I keep meaning to update here daily...and life gets in the way. This is usually a good thing: I'm doing "normal" things like cleaning the house, taking Tessa to playdates, going running, etc. It's about time. ;-)
I thought, though, that I'd include a body update. Some is good, some is less than perfect, but as long as I'm NED I can accept what I'm given.
Here goes:
Breast cancer: I remain No Evidence of Disease (NED). I get blood work every 3 weeks, and every time it's coming back "perfect." My doctor does not do routine scans (this is a debate in the oncology world, but after reading the studies I agree with her conclusions) but there are no signs or symptoms of breast cancer. Excellent!
Bones: As I mentioned previously, I lost 11% of the bone density in my spine last year. This is not entirely unexpected due to the sudden onset of menopause and the addition of Femara (aromatase inhibitor - removes estrogen from the body) but it's frightening because the numbers are so high. I am trying to counter these effects with diet, exercise, and supplements. I'm running regularly, eating leafy greens and drinking lattes for the milk, and taking 1500mg of calcium + D every day.
Joint pain. This is another cause of concern for me. My first 5 months or so of Femara had no noticable effects, but for the past couple of months I feel like an old, old, old woman. When I've been still for a while (sitting down for dinner, kneeling on the floor to play with Tessa, or, worst of all, waking up in the morning after a night's sleep) my bones HURT. It takes my breath away it's so painful, and I find myself hobbling and gasping because of it. The good news is that this only lasts a short time, and I can "walk it off" but it's a really, truly unpleasant side effect. I refuse to consider going off Femara because it's supposed to be so good for me, but I'm counting down the four years and three months left until I'm done with it.
Lymphedema: My left arm/hand have problems with swelling. My rehab doctor gave me a real lecture last time I saw him, reminding me that people get REAL problems (like staph infections and death) from lymphedema, and I need to take better care of it. That's why you'll see me wearing the ugly sleeve and glove more often these days. It's a lifelong condition, too, which is rather unfortunate. It doesn't hurt all the time but sometimes I feel my arm just throbbing, and when I'm getting a flare-up it aches.
Hot Flashes: Menopause is not particularly fun. I ocassionally have monumental hot flashes that cover my entire body with sweat and make it hard for me to concentrate on anything but how horribly, uncomfortably hot I have become...although fortunately, these hot flashes have lessened and mostly been replaced with more irritating but not overwhelming hot flashes (still hot and uncomfortable, but not so sweaty). Every night I still get them, too, sometimes with night sweats, and this is not great because it disrupts my sleep. There isn't much to do about them: I can't take any form of estrogen/hormone replacement, so I truckon on, hoping that one day they go away.
GI Tract: I'll spare you the gross details, but I'm not healed from chemo, and I have some ugly side effects that are probably just residual from chemo, but I have to have a colonoscopy to check it out. I also have to take Metamucil (sp?) and some prescriptions to see if we can correct the problems, despite my high fiber diet with lots of water, fruits, and veggies.
Mobility: My lat flap (untreated) side looks good, and I can move my arm as much as I desire. My treated side is still tight, however, and I continue to do physical therapy with it to regain full range of motion.
Skin: My skin is still not completely healed from radiation. I will find out on the 26th whether it's ready to go for the next surgery; I'm optimistic about this but there is a chance that it's still too soon.
Reconstruction: The tissue expander on the prophylactic side looks like it's the full size to me, and it looks okay, though it's rotated due to my high levels of activity (which gives it a strange lopsided look). Nov. 7 I'll do the same procedure on my treated side, and I'm looking forward to having two breasts, but dreading the surgery because it was so, so hard (painful) last time. The tissue expander makes my breast ROCK hard - like having a turtle on my chest - but when I get the expanders exchanged for implants (most likely silicone) they should return to a more normal feeling. That's good, because when I hug people I feel like I'm damaging them and me...and I hate that when I snuggle Tessa "it" gets in the way.
Portacath: I have started my second year of Herceptin treatment, and I will keep my portacath for as long as possible to get through that year. The portacath is "loose" and sticks out of my skin (in part due to the reconstruction, in part due to my weight loss), but it's still worthwhile because my veins have a tendancy to close up when a needle walks in the room. I have to remember this when Tessa accidentally bumps it and it makes me yelp in pain...it is worth it, it is worth it!
Hair: While it's not the haircut I desire, I'm pleased that nobody would look at me and think "cancer patient."
Running: A week ago, I ran my first 10k. It took me an hour (9:44 min/mile) which is no land-speed record, but I'm still proud of myself for doing it and not collapsing at the end. I'm scheduled to run/walk a 1/2 marathon at the end of this week, too. Hurrah!
Weight: I no longer count points for WW, but I am still adhering to the WW philosophies as a "lifetime member." My weight fluctuates up and down a couple of pounds, as is normal, and I use the scale as a guide to remind me when it's time to ease back a little. I'm not afraid of a pound or two, but it's important to me that the pounds don't start adding back up, so I'm diligent about staying on top of even a pound or two gain, so that I never have to fight a "big" weight loss battle again. I love my new physique: it's not perfect by any means, but I'm proud of the changes I've made, and the impact they should have on my health.
That's all for now - I'm off to pick up Tessa from Jenny's. Hopefully this post will answer some of the questions I've been getting about how I am: I'm doing very well, despite the unfortunate reminders that cancer treatment has left me with. There are days that I feel like a very old woman...but I can live with that as long as I get to live.
Kristina
PS Okay, one other update: yesteray I got the stomach flu, and today I've been having back spasms. YUCK!
Monday, October 16, 2006
Thursday, October 05, 2006
Make a promise!
Will you make your promise to get annual mammograms? I just made my promise, and my little click donated $1 to breast cancer research (The Komen Foundation). The first 50,000 promises each generate a $1 donation from Siemens.
http://www.changethestatistic.com/framework.asp
http://www.changethestatistic.com/framework.asp
To the stranger at the cancer resource center today
Dear lady,
I saw you perusing the bookshelves in the breast cancer section; you picked up titles, sighed, put them back. You wore your bald head like a warrior, clearly visible despite the baseball cap covering the top. You looked up at me, giving me space to find my own reading material, and when our eyes met, I saw a lot of pain. You said, "Surely there is something here to help me through a bad day!" and I took a chance, and decided that *I* was the answer, not the books.
"Look in my eyes, " I said, "and you will see yourself in a year. Look at me! Look at my hair - sensible mom hair that I enjoy complaining about - and know that this time next year, you, too will have hair. Look in my eyes: do you see the life there? Do you see how I'm running all over the place, busy with the everyday, despite the fact that I'm here? Do you see my new, strong body? This week, this body took me running 4 times already, and this weekend it will carry me through my first 10k in years. Look in my eyes! You will be like this next year. You will get your life back. You will become busy with the mundane of life, as well as the joys of life. You will still come back to this building, you will still be a woman with a history of breast cancer, but it will not take over your every minute. Look at me, and see yourself. You can do this!"
Last year, I was the bald lady, living from one treatment to the next, and so, so, so scared. This year, I am so much stronger, healthier, and more optimistic. I have bad days, but they are only days...and the rest of the time I spend doing all the things that I wish to do in my life (plus a million chores and errands). My hair has returned; my energy has returned; even my breasts are returning (one surgery at a time!).
You looked at me and cried, gasping "Thank you" and I hugged you - a total stranger - and hoped that some of my strength could pass to you. I hope I didn't cross too many boundaries, but I wanted so much to give you hope, and to let you feel the strength that is mine that will soon be yours again.
Sweet lady, whoever you are, you are in my thoughts and prayers today. I hope that I see you next year, waiting for your annual appointment, a twinkle in your eye and impatience in your feet to get going, to leave the doctor, to go about the business of truly living, and not just of staying alive.
There is a long way between the pain of diagnosis and the heat of treatment to where I am now. There IS another side, and I hope to see you come join me on it soon. Hang in there, sister. You can do this!
Love,
Kristina (the stranger in the breast cancer section of the cancer resource center today)
I saw you perusing the bookshelves in the breast cancer section; you picked up titles, sighed, put them back. You wore your bald head like a warrior, clearly visible despite the baseball cap covering the top. You looked up at me, giving me space to find my own reading material, and when our eyes met, I saw a lot of pain. You said, "Surely there is something here to help me through a bad day!" and I took a chance, and decided that *I* was the answer, not the books.
"Look in my eyes, " I said, "and you will see yourself in a year. Look at me! Look at my hair - sensible mom hair that I enjoy complaining about - and know that this time next year, you, too will have hair. Look in my eyes: do you see the life there? Do you see how I'm running all over the place, busy with the everyday, despite the fact that I'm here? Do you see my new, strong body? This week, this body took me running 4 times already, and this weekend it will carry me through my first 10k in years. Look in my eyes! You will be like this next year. You will get your life back. You will become busy with the mundane of life, as well as the joys of life. You will still come back to this building, you will still be a woman with a history of breast cancer, but it will not take over your every minute. Look at me, and see yourself. You can do this!"
Last year, I was the bald lady, living from one treatment to the next, and so, so, so scared. This year, I am so much stronger, healthier, and more optimistic. I have bad days, but they are only days...and the rest of the time I spend doing all the things that I wish to do in my life (plus a million chores and errands). My hair has returned; my energy has returned; even my breasts are returning (one surgery at a time!).
You looked at me and cried, gasping "Thank you" and I hugged you - a total stranger - and hoped that some of my strength could pass to you. I hope I didn't cross too many boundaries, but I wanted so much to give you hope, and to let you feel the strength that is mine that will soon be yours again.
Sweet lady, whoever you are, you are in my thoughts and prayers today. I hope that I see you next year, waiting for your annual appointment, a twinkle in your eye and impatience in your feet to get going, to leave the doctor, to go about the business of truly living, and not just of staying alive.
There is a long way between the pain of diagnosis and the heat of treatment to where I am now. There IS another side, and I hope to see you come join me on it soon. Hang in there, sister. You can do this!
Love,
Kristina (the stranger in the breast cancer section of the cancer resource center today)
Monday, October 02, 2006
A long, long overdue thank you
I sent this email to my sponsors today, but I do not have email addresses for everyone, as some visitors to my blog sponsored me and the 3-Day does not share out those addresses. Please accept my humble thanks.
---------------
I have been intending to sit down and write each of you a heartfelt letter of thanks for your donations to the Breast Cancer 3-Day, and for your support of me. I still intend to do just that, but since life has been getting in the way of my doing so, I'm at least starting with an email to you as a means of saying THANK YOU.
The Breast Cancer 3-Day was an amazing experience for me. The weather was perfect, my walking companions were amazing, and my body was cooperative in finishing every step of the sixy miles....but it is you, my sponsors, who really had the greater accomplishment. I raised a total of $6,165.00, and my team raised a total of $30,907.25. I am absolutely in awe that a team of amateur fundraisers could come up with over thirty thousand dollars...and it is all because of you. The Seattle Breast Cancer 3-Day raised a total of (are you ready for this?) $6.8 MILLION DOLLARS! That is a lot of mammograms, a lot of shower cards, and (best of all) a LOT of research. Your money really makes a difference. It makes a difference to me, personally, that you are willing to fight against the disease that threatens my life; it makes a difference because your dollars are going to be part of ending breast cancer forever.
The walk itself was nothing short of incredible. I wrote about it on my blog at http://rykri.blogspot.com/2006/08/breast-cancer-3-day-first-installment.html if you would like to look. I met survivors, co-survivors, and people who simply cared enough to walk. (One of these was a man who walked the entire 60 miles in knee-high Doc Marten boots and a utilikilt. I asked him what brought him to the event, and he said, "It's time to cure breast cancer." I asked him how he had been affected by the disease, and he said, "I'm lucky, I don't know anyone with breast cancer." WOW - I consider him a real hero!) My team made me laugh, and made me cry, but every minute was filled with pure joy.
On the walk, I often saw signs saying "Every step counts" and "Every step leads us closer to a cure," but I know that isn't true at all. Every step made me feel good, and healthy, but it is every dollar raised that leads us closer to a cure. Your sponsorship enabled me to do the walk, and your sponsorship is part of finding the cure. I daydream sometimes about how that money raised is being used; I think that maybe the $30,907.25 that my team raised is paying one researcher's salary (they're notoriously underpaid!) and that maybe it's THE researcher, the one that will have a breakthrough that will bring us to a cure.
I am grateful, from the bottom of my heart, for your sponsorship. Thank you so much for choosing to support a cause that is so near and dear to my heart. I believe that we will find a cure, or at least a less heinous treatment plan, by the time my daughter Tessa is a woman old enough to be worried about getting breast cancer. I pray that we will have more breakthroughs before I receive yet another phone call from yet another person with tears in their voice, shaking with emotion, saying,"I have it too." It gives me great comfort to know that the work I am doing, that YOU are doing, is making a difference, and that every day we are one day closer to having answers.
I am not done, though the 3-Day 2006 is over. I hope that you will consider sponsoring me next year when I do the event again - yes, again! - as I continue to fight this disease on both a personal and a public level. Next year I hope that you will sponsor me again, and that you will feel some of the "high" that I feel in knowing that you are a part of the cure. We are not sitting on the sidelines crying: we are fighting to the finish!
Thank you for being at my side, and for carrying me in your thoughts, as I walked. Bless you!
---------------
I have been intending to sit down and write each of you a heartfelt letter of thanks for your donations to the Breast Cancer 3-Day, and for your support of me. I still intend to do just that, but since life has been getting in the way of my doing so, I'm at least starting with an email to you as a means of saying THANK YOU.
The Breast Cancer 3-Day was an amazing experience for me. The weather was perfect, my walking companions were amazing, and my body was cooperative in finishing every step of the sixy miles....but it is you, my sponsors, who really had the greater accomplishment. I raised a total of $6,165.00, and my team raised a total of $30,907.25. I am absolutely in awe that a team of amateur fundraisers could come up with over thirty thousand dollars...and it is all because of you. The Seattle Breast Cancer 3-Day raised a total of (are you ready for this?) $6.8 MILLION DOLLARS! That is a lot of mammograms, a lot of shower cards, and (best of all) a LOT of research. Your money really makes a difference. It makes a difference to me, personally, that you are willing to fight against the disease that threatens my life; it makes a difference because your dollars are going to be part of ending breast cancer forever.
The walk itself was nothing short of incredible. I wrote about it on my blog at http://rykri.blogspot.com/2006/08/breast-cancer-3-day-first-installment.html if you would like to look. I met survivors, co-survivors, and people who simply cared enough to walk. (One of these was a man who walked the entire 60 miles in knee-high Doc Marten boots and a utilikilt. I asked him what brought him to the event, and he said, "It's time to cure breast cancer." I asked him how he had been affected by the disease, and he said, "I'm lucky, I don't know anyone with breast cancer." WOW - I consider him a real hero!) My team made me laugh, and made me cry, but every minute was filled with pure joy.
On the walk, I often saw signs saying "Every step counts" and "Every step leads us closer to a cure," but I know that isn't true at all. Every step made me feel good, and healthy, but it is every dollar raised that leads us closer to a cure. Your sponsorship enabled me to do the walk, and your sponsorship is part of finding the cure. I daydream sometimes about how that money raised is being used; I think that maybe the $30,907.25 that my team raised is paying one researcher's salary (they're notoriously underpaid!) and that maybe it's THE researcher, the one that will have a breakthrough that will bring us to a cure.
I am grateful, from the bottom of my heart, for your sponsorship. Thank you so much for choosing to support a cause that is so near and dear to my heart. I believe that we will find a cure, or at least a less heinous treatment plan, by the time my daughter Tessa is a woman old enough to be worried about getting breast cancer. I pray that we will have more breakthroughs before I receive yet another phone call from yet another person with tears in their voice, shaking with emotion, saying,"I have it too." It gives me great comfort to know that the work I am doing, that YOU are doing, is making a difference, and that every day we are one day closer to having answers.
I am not done, though the 3-Day 2006 is over. I hope that you will consider sponsoring me next year when I do the event again - yes, again! - as I continue to fight this disease on both a personal and a public level. Next year I hope that you will sponsor me again, and that you will feel some of the "high" that I feel in knowing that you are a part of the cure. We are not sitting on the sidelines crying: we are fighting to the finish!
Thank you for being at my side, and for carrying me in your thoughts, as I walked. Bless you!
Hope
Article about BC Survivor
This link was posted on the YSC site that I visit, and I found it so inspiring that I wanted to post it here.
This link was posted on the YSC site that I visit, and I found it so inspiring that I wanted to post it here.
Sunday, October 01, 2006
Thursday, September 28, 2006
Test results
Today I had two of my tests: the MUGA (for heart issues related to Herceptin) and the DEXA (for bone density) tests. I have not yet had further genetic testing because we're waiting to see if insurance will cover it.
The MUGA went well. There were no significant changes from previously, and I believe that this means that I will qualify for a second year of Herceptin, perhaps improving my odds even more. The study data on extended (more than one year) use of Herceptin isn't in yet, but I'm hoping that more is better. I'm very happy about this.
The results of the DEXA were not so good. I have lost 11% of the bone density in my spine since last year. This is way, way, way more than I expected, and I'm really upset by it. I'm borderline for osteopenia (the precurser of osteoporosis), still in the okay zone, but I am expected to lose some bone density annually from here on out (menopausal, no estrogen due to the lack of ovaries, and taking drugs - Femara - that promote bone loss) and this rate is truly terrifying. A lifetime of bone fractures is scary. 20% of women with hip fractures from osteoporosis die of complications.
CRAP.
Part of what is making me so sad is that I'm trying so, so, so hard to be healthy and strong and to take positive control of my health, and I'm eating healthy food and exercising and taking calcium and vitamin D and all the rest....so it feels so grossly unfair.
Today I was listening to a Sheryl Crow song, "No one ever said it would be easy; but no one ever said it would be this hard." That about sums it up right now.
Don't get me wrong. Life is busy in mostly wonderful ways. I feel healthy and strong. Mostly, I feel optimistic. But today, I'm saddened by the news that my body has yet another challenge to deal with, and I feel overwhelmed by it. Tomorrow, my PollyAnna attitude can return...but today I'm tired.
Kristina
The MUGA went well. There were no significant changes from previously, and I believe that this means that I will qualify for a second year of Herceptin, perhaps improving my odds even more. The study data on extended (more than one year) use of Herceptin isn't in yet, but I'm hoping that more is better. I'm very happy about this.
The results of the DEXA were not so good. I have lost 11% of the bone density in my spine since last year. This is way, way, way more than I expected, and I'm really upset by it. I'm borderline for osteopenia (the precurser of osteoporosis), still in the okay zone, but I am expected to lose some bone density annually from here on out (menopausal, no estrogen due to the lack of ovaries, and taking drugs - Femara - that promote bone loss) and this rate is truly terrifying. A lifetime of bone fractures is scary. 20% of women with hip fractures from osteoporosis die of complications.
CRAP.
Part of what is making me so sad is that I'm trying so, so, so hard to be healthy and strong and to take positive control of my health, and I'm eating healthy food and exercising and taking calcium and vitamin D and all the rest....so it feels so grossly unfair.
Today I was listening to a Sheryl Crow song, "No one ever said it would be easy; but no one ever said it would be this hard." That about sums it up right now.
Don't get me wrong. Life is busy in mostly wonderful ways. I feel healthy and strong. Mostly, I feel optimistic. But today, I'm saddened by the news that my body has yet another challenge to deal with, and I feel overwhelmed by it. Tomorrow, my PollyAnna attitude can return...but today I'm tired.
Kristina
Test results
Today I had two of my tests: the MUGA (for heart issues related to Herceptin) and the DEXA (for bone density) tests.
The MUGA went well. There were no significant changes from previously, and I believe that this means that I will qualify for a second year of Herceptin, perhaps improving my odds even more. The study data on extended (more than one year) use of Herceptin isn't in yet, but I'm hoping that more is better.
The results of the DEXA were not so good. I have lost 11% of the bone density in my spine since last year. This is way, way, way more than I expected, and I'm really upset by it. I'm borderline for osteopenia (the precurser of osteoporosis), still in the okay zone, but I am expected to lose some bone density annually from here on out (menopausal, no estrogen due to the lack of ovaries, and taking drugs - Femara - that promote bone loss) and this rate is truly terrifying. A lifetime of bone fractures is scary. 20% of women with hip fractures from osteoporosis die of complications.
CRAP.
Part of what is making me so sad is that I'm trying so, so, so hard to be healthy and strong and to take positive control of my health, and I'm eating healthy food and exercising and taking calcium and vitamin D and all the rest....so it feels so grossly unfair.
Today I was listening to a Sheryl Crow song, "No one said it would be easy; but no one said it would be this hard." That about sums it up right now.
Don't get me wrong. Life is busy in mostly wonderful ways. I feel healthy and strong. Mostly, I feel optimistic. But today, I'm saddened by the news that my body has yet another challenge to deal with, and I feel overwhelmed by it. Tomorrow, my PollyAnna attitude can return...but today I'm tired.
Kristina
The MUGA went well. There were no significant changes from previously, and I believe that this means that I will qualify for a second year of Herceptin, perhaps improving my odds even more. The study data on extended (more than one year) use of Herceptin isn't in yet, but I'm hoping that more is better.
The results of the DEXA were not so good. I have lost 11% of the bone density in my spine since last year. This is way, way, way more than I expected, and I'm really upset by it. I'm borderline for osteopenia (the precurser of osteoporosis), still in the okay zone, but I am expected to lose some bone density annually from here on out (menopausal, no estrogen due to the lack of ovaries, and taking drugs - Femara - that promote bone loss) and this rate is truly terrifying. A lifetime of bone fractures is scary. 20% of women with hip fractures from osteoporosis die of complications.
CRAP.
Part of what is making me so sad is that I'm trying so, so, so hard to be healthy and strong and to take positive control of my health, and I'm eating healthy food and exercising and taking calcium and vitamin D and all the rest....so it feels so grossly unfair.
Today I was listening to a Sheryl Crow song, "No one said it would be easy; but no one said it would be this hard." That about sums it up right now.
Don't get me wrong. Life is busy in mostly wonderful ways. I feel healthy and strong. Mostly, I feel optimistic. But today, I'm saddened by the news that my body has yet another challenge to deal with, and I feel overwhelmed by it. Tomorrow, my PollyAnna attitude can return...but today I'm tired.
Kristina
Sunday, September 17, 2006
Tuesday, September 05, 2006
Testing, testing, 1-2-3
The testing never stops. I need to go in for my regular MUGA (heart function), DEXA (bone density), bloodwork (CA 27.29, CA 125, TSH, etc.)...and now I will get the new BRCA (genetic) test that has just come out. Since male factor breast cancer is so rare, and tends to be BRCA2 related, and since breast cancer in a woman so young is so rare, it is highly suspected that I have a genetic mutation. Perhaps this test will find it.
I hope that I do NOT have such a mutation, of course....it's too late for me but I'd like to believe that my aunts and cousins are not at a higher risk.
Stay tuned!
----------
Myriad Introduces Enhanced BRACAnalysis® Test for Exceptionally High-Risk Breast Cancer Patients
New BART™ Technology Detects Rare DNA Rearrangements in BRCA1 and BRCA2 Genes
Salt Lake City, August 1, 2006—Myriad Genetics, Inc. (Nasdaq: MYGN) (www.myriad.com) announced today the introduction of the BRACAnalysis® Rearrangement Test, a new molecular diagnostic test in the BRACAnalysis family of products. The added test detects rare, large rearrangements of the DNA in the BRCA1 and BRCA2 genes and will be performed for women with exceptionally high risk who have tested negative for sequence mutations and the common large rearrangements already included in Myriad's test.
BRACAnalysis, Myriad's test for hereditary breast and ovarian cancer incorporates the most thorough full-sequence analysis for gene mutation detection ever employed on a broad commercial scale. More recently, Myriad and others have discovered and published information on an additional type of mutation, known as a large rearrangement, that has not been detectable by commercial DNA sequencing technologies, but only by laborious, manual research-based methods. Such rearrangements are responsible for a small percentage of changes in the two breast cancer genes. In 2002, Myriad added a panel of five common rearrangements to its BRACAnalysis test, accounting for nearly half of the total occurrence of large rearrangements in the two genes. Because large rearrangements are quite rare, a woman meeting the commonly employed selection criteria for BRACAnalysis has less than one half of one percent (0.5%) risk of carrying one of the large rearrangement mutations.
Now, with its new BART technology for large rearrangement detection, Myriad offers an automated, robust test designed to detect all large rearrangement mutations in the BRCA1 and BRCA2 genes, even if they have not been seen previously. As of August 1, 2006, Myriad will conduct the BRACAnalysis Rearrangement Test on patient samples where the individual's personal and family history is indicative of an exceptionally high level of risk, but the sample tests negative for BRACAnalysis. The Rearrangement test will be performed, when indicated, at no additional charge, and is also available for order independently for a fee of $650.
"We are very pleased to introduce an exciting and robust technology to detect these rare rearrangement mutations," said Gregory Critchfield, MD, President of Myriad Genetic Laboratories, Inc. "This work continues Myriad's leadership in providing the best testing possible for individuals at risk for hereditary breast and ovarian cancer through our gold-standard BRACAnalysis product."
I hope that I do NOT have such a mutation, of course....it's too late for me but I'd like to believe that my aunts and cousins are not at a higher risk.
Stay tuned!
----------
Myriad Introduces Enhanced BRACAnalysis® Test for Exceptionally High-Risk Breast Cancer Patients
New BART™ Technology Detects Rare DNA Rearrangements in BRCA1 and BRCA2 Genes
Salt Lake City, August 1, 2006—Myriad Genetics, Inc. (Nasdaq: MYGN) (www.myriad.com) announced today the introduction of the BRACAnalysis® Rearrangement Test, a new molecular diagnostic test in the BRACAnalysis family of products. The added test detects rare, large rearrangements of the DNA in the BRCA1 and BRCA2 genes and will be performed for women with exceptionally high risk who have tested negative for sequence mutations and the common large rearrangements already included in Myriad's test.
BRACAnalysis, Myriad's test for hereditary breast and ovarian cancer incorporates the most thorough full-sequence analysis for gene mutation detection ever employed on a broad commercial scale. More recently, Myriad and others have discovered and published information on an additional type of mutation, known as a large rearrangement, that has not been detectable by commercial DNA sequencing technologies, but only by laborious, manual research-based methods. Such rearrangements are responsible for a small percentage of changes in the two breast cancer genes. In 2002, Myriad added a panel of five common rearrangements to its BRACAnalysis test, accounting for nearly half of the total occurrence of large rearrangements in the two genes. Because large rearrangements are quite rare, a woman meeting the commonly employed selection criteria for BRACAnalysis has less than one half of one percent (0.5%) risk of carrying one of the large rearrangement mutations.
Now, with its new BART technology for large rearrangement detection, Myriad offers an automated, robust test designed to detect all large rearrangement mutations in the BRCA1 and BRCA2 genes, even if they have not been seen previously. As of August 1, 2006, Myriad will conduct the BRACAnalysis Rearrangement Test on patient samples where the individual's personal and family history is indicative of an exceptionally high level of risk, but the sample tests negative for BRACAnalysis. The Rearrangement test will be performed, when indicated, at no additional charge, and is also available for order independently for a fee of $650.
"We are very pleased to introduce an exciting and robust technology to detect these rare rearrangement mutations," said Gregory Critchfield, MD, President of Myriad Genetic Laboratories, Inc. "This work continues Myriad's leadership in providing the best testing possible for individuals at risk for hereditary breast and ovarian cancer through our gold-standard BRACAnalysis product."
Saturday, September 02, 2006
A good reminder
http://www.breastcancer.org/research_diet_082806.html
This study should remind me to keep my weight low.... I'm glad I gave away all of my "big" clothes because it's important to me as a breast cancer survivor to keep that weight off. The statistics are particularly powerful if you consider that chemo only improved my chances by, perhaps, 7-10%...so the improvement brought about by a healthy weight loss is particularly important and substantial.
I know it's only been a few months since I started maintaining my new, healthy weight, but I am DETERMINED to keep it off forever. You may quote me on that, and gently remind me that I am perfectly capable of doing so, should I ever start to slip. :-)
This study should remind me to keep my weight low.... I'm glad I gave away all of my "big" clothes because it's important to me as a breast cancer survivor to keep that weight off. The statistics are particularly powerful if you consider that chemo only improved my chances by, perhaps, 7-10%...so the improvement brought about by a healthy weight loss is particularly important and substantial.
I know it's only been a few months since I started maintaining my new, healthy weight, but I am DETERMINED to keep it off forever. You may quote me on that, and gently remind me that I am perfectly capable of doing so, should I ever start to slip. :-)
Tuesday, August 29, 2006
A survivor story from the 3-Day - 27 years!
At the end of the 3-Day, the survivors line up in pairs and march into the arena together after all the other walkers are already in for the closing ceremony. While we were watching the long stream of walkers go by us - 2300 people - the 400 survivors stood and talked about who they were, and how far out they were.
The woman behind me in the line was 27 years out; she's 69, and she was 32 when she was diagnosed. She didn't remember her staging, but she had a Halsted radical mastectomy and chemotherapy, so that tells us something. She had three small children at the time, and she told me that, like many of us, she just prayed that she would see them grow old.
When she was diagnosed she made herself a tape that she played for herself every night, in which she told herself the story of her future life, saying things like, "I will see my son graduate from high school. I will attend my daughter's wedding. I will rock my grandchildren to sleep." I don't know if this helped or not....but it made me think I might do the same thing (on CD!). I know that a positive attitude will not cure cancer (if it did I wouldn't have gotten it in the first place!) but it sounds very affirming and life-embracing to me.
She's a grandma now to SIX grandchildren; she has rocked them all to sleep. She didn't miss any graduations, nor weddings. She's still NED, and at 69 she was spry enough to walk 60 miles and smile at the end, offering encouragement to many of us.
There wasn't a dry eye around.
The woman behind me in the line was 27 years out; she's 69, and she was 32 when she was diagnosed. She didn't remember her staging, but she had a Halsted radical mastectomy and chemotherapy, so that tells us something. She had three small children at the time, and she told me that, like many of us, she just prayed that she would see them grow old.
When she was diagnosed she made herself a tape that she played for herself every night, in which she told herself the story of her future life, saying things like, "I will see my son graduate from high school. I will attend my daughter's wedding. I will rock my grandchildren to sleep." I don't know if this helped or not....but it made me think I might do the same thing (on CD!). I know that a positive attitude will not cure cancer (if it did I wouldn't have gotten it in the first place!) but it sounds very affirming and life-embracing to me.
She's a grandma now to SIX grandchildren; she has rocked them all to sleep. She didn't miss any graduations, nor weddings. She's still NED, and at 69 she was spry enough to walk 60 miles and smile at the end, offering encouragement to many of us.
There wasn't a dry eye around.
A survivor story from the 3-Day - 27 years!
At the end of the 3-Day, the survivors line up in pairs and march into the arena together after all the other walkers are already in for the closing ceremony. While we were watching the long stream of walkers go by us - 2300 people - the 400 survivors stood and talked about who they were, and how far out they were.
The woman behind me in the line was 27 years out; she's 69, and she was 32 when she was diagnosed. She didn't remember her staging, but she had a Halsted radical mastectomy and chemotherapy, so that tells us something. She had three small children at the time, and she told me that, like many of us, she just prayed that she would see them grow old.
When she was diagnosed she made herself a tape that she played for herself every night, in which she told herself the story of her future life, saying things like, "I will see my son graduate from high school. I will attend my daughter's wedding. I will rock my grandchildren to sleep." I don't know if this helped or not....but it made me think I might do the same thing (on CD!). I know that a positive attitude will not cure cancer (if it did I wouldn't have gotten it in the first place!) but it sounds very affirming and life-embracing to me.
She's a grandma now to SIX grandchildren; she has rocked them all to sleep. She didn't miss any graduations, nor weddings. She's still NED, and at 69 she was spry enough to walk 60 miles and smile at the end, offering encouragement to many of us.
There wasn't a dry eye around.
The woman behind me in the line was 27 years out; she's 69, and she was 32 when she was diagnosed. She didn't remember her staging, but she had a Halsted radical mastectomy and chemotherapy, so that tells us something. She had three small children at the time, and she told me that, like many of us, she just prayed that she would see them grow old.
When she was diagnosed she made herself a tape that she played for herself every night, in which she told herself the story of her future life, saying things like, "I will see my son graduate from high school. I will attend my daughter's wedding. I will rock my grandchildren to sleep." I don't know if this helped or not....but it made me think I might do the same thing (on CD!). I know that a positive attitude will not cure cancer (if it did I wouldn't have gotten it in the first place!) but it sounds very affirming and life-embracing to me.
She's a grandma now to SIX grandchildren; she has rocked them all to sleep. She didn't miss any graduations, nor weddings. She's still NED, and at 69 she was spry enough to walk 60 miles and smile at the end, offering encouragement to many of us.
There wasn't a dry eye around.
Monday, August 28, 2006
The Breast Cancer 3-Day: The first installment
Here is what I have started writing about the 3-Day. I missed so much information about the event in this telling, and there are funny stories to tell, and touching ones, and I need to add them....but here is a taste of my experiences at the 3-Day. More to follow!
----------------------------
I got home from the Seattle Breast Cancer 3-Day yesterday, and I am still on a high. Here are a few notes that I just can't resist sharing...
This event was INCREDIBLE for me. First of all, I had been using the 3-Day as a fantasy to get me through the most heinous parts of treatment for over a year. Sitting in chemo, burning from rads, and recovering from surgeries, I would close my eyes and envision crossing the finish line....strong and healthy enough to have walked 60 miles, with my hair ruffling in the breeze, surrounded by friends, proving that the cancer was BEHIND me. The event became the symbol of good health for me, and I sometimes wondered if I'd ever get there, if I'd ever actually be well enough to partake in it.
I was honored to walk with nine friends for the entire event: Michele, Lori, Susan, Carolyn, Molly, Darcy, Bryona, Katie, and Sara. Joining us on the last day as an honorary team member was my oncologist, Kristine (now officially one of the girls, not just my oncologist). Being surrounded by these friends, and spending three full days, including two nights of sleeping in tents just feet apart from one another, was the most incredible girl-bonding experience ever. Suddenly, we were all twelve years old, pulling practical jokes, laughing, singing, resting, eating, and talking talking talking talking. Our husbands and children were at home; there were no chores; no jobs; no email; no phones (except when we chose to call home on our cellphones to check in....and then we'd turn the phones off!). We were there to take care of ourselves, and of each other, and it was incredible.
The first day, after opening ceremonies, as all 2700 walkers were released, it was like one giant walker traffic jam, and things were slloooooowwwwwww... too slow for me. I found myself having something to prove, and I would have run if they'd let me (actually, during a 3-Day, you can get disqualified for running...."it's a walk, not a race!"). I had all kinds of energy, and I felt the full health of my fantasies, and I was practically giddy about it - I felt like I could FLY. When the crowds loosened up after the first pit stop, I started walking faster, and faster, until I was doing a walk just short of running. Every time I called out "On your left!" and passed someone, I felt a little surge of adreneline, and a happiness that seemed to fill my entire self. THIS was health. This was the fantasy come true.
I walked like a fool, but took my time at pit stops to visit with my friends (some walked with me, some came a bit slower), snacking on the billions of calories worth of food provided (string cheese, bagels with cream cheese, peanuts, bananas, oranges, pretzels, potato chips, granola bars and more) and refilling my water bottle (sports drinks were provided but I find them heinous and unnecessary). I arrived at camp with a smile a mile wide, and had plenty of time to shower (they have mobile showers), set up my tent, check out the camp, and hang out before dinner at 5pm.
The walk itself was just so FUN. People lined the streets to cheer, which shouldn't matter (it's about personal health and fundraising, which I had already accomplished) but the kindness of these strangers was INCREDIBLE. In addition to the pit stops every 3 miles, people stood at the sidelines handing out candy, or popsicles, or watermelon (my personal favorite!), or misting the walkers with spray bottles. People held signs saying, "Thank you" and "This survivor thanks you" and cheering for strangers and friends alike. Some people got REALLY into cheering, and dressed in silly costumes (mostly pink!), or set up stereos pumping out music, or they passed out little trinkets for the walkers to pin to their shirts or hats. Some of these self-appointed cheerers actually stationed themselves at multiple stations throughout the day, so that we would see them time and time again. (My favorites were Dan, Moose, and Bob: a father, grown son, and best friend, who clapped their hearts out for us, wore pink pompoms on their shoes, and treated every walker they saw like an angel. WOW.) I was also honored to be visited by Ryan, Tessa, Shep, and my mom and dad, which was wonderful: I was so glad to share some of this with them. Ryan held a sign "Go Team Kristina" up for us, and it felt good to hug each member of my family, and to feel their incredible support.
On the first day, I was just filled with so much energy that I practically (but not quite) ran the event, and it all passed in a blur. On the second day, I walked more with my team, or large parts of my team....and we found ourselves singing to pass the time. Yes, singing. It was crazy! I can't carry a tune but we found ourselves belting out songs from Grease and The Sound of Music and all kinds of other incredibly cheesy stuff. I think that we sounded particularly good on "My Girl" and "Lean on Me," but by then my standards were not particularly high....I was just so filled with love for my friends, and for the moment, that the craziness of it all filled me with happiness.
The first night, the entertainment was karaoke, which I wasn't into...but the second night, the entertainment was a local band called the Aphrodisiacs who play 70s cover tunes like "Celebration" and Earth, Wind and Fire tunes. I could not believe it, but after walking 40 miles over two days, and after hearing stories from one survivor and one co-survivor that had me shaking with emotional tears (God I hate this disease!!!)...I found myself dancing and singing along (this time, thankfully for everyone around me, I was drowned out by the music playing!).
The final day, with Kristine joining us, was tons of talking, and the team stayed all together. We were all happy to be getting done with the walk...but we were all a bit sad that it was ending, too. A girl-fest like this one doesn't happen often, and I could not believe how much fun each of us seemed to be having, despite blisters and various small ailments. I got to know Kristine as a friend, and we talked about everything under the sun, and she shared stories happy and sad about her experiences as a oncologist who works exclusively with breast cancer patients.
As we walked in to the end, we (all 11 of us, with other walkers sometimes joining in) sang "You've Got a Friend." I cried as I listened to my friends singing, and as I heard the words "You just call out my name, and you know whereever I am, I'll come running..." and thought about how they'd run to my side. I thought about telling Carolyn, who lives two states away from me, that I had cancer, and how she showed up at my door two days before my mastectomy. I thought about all of them, walking with me....wow.
As we got into camp, I started to think that I didn't want to leave my team during closing ceremonies....they had been so instrumental in my experience that I didn't want to separate from them. Michele, upon hearing this, put her arm around me, and said, "You know that we are at your side on this journey, and throughout all of this. But you also know that there are some things that you have had to do all by yourself, that we can not help you with, and that you have been strong enough to do them. Now you will do this, and you will know that we are still at your back, even when we're not by your side." I wept....and agreed with her. It's a perfect metaphor.
While we were in the holding area, waiting to be called into the arena, Michele (who always knows the right thing to say!) asked me what the high point of the previous year had been. I flashed back through the entire year, the highs and lows, and it seemed like an hour before I could answer. My voice shaking, I knew I was telling the truth when I said, "Right now. Here, together. I made it!"
My friends entered the arena before me, in the long parade of walkers, and I huddled under a shady tent with the other survivors. The survivors, all in matching pink t-shirts for this final part, started talking together....my partner was a five year survivor, I'm a one year survivor. As I mentioned in my other post, the woman behind me was a 27 year survivor, and we all cheered and hugged her. She asked me about my treatment, and she looked me in the eye and said, "You are going to make it. You will rock your grandbabies to sleep." I sobbed again, and held her tight in my arms for a moment. Funny, I never learned her name, but I will never forget that moment.
And then we marched into ceremonies. I wish I could tell you about them, but I don't remember most of them, because I was so lost in the emotion of it all, and in the realization that the event was over. I do know that I cried.
There are many other stories I could tell, and some of them are silly/stupid/goofy, and others are touching, but I will leave it here for now, as it's 11:06am and I must go to bed.
If you made it reading this far, thank you.
Tuesday, August 22, 2006
The face of breast cancer
A member of the YSC has been putting together this poster, and I'm on it (second row, third from left). It's still being constructed (more faces are being added, they're working on the verbage) but even incomplete I think it's very, very powerful.
http://www.susantallman.com/bcposter.htm
http://www.susantallman.com/bcposter.htm
Monday, August 21, 2006
Closing Ceremonies at the 3-Day
I know that this will be a major milestone for me, and I already know that I am going to cry for most of the closing ceremonies - tears of pride, success, fear, and uncertainty about the future...as well as hope. This year has been an amazing journey, and more than my official one year anniversary, I am using this event as a way of closing the year. I would be deeply touched if any of you chose to attend the closing ceremonies with me.
---------------------
Closing Ceremonies
Sunday, August 27
4:30 pm
University of Washington
Off Montlake Blvd. NE and NE 45th Street
Seattle, WA 98195
View maps: Entrance / Exit
Spectator Note: Friends, family and supporters should arrive to the Closing Ceremonies site at least one hour early to get the best view of the program. To witness the final victory walk of the 3-Day is truly an experience worth the wait. All walkers and crew members will remain in the Participant Holding area where they will receive their victory shirt, cheer on their fellow walkers and crew members, and reflect on their experience before the dramatic silent victory walk into Closing Ceremonies.
Driving Directions
From the north via I-5 southbound:
From I-5 southbound, take the NE 45th Street exit (#169). Turn left onto NE 45th Street. Continue east past the main entrance to the University of Washington at 17th Avenue NE and onto the viaduct. Near the bottom of the viaduct, move into the left lane. Continuing on NE 45th Street, move into the right lane. At the next traffic light (located at the 5-Corners intersection of NE 45th Street, NE 45th Place, and Mary Gates Memorial Drive) turn right onto Mary Gates Memorial Drive. Take the first right onto Clark Road. Proceed west to the NE entrance to the E1 parking lot.
TIP: to avoid traffic congestion use the NE entrance to E1 from Mary Gates Memorial Drive.
From the south via I-5 northbound:
From I-5 nouthbound, take the NE 45th Street exit (#169). Turn right onto NE 45th Street. Continue east past the main entrance to the University of Washington at 17th Avenue NE and onto the viaduct. Near the bottom of the viaduct, move into the left lane. As you continue east on NE 45th Street, move into the right lane. At the next traffic light (located at the 5-Corners intersection of NE 45th Street, NE 45th Place, and Mary Gates Memorial Drive) turn right onto Mary Gates Memorial Drive. Take the first right onto Clark Road. Proceed west to the NE entrance to the E1 parking lot.
From the east via State Route 520:
Coming from the east use State Route 520. Take the Montlake Boulevard exit. Continue north on Montlake Blvd. crossing the drawbridge and then travel past the Bank of America Arena and the Intramural Activities Center. Stay in the right-hand lane and continue north. When the road makes a "Y," bear right staying on Montlake Blvd. Take the next right onto Walla Walla Road. Straight ahead you will see a multi-lane northern entrance to the E1 lot.
TIP: To avoid traffic congestion use either the Walla Walla Rd. entrance to E1 or the entrance accessed from Mary Gates Memorial Drive.
Event Parking
Parking Lot E1 will be available for spectator parking.
Public Transportation
The University of Washington can also be accessed by bus. Visit http://transit.metrokc.gov/ for route and timetable information
---------------------
Closing Ceremonies
Sunday, August 27
4:30 pm
University of Washington
Off Montlake Blvd. NE and NE 45th Street
Seattle, WA 98195
View maps: Entrance / Exit
Spectator Note: Friends, family and supporters should arrive to the Closing Ceremonies site at least one hour early to get the best view of the program. To witness the final victory walk of the 3-Day is truly an experience worth the wait. All walkers and crew members will remain in the Participant Holding area where they will receive their victory shirt, cheer on their fellow walkers and crew members, and reflect on their experience before the dramatic silent victory walk into Closing Ceremonies.
Driving Directions
From the north via I-5 southbound:
From I-5 southbound, take the NE 45th Street exit (#169). Turn left onto NE 45th Street. Continue east past the main entrance to the University of Washington at 17th Avenue NE and onto the viaduct. Near the bottom of the viaduct, move into the left lane. Continuing on NE 45th Street, move into the right lane. At the next traffic light (located at the 5-Corners intersection of NE 45th Street, NE 45th Place, and Mary Gates Memorial Drive) turn right onto Mary Gates Memorial Drive. Take the first right onto Clark Road. Proceed west to the NE entrance to the E1 parking lot.
TIP: to avoid traffic congestion use the NE entrance to E1 from Mary Gates Memorial Drive.
From the south via I-5 northbound:
From I-5 nouthbound, take the NE 45th Street exit (#169). Turn right onto NE 45th Street. Continue east past the main entrance to the University of Washington at 17th Avenue NE and onto the viaduct. Near the bottom of the viaduct, move into the left lane. As you continue east on NE 45th Street, move into the right lane. At the next traffic light (located at the 5-Corners intersection of NE 45th Street, NE 45th Place, and Mary Gates Memorial Drive) turn right onto Mary Gates Memorial Drive. Take the first right onto Clark Road. Proceed west to the NE entrance to the E1 parking lot.
From the east via State Route 520:
Coming from the east use State Route 520. Take the Montlake Boulevard exit. Continue north on Montlake Blvd. crossing the drawbridge and then travel past the Bank of America Arena and the Intramural Activities Center. Stay in the right-hand lane and continue north. When the road makes a "Y," bear right staying on Montlake Blvd. Take the next right onto Walla Walla Road. Straight ahead you will see a multi-lane northern entrance to the E1 lot.
TIP: To avoid traffic congestion use either the Walla Walla Rd. entrance to E1 or the entrance accessed from Mary Gates Memorial Drive.
Event Parking
Parking Lot E1 will be available for spectator parking.
Public Transportation
The University of Washington can also be accessed by bus. Visit http://transit.metrokc.gov/ for route and timetable information
Want to come cheer at the 3-Day?
Invite Your Friends and Family to Support You
Invite your friends and family to the Opening or Closing Ceremonies. They can also cheer you on at any of the following Cheering Stations. These are designated spots where it is safe for them to gather along the route.
Day One:
Mile Marker 7.9
8:45 am - 12:00 pm
Marina Beach Park
25 Lake Shore Plaza
Kirkland, WA 98033
Mile Marker 16.4
12:00 pm - 5:30 pm
Helen Keller Elementary
13820 108th NE
Kirkland, WA 98034
Day Two:
Mile Marker 7.9
9:00 am - 12:30 pm
Bank of America
14003 NE Woodinville Duvall
Woodinville, WA 98072
Mile Marker 12.7
11:00 am - 3:00 pm
Washington Mutual
18925 Bothell Way Northeast
Bothell, WA 98011
Day Three:
Mile Marker 6.6
8:15 am - 10:45 am
Northwest Kidney Center
14524 Bothell Way NE
Lake Forest Park, WA 98155
Mile Marker 13.2
11:20 am - 2:30 pm
Washington Mutual
5464 Sand Point Way Northeast
Seattle, WA 98105
Invite your friends and family to the Opening or Closing Ceremonies. They can also cheer you on at any of the following Cheering Stations. These are designated spots where it is safe for them to gather along the route.
Day One:
Mile Marker 7.9
8:45 am - 12:00 pm
Marina Beach Park
25 Lake Shore Plaza
Kirkland, WA 98033
Mile Marker 16.4
12:00 pm - 5:30 pm
Helen Keller Elementary
13820 108th NE
Kirkland, WA 98034
Day Two:
Mile Marker 7.9
9:00 am - 12:30 pm
Bank of America
14003 NE Woodinville Duvall
Woodinville, WA 98072
Mile Marker 12.7
11:00 am - 3:00 pm
Washington Mutual
18925 Bothell Way Northeast
Bothell, WA 98011
Day Three:
Mile Marker 6.6
8:15 am - 10:45 am
Northwest Kidney Center
14524 Bothell Way NE
Lake Forest Park, WA 98155
Mile Marker 13.2
11:20 am - 2:30 pm
Washington Mutual
5464 Sand Point Way Northeast
Seattle, WA 98105
Friday, August 18, 2006
I could get hit by a bus, too
This essay has a lot of truth to it, and so I thought I would share it here. The bolding is mine.
------------
I COULD GET HIT BY A BUS TOO
Copyright 1995 Susan Frisius
"You never know when you're going to die, after all, I could get hit by a bus."
Since I've never known anyone who has been hit by a bus, I don't understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.
"You're lucky you have a treatable disease."
Don't get me wrong. I'm thankful I wasn't told, "There's nothing we can do," but losing pieces of my body, having a radiation machine set off a nuclear war in my breast and getting my veins filled with toxic chemicals doesn't exactly make me feel lucky.
"You'll be fine because you have a great attitude."
If attitude really matters, why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. So what does that mean?
"Don't worry, if your time's not up, it's not up."
If that's true, why did I bother with the surgery? Should I cancel the rest of my treatments? Do doctors perform surgery and give chemo and radiation for no good reason? After all, "if my time's up," treatments won't help.
"I've read that anger and stress lead to cancer."
Great! Now I caused my own cancer.
"You should simplify your life."
It's pretty simple now, all I seem to do is go to medical appointments.
"I've read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn't keep you from getting cancer. That's why I watch everything I eat."
The person who tells me this knows I only eat natural foods, cook everything from scratch, don't eat junk foods and rarely eat meat.
"You eat white pasta," she says when she sees my puzzled look.
Of course, she eats white pasta too, but calls the flour "semolina." Does she really think if I had eaten pasta with "semolina" on the label I wouldn't now have cancer?
One person says, "If you really want to live, you will. Just never give up. When people give up, they die."
If I were hit and killed by a bus would she think I died because I gave up?
Another person tells me to visualize the cancer shrinking. She says, "If you really work at it, you can eliminate it."
Most conversations end with "call if you need anything."
I don't have the energy to call anyone - I can hardly feed myself and get to my medical appointments.
Why do intelligent and sensitive people who care about me say such things? Can they really believe I'm responsible both for my cancer and the outcome of my treatments?
I think these people want to believe cancers are caused by a person's poor emotional state or diet. This lets them think they won't get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they're afraid they'll find out their attitudes and diets are no better than mine. So I hear, "How can you be so cheerful?" and "All that yogurt can't be good for you," and "Put your daughters in foster care, they're too stressful for you."
I have no doubt that everyone I talked to about my cancer was concerned about me and wanted to help me keep a positive outlook. I'm sure they were sincere when they said, "I'd like to have you over for dinner sometime, but I know everything makes you sick," or "It's good to see you out grocery shopping, I was worried because I hadn't seen you for a while."
I'm sure friends would have been happy to help if I had called them and asked for assistance. Most likely they thought they were being considerate when they didn't visit or call "so I could rest." I think they just didn't know what to do or say.
So what would help me while I'm being treated for cancer?
Drop in or call. The only way you'll know what I need is if you keep in touch. Remember, if I'm out in the community, I'm well enough to be out. It's when you don't see me that I need your support.
Don't wait for me or my immediate family to ask you for help. It takes too much energy and I don't like admitting I can no longer cope with everyday living. When you want to help, don't ask what I need, just do it. Bring me a meal (white pasta is fine), wash my floors while I sleep, take my children to a movie, get the oil changed in my car, pick up a few vegetables for me at a farm stand, change a burned out light bulb, take my empty yogurt container off the coffee table and throw it out.
Don't minimize the illness that scrambles my life by telling me about simple causes and self cures. Everything I've held important has been touched by it - my ability to raise my children, my work, my independence, my social life.
Don't let your fear of hearing about cancer keep you away. While cancer has become a big part of my life, it's not my whole existence and I am able to converse on other subjects.
Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends' support now more than they ever did.
If I let you know your company is too much for me at the time, come back. If I don't answer the phone, call again. I need to know I can count on you because I'm temporarily unable to count on myself.
If you're feeling helpless because someone you know has cancer, don't. Take them a meal and eat it with them. Talk to them as you wash their dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them.
Both of you will fell better when you take action.
------------
I COULD GET HIT BY A BUS TOO
Copyright 1995 Susan Frisius
"You never know when you're going to die, after all, I could get hit by a bus."
Since I've never known anyone who has been hit by a bus, I don't understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.
"You're lucky you have a treatable disease."
Don't get me wrong. I'm thankful I wasn't told, "There's nothing we can do," but losing pieces of my body, having a radiation machine set off a nuclear war in my breast and getting my veins filled with toxic chemicals doesn't exactly make me feel lucky.
"You'll be fine because you have a great attitude."
If attitude really matters, why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. So what does that mean?
"Don't worry, if your time's not up, it's not up."
If that's true, why did I bother with the surgery? Should I cancel the rest of my treatments? Do doctors perform surgery and give chemo and radiation for no good reason? After all, "if my time's up," treatments won't help.
"I've read that anger and stress lead to cancer."
Great! Now I caused my own cancer.
"You should simplify your life."
It's pretty simple now, all I seem to do is go to medical appointments.
"I've read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn't keep you from getting cancer. That's why I watch everything I eat."
The person who tells me this knows I only eat natural foods, cook everything from scratch, don't eat junk foods and rarely eat meat.
"You eat white pasta," she says when she sees my puzzled look.
Of course, she eats white pasta too, but calls the flour "semolina." Does she really think if I had eaten pasta with "semolina" on the label I wouldn't now have cancer?
One person says, "If you really want to live, you will. Just never give up. When people give up, they die."
If I were hit and killed by a bus would she think I died because I gave up?
Another person tells me to visualize the cancer shrinking. She says, "If you really work at it, you can eliminate it."
Most conversations end with "call if you need anything."
I don't have the energy to call anyone - I can hardly feed myself and get to my medical appointments.
Why do intelligent and sensitive people who care about me say such things? Can they really believe I'm responsible both for my cancer and the outcome of my treatments?
I think these people want to believe cancers are caused by a person's poor emotional state or diet. This lets them think they won't get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they're afraid they'll find out their attitudes and diets are no better than mine. So I hear, "How can you be so cheerful?" and "All that yogurt can't be good for you," and "Put your daughters in foster care, they're too stressful for you."
I have no doubt that everyone I talked to about my cancer was concerned about me and wanted to help me keep a positive outlook. I'm sure they were sincere when they said, "I'd like to have you over for dinner sometime, but I know everything makes you sick," or "It's good to see you out grocery shopping, I was worried because I hadn't seen you for a while."
I'm sure friends would have been happy to help if I had called them and asked for assistance. Most likely they thought they were being considerate when they didn't visit or call "so I could rest." I think they just didn't know what to do or say.
So what would help me while I'm being treated for cancer?
Drop in or call. The only way you'll know what I need is if you keep in touch. Remember, if I'm out in the community, I'm well enough to be out. It's when you don't see me that I need your support.
Don't wait for me or my immediate family to ask you for help. It takes too much energy and I don't like admitting I can no longer cope with everyday living. When you want to help, don't ask what I need, just do it. Bring me a meal (white pasta is fine), wash my floors while I sleep, take my children to a movie, get the oil changed in my car, pick up a few vegetables for me at a farm stand, change a burned out light bulb, take my empty yogurt container off the coffee table and throw it out.
Don't minimize the illness that scrambles my life by telling me about simple causes and self cures. Everything I've held important has been touched by it - my ability to raise my children, my work, my independence, my social life.
Don't let your fear of hearing about cancer keep you away. While cancer has become a big part of my life, it's not my whole existence and I am able to converse on other subjects.
Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends' support now more than they ever did.
If I let you know your company is too much for me at the time, come back. If I don't answer the phone, call again. I need to know I can count on you because I'm temporarily unable to count on myself.
If you're feeling helpless because someone you know has cancer, don't. Take them a meal and eat it with them. Talk to them as you wash their dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them.
Both of you will fell better when you take action.
Thursday, August 17, 2006
Bad dreams
Last night I dreamed that I went to the hospital for testing, and the scans all showed ten spots on my lungs. "I'm so sorry," the doctors said, "But it's advanced to stage IV." In my dream, I ran my fingers through my short hair, realizing that I would soon be bald. In my dream, I knew that my life would never be the same. In my dream, I was exhausted at the prospect of all I had to do.
I pray this was only a dream.
I pray this was only a dream.
Thursday, August 10, 2006
Fundraising
Today I sent out a big email to friends and family...and I'm hoping that some others will come here and see it, and consider making a donation to the Breast Cancer 3-Day.
-------------------
Friends and family,
It is no secret to any of you that I am walking the Breast Cancer 3-Day in a couple of weeks - I've been talking about it nonstop for some time now, getting ready emotionally and physically for the big event. Everything is almost in order: I have become physically able to walk that far (my first 20 mile walk was a resounding success), I have my lymphedema sleeve to war while walking so that my arm won't balloon up during the walk (yes, this is a treatment side effect), I have my amazing team of nine friends walking at my side, and, most importantly, together my team has raised $23,167.25 according to our team webpage
Team Kristina Page .
This is an amazing accomplishment, and one that we are all very, very proud of. The money goes primarily to research (through the Susan G. Komen and the National Philanthropic Trust), every dollar brings us one step closer to finding a cure. We aren't done yet, though, and hope to bring that number even higher.
Some things have changed since our team first decided to walk. The most depressing change is that the statistic "1 in 8 women will get breast cancer in their lifetime" is no longer true: now it's 1 in 7. Think of the women you know, and mull that over. Who will it be? Worst of all, I think of the children that I know. How many of them will it be? It's unbearable.
I have been sliced (five surgeries so far, five more to go), poisoned (16 chemo treatments), and burned (33 radiation treatments, resulting in third degree burns) in an effort to rid my body of this disease... but I am not asking you to donate for me. I'm asking you to donate because I absolutely can not BEAR the idea of these treatments applied to Tessa, or to any of our children. I am asking you to donate so that we can find a cure in our children's lifetime. I'm certain that it's possible, but it's going to take money to fund the research that will change things for the better. I have come through this treatment year a warrior woman, stronger than I ever guessed possible and supported by world class amazing doctors, and yet I still live in fear of recurrance and mets, and in fear of the women I care about being diagnosed. I have already had one knock at the door: my neighbor, who is my age and has a three year old, was diagnosed a couple of weeks ago, and she has stage IV breast cancer (in her liver and bones). Her pain is my pain, and it must be stopped.
The only thing I know how to do to make myself feel better is to fundraise to find a cure. We HAVE to find a cure. In the words of one of my survivor friends on the web, we must Kill the Beast.
This is the last email that I will send asking for your money for this event. I am truly grateful for any donation, small or large, as they all add up and DO make a difference.
You may donate by going to the website below:
Donate to Kristina's Breast Cancer 3-Day Efforts
and either donating online or printing a form to send in with a check.
Thank you for reading this, and for your donation.
Kristina
-------------------
Friends and family,
It is no secret to any of you that I am walking the Breast Cancer 3-Day in a couple of weeks - I've been talking about it nonstop for some time now, getting ready emotionally and physically for the big event. Everything is almost in order: I have become physically able to walk that far (my first 20 mile walk was a resounding success), I have my lymphedema sleeve to war while walking so that my arm won't balloon up during the walk (yes, this is a treatment side effect), I have my amazing team of nine friends walking at my side, and, most importantly, together my team has raised $23,167.25 according to our team webpage
Team Kristina Page .
This is an amazing accomplishment, and one that we are all very, very proud of. The money goes primarily to research (through the Susan G. Komen and the National Philanthropic Trust), every dollar brings us one step closer to finding a cure. We aren't done yet, though, and hope to bring that number even higher.
Some things have changed since our team first decided to walk. The most depressing change is that the statistic "1 in 8 women will get breast cancer in their lifetime" is no longer true: now it's 1 in 7. Think of the women you know, and mull that over. Who will it be? Worst of all, I think of the children that I know. How many of them will it be? It's unbearable.
I have been sliced (five surgeries so far, five more to go), poisoned (16 chemo treatments), and burned (33 radiation treatments, resulting in third degree burns) in an effort to rid my body of this disease... but I am not asking you to donate for me. I'm asking you to donate because I absolutely can not BEAR the idea of these treatments applied to Tessa, or to any of our children. I am asking you to donate so that we can find a cure in our children's lifetime. I'm certain that it's possible, but it's going to take money to fund the research that will change things for the better. I have come through this treatment year a warrior woman, stronger than I ever guessed possible and supported by world class amazing doctors, and yet I still live in fear of recurrance and mets, and in fear of the women I care about being diagnosed. I have already had one knock at the door: my neighbor, who is my age and has a three year old, was diagnosed a couple of weeks ago, and she has stage IV breast cancer (in her liver and bones). Her pain is my pain, and it must be stopped.
The only thing I know how to do to make myself feel better is to fundraise to find a cure. We HAVE to find a cure. In the words of one of my survivor friends on the web, we must Kill the Beast.
This is the last email that I will send asking for your money for this event. I am truly grateful for any donation, small or large, as they all add up and DO make a difference.
You may donate by going to the website below:
Donate to Kristina's Breast Cancer 3-Day Efforts
and either donating online or printing a form to send in with a check.
Thank you for reading this, and for your donation.
Kristina
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