Hello friends,
this week I want to talk to you about how you will live the new normal your life has become after being diagnosed with mets bc. The rounds of tests, doctors appointments and new medications that you will be taking daily. Plus, the multiple offers to help. It can be such a confusing time. People want to help you and your not even sure yet what you need. I suggest that you keep names and numbers for these kind souls and stretch beyond your comfort level by allowing them to really help out when you need it. There are many other topics covered today. Medicines, when to take them, and staying on a schedule. It will all make sense to you as you learn more about your treatment plan and accompanying meds. If you have any questions for me please leave them in the comments.
Thanks for stopping by.
Leslie
Tuesday, July 29, 2014
Sunday, July 27, 2014
Breast cancer is breast cancer right?
Hello people,
Q: When is breast cancer not breast cancer?
A: When it spreads to other areas of the body.
That's right, Metastatic breast cancer is not currently included in the statistics used by groups like Susan G. Komen to show the cure rate of cancer. It is the cancer industries dirty little secret that the 40,000 men and women who are die from mets breast cancer each year, aren't included in the stats. Why would that be you might ask. Well, it would make their cure rates lower and it wouldn't make people walk/run and donate to the many pink ribbon groups with their hands out for donations.
Below is an informative post I wrote 3 yrs ago as all this information was becoming new to me. I thought that I'd share it with you here on this blog. It was previously posted on my old blog the beautiful life.
Breast cancer is breast cancer, Right?
Hello people,
Spoiler alert, there is no makeup or fashion in this post!
I hope that this post finds all of you healthy and enjoying Summer. I would like to take a moment to remind the women readers to do monthly breast exams. In cast you didn't know this, Men can develop breast cancer as well. So, men if you feel something odd, get it checked.
Now how is one type of breast cancer different from another? Well of course there is staging, but I won't get into that. There is breast cancer that you would typically hear about, then there is inflammatory breast cancer which is mainly the tissue of the breast and ducts, and there is METS BC. Here is some information that I borrowed from Amy Durfee West's blog. http://www.durfeewest.com/?tag=metastatic-breast-cancer
Stage IV breast cancer is considered incurable. That makes it kind of an embarrassment in some of the “survivor” literature. Supposedly you have early detection, and you follow doctor’s orders, and you do your surgery, chemo and maybe radiation, and you lose weight and control stress and you become a cancer-free survivor. What do we do with people who don’t fit that profile? Well, there isn't much research funding for Mets breast cancer.
METAvivor’s 5 MBC Misperceptions
Myth: Research funding is well balanced for all stages of cancer.
Reality: 90% of cancer deaths result from Stage IV cancer, but only 2% of research funds are devoted to stage IV.
Myth: Metastatic breast cancer is rare.
Reality: 30% of breast cancer patients progress to Stage IV. Many more initially present with metastatic breast cancer.
Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
Reality: Metastasis happens despite vigilance and precautions. Even Stage I patients can and do metastasize.
Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.
Myth: Stage IV breast cancer patients are well supported by many groups.
Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to Stage IV.
Okay, so that is end of the post that I've linked you to. On this page so aptly named The beautiful life, I want to impart on you that despite the negative things that are in the information, I still feel joy. Each morning I wake, It is another gift. I used to wake up thinking that it was the same old same old. Now I wake up thinking of the day as a blessing. It also makes me not plan things long term. It is about living in the moment or the day. That really does make every second such a beautiful moment in life. In so many ways it also has made the people closest to me more beautiful too. They say you never know who your real friends are until you go through a crisis. That is completely true. My true friends and family are beyond coming through for me. They are solid as a rock.
Let me remind you again to check yourselves, and get yearly mammograms.
Thank you for stopping by this blog. If any of this information has been helpful to you or if you have any questions please let me know in the comments.
Leslie
Q: When is breast cancer not breast cancer?
A: When it spreads to other areas of the body.
That's right, Metastatic breast cancer is not currently included in the statistics used by groups like Susan G. Komen to show the cure rate of cancer. It is the cancer industries dirty little secret that the 40,000 men and women who are die from mets breast cancer each year, aren't included in the stats. Why would that be you might ask. Well, it would make their cure rates lower and it wouldn't make people walk/run and donate to the many pink ribbon groups with their hands out for donations.
Below is an informative post I wrote 3 yrs ago as all this information was becoming new to me. I thought that I'd share it with you here on this blog. It was previously posted on my old blog the beautiful life.
Breast cancer is breast cancer, Right?
Hello people,
Spoiler alert, there is no makeup or fashion in this post!
I hope that this post finds all of you healthy and enjoying Summer. I would like to take a moment to remind the women readers to do monthly breast exams. In cast you didn't know this, Men can develop breast cancer as well. So, men if you feel something odd, get it checked.
Now how is one type of breast cancer different from another? Well of course there is staging, but I won't get into that. There is breast cancer that you would typically hear about, then there is inflammatory breast cancer which is mainly the tissue of the breast and ducts, and there is METS BC. Here is some information that I borrowed from Amy Durfee West's blog. http://www.durfeewest.com/?tag=metastatic-breast-cancer
Stage IV breast cancer is considered incurable. That makes it kind of an embarrassment in some of the “survivor” literature. Supposedly you have early detection, and you follow doctor’s orders, and you do your surgery, chemo and maybe radiation, and you lose weight and control stress and you become a cancer-free survivor. What do we do with people who don’t fit that profile? Well, there isn't much research funding for Mets breast cancer.
METAvivor’s 5 MBC Misperceptions
Myth: Research funding is well balanced for all stages of cancer.
Reality: 90% of cancer deaths result from Stage IV cancer, but only 2% of research funds are devoted to stage IV.
Myth: Metastatic breast cancer is rare.
Reality: 30% of breast cancer patients progress to Stage IV. Many more initially present with metastatic breast cancer.
Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
Reality: Metastasis happens despite vigilance and precautions. Even Stage I patients can and do metastasize.
Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.
Myth: Stage IV breast cancer patients are well supported by many groups.
Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to Stage IV.
Okay, so that is end of the post that I've linked you to. On this page so aptly named The beautiful life, I want to impart on you that despite the negative things that are in the information, I still feel joy. Each morning I wake, It is another gift. I used to wake up thinking that it was the same old same old. Now I wake up thinking of the day as a blessing. It also makes me not plan things long term. It is about living in the moment or the day. That really does make every second such a beautiful moment in life. In so many ways it also has made the people closest to me more beautiful too. They say you never know who your real friends are until you go through a crisis. That is completely true. My true friends and family are beyond coming through for me. They are solid as a rock.
Let me remind you again to check yourselves, and get yearly mammograms.
Thank you for stopping by this blog. If any of this information has been helpful to you or if you have any questions please let me know in the comments.
Leslie
Monday, July 21, 2014
Cancer diagnosis 101
Hello My friends!
If this is your first time here, WELCOME! Come on in, take a look around, view the archived posts, feel free to ask questions or leave comments. If you are a returning blog follower, thank you for coming back. Take a moment to let me know what you like about this blog or what you wish you would find here. I love to hear from you guys!
In the following video I talk about the 101's of being diagnosed. What to expect, what advice I recommend, and things I wish I had known sooner. ( you can make a wig from you own hair, before loosing it to chemo, (who knew?) yeah) I also have a list of recommended websites in the mets breast cancer community. If you have found this blog because you are searching general info about cancer, you can find more specific to your type of cancer atthe American cancer society website.
Here is a list of the mets breast cancer blogs I follow.
http://www.butdoctorihatepink.com
http://jillscancerjourney.blogspot.com
http://lisabadams.com
http://www.lizkreger.com
http://gracefulwomanwarrior.com
http://ihatebreastcancer.wordpress.com
And for products specific to breast cancer patients you can go to:
http://www.headcovers.com/11371/eyebrow-mascara-brow-tint/
You will find my video below. Let me know what you think. What sort of things do you want to know about cancer that I can help you with in part two of diagnosis 101?
Thanks for stopping by,
Leslie
If this is your first time here, WELCOME! Come on in, take a look around, view the archived posts, feel free to ask questions or leave comments. If you are a returning blog follower, thank you for coming back. Take a moment to let me know what you like about this blog or what you wish you would find here. I love to hear from you guys!
In the following video I talk about the 101's of being diagnosed. What to expect, what advice I recommend, and things I wish I had known sooner. ( you can make a wig from you own hair, before loosing it to chemo, (who knew?) yeah) I also have a list of recommended websites in the mets breast cancer community. If you have found this blog because you are searching general info about cancer, you can find more specific to your type of cancer atthe American cancer society website.
Here is a list of the mets breast cancer blogs I follow.
http://www.butdoctorihatepink.com
http://jillscancerjourney.blogspot.com
http://lisabadams.com
http://www.lizkreger.com
http://gracefulwomanwarrior.com
http://ihatebreastcancer.wordpress.com
And for products specific to breast cancer patients you can go to:
http://www.headcovers.com/11371/eyebrow-mascara-brow-tint/
You will find my video below. Let me know what you think. What sort of things do you want to know about cancer that I can help you with in part two of diagnosis 101?
Thanks for stopping by,
Leslie
Wednesday, July 16, 2014
Different products I have used to treat hand and foot syndrome
Hello friends,
I am attempting to do things a little differently on this blog. I am trying to create more pages that will lead you to specific topics as you search for answers on your cancer journey. For instance, you may be specifically looking for info on hand and foot syndrome, and you don't want to read my whole blog to find answers. Creating pages will help you. You just come to my blog, look through the pages menu to find the topic you're looking for and then Viola! You can see if I have the answers you seek. The first of the pages I will be posting to this blog is about the types of creams, and ointments I use for keeping the hand and foot syndrome from getting out of control. Don't get me wrong, I still have it, but it helps it from cracking, bleeding, peeling or being too painful. My feet and hands are still red, but these products really help. Of course you should always let your doctor or a nurse know that you are experiencing this. They may have other recommendations for you. These are supplementary to what they may suggest.
In addition to the over the counter creams, I also use coconut oil. This is a food grade oil, and I do use it in cooking. But I also scoop a little tupperware container of it to keep in the bathroom. I use this as a body butter on my feet, legs and arms. It smells like Hawaiian tropic. Smells sooooo great! I also will use about a tablespoon size once a week and put it on dry hair for about 15 minutes as a deep conditioner. I use a thumb nail size of it to remove eyeliner and mascara daily. Just rub it into your eyes until you have black circles like a raccoon, and then remove it with a cotton ball and wash your face using your regular facial cleanser. It makes your lashes soft and really removes all your eye make very well. It dissolves really nicely in hot bath water for a oil bath. Leaving your skin soft and silky. It is so much more than a kitchen product. Try it out and let me know your thoughts in the comments.
Also, did anyone find the hidden message in my previous blog post? Just wondering if anyone picked up on that. Look for more hidden messages in posts to come.
Thanks for stopping by,
Leslie
I am attempting to do things a little differently on this blog. I am trying to create more pages that will lead you to specific topics as you search for answers on your cancer journey. For instance, you may be specifically looking for info on hand and foot syndrome, and you don't want to read my whole blog to find answers. Creating pages will help you. You just come to my blog, look through the pages menu to find the topic you're looking for and then Viola! You can see if I have the answers you seek. The first of the pages I will be posting to this blog is about the types of creams, and ointments I use for keeping the hand and foot syndrome from getting out of control. Don't get me wrong, I still have it, but it helps it from cracking, bleeding, peeling or being too painful. My feet and hands are still red, but these products really help. Of course you should always let your doctor or a nurse know that you are experiencing this. They may have other recommendations for you. These are supplementary to what they may suggest.
In addition to the over the counter creams, I also use coconut oil. This is a food grade oil, and I do use it in cooking. But I also scoop a little tupperware container of it to keep in the bathroom. I use this as a body butter on my feet, legs and arms. It smells like Hawaiian tropic. Smells sooooo great! I also will use about a tablespoon size once a week and put it on dry hair for about 15 minutes as a deep conditioner. I use a thumb nail size of it to remove eyeliner and mascara daily. Just rub it into your eyes until you have black circles like a raccoon, and then remove it with a cotton ball and wash your face using your regular facial cleanser. It makes your lashes soft and really removes all your eye make very well. It dissolves really nicely in hot bath water for a oil bath. Leaving your skin soft and silky. It is so much more than a kitchen product. Try it out and let me know your thoughts in the comments.
Also, did anyone find the hidden message in my previous blog post? Just wondering if anyone picked up on that. Look for more hidden messages in posts to come.
Thanks for stopping by,
Leslie
Different products I have used to treat hand and foot syndrome
Hello friends,
I am attempting to do things a little differently on this blog. I am trying to create more pages that will lead you to specific topics as you search for answers on your cancer journey. For instance, you may be specifically looking for info on hand and foot syndrome, and you don't want to read my whole blog to find answers. Creating pages will help you. You just come to my blog, look through the pages menu to find the topic you're looking for and then Viola! You can see if I have the answers you seek. The first of the pages I will be posting to this blog is about the types of creams, and ointments I use for keeping the hand and foot syndrome from getting out of control. Don't get me wrong, I still have it, but it helps it from cracking, bleeding, peeling or being too painful. My feet and hands are still red, but these products really help. Of course you should always let your doctor or a nurse know that you are experiencing this. They may have other recommendations for you. These are supplementary to what they may suggest.
In addition to the over the counter creams, I also use coconut oil. This is a food grade oil, and I do use it in cooking. But I also scoop a little tupperware container of it to keep in the bathroom. I use this as a body butter on my feet, legs and arms. It smells like Hawaiian tropic. Smells sooooo great! I also will use about a tablespoon size once a week and put it on dry hair for about 15 minutes as a deep conditioner. I use a thumb nail size of it to remove eyeliner and mascara daily. Just rub it into your eyes until you have black circles like a raccoon, and then remove it with a cotton ball and wash your face using your regular facial cleanser. It makes your lashes soft and really removes all your eye make very well. It dissolves really nicely in hot bath water for a oil bath. Leaving your skin soft and silky. It is so much more than a kitchen product. Try it out and let me know your thoughts in the comments.
Also, did anyone find the hidden message in my previous blog post? Just wondering if anyone picked up on that. Look for more hidden messages in posts to come.
Thanks for stopping by,
Leslie
I am attempting to do things a little differently on this blog. I am trying to create more pages that will lead you to specific topics as you search for answers on your cancer journey. For instance, you may be specifically looking for info on hand and foot syndrome, and you don't want to read my whole blog to find answers. Creating pages will help you. You just come to my blog, look through the pages menu to find the topic you're looking for and then Viola! You can see if I have the answers you seek. The first of the pages I will be posting to this blog is about the types of creams, and ointments I use for keeping the hand and foot syndrome from getting out of control. Don't get me wrong, I still have it, but it helps it from cracking, bleeding, peeling or being too painful. My feet and hands are still red, but these products really help. Of course you should always let your doctor or a nurse know that you are experiencing this. They may have other recommendations for you. These are supplementary to what they may suggest.
In addition to the over the counter creams, I also use coconut oil. This is a food grade oil, and I do use it in cooking. But I also scoop a little tupperware container of it to keep in the bathroom. I use this as a body butter on my feet, legs and arms. It smells like Hawaiian tropic. Smells sooooo great! I also will use about a tablespoon size once a week and put it on dry hair for about 15 minutes as a deep conditioner. I use a thumb nail size of it to remove eyeliner and mascara daily. Just rub it into your eyes until you have black circles like a raccoon, and then remove it with a cotton ball and wash your face using your regular facial cleanser. It makes your lashes soft and really removes all your eye make very well. It dissolves really nicely in hot bath water for a oil bath. Leaving your skin soft and silky. It is so much more than a kitchen product. Try it out and let me know your thoughts in the comments.
Also, did anyone find the hidden message in my previous blog post? Just wondering if anyone picked up on that. Look for more hidden messages in posts to come.
Thanks for stopping by,
Leslie
Saturday, July 12, 2014
my legacy......cancer
Hello friends,
Ever heard that song....legacy? Well If you haven't heard it before, I will post the video of it below: here:
So why do I mention this song? Well, as a person living with terminal cancer I often wonder what the legacy I will leave for my husband and children will be. Lately, it has been brought right to the forefront that part of my legacy will most likely be cancer. If not the actual disease than most definitely memories of me struggling with it and how it affects each member of my family. Beyond the effects that will be left behind, the possibility of it being passed on to my daughter (of son- because men get breast cancer too) are very strong. You see, my mom was diagnosed at age 47. I was diagnosed at age 34. I have a 21 yr old daughter. I have a 23 yr old son. This week my daughter had an infection that caused a lymph node under her arm to swell. ( my cancer originated in my right axillary node or arm pit) Needless to say we wasted zero time in getting this checked out. And, as I mentioned this was only ( thank the Lord) a result of an infection. It went away in a weeks time of taking antibiotics. However, my daughter had to have a sonogram. It showed a normal lymph node. The same as the one on the opposite side. Whew! But... we now know that because I had my diagnosis at 34, she should begin being checked 10 yrs sooner. Or at the age of 24d. It made me so sad to find that out. For her sake. That she has to give up the comfort of just living in good health and hover over her body and wonder when.... if she will develop anything abnormal. Plus my children have the double whammy of wondering if they will get cll. Or chronic lymphocytic leukemia.
I don't share any of this to make you feel badly for us. Or them. I only am saying that this is a very big chunk of the legacy that I leave. But there is more. We are a very PUNNY family. We can turn anything into a joke. We have a ton of personal jokes shared amongst ourselves. We love animals. Enjoy solving things...mysteries, puzzles, problems. We all are creative, love nature, enjoy a great book or movie. I look at my family and know that there is more. So much more than wether or not they will get cancer that I leave behind. Some times when a person calls and my daughter answers the phone, they will mistake her voice for mine. Wow, that is a crazy legacy. But we do sound a like. My son loves music, and I think he gets that from me. At least the figuring out what it means side. The instrumental knowledge he learned from Mo, and the talent is all him. Beyond how my children are like me, there is what they have learned from me or learned that they don't want to be like from me.
In reality, no matter our genetics, what we share with our families leaves an impact. Tiny ripples that leave big waves, that can become tidal. So I want to ask you, what is YOUR legacy? Please feel free to leave your comments, opinions and thoughts in the comments.
Thanks for stopping by,
Leslie
Ever heard that song....legacy? Well If you haven't heard it before, I will post the video of it below: here:
So why do I mention this song? Well, as a person living with terminal cancer I often wonder what the legacy I will leave for my husband and children will be. Lately, it has been brought right to the forefront that part of my legacy will most likely be cancer. If not the actual disease than most definitely memories of me struggling with it and how it affects each member of my family. Beyond the effects that will be left behind, the possibility of it being passed on to my daughter (of son- because men get breast cancer too) are very strong. You see, my mom was diagnosed at age 47. I was diagnosed at age 34. I have a 21 yr old daughter. I have a 23 yr old son. This week my daughter had an infection that caused a lymph node under her arm to swell. ( my cancer originated in my right axillary node or arm pit) Needless to say we wasted zero time in getting this checked out. And, as I mentioned this was only ( thank the Lord) a result of an infection. It went away in a weeks time of taking antibiotics. However, my daughter had to have a sonogram. It showed a normal lymph node. The same as the one on the opposite side. Whew! But... we now know that because I had my diagnosis at 34, she should begin being checked 10 yrs sooner. Or at the age of 24d. It made me so sad to find that out. For her sake. That she has to give up the comfort of just living in good health and hover over her body and wonder when.... if she will develop anything abnormal. Plus my children have the double whammy of wondering if they will get cll. Or chronic lymphocytic leukemia.
I don't share any of this to make you feel badly for us. Or them. I only am saying that this is a very big chunk of the legacy that I leave. But there is more. We are a very PUNNY family. We can turn anything into a joke. We have a ton of personal jokes shared amongst ourselves. We love animals. Enjoy solving things...mysteries, puzzles, problems. We all are creative, love nature, enjoy a great book or movie. I look at my family and know that there is more. So much more than wether or not they will get cancer that I leave behind. Some times when a person calls and my daughter answers the phone, they will mistake her voice for mine. Wow, that is a crazy legacy. But we do sound a like. My son loves music, and I think he gets that from me. At least the figuring out what it means side. The instrumental knowledge he learned from Mo, and the talent is all him. Beyond how my children are like me, there is what they have learned from me or learned that they don't want to be like from me.
In reality, no matter our genetics, what we share with our families leaves an impact. Tiny ripples that leave big waves, that can become tidal. So I want to ask you, what is YOUR legacy? Please feel free to leave your comments, opinions and thoughts in the comments.
Thanks for stopping by,
Leslie
Wednesday, July 9, 2014
Rainy day, rainy mood.
Hello Friends,
Can you believe that it is alreAdy Wednesday? Me Neither. So, I go on a bit of a rant about the cost of medical treatment, and how tends to rob you and family of finanCial freedom. My family is debt free, except for living expEnses, and it is very stressful to have thousands of dollaRs of out of pocket medical expenses. I alSo have a little video clip of the weather here in Knoxville today. You woUldn't believe the rain we have had off and on today. It was torrential for a while. But I love the rainforest type Climate that we enjoy here in Tennessee. Please Keep my daughter's dog Oscar in your thoughts and prayers. He is going through a bout of pancreatitiS. We do worry about our little fur babies! At the end of the video Sadie fans will enjoy a brief appearance.
Thanks for stopping by.
Leslie
Can you believe that it is alreAdy Wednesday? Me Neither. So, I go on a bit of a rant about the cost of medical treatment, and how tends to rob you and family of finanCial freedom. My family is debt free, except for living expEnses, and it is very stressful to have thousands of dollaRs of out of pocket medical expenses. I alSo have a little video clip of the weather here in Knoxville today. You woUldn't believe the rain we have had off and on today. It was torrential for a while. But I love the rainforest type Climate that we enjoy here in Tennessee. Please Keep my daughter's dog Oscar in your thoughts and prayers. He is going through a bout of pancreatitiS. We do worry about our little fur babies! At the end of the video Sadie fans will enjoy a brief appearance.
Thanks for stopping by.
Leslie
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