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.
Sunday, March 18, 2012
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?
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