You know I love publicity on this nasty disease. Especially the "good kind." The kind about the risks and how melanoma is "real cancer." So I was thrilled tonight when surfing the web for news, I found a front page article on MSN.com about the increase of melanoma in young women. I know all my melanoma warriors out there have probably seen it, but it's the fact that some people who think the tan is still worth it might see this article. That's what makes me smile. A life might be saved because of this article and its national prominence today. That person may never know who they are and that is wonderful because I'd never wish this disease on my worst enemy.
Here's the article link:
http://dailynightly.msnbc.msn.com/_news/2012/04/02/10987650-for-young-women-melanoma-rates-on-the-rise
Monday, April 2, 2012
Sunday, March 18, 2012
Genetic testing
I wrote way back when that I didn't need genetic testing for the cancer gene, I already knew I had it. I've started to question that initial wisdom and presumption. I started to rethink this decision after finding even more research associating one cancer with a much higher risk of another. Of course, melanoma is oh so kind to appear in that research far more often than I'd like.
The last few weeks, I've wondered if I should get tested. The sensible side says yes and the other sensible side says, "What would you do with that information? Would it make a difference?" There's where this debate comes down to it for me. I know I am at a much higher risk for cancer. Duh! But I knew that before getting my initial diagnosis. I just wonder if knowing I'm at a higher risk of X kind of cancer would reduce my paranoia about the others and allow me to "relax" a little and be vigilant where most needed. Or would it just ramp up my paranoia because a risk isn't a guarantee or insurance. It also is no reassurance that I still won't stress myself out.
There's the basics of the argument I'm having in my head. Yes, I admit to that little voice that takes over most days still. I guess it all boils down to will the testing help me? And I don't have an answer yet. Please feel free to share your thoughts, it might help me figure out mine.
The last few weeks, I've wondered if I should get tested. The sensible side says yes and the other sensible side says, "What would you do with that information? Would it make a difference?" There's where this debate comes down to it for me. I know I am at a much higher risk for cancer. Duh! But I knew that before getting my initial diagnosis. I just wonder if knowing I'm at a higher risk of X kind of cancer would reduce my paranoia about the others and allow me to "relax" a little and be vigilant where most needed. Or would it just ramp up my paranoia because a risk isn't a guarantee or insurance. It also is no reassurance that I still won't stress myself out.
There's the basics of the argument I'm having in my head. Yes, I admit to that little voice that takes over most days still. I guess it all boils down to will the testing help me? And I don't have an answer yet. Please feel free to share your thoughts, it might help me figure out mine.
Monday, March 12, 2012
Next appointment
I'm simply here to vent. This will not be a deep, well thought out post. Or at least I don't think so. I just need to process my thoughts.
My next appointment is in 1 month. It's 3 months from the last one. It'll mean another biopsy or three. It's been that way for many months now but yet, it still brings out my sense of worry and paranoia. I keep waiting for it to not bother me, but it still does. And after reading many, many blogs I feel like I'm not alone.
So, what now you ask? My worry comes from what spot to biopsy this time. It should seem simple right? If a mole or spot fits those "A,B,C,D's" it is suspicious..... but that's just it. I have so many moles that do it's hard to decide which one is the worst. And it doesn't help that half of my biopsies have come back benign and half dysplastic (as in starting to change but not the monster yet).
I've talked before about my 5 minute rule. When I stand at the mirror and let my worries take over when examining my skin, I give myself 5 minutes to examine and then I walk away. I won't come back for an hour. Silly as it is, it works............ usually. These last few days I've been coming back after that hour. And looking at it again. And wondering what spot might kill me.
That's what it boils down to. An uneducated guess about which mole contains the monster. And which moles do not. Even my doctor does not have the answer and she's no more comfortable with that than me. How do I find peace with my skin being biopsied when there's no more than an uneducated guess to go on? This is where I wish research and technology were more advanced. I wish a skin-type MRI could show the monster. Or maybe a special dye would turn the monster spots neon green (or pink or purple or whatever). Unfortunately, it doesn't exist yet. I'm an optimist and believe it's coming. I just don't know if I have time to wait for it.
So, I worry. I stand in front of the mirror for way too long. I worry if the monster is hiding in my skin waiting for me to relax. I can't let the paranoia take over but I can't ignore it either. It's making me crazy and keeping me alive. It's a weird life I live now.
My next appointment is in 1 month. It's 3 months from the last one. It'll mean another biopsy or three. It's been that way for many months now but yet, it still brings out my sense of worry and paranoia. I keep waiting for it to not bother me, but it still does. And after reading many, many blogs I feel like I'm not alone.
So, what now you ask? My worry comes from what spot to biopsy this time. It should seem simple right? If a mole or spot fits those "A,B,C,D's" it is suspicious..... but that's just it. I have so many moles that do it's hard to decide which one is the worst. And it doesn't help that half of my biopsies have come back benign and half dysplastic (as in starting to change but not the monster yet).
I've talked before about my 5 minute rule. When I stand at the mirror and let my worries take over when examining my skin, I give myself 5 minutes to examine and then I walk away. I won't come back for an hour. Silly as it is, it works............ usually. These last few days I've been coming back after that hour. And looking at it again. And wondering what spot might kill me.
That's what it boils down to. An uneducated guess about which mole contains the monster. And which moles do not. Even my doctor does not have the answer and she's no more comfortable with that than me. How do I find peace with my skin being biopsied when there's no more than an uneducated guess to go on? This is where I wish research and technology were more advanced. I wish a skin-type MRI could show the monster. Or maybe a special dye would turn the monster spots neon green (or pink or purple or whatever). Unfortunately, it doesn't exist yet. I'm an optimist and believe it's coming. I just don't know if I have time to wait for it.
So, I worry. I stand in front of the mirror for way too long. I worry if the monster is hiding in my skin waiting for me to relax. I can't let the paranoia take over but I can't ignore it either. It's making me crazy and keeping me alive. It's a weird life I live now.
Sunday, March 4, 2012
I lie to my children
Ok, there's the dirty truth. I'm sure this will create some "interesting" responses. Hear me out first, before you judge.
I think I should preface my children before I explain. And keep in mind, I love my children at a level that defies explanation. My oldest is drama boy. He will tell you that too. He's me, in boy form - next generation. He can take anything and over-react to it and make it bigger than it is. (Yep, me cloned!) At nine, he can throw a temper tantrum to make both a 2 year old and 13 year old proud at the same time. My youngest is an emotional, old soul. He worries about everything (me too) and is highly emotional. He walks into a room and immediately absorbs the emotions of the people in it. I will never take him to a funeral. Or his brother. Period. So, now you know more about my beautiful boys.
When I was diagnosed with melanoma, the boys knew something was up. My oldest because I couldn't get him what he wanted. My youngest because his mom was hurting physically and emotionally. They both saw my 4" wound the day after it was installed because my husband picked me up off the floor when I thought I'd torn out some stitches and was bleeding. (I didn't but it wasn't pretty. The pain had literally dropped me to my feet.) They asked me why I had that "ouchie."
Every melanoma parent/patient must decide what to tell those around them. My husband and I decided to be absolutely honest with everyone but our children. (Take a deep breath, I'm not done) We decided that we had nothing to hide, be ashamed of, or avoid from people around us...except our children. The two of us talked about how or what to tell our boys. After a relatively short discussion, we decided that telling them that mom had cancer was absolutely not the way to go. This decision was easy for both of them, but for different reasons. We decided to tell them that mommy had moles that could make her very sick and they had to be removed but we've never used the word melanoma or cancer to them or even with them in hearing distance. Every time I get a new set of stitches, or two, we explain that the doctor took the off to make sure I don't "get sick."
I did wonder that first week if we had made the right decision. Every parent questions their decisions. Big or small. I believe in Karma, God-winks, whatever you call them. And about a week after our decision, I received one. My youngest son, the empathetic one, was worried about me because I was still struggling to use my left arm. I remember telling him, "Mama's ok, she's getting better but it takes time." His response was, "I'm worried that you might die Mama. It scares me." Thank God my husband was in the house and overheard that comment. I immediately lost it. I had to walk away. I was sobbing. Keep in mind that I still did not know how invasive the disease was. I was worried about death and leaving my children without a mother. Was I facing chemo/radiation? More surgeries? Hospitalization? My husband scooped up my youngest and reassured him (somewhat falsely) that Mama was just fine and would be better soon. We did not know that then. Yes, we flat out lied to the boys. And I don't regret it for a second. Even retelling that leaves me in tears, 9 months later.
Time provides an amazing perspective on our decisions. I do not regret for a second not telling the boys about my disease. We still have not used the c-word in the boy's hearing range. I have used "melanoma" around them but very sparingly. Our friends/family do not use these terms either in respect for our wishes. We frequently remind them of our our wishes about this. And I do not regret it for a second, for different reasons. I know that omitting the truth may be seen as different than telling a lie but I was raised in a house/family where those are the same thing. And that is what I am teaching my children.... but I am not leading by example......... in this case.
I do feel guilty some days. I wonder if I've made the right decision. Doesn't any parent? But when I lay down at night to go to bed, I'm perfectly ok with my (our) decision. My boys don't need to know I have cancer. And I'm ok with telling them a lie. In just this case. And only this circumstance. (For now!)
There will come a time, in the future, where I will tell my children about my disease. I spend many sleepless moments wondering when that time will come. Will it be measured in years or decades? Will it be measured in scars or levels of invasiveness? I really don't know. I keep reminding myself that I will know deep down, as a parent, when the time is right. And that I will always question it, because that is what parents do. Right?
I think I should preface my children before I explain. And keep in mind, I love my children at a level that defies explanation. My oldest is drama boy. He will tell you that too. He's me, in boy form - next generation. He can take anything and over-react to it and make it bigger than it is. (Yep, me cloned!) At nine, he can throw a temper tantrum to make both a 2 year old and 13 year old proud at the same time. My youngest is an emotional, old soul. He worries about everything (me too) and is highly emotional. He walks into a room and immediately absorbs the emotions of the people in it. I will never take him to a funeral. Or his brother. Period. So, now you know more about my beautiful boys.
When I was diagnosed with melanoma, the boys knew something was up. My oldest because I couldn't get him what he wanted. My youngest because his mom was hurting physically and emotionally. They both saw my 4" wound the day after it was installed because my husband picked me up off the floor when I thought I'd torn out some stitches and was bleeding. (I didn't but it wasn't pretty. The pain had literally dropped me to my feet.) They asked me why I had that "ouchie."
Every melanoma parent/patient must decide what to tell those around them. My husband and I decided to be absolutely honest with everyone but our children. (Take a deep breath, I'm not done) We decided that we had nothing to hide, be ashamed of, or avoid from people around us...except our children. The two of us talked about how or what to tell our boys. After a relatively short discussion, we decided that telling them that mom had cancer was absolutely not the way to go. This decision was easy for both of them, but for different reasons. We decided to tell them that mommy had moles that could make her very sick and they had to be removed but we've never used the word melanoma or cancer to them or even with them in hearing distance. Every time I get a new set of stitches, or two, we explain that the doctor took the off to make sure I don't "get sick."
I did wonder that first week if we had made the right decision. Every parent questions their decisions. Big or small. I believe in Karma, God-winks, whatever you call them. And about a week after our decision, I received one. My youngest son, the empathetic one, was worried about me because I was still struggling to use my left arm. I remember telling him, "Mama's ok, she's getting better but it takes time." His response was, "I'm worried that you might die Mama. It scares me." Thank God my husband was in the house and overheard that comment. I immediately lost it. I had to walk away. I was sobbing. Keep in mind that I still did not know how invasive the disease was. I was worried about death and leaving my children without a mother. Was I facing chemo/radiation? More surgeries? Hospitalization? My husband scooped up my youngest and reassured him (somewhat falsely) that Mama was just fine and would be better soon. We did not know that then. Yes, we flat out lied to the boys. And I don't regret it for a second. Even retelling that leaves me in tears, 9 months later.
Time provides an amazing perspective on our decisions. I do not regret for a second not telling the boys about my disease. We still have not used the c-word in the boy's hearing range. I have used "melanoma" around them but very sparingly. Our friends/family do not use these terms either in respect for our wishes. We frequently remind them of our our wishes about this. And I do not regret it for a second, for different reasons. I know that omitting the truth may be seen as different than telling a lie but I was raised in a house/family where those are the same thing. And that is what I am teaching my children.... but I am not leading by example......... in this case.
I do feel guilty some days. I wonder if I've made the right decision. Doesn't any parent? But when I lay down at night to go to bed, I'm perfectly ok with my (our) decision. My boys don't need to know I have cancer. And I'm ok with telling them a lie. In just this case. And only this circumstance. (For now!)
There will come a time, in the future, where I will tell my children about my disease. I spend many sleepless moments wondering when that time will come. Will it be measured in years or decades? Will it be measured in scars or levels of invasiveness? I really don't know. I keep reminding myself that I will know deep down, as a parent, when the time is right. And that I will always question it, because that is what parents do. Right?
Sunday, February 12, 2012
Changing another environmental factor
I know I haven't updated in a while. It was a conscious effort to try not to stress about my disease, especially since so many melanoma warriors seem to have lost their battles lately. Playing ostrich didn't work, I'm back.
I've mentioned before all the research I did after my diagnosis. One of the re-occuring threads in recent research was to control "environmental factors" aka food, sun, toxins, etc. It's an interesting idea and one that's had me intrigued since June. Unfortunately, not enough to make the dietary change I knew deep down that I needed to. Well, that time has come.
I don't know what was the final straw for me. It might have been seeing the movie "Forks over Knives" or maybe "Sick, Fat and Nearly Dead" or maybe "The Engine 2 Diet." Maybe it was doing additional research based on The China Study or Dr. Esselstyn's research. I don't know but something finally just clicked. And no, it wasn't the extra weight I've been carrying around for too many years. (It should have been).
So, I'm on a new path for my eating. I would love to be a completely "Whole Food, Plant Based" eater but I won't be. I will admit I love meat, cheese, and dairy. So I will have them in limited amounts like my upcoming Valentine's date with the hubster. It will just be very limited because they are not good for me apparently. Kind of like the sun. That thought came to me at 2:31am the other night and I just laid there and smiled.
So, in the last few weeks, I've slowly weaned myself off of large amounts of meat. I did a modified juice re-boot of 10 days (tough but worth it). I went shopping again today and have a menu plan for this week. I've found I love cold, cooked beans and quinoa with lime juice. I've always loved salads so I'm experimenting with the dressings. Homemade hummus is so much better than the store brand. My favorite so far is jalapeno, spinach, and lime. Almond milk reminds me of how my milk tasted as a kid after I'd dunked my cookies in it. I've been making my own so I don't know how it compares to the commercial stuff but it satisfies both my milk and cookie cravings.
I know the transition will not be easy but that's ok. If it keeps me from having to fight this melanoma battle for the rest of my life, then I'm all in. I do not think this way of eating will make me cancer free. I'm hopeful it will help my body fight the disease when it does rear its ugly head again and I hope that will now be many years from now.
I don't suggest this way of eating for anyone. Even my husband. You have to decide what is right for you. I decided this way is right for me right now. And I'm going to give it every ounce of my melanoma warrior fight.
PS: The hummus, mushroom, green onion, spinach, and whole wheat bread sandwich I made for lunch was seriously tasty. (Engine 2 cookbook) I didn't even miss the lunch meat or cheese. I never thought I'd utter those words.
And the arugula, kale, spinach, celery, pepper, ginger, pineapple, applesauce, orange, lime, cucumber, pomegranate seed, and grape juice I had for breakfast was super tasty.
I've mentioned before all the research I did after my diagnosis. One of the re-occuring threads in recent research was to control "environmental factors" aka food, sun, toxins, etc. It's an interesting idea and one that's had me intrigued since June. Unfortunately, not enough to make the dietary change I knew deep down that I needed to. Well, that time has come.
I don't know what was the final straw for me. It might have been seeing the movie "Forks over Knives" or maybe "Sick, Fat and Nearly Dead" or maybe "The Engine 2 Diet." Maybe it was doing additional research based on The China Study or Dr. Esselstyn's research. I don't know but something finally just clicked. And no, it wasn't the extra weight I've been carrying around for too many years. (It should have been).
So, I'm on a new path for my eating. I would love to be a completely "Whole Food, Plant Based" eater but I won't be. I will admit I love meat, cheese, and dairy. So I will have them in limited amounts like my upcoming Valentine's date with the hubster. It will just be very limited because they are not good for me apparently. Kind of like the sun. That thought came to me at 2:31am the other night and I just laid there and smiled.
So, in the last few weeks, I've slowly weaned myself off of large amounts of meat. I did a modified juice re-boot of 10 days (tough but worth it). I went shopping again today and have a menu plan for this week. I've found I love cold, cooked beans and quinoa with lime juice. I've always loved salads so I'm experimenting with the dressings. Homemade hummus is so much better than the store brand. My favorite so far is jalapeno, spinach, and lime. Almond milk reminds me of how my milk tasted as a kid after I'd dunked my cookies in it. I've been making my own so I don't know how it compares to the commercial stuff but it satisfies both my milk and cookie cravings.
I know the transition will not be easy but that's ok. If it keeps me from having to fight this melanoma battle for the rest of my life, then I'm all in. I do not think this way of eating will make me cancer free. I'm hopeful it will help my body fight the disease when it does rear its ugly head again and I hope that will now be many years from now.
I don't suggest this way of eating for anyone. Even my husband. You have to decide what is right for you. I decided this way is right for me right now. And I'm going to give it every ounce of my melanoma warrior fight.
PS: The hummus, mushroom, green onion, spinach, and whole wheat bread sandwich I made for lunch was seriously tasty. (Engine 2 cookbook) I didn't even miss the lunch meat or cheese. I never thought I'd utter those words.
And the arugula, kale, spinach, celery, pepper, ginger, pineapple, applesauce, orange, lime, cucumber, pomegranate seed, and grape juice I had for breakfast was super tasty.
Sunday, January 15, 2012
Trying to explain to well-meaning people
I can't believe I haven't posted yet in 2012. Time sure is flying by right now.
I had my most recent set of biopsies in December with the stitches out on January 3rd. The news was as mixed as all the previous ones. 50% benign and 50% dysplastic. These "changed" ones were intermediate grade which does nothing to alleviate my concerns. Le sigh! Another round of biopsies already scheduled in April. (Melanoma clinic in February)
So, my point in mentioning this was my difficulty in explaining my disease to well-meaning people. I covered the wound on my face for the first week to keep from freaking people out. After that, it was healed enough that I didn't any more. You could occasionally see the stitches and that brought the questions. I know people mean well, and I totally understand and appreciate their concern. I just get stuck about how to answer their questions.
If you are a melanoma warrior, you know them well. I explain I have melanoma and they ask,
* That's JUST skin cancer right? (There's no JUST about it)
* Why are you doing biopsies instead of radiation or chemo to treat it? (Not my course of treatment now)
* Are you in remission? ("There's no remission" brings...) I thought all cancers have remission?
* Did you tan a lot as a kid? (Insert condescending tone here.....) Of course I did, we all did. We didn't know then what I know now and many still don't believe.
And so on. I don't want to not answer questions, I guess I just haven't found the finesse to do it well. I want people to understand how deadly this is and how they might avoid it, all without scaring them. On my tough days, I remind myself that 3 people I know have had suspicious moles checked out and all were benign. And every one of them thanked me for inspiring them to go.
I guess I'm just venting more than anything right now because this disease doesn't have any easy answers. For me. For my family. And for people who mean well and want to learn.
I had my most recent set of biopsies in December with the stitches out on January 3rd. The news was as mixed as all the previous ones. 50% benign and 50% dysplastic. These "changed" ones were intermediate grade which does nothing to alleviate my concerns. Le sigh! Another round of biopsies already scheduled in April. (Melanoma clinic in February)
So, my point in mentioning this was my difficulty in explaining my disease to well-meaning people. I covered the wound on my face for the first week to keep from freaking people out. After that, it was healed enough that I didn't any more. You could occasionally see the stitches and that brought the questions. I know people mean well, and I totally understand and appreciate their concern. I just get stuck about how to answer their questions.
If you are a melanoma warrior, you know them well. I explain I have melanoma and they ask,
* That's JUST skin cancer right? (There's no JUST about it)
* Why are you doing biopsies instead of radiation or chemo to treat it? (Not my course of treatment now)
* Are you in remission? ("There's no remission" brings...) I thought all cancers have remission?
* Did you tan a lot as a kid? (Insert condescending tone here.....) Of course I did, we all did. We didn't know then what I know now and many still don't believe.
And so on. I don't want to not answer questions, I guess I just haven't found the finesse to do it well. I want people to understand how deadly this is and how they might avoid it, all without scaring them. On my tough days, I remind myself that 3 people I know have had suspicious moles checked out and all were benign. And every one of them thanked me for inspiring them to go.
I guess I'm just venting more than anything right now because this disease doesn't have any easy answers. For me. For my family. And for people who mean well and want to learn.
Subscribe to:
Posts (Atom)