I'm at the end of my rope with Little Guy. The triggers he experiences are daily. Being told no, being hungry, being tired, having people come and go from the house (because we do things outside our home), are all natural things that happen on a daily basis. And, in response to his triggers, he gets aggressive. He yells, hits, scratches, throws things, etc. All of those things are triggers from my past and I respond with defensiveness and pushing away and the cycle continues.
There are times I am able to therapeutically parent him, which means pulling him in no matter what. But, those times are becoming fewer and further between. The hurt is just becoming too great. The reminders of the past too much, too often. And I can't keep walking into it anymore.
I am not parenting this child well. I am not able to rise above his personal assaults anymore. I can't not take them personally.
I am beyond discouraged and truly don't know what to do anymore. I feel like the strength is all gone.
Sunday, July 12, 2015
One Year Home
the time since we arrived to the airport on July 11, 2014 until now has not been at all what i expected.
i did not expect Little Guy to not talk to us for the first three weeks. i didn’t expect the joy in his eyes at being told no, the lack of empathy when he hurt someone, the raw and primitive desire he had to be in control of EVERYTHING in his environment. i didn’t expect the hyper vigilance, the panic, the fear. i didn’t expect him to reject us and try to hurt us and push us away. i didn't expect RAD. i didn’t expect my own history of pain to be brought up and relived through his pain. i didn’t expect to see my own hyper vigilance.
i didn’t expect to lose 4 of the dearest friendships i thought i’d ever have.
i didn’t expect to be diagnosed with cancer 3 weeks after we got home.
i didn’t expect to leave our church home, that we have been a part of and figured we’d stay forever at, since moving here.
and i didn’t expect the anger toward all the factors that caused all those things. my sin. other’s sin. stupid choices. the fact that we are just fallen.
i didn’t expect these things either:
our marriage to grow.
friends, one a continent away, another 15 minutes away, who would drop everything when I was truly at the end of my rope. the one who was able to sit with me until it was safe not to.
new friends that can deal with and hear all the “hard” i can spew out. and who spew it back. people who would reach out in ways we didn’t expect - dinners out, taking the kids out, phone calls, texts, messages, meals, countless prayers.
to be welcomed into a group of adoptive mommas who would know in advance how stinking hard this would be and be there for every comment, every fear, if only virtually.
friends, who i have either never met in person or have spent very little time with, to be able to be there, truly, when life was falling apart. and somehow, love well, even from afar.
to grow more in love and appreciation of the children we had before Little Guy was here.
to need to walk in humility to our children’s teachers to ask them to keep an eye out to make sure our kiddos were okay, along with us, because we were so overwhelmed. and to be understood and treated with grace and compassion in return.
very little, if anything, is the same as it was a year ago at this time. it brings an unsettling realization that life goes on no matter what is happening in my life, but it also brings peace that life does indeed keep going, even when you’re sure it can’t.
what i’ve learned....
that relationships are often cyclical. i hate that, but it is good to know that things can cycle back. just because they get off track doesn’t mean they’ll stay that way.
that it is okay to admit your own weaknesses. to be vulnerable. i have never cried like i did that one weekend in february when i was ready to end it all. and i will never again judge the emotions of anyone who considers suicide. because when you’re at the point of ending it all, there is no more judgement, there is no selfishness. it only makes sense. it actually feels like the right thing to do. and you truly can’t think of anyone to call. i was able to reach out to 2 women and they treated me with love and acceptance, despite all the things i was thinking, all the things i believed, all of my questions.
i have never been as vulnerable with people as i have in the past 8 months. admitting how terrible life felt, sobbing on the phone, even. you know what their response has been, in almost every circumstance? acceptance. and vulnerability back. when life feels like it is ending you just can’t put up a front anymore and it really seems to lower everyone else’s. i mean, no one, not a single person, could come to our house or look at me, and think everything was all together. so, they didn’t act like they had it all together, either. it was, shockingly, the most freeing thing. and i expected the exact opposite.
what i need to learn....
compassion. hurts die hard in my heart. i need to find a softened heart.
self worth. this is a blazing sign in front of me almost all the time. i am so insecure. and it isn’t doing me any favors.
who God really is. i’ve created this entity in my mind that God can not be if the Bible is true at all. i need to learn who He is and worship that instead of what I have made Him out to be.
this isn’t about to be wrapped up with a pretty little bow. it is a “to be continued” story. i don’t know what is next, how long it will be until our next rut (no, i wouldn’t say we are out of the one we found ourselves in in july), or what i’m going to face that is, again, unexpected. i am working on not being afraid of what is next. but, somehow i’m grateful for all this and i didn’t expect that, either.
i did not expect Little Guy to not talk to us for the first three weeks. i didn’t expect the joy in his eyes at being told no, the lack of empathy when he hurt someone, the raw and primitive desire he had to be in control of EVERYTHING in his environment. i didn’t expect the hyper vigilance, the panic, the fear. i didn’t expect him to reject us and try to hurt us and push us away. i didn't expect RAD. i didn’t expect my own history of pain to be brought up and relived through his pain. i didn’t expect to see my own hyper vigilance.
i didn’t expect to lose 4 of the dearest friendships i thought i’d ever have.
i didn’t expect to be diagnosed with cancer 3 weeks after we got home.
i didn’t expect to leave our church home, that we have been a part of and figured we’d stay forever at, since moving here.
and i didn’t expect the anger toward all the factors that caused all those things. my sin. other’s sin. stupid choices. the fact that we are just fallen.
i didn’t expect these things either:
our marriage to grow.
friends, one a continent away, another 15 minutes away, who would drop everything when I was truly at the end of my rope. the one who was able to sit with me until it was safe not to.
new friends that can deal with and hear all the “hard” i can spew out. and who spew it back. people who would reach out in ways we didn’t expect - dinners out, taking the kids out, phone calls, texts, messages, meals, countless prayers.
to be welcomed into a group of adoptive mommas who would know in advance how stinking hard this would be and be there for every comment, every fear, if only virtually.
friends, who i have either never met in person or have spent very little time with, to be able to be there, truly, when life was falling apart. and somehow, love well, even from afar.
to grow more in love and appreciation of the children we had before Little Guy was here.
to need to walk in humility to our children’s teachers to ask them to keep an eye out to make sure our kiddos were okay, along with us, because we were so overwhelmed. and to be understood and treated with grace and compassion in return.
very little, if anything, is the same as it was a year ago at this time. it brings an unsettling realization that life goes on no matter what is happening in my life, but it also brings peace that life does indeed keep going, even when you’re sure it can’t.
what i’ve learned....
that relationships are often cyclical. i hate that, but it is good to know that things can cycle back. just because they get off track doesn’t mean they’ll stay that way.
that it is okay to admit your own weaknesses. to be vulnerable. i have never cried like i did that one weekend in february when i was ready to end it all. and i will never again judge the emotions of anyone who considers suicide. because when you’re at the point of ending it all, there is no more judgement, there is no selfishness. it only makes sense. it actually feels like the right thing to do. and you truly can’t think of anyone to call. i was able to reach out to 2 women and they treated me with love and acceptance, despite all the things i was thinking, all the things i believed, all of my questions.
i have never been as vulnerable with people as i have in the past 8 months. admitting how terrible life felt, sobbing on the phone, even. you know what their response has been, in almost every circumstance? acceptance. and vulnerability back. when life feels like it is ending you just can’t put up a front anymore and it really seems to lower everyone else’s. i mean, no one, not a single person, could come to our house or look at me, and think everything was all together. so, they didn’t act like they had it all together, either. it was, shockingly, the most freeing thing. and i expected the exact opposite.
what i need to learn....
compassion. hurts die hard in my heart. i need to find a softened heart.
self worth. this is a blazing sign in front of me almost all the time. i am so insecure. and it isn’t doing me any favors.
who God really is. i’ve created this entity in my mind that God can not be if the Bible is true at all. i need to learn who He is and worship that instead of what I have made Him out to be.
this isn’t about to be wrapped up with a pretty little bow. it is a “to be continued” story. i don’t know what is next, how long it will be until our next rut (no, i wouldn’t say we are out of the one we found ourselves in in july), or what i’m going to face that is, again, unexpected. i am working on not being afraid of what is next. but, somehow i’m grateful for all this and i didn’t expect that, either.
Wednesday, April 15, 2015
It has been a long time since I have posted about how we are and I
just wanted to follow up because I exploded my Facebook news feed for
cries of help a couple of months ago.
We reached about our 4th breaking point in February. I have never felt that low in my life. The hopelessness of the thoughts of dealing with a violent child for the rest of our lives in addition to the loneliness we were experiencing was overwhelming. But, soon after, new help and hope started appearing. And it has made a huge difference.
We reached about our 4th breaking point in February. I have never felt that low in my life. The hopelessness of the thoughts of dealing with a violent child for the rest of our lives in addition to the loneliness we were experiencing was overwhelming. But, soon after, new help and hope started appearing. And it has made a huge difference.
Little Guy has good days. He is not nearly as aggressive as he was. This
past week he spit and hit and kicked, but it had been weeks since he had
done that last. He is starting to learn English and speak more, which
is so helpful. Last night he went off the deep end and I was feeling
helpless to know what to do. In times like that I pray for wisdom (if I
remember to.) I prayed and asked for help to know what to do and hes
said, "hungry!" That was his "trigger". He was hungry and was
flipping out because of that.
His insecurities are becoming easier to pick up on. We are noticing more when they are happening, how they are happening. Having that education helps. We had no clue about any of that before he came home. He can read people like you wouldn't believe. He wants to be the center of attention. He gets really hyperactive. But, we understand now a bit more about what is behind those things. They are not normal 3 year old things. I don't know how to explain it, except to say, there is a feeling where we know it is different - that it is stemming from some insecurity or fear he is experiencing. If we can figure it out and address that fear - and he can bring his brain to a point where he can listen - he calms down. He changes somehow. It gets exhausting thinking through it all sometimes. He has now been with us for 9 months and he still doesn't trust that he's not going to be neglected or abandoned or hungry without resolution. And that gets tough for all of us because of the way those fears manifest themselves.
I am finding myself at a place where I am starting to feel more normal again. Starting to think about reaching out again. Sometimes that lasts for a bit and then has to stop, for whatever reason. I was telling Justin the other night that there just hasn't been room for superficial or light or casual relationships so much in the past 9 months. There has simply been no "give" for relationships that couldn't be "muddy", so to speak and that is okay, I hope. I think life/God gives us those seasons for a purpose.
So, we are in a much better place than we were a couple of months ago. Thank you all, so much, for standing with us in this. We are so grateful for each and every one of you.
His insecurities are becoming easier to pick up on. We are noticing more when they are happening, how they are happening. Having that education helps. We had no clue about any of that before he came home. He can read people like you wouldn't believe. He wants to be the center of attention. He gets really hyperactive. But, we understand now a bit more about what is behind those things. They are not normal 3 year old things. I don't know how to explain it, except to say, there is a feeling where we know it is different - that it is stemming from some insecurity or fear he is experiencing. If we can figure it out and address that fear - and he can bring his brain to a point where he can listen - he calms down. He changes somehow. It gets exhausting thinking through it all sometimes. He has now been with us for 9 months and he still doesn't trust that he's not going to be neglected or abandoned or hungry without resolution. And that gets tough for all of us because of the way those fears manifest themselves.
I am finding myself at a place where I am starting to feel more normal again. Starting to think about reaching out again. Sometimes that lasts for a bit and then has to stop, for whatever reason. I was telling Justin the other night that there just hasn't been room for superficial or light or casual relationships so much in the past 9 months. There has simply been no "give" for relationships that couldn't be "muddy", so to speak and that is okay, I hope. I think life/God gives us those seasons for a purpose.
So, we are in a much better place than we were a couple of months ago. Thank you all, so much, for standing with us in this. We are so grateful for each and every one of you.
Friday, January 16, 2015
Reactive Attachment Disorder Diagnosis
Yesterday, Little Guy was diagnosed with Reactive Attachment Disorder
(RAD). This is a diagnosis in which the child will seem fine, charming
even, to outsiders, but in the home, it is very different. There is a
lack of conscience, an inability to attach to the family who is trying
to attach to him because of the MANY times he has been abandoned in life
in his 3 short years. So, he basically has learned that he needs to be
protective of himself, times a million, to survive. And who he needs
to protect himself from is us. Instead of attaching, he pushes and
resists. To do that, he spits, yells, hits, kicks and tries to hurt us.
When we met with the counselor yesterday, I told her this was my fault. I was having a hard time attaching to him. I was resisting him. She looked at me, in grace, and told me that it wasn't my fault. Hiss diagnosis was the fault of all of those who had abandoned him before us. That we had made progress with him. That we were doing a good job. She also told me that he is triggering my own trauma and abuse from my past and causing additional trauma to me at this point, with his actions.
With all of that, she encouraged me to go to a counselor to learn how to address how he is triggering me, that Little Guy and I should continue to go to counseling together on an outpatient basis and that Little Guy, Husband and I should do 2 weeks of intensive family therapy - 3 hour days, for 2 straight weeks (with a 2 day break in between the 12 days).
When we heard all of that, when it began to sink in just how long this road might be - she said he may need help his whole life - and we were already feeling so alone (me, in particular), I felt so desperate. I don't think I can do this without support. I know I have Christ. But, I need people, too. And, it just keeps reminding me of how disconnected we all are, despite all of this "connection media". I just don't think we are alone in how we feel.
I have forgotten when I shouldn't have. I have not paid much attention to things that were crazy hard because I had no clue how crazy hard it was. This information is a cry out to you, our supporters and friends, and a cry for those who are in all of our lives who feel alone in their waters, too.
Please know that sharing all of this with you is very difficult and vulnerable for me.
Thank you for loving us, relating to us. I'm so grateful.
When we met with the counselor yesterday, I told her this was my fault. I was having a hard time attaching to him. I was resisting him. She looked at me, in grace, and told me that it wasn't my fault. Hiss diagnosis was the fault of all of those who had abandoned him before us. That we had made progress with him. That we were doing a good job. She also told me that he is triggering my own trauma and abuse from my past and causing additional trauma to me at this point, with his actions.
With all of that, she encouraged me to go to a counselor to learn how to address how he is triggering me, that Little Guy and I should continue to go to counseling together on an outpatient basis and that Little Guy, Husband and I should do 2 weeks of intensive family therapy - 3 hour days, for 2 straight weeks (with a 2 day break in between the 12 days).
When we heard all of that, when it began to sink in just how long this road might be - she said he may need help his whole life - and we were already feeling so alone (me, in particular), I felt so desperate. I don't think I can do this without support. I know I have Christ. But, I need people, too. And, it just keeps reminding me of how disconnected we all are, despite all of this "connection media". I just don't think we are alone in how we feel.
I have forgotten when I shouldn't have. I have not paid much attention to things that were crazy hard because I had no clue how crazy hard it was. This information is a cry out to you, our supporters and friends, and a cry for those who are in all of our lives who feel alone in their waters, too.
Please know that sharing all of this with you is very difficult and vulnerable for me.
Thank you for loving us, relating to us. I'm so grateful.
Sunday, September 14, 2014
2 Months Home
I write this post after taking a long deep breath. Little Guy is finally asleep.
We have been in the fray this week, for sure. I don't know what is going on in the mind of Little Guy, but it has been rough. Biting, spitting, scratching, pulling hair, kicking, hitting..... the whole gammit. And if one attack doesn't effect whoever he is angry with, he looks for another one. I can't possibly fathom the pain or fear he is experiencing. It is scary just to watch.
I was not expecting this.
A friend of mine read about a million books before her children came home from Haiti. I think I read 2, one of which was a book on Haiti's history. I'm the kind of person that worries about things needlessly, so I didn't read much because I didn't want to invite troubles to worry about. I thought it would be better to wait and see how things went and then do research specific to the problems we were facing.
And I'm at the point where I need to be doing that research, but now, when Little Guy goes to bed, my heart and mind are so worn that I don't want to touch another adoption related topic. I want to sleep, instead.
I am doing very poorly at juggling life. I miss our biological kids dearly. Because of an hour long temper today, my littlest ones had to get their own lunch, which isn't a really big deal. Independence is a good thing. But, I knew what I was missing with them. When Husband isn't home at night, they turn their own lights off and I check on them after Little Guy is finally asleep. DFC (work) is suffering greatly. I miss "normal".
I thought that once we started going places with Little Guy, after cocooning, I wouldn't feel so lonely. How is it possible that I feel lonelier, still? Somehow, even though I didn't imagine it would, it is getting tougher.
People see how cute he is. (He is cute!) And they know we waited forever. And they ask us how happy we are. I wonder if the zombie like expression I send back makes them wonder.
Sometimes I wonder what I was thinking almost 3 years ago when we decided to embark upon the process of adoption. Life is so very different than it was then. And I wonder if life would be that much worse for him if he was still at the orphanage, where he was with what was familiar, at least, without us.
And I think of those who say that we wanted this and he needs this. Well, we wanted to obey God and we felt like adoption is where God was calling us. We worked so hard to obey Him, through the unknown, waiting and corruption. And we were referred to our Little Guy, so we kept taking one step at a time. And now we are working hard to obey again, through the unknown, waiting and effects of corruption and institutionalized care.
I don't think it is possible for me to be more full of fear than he may be. More out of my comfort zone. More stretched. Trying to put myself in his shoes feels overwhelming to me, to try to meet his needs, when I haven't the faintest idea how it would be to experience the kind of pain and suffering he has seen the first 3 years of his life, the last 2 months of his life. He has to feel like he is in some kind of twilight zone. I'd fight that, too.
I really hope that this gets better for him, for us. If it wasn't for this blog post, (we're stage 2, if you couldn't guess) that explains where we are, almost to a T, I think I would feel hopeless all together. And if it wasn't for concrete proof, like this....
I'd feel very hopeless that this was good for any of us. It gives me some hope.
Why am I writing this and bumming you all out? :)
For the same reason I wrote the last post. I know I am not alone in these feelings. I know there are other adoptive or foster parents out there who are weary from the toll the daily rollercoaster of this process takes. It is so frightening to tell people, in real life, what things are really like. It feels impossible to explain. And none of the people I interact with in our small part of the world have adopted, which means it is crazy hard to explain. And it is scary to even try because you wonder what they are thinking about your commitment level or the kind of person you are, or worse, wonder about Little Guy.
But, out there somewhere, I think there are others who feel this way, who long for hope and to know they aren't alone.
Please keep praying for all of us - or other adoptive/foster families. We need them.
We have been in the fray this week, for sure. I don't know what is going on in the mind of Little Guy, but it has been rough. Biting, spitting, scratching, pulling hair, kicking, hitting..... the whole gammit. And if one attack doesn't effect whoever he is angry with, he looks for another one. I can't possibly fathom the pain or fear he is experiencing. It is scary just to watch.
I was not expecting this.
A friend of mine read about a million books before her children came home from Haiti. I think I read 2, one of which was a book on Haiti's history. I'm the kind of person that worries about things needlessly, so I didn't read much because I didn't want to invite troubles to worry about. I thought it would be better to wait and see how things went and then do research specific to the problems we were facing.
And I'm at the point where I need to be doing that research, but now, when Little Guy goes to bed, my heart and mind are so worn that I don't want to touch another adoption related topic. I want to sleep, instead.
I am doing very poorly at juggling life. I miss our biological kids dearly. Because of an hour long temper today, my littlest ones had to get their own lunch, which isn't a really big deal. Independence is a good thing. But, I knew what I was missing with them. When Husband isn't home at night, they turn their own lights off and I check on them after Little Guy is finally asleep. DFC (work) is suffering greatly. I miss "normal".
I thought that once we started going places with Little Guy, after cocooning, I wouldn't feel so lonely. How is it possible that I feel lonelier, still? Somehow, even though I didn't imagine it would, it is getting tougher.
People see how cute he is. (He is cute!) And they know we waited forever. And they ask us how happy we are. I wonder if the zombie like expression I send back makes them wonder.
Sometimes I wonder what I was thinking almost 3 years ago when we decided to embark upon the process of adoption. Life is so very different than it was then. And I wonder if life would be that much worse for him if he was still at the orphanage, where he was with what was familiar, at least, without us.
And I think of those who say that we wanted this and he needs this. Well, we wanted to obey God and we felt like adoption is where God was calling us. We worked so hard to obey Him, through the unknown, waiting and corruption. And we were referred to our Little Guy, so we kept taking one step at a time. And now we are working hard to obey again, through the unknown, waiting and effects of corruption and institutionalized care.
I don't think it is possible for me to be more full of fear than he may be. More out of my comfort zone. More stretched. Trying to put myself in his shoes feels overwhelming to me, to try to meet his needs, when I haven't the faintest idea how it would be to experience the kind of pain and suffering he has seen the first 3 years of his life, the last 2 months of his life. He has to feel like he is in some kind of twilight zone. I'd fight that, too.
I really hope that this gets better for him, for us. If it wasn't for this blog post, (we're stage 2, if you couldn't guess) that explains where we are, almost to a T, I think I would feel hopeless all together. And if it wasn't for concrete proof, like this....
 |
| Last picture we received from the orphanage |
 |
| Little Guy on Friday - 2 months home |
I'd feel very hopeless that this was good for any of us. It gives me some hope.
Why am I writing this and bumming you all out? :)
For the same reason I wrote the last post. I know I am not alone in these feelings. I know there are other adoptive or foster parents out there who are weary from the toll the daily rollercoaster of this process takes. It is so frightening to tell people, in real life, what things are really like. It feels impossible to explain. And none of the people I interact with in our small part of the world have adopted, which means it is crazy hard to explain. And it is scary to even try because you wonder what they are thinking about your commitment level or the kind of person you are, or worse, wonder about Little Guy.
But, out there somewhere, I think there are others who feel this way, who long for hope and to know they aren't alone.
Please keep praying for all of us - or other adoptive/foster families. We need them.
Saturday, August 30, 2014
Melanoma Is Not Just Skin Cancer
I'm writing this just so you know. For the next person you come across with melanoma.
I used to be you. When I heard that someone had skin cancer, my first and only thought was, "Psh. No big deal. Cut it off. It's gone. You're done."
About 95% of the people who find out I have now had melanoma and who know that I had a procedure to remove it, have said to me, "Well, I'm glad that's over."
What they don't realize is that it is not over. At all.
It happens so quickly. You see something that strikes you as odd. That's it, maybe. (I actually thought mine was the beginning of a pimple. It did NOT look like the normal melanoma pictures you see.) You wait. You finally go get it checked. The spot is biopsied.
But then, a week later you learn it is malignant melanoma and you start to talk about it and people say, "Oh, it's skin cancer. My ..... had skin cancer, but now they're fine."
But did they have melanoma? The kind of cancer that grows and spreads through your body like wildfire if given the chance and is fatal when not caught in time? Not basal cell, not squamous cell. Melanoma. It is different. It is crazy deadly. Quick fact:
For me, this skin cancer resulted in 2 biopsies, a wide excision procedure with a 3 inch scar to prove it, 2 full body dermatological exams and a scheduled visit to the oncologist for consultation. And that was just in the first 30 days.
When I went to the surgeon yesterday I learned that my 5-10 year survival rate is 90-95% for "this melanoma site". I asked her why she had to chop more of my arm off given that the last margins were clear. She informed me they do this procedure in case any of the cells from the invasive, Stage 1 melanoma broke off and traveled to any of the lymphatics. There is a 5-10% chance that they have done that and will metastasize to somewhere else in my body. And you're right, those aren't really high odds.
In my head, though, that was only for this one area. My chance of developing a second melanoma (or second primary site, as they call it) is high. I have all the indicators - about a million freckles, several of them bigger than 1/4" in diameter - and 8 of which they are watching after my last exam (3 on my face), absolutely more than 5 sun burns and probably 40 trips to the tanning bed before I was 18. (Tanning alone increases your risk by 75%!) Oh yeah, and that first melanoma site increases my odds some more.
So, for the next 5 years, I will be seen every 3 months by a dermatologist who will look over every inch of my body to see if there are new spots, to see if any of the regular ones have changed.
From now on, I will need to keep an eye out to see if any new spots are developing or changing.
I will be sporting a 3 inch long scar on my left arm from a 4mm spot.
And I will wait.
I feel like a ticking time bomb. I have no idea if something more is somewhere that I have missed. (The doctor missed the first one.) I have no idea if I do miss something, how fast it will grow or when it will be found and if it will be taken care of in time. You see, with melanoma, you are never officially in regression. You are considered "no evidence of disease." Not exactly final.
Hearing your 10 year old say, "Mom, since you got cancer......." does not feel good. And peering into your own arm, looking at your own real live muscle (right there!), is a huge reality check. This is not just skin cancer. Treatment hurts. It is scary.
All of this is not to communicate that I am without hope. I have hope no matter the direction this journey takes me. And my odds of this melanoma recurring are low. And I am grateful. It could have been so much worse.
This is to say that melanoma is real cancer. Please, if you know someone who has melanoma, no matter the stage, call them when they have procedures, text them, send them a note, ask when their next appointment is, maybe even write it down to remember to check on them. I'm not saying to remember everything. Just remember something. Very few people will treat it as significant. After my surgery yesterday I had 1 person check on me. And I felt very alone.
Treat melanoma like it is real. Simply because it is. The support you'll provide will be immeasurable.
I used to be you. When I heard that someone had skin cancer, my first and only thought was, "Psh. No big deal. Cut it off. It's gone. You're done."
About 95% of the people who find out I have now had melanoma and who know that I had a procedure to remove it, have said to me, "Well, I'm glad that's over."
What they don't realize is that it is not over. At all.
It happens so quickly. You see something that strikes you as odd. That's it, maybe. (I actually thought mine was the beginning of a pimple. It did NOT look like the normal melanoma pictures you see.) You wait. You finally go get it checked. The spot is biopsied.
But then, a week later you learn it is malignant melanoma and you start to talk about it and people say, "Oh, it's skin cancer. My ..... had skin cancer, but now they're fine."
But did they have melanoma? The kind of cancer that grows and spreads through your body like wildfire if given the chance and is fatal when not caught in time? Not basal cell, not squamous cell. Melanoma. It is different. It is crazy deadly. Quick fact:
- The vast majority of skin cancers are basal cell carcinomas and squamous cell carcinomas. While malignant, these are unlikely to spread to other parts of the body. They may be locally disfiguring if not treated early. A small but significant number of skin cancers are malignant melanomas. Malignant melanoma is a highly aggressive cancer that tends to spread to other parts of the body. These cancers may be fatal if not treated early. *
For me, this skin cancer resulted in 2 biopsies, a wide excision procedure with a 3 inch scar to prove it, 2 full body dermatological exams and a scheduled visit to the oncologist for consultation. And that was just in the first 30 days.
When I went to the surgeon yesterday I learned that my 5-10 year survival rate is 90-95% for "this melanoma site". I asked her why she had to chop more of my arm off given that the last margins were clear. She informed me they do this procedure in case any of the cells from the invasive, Stage 1 melanoma broke off and traveled to any of the lymphatics. There is a 5-10% chance that they have done that and will metastasize to somewhere else in my body. And you're right, those aren't really high odds.
In my head, though, that was only for this one area. My chance of developing a second melanoma (or second primary site, as they call it) is high. I have all the indicators - about a million freckles, several of them bigger than 1/4" in diameter - and 8 of which they are watching after my last exam (3 on my face), absolutely more than 5 sun burns and probably 40 trips to the tanning bed before I was 18. (Tanning alone increases your risk by 75%!) Oh yeah, and that first melanoma site increases my odds some more.
So, for the next 5 years, I will be seen every 3 months by a dermatologist who will look over every inch of my body to see if there are new spots, to see if any of the regular ones have changed.
From now on, I will need to keep an eye out to see if any new spots are developing or changing.
I will be sporting a 3 inch long scar on my left arm from a 4mm spot.
And I will wait.
I feel like a ticking time bomb. I have no idea if something more is somewhere that I have missed. (The doctor missed the first one.) I have no idea if I do miss something, how fast it will grow or when it will be found and if it will be taken care of in time. You see, with melanoma, you are never officially in regression. You are considered "no evidence of disease." Not exactly final.
Hearing your 10 year old say, "Mom, since you got cancer......." does not feel good. And peering into your own arm, looking at your own real live muscle (right there!), is a huge reality check. This is not just skin cancer. Treatment hurts. It is scary.
All of this is not to communicate that I am without hope. I have hope no matter the direction this journey takes me. And my odds of this melanoma recurring are low. And I am grateful. It could have been so much worse.
This is to say that melanoma is real cancer. Please, if you know someone who has melanoma, no matter the stage, call them when they have procedures, text them, send them a note, ask when their next appointment is, maybe even write it down to remember to check on them. I'm not saying to remember everything. Just remember something. Very few people will treat it as significant. After my surgery yesterday I had 1 person check on me. And I felt very alone.
Treat melanoma like it is real. Simply because it is. The support you'll provide will be immeasurable.
Tuesday, August 19, 2014
The Gift of Melanoma
2 weeks ago I was diagnosed with melanoma. I had noticed a spot on my arm, the size of a pencil eraser that was raised with an uneven border and a bit of a reddish coloring to it. For 2 months I did nothing. I eventually scheduled an appointment with my dermatologist and he did his exam, not seeing anything remarkable. Thankfully, he checked the spot I was concerned about and biopsied it. A week later, he called to tell me I had melanoma, and that was all the information he gave me, other than to say he was sending it on for a second opinion and would call me in another week to tell me more.
The only experience I really had of melanoma, per say, was a dear friend who was diagnosed with melanoma and died 3 weeks later. Melanoma is such a fast moving, sneaky cancer, that if left untreated can be fatal quickly.
I shook and cried as I called Husband to tell him. He cried with me. It was like life stopped moving for us. And it kept on moving for everyone else. I was school shopping with Little Miss at the time and I had to continue shopping, wondering if it was the last time I'd be able to do that with her. That was a terrible feeling.
The times I struggled the most, as the days ticked by, were when I thought about missing my children. All 4 of our children are under the age of 11. So much of life is still in front of them. So many formative years. I didn't want to miss them for my sake. I didn't want them to miss me, for their sakes. I don't think I'm an awesome mom or anything, but I believe it is ingrained in every child to want a mom to love them because a mom loves like no one else can.
Somehow, at the same time, I felt so ready. I imagined a life void of depression, anxiety and mysophonia. Void of worrying about the next shoe to drop. Void of the pain that comes with our fallen world. Thinking of that - the relief from those things - gave me so much comfort. Knowing that I was going to get to the end of the race, holding the hand of Christ, and knowing my children were safe and cared for, provided such a feeling of peace and joy that I was surprised by it.
Later that week, the doctor called to say that it was melanoma in situ, meaning that it was contained and superficial. I felt like I had worried for nothing, but I was still worried, for some reason. He told me I would need to see the surgeon for an excision so it didn't become invasive. On Monday I went to the surgeon who said that the dermatologist had been wrong. It was indeed invasive and would need to be biopsied again to see what stage it actually was at.
4 more days we waited, until today, when she called to say that the margins were clear. The melanoma was gone. And that I would just need to have a wider excision, just to be on the safe side. That is yet to be scheduled.
I cried when I got off the phone with her. A wave of emotions have been hitting me over the course of the day. Strangely enough, the biggest emotion I primarily felt was disappointment. Disappointment that the thoughts that had brought me peace were not going to become reality.
Everyone laughs at me and points at my pessimism when I say that I have always expected to die young. Since I was a little girl, I have had that in my head. Unfortunately, baking myself in the sun was something I didn't really think would have an impact on that thought when I was a teenager. I went to tanning beds at least 40 times and got burnt on a regular basis, even to the point of sun poisoning once.
So when I learned I had melanoma, I didn't blame it on God, despite the fact that that is my usual, knee-jerk response. My overall thought was, "Okay, God. Let's do this." I knew He would walk beside me and I knew He didn't cause it.
Over the course of the last several years I have learned that I can't really cling to anything here because everything that I can see and touch is temporary. Everything is broken and in it's own pain and sometimes I am just on my own with God. The prospect of dying highlighted that reality even more these last couple of weeks. No one else can feel the feelings I feel, think the things I think or really understand what I'm experiencing because they just aren't me. And because of that, I have to rely on Him.
I don't understand what will happen next, what He desires of me, except to wake up each morning and ask Him. I am so grateful to know, in a new and different way, that comfort and peace do come from Him and the comfort of eternity gives joy.
I don't want to have cancer. This was caught at stage 1. It could come back. It could arrive somewhere else. My risk was high anyway - now it is higher. So, we may face this again, but now I know that the hope of eternity will be with it.
The only experience I really had of melanoma, per say, was a dear friend who was diagnosed with melanoma and died 3 weeks later. Melanoma is such a fast moving, sneaky cancer, that if left untreated can be fatal quickly.
I shook and cried as I called Husband to tell him. He cried with me. It was like life stopped moving for us. And it kept on moving for everyone else. I was school shopping with Little Miss at the time and I had to continue shopping, wondering if it was the last time I'd be able to do that with her. That was a terrible feeling.
The times I struggled the most, as the days ticked by, were when I thought about missing my children. All 4 of our children are under the age of 11. So much of life is still in front of them. So many formative years. I didn't want to miss them for my sake. I didn't want them to miss me, for their sakes. I don't think I'm an awesome mom or anything, but I believe it is ingrained in every child to want a mom to love them because a mom loves like no one else can.
Somehow, at the same time, I felt so ready. I imagined a life void of depression, anxiety and mysophonia. Void of worrying about the next shoe to drop. Void of the pain that comes with our fallen world. Thinking of that - the relief from those things - gave me so much comfort. Knowing that I was going to get to the end of the race, holding the hand of Christ, and knowing my children were safe and cared for, provided such a feeling of peace and joy that I was surprised by it.
Later that week, the doctor called to say that it was melanoma in situ, meaning that it was contained and superficial. I felt like I had worried for nothing, but I was still worried, for some reason. He told me I would need to see the surgeon for an excision so it didn't become invasive. On Monday I went to the surgeon who said that the dermatologist had been wrong. It was indeed invasive and would need to be biopsied again to see what stage it actually was at.
4 more days we waited, until today, when she called to say that the margins were clear. The melanoma was gone. And that I would just need to have a wider excision, just to be on the safe side. That is yet to be scheduled.
I cried when I got off the phone with her. A wave of emotions have been hitting me over the course of the day. Strangely enough, the biggest emotion I primarily felt was disappointment. Disappointment that the thoughts that had brought me peace were not going to become reality.
Everyone laughs at me and points at my pessimism when I say that I have always expected to die young. Since I was a little girl, I have had that in my head. Unfortunately, baking myself in the sun was something I didn't really think would have an impact on that thought when I was a teenager. I went to tanning beds at least 40 times and got burnt on a regular basis, even to the point of sun poisoning once.
So when I learned I had melanoma, I didn't blame it on God, despite the fact that that is my usual, knee-jerk response. My overall thought was, "Okay, God. Let's do this." I knew He would walk beside me and I knew He didn't cause it.
Over the course of the last several years I have learned that I can't really cling to anything here because everything that I can see and touch is temporary. Everything is broken and in it's own pain and sometimes I am just on my own with God. The prospect of dying highlighted that reality even more these last couple of weeks. No one else can feel the feelings I feel, think the things I think or really understand what I'm experiencing because they just aren't me. And because of that, I have to rely on Him.
I don't understand what will happen next, what He desires of me, except to wake up each morning and ask Him. I am so grateful to know, in a new and different way, that comfort and peace do come from Him and the comfort of eternity gives joy.
I don't want to have cancer. This was caught at stage 1. It could come back. It could arrive somewhere else. My risk was high anyway - now it is higher. So, we may face this again, but now I know that the hope of eternity will be with it.
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