Wednesday, June 17, 2015
Call to Action Update
Here's the update from the Young Survival Coalition
It looks like Senator McCain will not be seeking a vote on the amendment. For today it's a win and the DOD's Breast Cancer Research Program gets to continue. For today....
Tuesday, June 16, 2015
Call to Action!
The breast cancer advocacy world is on fire with discussion about opposition to Sen. McCain's (AZ) amendment #1482 to the National Defense Authorization Act. Here is the text :
What is concerning here is that this will do damage to the Department of Defense Breast Cancer Program. If you click on the link you can see all the other medical research that the DOD does. The vision of the DODBCRP from their website is to end breast cancer by funding innovative, high impact research through a partnership of scientist and consumers. One of the consumer advocates from the breast cancer research program is Noreen Fraser, the woman behind Stand Up 2 Cancer.
Because of sequestration the NIH has already had their funding cut; as a breast cancer survivor and individual who is participating in a clinical trial, the research world can not lose yet another source of funding. There have been too many strides made in treatment methods and I would hate to see it stall because their isn't money to run trials.
Call to Action: go here (putting the link here in case I can't get the widget to work) to send letters to your senators today to ask them to oppose this bill!
What is concerning here is that this will do damage to the Department of Defense Breast Cancer Program. If you click on the link you can see all the other medical research that the DOD does. The vision of the DODBCRP from their website is to end breast cancer by funding innovative, high impact research through a partnership of scientist and consumers. One of the consumer advocates from the breast cancer research program is Noreen Fraser, the woman behind Stand Up 2 Cancer.
Because of sequestration the NIH has already had their funding cut; as a breast cancer survivor and individual who is participating in a clinical trial, the research world can not lose yet another source of funding. There have been too many strides made in treatment methods and I would hate to see it stall because their isn't money to run trials.
Call to Action: go here (putting the link here in case I can't get the widget to work) to send letters to your senators today to ask them to oppose this bill!
Sunday, June 7, 2015
Happy National Cancer Survivors Day!
Today there are 14 million cancer survivors living in the United States. Today is National Cancer Survivors Day and the goal is to increase the quality of life and have healthier and happier survivors. The American Cancer Society has compiled a great list of resources here.
For me as a breast cancer survivor there are certain things that I try to do (some more successful than others) on a daily/yearly basis.
Maintain a Healthy Weight
This means keeping my BMI between 19 and 24.9. Last years visit to my PCP for my annual physical where my weight had creeped up 10 lbs since finishing treatment was a good wake up call. My weight was still within a healthy range, but if I kept eating cookies like cookie monster I was headed for 10 additional pounds each year. It helped me refocus on getting back to the 80/20 rule. Eating well for 80% of the time and allowing for whatever (cookies!) the other 20% of the time. And, it's always helpful to just keep running.
Following the 80%
When I eat like the dietitian that I am it means 5 to 7 fruits and veggies per day. Organic if they are on the Dirty Dozen list. Currently, cherries are in season and I take about a cup with me to work every day. Ideally, I eat them in place of having chips with my lunch. But, sometimes I'll have both. I have organic or at the very least rBST free dairy, daily. Usually in the form of skim milk and fat free yogurt. And if my gut has been out of whack, I enjoy some Kefir to help re-establish my gut bacteria. Whole grains, the whole time. Even my cookies are made with white whole wheat flour. I eat mostly lean proteins: chicken, fish, chicken, chicken, nuts, peanut butter and chicken.
At least 4 hours of exercise per week
I've been a little more tired than I would like. I think its a combination of tamoxifen and getting older (or so I've been told). In order to keep myself from just coming home and sitting on the couch when the weather and schedule allows I've been taking the bus halfway home and then running the rest of the way. They are not the prettiest of runs, but they are getting the job done. Sometimes, however, my body is not willing to run. In order to get my "steps" in for the day I'll walk home from where I usually pick up the second bus. It takes about 30 minutes (if there is no snow!), but again I can be done working out by the time I get home.
Practicing Gratitude
Even though I may not write it down each day, I like to recognize something I am grateful for each day. Sometimes it as simple as as being grateful for my individual co-survivors, sometimes it is as silly as being grateful for chocolate (which is needed) and sometimes I am grateful for concepts such as supportive colleagues.
And today's daily gratitude is pretty easy. I am grateful for all 14 million of my fellow cancer survivors!
For me as a breast cancer survivor there are certain things that I try to do (some more successful than others) on a daily/yearly basis.
Maintain a Healthy Weight
This means keeping my BMI between 19 and 24.9. Last years visit to my PCP for my annual physical where my weight had creeped up 10 lbs since finishing treatment was a good wake up call. My weight was still within a healthy range, but if I kept eating cookies like cookie monster I was headed for 10 additional pounds each year. It helped me refocus on getting back to the 80/20 rule. Eating well for 80% of the time and allowing for whatever (cookies!) the other 20% of the time. And, it's always helpful to just keep running.
Following the 80%
When I eat like the dietitian that I am it means 5 to 7 fruits and veggies per day. Organic if they are on the Dirty Dozen list. Currently, cherries are in season and I take about a cup with me to work every day. Ideally, I eat them in place of having chips with my lunch. But, sometimes I'll have both. I have organic or at the very least rBST free dairy, daily. Usually in the form of skim milk and fat free yogurt. And if my gut has been out of whack, I enjoy some Kefir to help re-establish my gut bacteria. Whole grains, the whole time. Even my cookies are made with white whole wheat flour. I eat mostly lean proteins: chicken, fish, chicken, chicken, nuts, peanut butter and chicken.
At least 4 hours of exercise per week
I've been a little more tired than I would like. I think its a combination of tamoxifen and getting older (or so I've been told). In order to keep myself from just coming home and sitting on the couch when the weather and schedule allows I've been taking the bus halfway home and then running the rest of the way. They are not the prettiest of runs, but they are getting the job done. Sometimes, however, my body is not willing to run. In order to get my "steps" in for the day I'll walk home from where I usually pick up the second bus. It takes about 30 minutes (if there is no snow!), but again I can be done working out by the time I get home.
Practicing Gratitude
Even though I may not write it down each day, I like to recognize something I am grateful for each day. Sometimes it as simple as as being grateful for my individual co-survivors, sometimes it is as silly as being grateful for chocolate (which is needed) and sometimes I am grateful for concepts such as supportive colleagues.
And today's daily gratitude is pretty easy. I am grateful for all 14 million of my fellow cancer survivors!
Saturday, May 30, 2015
Well, I think this is some of my best work
My surgeon was off during my month of tests. I usually see him after my mammogram, but didn't because he was off. Yesterday at 4 pm I had my appointment. I hadn't run into my breast surgeon in the hospital in awhile, so of course the day of my appointment I am behind him at the cashier in the cafeteria. When he sees me come in he says "Oh, hello again, not to worry we will make this quick".
The medical assistant takes my blood pressure, temperature, oxygen stats and heart rate. She looks at me and states "Well, that is the definition of normal." I told her I try. I'm beginning to wonder if I am the youngest patient they have had all day by about 40 years.
The medical assistant gives me a johnny to have open in the front and she logs into my account. I tell her about the large error that was in the system with the transition to the electronic medical record "Brain Surgery-Partial Mastectomy" that the endoscopy folks fixed. She gets a good chuckle out of this and tells the surgeon while I get my johnny on.
He strides in and says "So it's my brain cancer patient". I laugh and say "No, it was breast cancer just that you did the partial mastectomy in my brain". He just shakes his head. "How could that have even been an option?"
We get down to my actual appointment. He asks me about any pain. I tell him that if I haven't run or been working out for >1 week than I get some pain and that shoveling in the winter didn't feel great, but other wise I have zero pain. He is very pleased by this. I know from discussions with some of the nurse's who are also survivors that I am very fortunate to not have any pain. I had a discussion with one the other day about how she had to battle with her health insurance to go see the special lymphadema physical therapist because she has had pain and swelling in her arm as a side effect. She said it took a month to get approved, but now she finally doesn't have pain daily. She is only 10 years older than I am. A year of daily pain. I am grateful that for her it is starting to resolve.
My surgeon does his physical exam. He is super impressed with my scar. "Well, look at how minimal this is. There is only the littlest indentation. Well, I think this is some of my best work." Obviously, he is clearly disappointed with his results 2.5 years later. He looks at me and says some of my most favorite words "I'll see you in a year." Yay!
Then on his way out the door. "Keep running.". I would agree with him that my level of physical activity has likely helped me from having significant pain. It's also a great motivator to keep myself moving. And, occupational hazard, but I think my excellent nutrition has likely helped my great healing from day one. Cookies and all.
Speaking of cookies as I already celebrated with a run and some weight lifting, I think I'll do a little baking. Or maybe a lot of baking. And some more running.
The medical assistant takes my blood pressure, temperature, oxygen stats and heart rate. She looks at me and states "Well, that is the definition of normal." I told her I try. I'm beginning to wonder if I am the youngest patient they have had all day by about 40 years.
The medical assistant gives me a johnny to have open in the front and she logs into my account. I tell her about the large error that was in the system with the transition to the electronic medical record "Brain Surgery-Partial Mastectomy" that the endoscopy folks fixed. She gets a good chuckle out of this and tells the surgeon while I get my johnny on.
He strides in and says "So it's my brain cancer patient". I laugh and say "No, it was breast cancer just that you did the partial mastectomy in my brain". He just shakes his head. "How could that have even been an option?"
We get down to my actual appointment. He asks me about any pain. I tell him that if I haven't run or been working out for >1 week than I get some pain and that shoveling in the winter didn't feel great, but other wise I have zero pain. He is very pleased by this. I know from discussions with some of the nurse's who are also survivors that I am very fortunate to not have any pain. I had a discussion with one the other day about how she had to battle with her health insurance to go see the special lymphadema physical therapist because she has had pain and swelling in her arm as a side effect. She said it took a month to get approved, but now she finally doesn't have pain daily. She is only 10 years older than I am. A year of daily pain. I am grateful that for her it is starting to resolve.
My surgeon does his physical exam. He is super impressed with my scar. "Well, look at how minimal this is. There is only the littlest indentation. Well, I think this is some of my best work." Obviously, he is clearly disappointed with his results 2.5 years later. He looks at me and says some of my most favorite words "I'll see you in a year." Yay!
Then on his way out the door. "Keep running.". I would agree with him that my level of physical activity has likely helped me from having significant pain. It's also a great motivator to keep myself moving. And, occupational hazard, but I think my excellent nutrition has likely helped my great healing from day one. Cookies and all.
Speaking of cookies as I already celebrated with a run and some weight lifting, I think I'll do a little baking. Or maybe a lot of baking. And some more running.
Thursday, May 21, 2015
Putting Your Money to Good Use
One of the news stories that really disturbed me this week was the $187 million fraud complaint against Cancer Fund of America, The Breast Cancer Society, Children's Cancer Fund of America, and Cancer Support Services. A group of four charities that were run by family members, which used a reported 3% of their funds raised to actually help cancer patients. As this Wall Street Journal details, one of the services the Cancer Fund did provide was shipping Little Debbie snacks and sample sized shampoo. Are you even kidding me? Yes, please send me and my bald head sample shampoo. Oh and please, while I'm trying to optimize my nutrition intake please send me literal crap in plastic wrap. Then these jerks went on elaborate vacations and bought themselves fancy cars. Yes, deceiving the public and not actually helping cancer patients must be really hard work that you need to reward yourself for. These people make me angry on an entirely different level.
If you looking for worthwhile places to make donations for breast cancer funding, read this great article by Time magazine. Which mentions two of my favorite organizations: Young Survival Coalition and the Dr. Susan Love Research Foundation. The YSC provided me with a free cancer navigator (giant binder) that helped me organize and navigate through my treatment. The DSLRF's primary focus is the cause of breast cancer in order to prevent it. Via their Army of Woman I have enrolled in more genetic studies and enrolled in the Health of Woman (HOW).
Or if you are looking into if a charity is worth your donation, don't forget to check on www.charitynavigator.org. They even rank them by cause.
If you looking for worthwhile places to make donations for breast cancer funding, read this great article by Time magazine. Which mentions two of my favorite organizations: Young Survival Coalition and the Dr. Susan Love Research Foundation. The YSC provided me with a free cancer navigator (giant binder) that helped me organize and navigate through my treatment. The DSLRF's primary focus is the cause of breast cancer in order to prevent it. Via their Army of Woman I have enrolled in more genetic studies and enrolled in the Health of Woman (HOW).
Or if you are looking into if a charity is worth your donation, don't forget to check on www.charitynavigator.org. They even rank them by cause.
Sunday, May 17, 2015
Mammogram and the new Mass State Law
When you have barely size "A" boobs and a quarter of one is missing, mammogram will forever be a contact sport. I had my mammogram first thing in the morning on my last day of work before vacation. As, I am now a mammogram seasoned professional I did not put deodorant on in the am was thankful for the cool temperatures. No deodorant = better pictures (and no need to use the hospital supplied Mammo-wipes to remove it. Because I am 12, I giggle everytime I see them).
I check in for my appointment, put my pink johnny on and sit in the waiting room filling out the forms about my breast cancer history. I take the liberty to draw in my scars on the diagram for the technician. I also see a couple of women in the waiting room who also work at the hospital with me. Their faces are horrified to see me in there. I feel like I need to turn my paper over and write "Just standard follow up". But they see me looking back and all just smile and then pretend like we do not see each other. I run into one of them up on one of the hospital floors later and she looks horrified again as I approach her, but when I start asking her questions about a patient and their plan or care I can see her relief. The majority of people in the hospital know that I am always happy to discuss all things breast health related, but I do know the time and the place.
After waiting only briefly the mammogram tech comes to get me. This time instead of a horrified look, her face lights up. She is the same mammogram tech who did my 6 month follow up mammogram when I was just starting to regrow hair. She remembers what department I work in and what side my cancer was on. I told her how impressed I was. She let me know that my age and great attitude left an impression on her.
She gets me all set up and lets me know how she'll be looking for the metal clips I have in each breast. We do our very fun coordination of press your face against this plastic shield here, stick your butt out over there, grab the handle and pull yourself in here, now let me squeeze the boob vice and don't breathe. The don't breathe part still cracks me up; pretty sure I couldn't breathe if I wanted too. The mammogram tech also remembers me because of my pain tolerance. While trying to view my surgical clips she really needs to jack up the the pressure. I read off the machine: 12 lbs of pressure. 12! She is happy with the view and takes the pictures quickly. My skin at this point is hot pink. All I can think of is that if men had to have 12 lbs of pressure applied to anywhere on their body the method of testing would have been changed 50 years ago. She does the pictures on both sides, with significantly more photos on the right side to really capture the clips near my chest wall.
After a brief return to the waiting room, she comes back to let me know the pictures look good and I am free to go. I thank her and go to get dress. I instantly regret picking a v-neck shirt for the day. I have large red welts on both boobs and reach out to my sternum. I consider walking around with my lab coat closed all day. It takes 4 hours for the marks to go away, but knowing she got good pictures was an excellent send off to vacation.
The state of Massachusetts passed a law in June 2014 An Act Relative to Breast Cancer Early Detection. The purpose of the law is to notify you if you have dense breast tissue, the degree of density, why that could pose a risk for breast cancer and where to find more information. Knowing that I indeed have dense breast tissue (as I should at age 33) I was intrigued to see my letter. Well, my letter came and let me know that I have "extremely dense" breast tissue and other screening methods may be beneficial. I chuckled knowing that this was a form letter and that a CT scan and multiple physical exams were my "other" screening methods. It listed some resources if I felt I needed more follow up. I understand the purpose, as it is important for folks to know about their density and perhaps can open a dialogue with someone's PCP if it is not already there. I think it's great to make people aware of their dense breasts and hope that does lead to additional screening where warranted, because early detection is better.
There are 22 states that have passed similar laws and did you know that there are breast density advocacy groups? Neither did I until I was doing some research to see how many other states have enacted such laws. They even have a free app on itunes for dense breast folks in order to provide them information. How cool is that? But, this also makes me wonder why do we need to have state laws? Shouldn't this just be standard practice of care. Get's me fired up. Same way that some health insurances don't cover the BRCA genetic test. Nope, standard of care. Good thing we have advocacy groups.
Happy to know that me and my legally declared extremely dense breasts can continue on being NED for another year. And another year until I can see how much pressure my boobs can take in the mammogram machine. I don't want to know what kind of training that would involve.
I check in for my appointment, put my pink johnny on and sit in the waiting room filling out the forms about my breast cancer history. I take the liberty to draw in my scars on the diagram for the technician. I also see a couple of women in the waiting room who also work at the hospital with me. Their faces are horrified to see me in there. I feel like I need to turn my paper over and write "Just standard follow up". But they see me looking back and all just smile and then pretend like we do not see each other. I run into one of them up on one of the hospital floors later and she looks horrified again as I approach her, but when I start asking her questions about a patient and their plan or care I can see her relief. The majority of people in the hospital know that I am always happy to discuss all things breast health related, but I do know the time and the place.
After waiting only briefly the mammogram tech comes to get me. This time instead of a horrified look, her face lights up. She is the same mammogram tech who did my 6 month follow up mammogram when I was just starting to regrow hair. She remembers what department I work in and what side my cancer was on. I told her how impressed I was. She let me know that my age and great attitude left an impression on her.
She gets me all set up and lets me know how she'll be looking for the metal clips I have in each breast. We do our very fun coordination of press your face against this plastic shield here, stick your butt out over there, grab the handle and pull yourself in here, now let me squeeze the boob vice and don't breathe. The don't breathe part still cracks me up; pretty sure I couldn't breathe if I wanted too. The mammogram tech also remembers me because of my pain tolerance. While trying to view my surgical clips she really needs to jack up the the pressure. I read off the machine: 12 lbs of pressure. 12! She is happy with the view and takes the pictures quickly. My skin at this point is hot pink. All I can think of is that if men had to have 12 lbs of pressure applied to anywhere on their body the method of testing would have been changed 50 years ago. She does the pictures on both sides, with significantly more photos on the right side to really capture the clips near my chest wall.
After a brief return to the waiting room, she comes back to let me know the pictures look good and I am free to go. I thank her and go to get dress. I instantly regret picking a v-neck shirt for the day. I have large red welts on both boobs and reach out to my sternum. I consider walking around with my lab coat closed all day. It takes 4 hours for the marks to go away, but knowing she got good pictures was an excellent send off to vacation.
The state of Massachusetts passed a law in June 2014 An Act Relative to Breast Cancer Early Detection. The purpose of the law is to notify you if you have dense breast tissue, the degree of density, why that could pose a risk for breast cancer and where to find more information. Knowing that I indeed have dense breast tissue (as I should at age 33) I was intrigued to see my letter. Well, my letter came and let me know that I have "extremely dense" breast tissue and other screening methods may be beneficial. I chuckled knowing that this was a form letter and that a CT scan and multiple physical exams were my "other" screening methods. It listed some resources if I felt I needed more follow up. I understand the purpose, as it is important for folks to know about their density and perhaps can open a dialogue with someone's PCP if it is not already there. I think it's great to make people aware of their dense breasts and hope that does lead to additional screening where warranted, because early detection is better.
There are 22 states that have passed similar laws and did you know that there are breast density advocacy groups? Neither did I until I was doing some research to see how many other states have enacted such laws. They even have a free app on itunes for dense breast folks in order to provide them information. How cool is that? But, this also makes me wonder why do we need to have state laws? Shouldn't this just be standard practice of care. Get's me fired up. Same way that some health insurances don't cover the BRCA genetic test. Nope, standard of care. Good thing we have advocacy groups.
Happy to know that me and my legally declared extremely dense breasts can continue on being NED for another year. And another year until I can see how much pressure my boobs can take in the mammogram machine. I don't want to know what kind of training that would involve.
Sunday, May 10, 2015
So it's tests then vacation
For the past two years every single time I went away for vacation I have come back and had tests or injections or blood draws to do. Every. Single. Time. After 2 weeks of testing every 3-4 days I went on vacation after. Thursday I had my mammogram (recap and insight about the new Massachusetts law to follow later) and was cleared good to go. Bruised and red and regretting wearing a v-neck, but good to go.
Let me tell you, not having any tests to think about when you go away makes for vacation x 10. It helped me savor the experience and be grateful for all of it.
I started my trip in Denver for my cousins bridal shower and my Aunt who was very excited about my being declared NED introduced me to people as a Breast Cancer Survivor. It was very fun. One of my extended family members who was there had recently been declared NED himself (Yay!). His hair had recently grown back in and had the familiar texture and curl of a fresh chemo perm. He was talking about how one side of his head has been slow to regrow. I told him for me the last portion activated was the top of my head, so I had male pattern baldness for an extra month after finishing chemo. He chuckled as this made him feel better.
Someone walked by and asked him "How are you doing? How are you feeling?"
He asked me how long it would be until people started the conversation with something/anything else. I told him that even 2 years later for some people it is still their first question, but for most it has moved to their second question. I told him the great part is that for me 6 months later I was able to not think about cancer all the time or first thing in the morning. There came a point where I realized I went two days without talking about it with multiple people. He stared at me incredulously. I laughed. I told him that I too had that reaction when a fellow survivor told me the same thing. He'll get there.
Next up on my vacation/celebration was a trip to visit my brother, sister in law and my 6 month old niece. If you ever want to feel grateful for another year of survivorship hang out with a 6 month old for the week. Watch her learn how to sit up, take her first swim in the pool, and teach her Itsy Bitsy Spider. And watch her LOVE apples. Too fun. But, spending time with her made me so grateful that their will be more milestones for her and me.
Tomorrow I go back to work. And guess what. I have zero tests, zero appointments this week. None. Hopefully, that will ease the transition back to the real world.
But, this photo will also help....
Let me tell you, not having any tests to think about when you go away makes for vacation x 10. It helped me savor the experience and be grateful for all of it.
I started my trip in Denver for my cousins bridal shower and my Aunt who was very excited about my being declared NED introduced me to people as a Breast Cancer Survivor. It was very fun. One of my extended family members who was there had recently been declared NED himself (Yay!). His hair had recently grown back in and had the familiar texture and curl of a fresh chemo perm. He was talking about how one side of his head has been slow to regrow. I told him for me the last portion activated was the top of my head, so I had male pattern baldness for an extra month after finishing chemo. He chuckled as this made him feel better.
Someone walked by and asked him "How are you doing? How are you feeling?"
He asked me how long it would be until people started the conversation with something/anything else. I told him that even 2 years later for some people it is still their first question, but for most it has moved to their second question. I told him the great part is that for me 6 months later I was able to not think about cancer all the time or first thing in the morning. There came a point where I realized I went two days without talking about it with multiple people. He stared at me incredulously. I laughed. I told him that I too had that reaction when a fellow survivor told me the same thing. He'll get there.
Next up on my vacation/celebration was a trip to visit my brother, sister in law and my 6 month old niece. If you ever want to feel grateful for another year of survivorship hang out with a 6 month old for the week. Watch her learn how to sit up, take her first swim in the pool, and teach her Itsy Bitsy Spider. And watch her LOVE apples. Too fun. But, spending time with her made me so grateful that their will be more milestones for her and me.
Tomorrow I go back to work. And guess what. I have zero tests, zero appointments this week. None. Hopefully, that will ease the transition back to the real world.
But, this photo will also help....
Subscribe to:
Posts (Atom)