARES!
The flip side is that I know several online people who were recently diagnosed with mets (metastases: the breast cancer moved into other organs or bones)...one day stage II, the next, stage IV.
Ugh.
Every woman I've met (mostly online) has freaked out about mets at one time or another. I guess it's my turn to freak out...I'm still on the roller coaster ride.
----------------
Okay, it's my turn.
So far I have done a very good job of not freaking out over things. Up until now, I have not spent time dwelling on the idea of mets. Until now, I have not wondered if each little ache or pain was mets.
Sigh. I knew this would come but that doesn't make me any more prepared for it!
So it's my turn to freak out. I have had some pain in my lower back/hip area for a few months. I had chalked it up to being active and taking up running and having lots of surgeries in my upper chest/lat flap areas, so I had decided not to stress. I brought it up to my oncologist, casually, and she said, "No wonder you have a bit of pain every now and then - look at how hard you push yourself!"
But then last night I decided to have a bubble bath. I was just about to submerge myself under water, and I raised my hand to smooth my hair from my face, and suddenly I felt searing pain. I've had little tastes of that before and thought they were muscle spasms or something, but this was mind-numbnig. I waited for it to pass. I held still for 15 minutes, hoping that it would go away. Finally, I called to my husband (who was downstairs) to come up, and by the time he heard me I was sitting there crying. I couldn't move at all without searing pain in that area - sort of right above my butt, low back, on the right side. It took us 15 minutes to figure out how to get me out of the tub - I was terrified that if he lifted me the pain would be tooooo awful.
It took about 15 more minutes to get me out of the tub, dried off, and into the bedroom. Ryan helped me get in PJs, and got me some Flexoril and Vicodan (leftovers from my last surgery) and I was finally able to get into bed, where I sat without moving for another hour before the pain went away enough for me to sleep.
This morning the pain isn't unmanageable, but it's still there, and more than it had been in the past couple of months.
Now I can't make the thought of bone mets go away. I called the onc, who is out of the office today, but they'll call me back within the day. I've asked for a bone scan.
Can anybody talk me off the ceiling? Can you either assure me that this is not bone mets and a lucky pinched nerve or something, or convince me that if it's bone mets I will still be fine and live to be 100? Please?
-------------
One of the girls on the YSC site recently had something like this, but in her neck. It turns out that she "just" has a broken neck. Everyone has been cheering her and saying "I'm so glad it's nothing" and "Thank God it's a broken neck and nothing worse" and the like. She needs surgery, but the sentiment is understood: as long as it's not permanent and won't kill you, WHO CARES!
The flip side is that I know several online people who were recently diagnosed with mets (metastases: the breast cancer moved into other organs or bones)...one day stage II, the next, stage IV.
Ugh.
Sunday, December 10, 2006
Christmas Cocktail Party
We've come a long way, baby, and there is so much to celebrate!
And here I am a year ago (December 14, 2005): my last chemo treatment. Bloated face, no hair, and the fatigue and illness shows in the photos. I pray that I never feel that way ever again!
Tuesday, December 05, 2006
Finding meaning
Recently someone on my young breast cancer survivor's support group website posted a question about making changes after treatment was over, and trying to find meaning in life after breast cancer. This is something I think about constantly - truly constantly. I thought I'd share my response here, though it's not articulated terribly well, because these thoughts are what are lurking in my brain, trying to make themselves understood, much of the time.
Kristina
-----------
This is something I think about all the time. ALL the time. I completely understand where you are coming from, though I do not quite have my mind wrapped around the answers yet.
Here is what I think I understand so far:
We are all here on this planet for a short amount of time. Having cancer doesn't necessarily change our timeframe, it just makes us aware of how mortal we are, and reminds us that old age is not a guarantee. It is this awareness that makes us different from others: other people, those who have never experienced a life threatening health crisis, do not yet understand that life is short. We understand it in ways that we never dreamed of, and this changes us.
The change is frightening; loss of innocence is frightening. However, for this price (it is NOT a gift, as it has come at a heavy price) we gain some keys to insights not previously offered to us. I think that the insights are different person to person, but I can share mine with you.
1. We only get one body, and we must take care of that body or suffer the consequences. Before my diagnosis, I was 20 pounds overweight and not exercising regularly, full of the regular excuses (no time, daughter wouldn't go to a gym daycare without crying, too tired, etc). Now, I watch my health - including my diet and fitness - because I know what illness feels like, and I don't wish to repeat my experiences of being a critically ill patient. Diabetes, heart disease, osteoarthritis, etc. are all conditions influenced by lifestyle, and if I can avoid those diseases I will. And, of course, the 50% reduced rate of recurrance for those with a healthy BMI who exercise regularly but not obsessively. I always knew that it was good for me to take care of my body...but now I do. No excuses, I jsut do it.
2. I am a likeable person just the way I am - I do not need to put on a false front to please other people. I have always worried about what people thought of me; I think everyone does to some degree and perhaps I did more than some. Well, with cancer, I was stripped of pretense: my body was completely distorted (no breast, bald, 20 extra pounds from dx, etc.), I was hardly able to think a coherent thought (couldn't read The New Yorker because I couldn't concentrate...my favorite magazine!), I couldn't offer to help a friend because I was too tired...all of the usual. And people still liked me. And they told me that I was inspirational, and they drew close to me. This startled me more than I can say; at first, I didn't understand it at all. Now, however, I see more in myself of what they saw. I am generous with my friends, I am enthusiastic and optimistic, I love to laugh, I am loyal to my friends, and I am kind. I don't question these things any more, and therefore I allow my real self to show through all the time. I talk a lot, I'm unusually outgoing and social, I love to have people over all the time and cook for them...and I love it. I don't shut up to please people by being quiet; I speak my opinions loudly, though hopefully not rudely...and whaddayaknow, people like it and listen to me!
3. I am stronger than I ever dreamed possible. This strength means that I do not feel fear of the unknown in ways I have felt fear before. I am not afraid of saying the wrong thing; I can handle the consequences of speaking my mind. I am not afraid to run a marathon, because the pain of training is nothing compared to the pain of treatment. I can help others in pain, because I know what pain feels like, emotionally and physically, and I'm not afraid to witness it. I am stronger than most people, and as such I have a responsibility to myself and others to use that strength.
4. I am worth it. I am worth pretty clothes, time to read good books, date nights with my husband, a bottle of wine shared with girlfriends, walks on the beach, a good haircut....I am worth it. I do not mean that I now need to spend beyond my means to have nice things, just that I am worth it and I don't need to justify my existance to anyone. I know my own value, and it is high.
5. I am meant to do something meaningful on this planet. I have decided that my task is to be a part of finding the cure for breast cancer. I am working with the Susan G. Komen Foundation to fundraise, and I will not stop until we have found a cure. I find great meaning in this work!
6. My will to live is stronger than I ever imagined possible. There is no pain that I would not endure to stay alive to watch my daughter grow, to laugh with her, to hold her hand as she becomes a woman. I am not afraid of knives, needles, poison.
These thoughts are still disconnected; I think about them constantly, and try to figure out the pieces. I know I must run a marathon, work with the SGK to find a cure, speak out against the disease, fight the hard work that it takes to make my marriage the best that it can be, and spend more time playing with my daughter and holding my husband's hand and laughing with friends and building sandcastles on the beach and hiking and cooking for friends than I spend commuting, doing laundry, worrying about what others think of me, or playing Keep Up with the Jones'.
I am NOT the person I was before diagnosis. Cancer has changed me, for good and for bad. Like you, I refuse to let the lessons slip away. I am changing my life's habits, and hopefully modeling them to my daughter so that she can grow up with these ideas of herself.
I am a PollyAnna and proud of it. I have my moments of sheer terror and anger and confusion, but when it comes down to it I am an optimist, and I am determined to take the good out of this situation and use every last drop of it.
And with all of those ramblings, I'll close with this last one: I am committed to squeezing every last drop of living out of every day. I am always up for an adventure, and I seek out beauty in my life, reveling in it where I find it (whether it's the smile of a friend, or the power of a rainstorm, or a delicious piece of chocolate cake, or a pretty piece of jewelry, or the kindness of a stranger, or a hike in the forest, or....well, you get the idea!) and never forgetting for one minute how lucky I am to have these moments.
Kristina
-----------
This is something I think about all the time. ALL the time. I completely understand where you are coming from, though I do not quite have my mind wrapped around the answers yet.
Here is what I think I understand so far:
We are all here on this planet for a short amount of time. Having cancer doesn't necessarily change our timeframe, it just makes us aware of how mortal we are, and reminds us that old age is not a guarantee. It is this awareness that makes us different from others: other people, those who have never experienced a life threatening health crisis, do not yet understand that life is short. We understand it in ways that we never dreamed of, and this changes us.
The change is frightening; loss of innocence is frightening. However, for this price (it is NOT a gift, as it has come at a heavy price) we gain some keys to insights not previously offered to us. I think that the insights are different person to person, but I can share mine with you.
1. We only get one body, and we must take care of that body or suffer the consequences. Before my diagnosis, I was 20 pounds overweight and not exercising regularly, full of the regular excuses (no time, daughter wouldn't go to a gym daycare without crying, too tired, etc). Now, I watch my health - including my diet and fitness - because I know what illness feels like, and I don't wish to repeat my experiences of being a critically ill patient. Diabetes, heart disease, osteoarthritis, etc. are all conditions influenced by lifestyle, and if I can avoid those diseases I will. And, of course, the 50% reduced rate of recurrance for those with a healthy BMI who exercise regularly but not obsessively. I always knew that it was good for me to take care of my body...but now I do. No excuses, I jsut do it.
2. I am a likeable person just the way I am - I do not need to put on a false front to please other people. I have always worried about what people thought of me; I think everyone does to some degree and perhaps I did more than some. Well, with cancer, I was stripped of pretense: my body was completely distorted (no breast, bald, 20 extra pounds from dx, etc.), I was hardly able to think a coherent thought (couldn't read The New Yorker because I couldn't concentrate...my favorite magazine!), I couldn't offer to help a friend because I was too tired...all of the usual. And people still liked me. And they told me that I was inspirational, and they drew close to me. This startled me more than I can say; at first, I didn't understand it at all. Now, however, I see more in myself of what they saw. I am generous with my friends, I am enthusiastic and optimistic, I love to laugh, I am loyal to my friends, and I am kind. I don't question these things any more, and therefore I allow my real self to show through all the time. I talk a lot, I'm unusually outgoing and social, I love to have people over all the time and cook for them...and I love it. I don't shut up to please people by being quiet; I speak my opinions loudly, though hopefully not rudely...and whaddayaknow, people like it and listen to me!
3. I am stronger than I ever dreamed possible. This strength means that I do not feel fear of the unknown in ways I have felt fear before. I am not afraid of saying the wrong thing; I can handle the consequences of speaking my mind. I am not afraid to run a marathon, because the pain of training is nothing compared to the pain of treatment. I can help others in pain, because I know what pain feels like, emotionally and physically, and I'm not afraid to witness it. I am stronger than most people, and as such I have a responsibility to myself and others to use that strength.
4. I am worth it. I am worth pretty clothes, time to read good books, date nights with my husband, a bottle of wine shared with girlfriends, walks on the beach, a good haircut....I am worth it. I do not mean that I now need to spend beyond my means to have nice things, just that I am worth it and I don't need to justify my existance to anyone. I know my own value, and it is high.
5. I am meant to do something meaningful on this planet. I have decided that my task is to be a part of finding the cure for breast cancer. I am working with the Susan G. Komen Foundation to fundraise, and I will not stop until we have found a cure. I find great meaning in this work!
6. My will to live is stronger than I ever imagined possible. There is no pain that I would not endure to stay alive to watch my daughter grow, to laugh with her, to hold her hand as she becomes a woman. I am not afraid of knives, needles, poison.
These thoughts are still disconnected; I think about them constantly, and try to figure out the pieces. I know I must run a marathon, work with the SGK to find a cure, speak out against the disease, fight the hard work that it takes to make my marriage the best that it can be, and spend more time playing with my daughter and holding my husband's hand and laughing with friends and building sandcastles on the beach and hiking and cooking for friends than I spend commuting, doing laundry, worrying about what others think of me, or playing Keep Up with the Jones'.
I am NOT the person I was before diagnosis. Cancer has changed me, for good and for bad. Like you, I refuse to let the lessons slip away. I am changing my life's habits, and hopefully modeling them to my daughter so that she can grow up with these ideas of herself.
I am a PollyAnna and proud of it. I have my moments of sheer terror and anger and confusion, but when it comes down to it I am an optimist, and I am determined to take the good out of this situation and use every last drop of it.
And with all of those ramblings, I'll close with this last one: I am committed to squeezing every last drop of living out of every day. I am always up for an adventure, and I seek out beauty in my life, reveling in it where I find it (whether it's the smile of a friend, or the power of a rainstorm, or a delicious piece of chocolate cake, or a pretty piece of jewelry, or the kindness of a stranger, or a hike in the forest, or....well, you get the idea!) and never forgetting for one minute how lucky I am to have these moments.
Monday, December 04, 2006
It's everywhere
There are SMALL advantages to having breast cancer; they don't make it "worth it" and they're not gifts (I've paid heavily, thank you very much!) but I take what I can get. One is that when I get telephone solicitors seeking donations, my truthful story that "I was diagnosed with breast cancer last year and all of our charitable funds are going towards that cause," really gets them off my back.
Today, just a minute ago, the call was a bit different. I politely told the lady from the Seattle Aquarium my line, and she said, "I'm so sorry. My mom died of breast cancer 38 years ago, and I know how that is." The woman then asked me questions, commiserated with me, and told me that she was 25 when her mom passed away. It was obvious that she still misses her mother, and that she needed to talk about it for a minute. She mentioned how barbaric the treatments were; I agreed with her. I know that the treatments were worse then, and the prognosis was worse...but I couldn't help but think of being slashed (mastectomies, node dissection, hysterectomy/oopharectomy, port), burned (radiation...oh that was rough!), and poisoned (chemo; I will never forget my allergic reaction, in addition to the "normal" chemo side effects. Slashed, burned, and poisoned...I am convinced there must be a better way!
These conversations only strengthen my resolve to find a cure. Fast. Of course, looking at some stats, it will be a miracle if I live to see Tessa at 25; I want much much much much much more than that.
Fighting with every minute!
Kristina
Today, just a minute ago, the call was a bit different. I politely told the lady from the Seattle Aquarium my line, and she said, "I'm so sorry. My mom died of breast cancer 38 years ago, and I know how that is." The woman then asked me questions, commiserated with me, and told me that she was 25 when her mom passed away. It was obvious that she still misses her mother, and that she needed to talk about it for a minute. She mentioned how barbaric the treatments were; I agreed with her. I know that the treatments were worse then, and the prognosis was worse...but I couldn't help but think of being slashed (mastectomies, node dissection, hysterectomy/oopharectomy, port), burned (radiation...oh that was rough!), and poisoned (chemo; I will never forget my allergic reaction, in addition to the "normal" chemo side effects. Slashed, burned, and poisoned...I am convinced there must be a better way!
These conversations only strengthen my resolve to find a cure. Fast. Of course, looking at some stats, it will be a miracle if I live to see Tessa at 25; I want much much much much much more than that.
Fighting with every minute!
Kristina
Tessa and Santa
Tessa loves to visit Santa! Here's a memory shot of Tessa with Santa when she was a baby, alongside Nina and Lexi (I love that shot!); and here are this year's Santa pics: Santa and Tessa, and then Tessa with Lexi & Nina again. This year all three girls had fun...but it really brought back the memories to see them together with Santa again. Tessa was doing only the cheesiest of smiles, and then this tongue picture....so much for showing off her pretty face! The tongue picture does capture some of who she is right now, though...silly and playful.
I am healing well. As a matter of fact, I did a dinner party for 10 yesterday (my dad's birthday) and recovered just fine. Hurrah! And now I'm off to run 100 errands...!
Love,
Kristina
Wednesday, November 22, 2006
Then & Now
I thought it was time for a then and now post. There I am, the day before my mastectomy with Carolyn & Susan; then the bald pictures....which coincide with the fat pictures; then, a body shot after losing a lot of weight; and then the most recent body shot (lost even more weight) at Halloween. (These may be mixed up in order, so you'll have to use your imaginations!) Things have changed, and this Thanksgiving I have a lot to be grateful for. (I should get a "hair shot" where I'm not wearing a long sparkly wig...!)
Love,
Kristina
Thursday, November 16, 2006
Home again and doing well
I got home from the hospital on Tuesday night, earlier than anticipated, but I've been pretty out of it until today so haven't been on to update. I'm still loopy from Vicodan and need my afternoon nap, but I did have enough energy for a short post.
My new breast is tiny and bruised, but she shows potential. And the implant exchange on the other side went well, with almost NO pain post-surgery, and looks and feels almost exactly like a real breast (instead of the rock that it felt like with the expander in place).
Today I got the drains removed - hurrah. Those things are necessary, of course, but felt evil. This time, getting them pulled hurt...but it's done and that's a good thing.
I have felt surrounded by friends and family. My mom is staying with us until tomorrow to help care for us and I'm truly grateful.
I'm on Vicodan for pain and today I've been up for the first time, and actually left the house to go to the coffee shop (LOVE C&P!) and then to the plastic surgeon's office to have the drain removed...so I'm a bit wiped out now, and ready for a nap. But I love that with each passing hour I feel a bit better, and that I will continue to get better and better with no major setbacks looming on the horizon. HURRAH!
I'm loopy from the meds but let's see if I can get this thought down:
When I was first diagnosed, and had my mastectomy, I told Tessa "It's okay. One day the doctors will build me a new breast," and that thought carried me through some dark and dismal days. "One day" seemed like it would never come, but I held the thought. Well, that day finally did come, and I'm so glad of it. Seventeen months without a breast felt like ENOUGH, and I feel, as this new body part grows to resemble what it is replacing, that maybe I can put some of this behind me and move on to my real life...the one post-treatment. Sure, I'll be taking Femara, getting scans regularly, going for Herceptin infusions, talking to my oncologist etc....but the really really hard stuff is behind me and that is worth celebrating. "One day" has finally arrived!
Love,
Kristina
My new breast is tiny and bruised, but she shows potential. And the implant exchange on the other side went well, with almost NO pain post-surgery, and looks and feels almost exactly like a real breast (instead of the rock that it felt like with the expander in place).
Today I got the drains removed - hurrah. Those things are necessary, of course, but felt evil. This time, getting them pulled hurt...but it's done and that's a good thing.
I have felt surrounded by friends and family. My mom is staying with us until tomorrow to help care for us and I'm truly grateful.
I'm on Vicodan for pain and today I've been up for the first time, and actually left the house to go to the coffee shop (LOVE C&P!) and then to the plastic surgeon's office to have the drain removed...so I'm a bit wiped out now, and ready for a nap. But I love that with each passing hour I feel a bit better, and that I will continue to get better and better with no major setbacks looming on the horizon. HURRAH!
I'm loopy from the meds but let's see if I can get this thought down:
When I was first diagnosed, and had my mastectomy, I told Tessa "It's okay. One day the doctors will build me a new breast," and that thought carried me through some dark and dismal days. "One day" seemed like it would never come, but I held the thought. Well, that day finally did come, and I'm so glad of it. Seventeen months without a breast felt like ENOUGH, and I feel, as this new body part grows to resemble what it is replacing, that maybe I can put some of this behind me and move on to my real life...the one post-treatment. Sure, I'll be taking Femara, getting scans regularly, going for Herceptin infusions, talking to my oncologist etc....but the really really hard stuff is behind me and that is worth celebrating. "One day" has finally arrived!
Love,
Kristina
Friday, November 10, 2006
Surgery Update- Success!
Hi All
This is a short note from Ryan (aka the hubby) that Kristina's reconstruction surgery went very well today. Both Dr Miles and Kristina are very happy with the result. Kristina, and her TWO breasts, will be recovering at Swedish (main hosptial corner of Broadway and Madison) for the next few days and is currently in Room 812 SW. Thank you all for your thoughts and prayers and well wishes. Thank you Grammy and Grampa for taking Tessa and Shep on a jaunt in the Motor coach and thank you Marisa for coming to hang out at the hosptial with the spouse for a few hours while he awaited the results. The next post will probably come from Kristina in the next few days
This is a short note from Ryan (aka the hubby) that Kristina's reconstruction surgery went very well today. Both Dr Miles and Kristina are very happy with the result. Kristina, and her TWO breasts, will be recovering at Swedish (main hosptial corner of Broadway and Madison) for the next few days and is currently in Room 812 SW. Thank you all for your thoughts and prayers and well wishes. Thank you Grammy and Grampa for taking Tessa and Shep on a jaunt in the Motor coach and thank you Marisa for coming to hang out at the hosptial with the spouse for a few hours while he awaited the results. The next post will probably come from Kristina in the next few days
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