This was the year that I was diagnosed with melanoma. I guess I should be happy it's over, but I'm actually not. I don't think 2012 will be significantly different. I'll still be a melanoma warrior fighting the good fight. The calendar does not change that. As always, I do have hopes for the new year. Melanoma has just shaped those this time. On the other hand, melanoma has made me such much more grateful for what I have than at the end of any other year.
I don't know what 2012 will bring. I can dream that fewer people will be told they have this ugly disease. I can dream that more people will win their battle over it. And I can dream that I keep winning my battle.
Happy 2012 to all my fellow Melanoma Warriors.
Saturday, December 31, 2011
Wednesday, December 28, 2011
Making peace with the sun
To say that I have done a lot of research since my initial melanoma diagnosis would be an understatement. My years of graduate research sure paid off in knowing how to search academic sites. In these searches, the exposure to the sun and its resulting effects frequently is cited. I've read studies that show the sun (or its effects) might be responsible for 15-85% of melanoma cases. And genetics 15-85%. Not very conclusive. It doesn't give me the easy answers I would like to have.
I will admit that I love the sun. It took me 6 months to say that easily. I love to be oustide. I love to garden. I love to run. All while feeling the warming effects of the sun. And it took me so long to acknowledge that because I now know that that might have caused my melanoma. And it took me these past 6 months to realize that there is nothing wrong with loving the sun and how it makes me feel.
When I had this realization the other day, I felt like I'd been hit by a truck. A big one with multiple axles. The power was admitting that it's ok to like the sun but I have to enjoy it differently now. I will have to avoid the middle of the day sun. I need to be so very, very strict about wearing the right kind of sunscreen. I can't forget my hat anymore. I save up for UV rated clothing. These things are very do-able. It means I can easily enjoy the sun without as much guilt as I've faced the last 6 months. Yes, I would love to just run outside without these thoughts but I can't any more. I refuse to feel frustrated by this. It's just my life now. And if it means I have found peace with the sun and my ability to love it, then that's not a very high price to pay.
I will admit that I love the sun. It took me 6 months to say that easily. I love to be oustide. I love to garden. I love to run. All while feeling the warming effects of the sun. And it took me so long to acknowledge that because I now know that that might have caused my melanoma. And it took me these past 6 months to realize that there is nothing wrong with loving the sun and how it makes me feel.
When I had this realization the other day, I felt like I'd been hit by a truck. A big one with multiple axles. The power was admitting that it's ok to like the sun but I have to enjoy it differently now. I will have to avoid the middle of the day sun. I need to be so very, very strict about wearing the right kind of sunscreen. I can't forget my hat anymore. I save up for UV rated clothing. These things are very do-able. It means I can easily enjoy the sun without as much guilt as I've faced the last 6 months. Yes, I would love to just run outside without these thoughts but I can't any more. I refuse to feel frustrated by this. It's just my life now. And if it means I have found peace with the sun and my ability to love it, then that's not a very high price to pay.
Friday, December 23, 2011
Don't judge.....
Vent ahead...
Don't judge me, you don't know anything about me. You know that smile I only half returned? It's because a full smile would pull on new stitches over muscles that help me smile. That's the band-aid you can barely see hidden by my hair.
Don't judge me when I don't raise my empty left arm/hand to wave back at you when my right arm is full. It's because I have a dozen stitches in two sites holding the very tight skin of my shoulder together and raising my arm any higher might rip them out. That's why that arm is empty but you don't know that because you can't see the bandaging under my shirt.
Don't judge me because I stand in the shade away from the crowd. It's because the crowd is standing in the sun at its high point and I haven't made peace with the fact that it's trying to kill me yet. I would love to talk and be social but you didn't take the time to ask why I was standing here. You judged me and thought I was being anti-social.
Don't judge me because I make my kids wear hats, in the sun, when it's 45 degrees out. It's because I never, ever, ever want my children to go through what I am. It's because we don't know if my time as a 7 or 8 year old outside in the winter caused my melanoma and I'm not willing to risk their lives to find out. Don't judge me because I let them wear camoflauged, military boonie hats. It's because I respect the military and so do my boys. It does not mean I am a war monger. It means my boys and I compromised because I wanted them with a hat that covered their ears and they think military members are heroes.
Don't judge me when I casually answer "melanoma" when you ask about the bandaging on my arm or face. It's not because I think this disease is funny. It's because I refuse to let this disease control my life and my emotions. I take it deadly seriously but you never gave me a chance to explain that because you thought I treated it as no big deal. I reserve the right to deal with this insidious disease in the most positive way I can. So, if I joke about asking for a face lift when she stitched up my face, it's a coping mechanism, not denial.
I find I am much more tolerant of people now because I understand assumptions come in all shapes and sizes. I do everything I can to not judge you, so please don't judge me. I am fighting for my life, but you can't see that.
Don't judge me, you don't know anything about me. You know that smile I only half returned? It's because a full smile would pull on new stitches over muscles that help me smile. That's the band-aid you can barely see hidden by my hair.
Don't judge me when I don't raise my empty left arm/hand to wave back at you when my right arm is full. It's because I have a dozen stitches in two sites holding the very tight skin of my shoulder together and raising my arm any higher might rip them out. That's why that arm is empty but you don't know that because you can't see the bandaging under my shirt.
Don't judge me because I stand in the shade away from the crowd. It's because the crowd is standing in the sun at its high point and I haven't made peace with the fact that it's trying to kill me yet. I would love to talk and be social but you didn't take the time to ask why I was standing here. You judged me and thought I was being anti-social.
Don't judge me because I make my kids wear hats, in the sun, when it's 45 degrees out. It's because I never, ever, ever want my children to go through what I am. It's because we don't know if my time as a 7 or 8 year old outside in the winter caused my melanoma and I'm not willing to risk their lives to find out. Don't judge me because I let them wear camoflauged, military boonie hats. It's because I respect the military and so do my boys. It does not mean I am a war monger. It means my boys and I compromised because I wanted them with a hat that covered their ears and they think military members are heroes.
Don't judge me when I casually answer "melanoma" when you ask about the bandaging on my arm or face. It's not because I think this disease is funny. It's because I refuse to let this disease control my life and my emotions. I take it deadly seriously but you never gave me a chance to explain that because you thought I treated it as no big deal. I reserve the right to deal with this insidious disease in the most positive way I can. So, if I joke about asking for a face lift when she stitched up my face, it's a coping mechanism, not denial.
I find I am much more tolerant of people now because I understand assumptions come in all shapes and sizes. I do everything I can to not judge you, so please don't judge me. I am fighting for my life, but you can't see that.
Thursday, December 22, 2011
Another round of biopsies
I know I've been gone a while. Life happens. And my 3 month parole was over. Yesterday I had my latest set of biopsies. One on my left side burn (weird to hear that as a girl) and three on my left shoulder area. I have 3 wounds since two moles were close enough together to combine them as one closure. Again, I opted to have my sites stitches closed. I also had her look at my original site because two areas have bubbled up and become quite painful in the last 3 weeks since I saw her. She thinks it is the scar tissue not doing well, so she's prescribed a special tape for me to use and see if it helps. If not, she'll use shots to fix it and if those fail, she will re-open/re-close the wound again. I'm really hoping the tape works because the thought of having that area worked on again, even a single shot, is not my idea of a good time.
If you are squeemish, skip this paragraph. I will tell you that having your face cut into is unlike any other. Yes, my skin was numb. I could feel the usual pressure of her tugging, manipulating, whatever. But I could hear her cutting my flesh. Oh My God! What an awful thing. The area of the biopsy is right in front of my ear so the bone transmitted the sound oh so well. Eww and double eww. I don't ever wish to experience/hear that again. I kept hearing that sound in my head last night as I couldn't sleep due to pain and a sick kid. (Great timing for that, of course)
I don't expect the doctor to call me with results. #1 The labs are probably closed on Friday and my doctor is, and #2 I have decided to adopt the "no news is good news" philosophy for this round. Yes, I expect 50% to be dysplastic and 50% benign. She'll let me know if it's anything else.
I also saw my primary doctor yesterday for a semi-regular lymph node squishing, as I call it. He thinks nothing is swollen but I still worry since cancer can be there without swelling. That's my next battle with the insurance company.
If you are squeemish, skip this paragraph. I will tell you that having your face cut into is unlike any other. Yes, my skin was numb. I could feel the usual pressure of her tugging, manipulating, whatever. But I could hear her cutting my flesh. Oh My God! What an awful thing. The area of the biopsy is right in front of my ear so the bone transmitted the sound oh so well. Eww and double eww. I don't ever wish to experience/hear that again. I kept hearing that sound in my head last night as I couldn't sleep due to pain and a sick kid. (Great timing for that, of course)
I don't expect the doctor to call me with results. #1 The labs are probably closed on Friday and my doctor is, and #2 I have decided to adopt the "no news is good news" philosophy for this round. Yes, I expect 50% to be dysplastic and 50% benign. She'll let me know if it's anything else.
I also saw my primary doctor yesterday for a semi-regular lymph node squishing, as I call it. He thinks nothing is swollen but I still worry since cancer can be there without swelling. That's my next battle with the insurance company.
Sunday, November 27, 2011
3 month check up
Tomorrow is the day of my 3 month "check-up." I'm not sure what to expect. Another series of biopsies? Nothing? More time? I just don't know. And I don't even have any expectations right now, which is an odd feeling. All of my other visits has been preceded with me bracing myself for something. Maybe bad news, maybe biopsies, any other thing. This visit is one where I have no idea what to expect. I'm in unchartered waters right now in this battle.
I will say that I have two moles I don't like (more than the rest, of course). I try not to spend too much time in the mirror. I've started a walk away policy with myself that I can only stand there for a short time and then I'm done. No matter what. And I don't go back for at least an hour. It has helped reduce some paranoia but not all.
I'm going tomorrow with an open mind and no expectations, but I'm still scared. That's probably because I don't know what to expect or what to prepare for.
I will say that I have two moles I don't like (more than the rest, of course). I try not to spend too much time in the mirror. I've started a walk away policy with myself that I can only stand there for a short time and then I'm done. No matter what. And I don't go back for at least an hour. It has helped reduce some paranoia but not all.
I'm going tomorrow with an open mind and no expectations, but I'm still scared. That's probably because I don't know what to expect or what to prepare for.
Sunday, November 6, 2011
Paranoia in a new form
These last few weeks have been a little bit of a professional roller coaster. I got a new student who changes everything. And I mean Everything! I think I've grown more this last few weeks as a teacher than all my time before. This is why I've been scarce.
So, it's November. The month of my next check up/in. You guessed it. The stress level in my world is going up. No, I don't have any reason to be more worried today than I was last week (in October). Yes, I still have spots I don't like. Actually, I don't like any of my spots but some more than others. Yes, I'm prepared for more biopsies.
I have been worried the last few weeks about the lymph node issue. I will freely admit right now that most of this is in my head. I know, I get it, I own it.... but I'm going to share anyways. I know it'll help me and maybe it'll help someone else.
I started dealing with sporadic night sweat issues in the spring. I wrote it off as peri-menopause since I was (now am) turning 40. Late this summer and this fall, I feel like I am constantly fighting off a cold. I keep writing this off because I am a teacher and my kids are in two more classrooms full of germ-y little bodies. But yet, I can't shake the worry that these match a few, and only a few, of the symptoms the experts said to watch out for. Did I have them before that visit, yes. Is it related to the melanoma, most likely not. But I worry still. I can tell my worrying is hitting an unhealthy level because my sleeping patterns have taken a recent turn for the worse.
So, I'm not sure where to go now. Do I speed up my scheduled visit to deal with this sooner than later? Or do I give myself the rest of the month to work through my own self-inflicted paranoia? There's no right or wrong answer, until after the results. It's the old "hindsight is 20/20" saying. I think I'm going to start with a call to my cancer-posse and get that sounding board to work my way through this. They won't tell me what to do but help me figure out what decision works best for me.
So, it's November. The month of my next check up/in. You guessed it. The stress level in my world is going up. No, I don't have any reason to be more worried today than I was last week (in October). Yes, I still have spots I don't like. Actually, I don't like any of my spots but some more than others. Yes, I'm prepared for more biopsies.
I have been worried the last few weeks about the lymph node issue. I will freely admit right now that most of this is in my head. I know, I get it, I own it.... but I'm going to share anyways. I know it'll help me and maybe it'll help someone else.
I started dealing with sporadic night sweat issues in the spring. I wrote it off as peri-menopause since I was (now am) turning 40. Late this summer and this fall, I feel like I am constantly fighting off a cold. I keep writing this off because I am a teacher and my kids are in two more classrooms full of germ-y little bodies. But yet, I can't shake the worry that these match a few, and only a few, of the symptoms the experts said to watch out for. Did I have them before that visit, yes. Is it related to the melanoma, most likely not. But I worry still. I can tell my worrying is hitting an unhealthy level because my sleeping patterns have taken a recent turn for the worse.
So, I'm not sure where to go now. Do I speed up my scheduled visit to deal with this sooner than later? Or do I give myself the rest of the month to work through my own self-inflicted paranoia? There's no right or wrong answer, until after the results. It's the old "hindsight is 20/20" saying. I think I'm going to start with a call to my cancer-posse and get that sounding board to work my way through this. They won't tell me what to do but help me figure out what decision works best for me.
Saturday, October 29, 2011
Melanoma Breakthroughs
I try to keep up with developing news about melanoma and cancer in general. Usually, it takes some searching. The other day I found out all I had to do was open my daily newspaper. The front page, main article was about a new break through with a combination therapy being used in clinical trials for advanced stage melanoma patients. Loved it. You can see the original article here: SF Chronicle - Melanoma Advances
I sincerely hope this develops into huge leaps and gains for all of us with melanoma, no matter what stage. Can you imagine being able to take a pill daily that would prohibit any cancer cells from traveling through your body and metastisizing? I can, and I can't wait for that day because I worry most about those spots that haven't been biopsied or noticed.
We have come so far and still have a long ways to go, but this article details a huge step forward.
I sincerely hope this develops into huge leaps and gains for all of us with melanoma, no matter what stage. Can you imagine being able to take a pill daily that would prohibit any cancer cells from traveling through your body and metastisizing? I can, and I can't wait for that day because I worry most about those spots that haven't been biopsied or noticed.
We have come so far and still have a long ways to go, but this article details a huge step forward.
Thursday, October 20, 2011
A different cancer view
Ok, I will admit it. I have absolutely no idea who Giuliana Rancic is. Or was. I wouldn't have, and still won't recognize her in a crowd of two. Of course, I keep an eye on most cancer stuff that crosses mainstream media. Apparently, she is well known enough to qualify. For those who are like me, I guess she is a fashion reporter on Good Morning America, or something similar. (In full disclosure, I don't watch much TV).
I was surfing and saw that MSN had an article about her husband's comments about her lumpectomy that happened today. Again, I am out of touch and had no idea this was an on-going battle. I had wrongly assumed she disclosed the diagnosis because of Pinktober. He made a comment that touched me deeply and summarized how I view life after my diagnosis. I have struggled to explain to people how hearing the word "melanoma" changed my view of life and what is important or not. His words finally hit on my feelings. I will be stealing them often and repeatedly.
Giuliana's husband said this about her battle, "She's really viewing life a little bit differently. It's funny when you go through a situation like this, it really turns the volume down on the things that really aren't that important."
I was surfing and saw that MSN had an article about her husband's comments about her lumpectomy that happened today. Again, I am out of touch and had no idea this was an on-going battle. I had wrongly assumed she disclosed the diagnosis because of Pinktober. He made a comment that touched me deeply and summarized how I view life after my diagnosis. I have struggled to explain to people how hearing the word "melanoma" changed my view of life and what is important or not. His words finally hit on my feelings. I will be stealing them often and repeatedly.
Giuliana's husband said this about her battle, "She's really viewing life a little bit differently. It's funny when you go through a situation like this, it really turns the volume down on the things that really aren't that important."
I couldn't agree more. I have really turned down the volume on things that aren't important in the big picture. I hope she comes out of her battle hearing what is important and hitting the mute button on what isn't. I know I sure have.
Monday, October 10, 2011
Hair!
When most people think of cancer, and its treatment, they think of going bald and losing your hair. I admit to being one of those people. I've already talked about knowing I'd get cancer one day. I knew that with so much certainty that I'd already decided how to handle the chemo part of losing my hair. I was (and still will) cut it very short and dye it some ridiculous color.... like silver with red highlights. I figured that if I took charge and made a radical change, then it wouldn't be my hair falling out. Trust me, it makes sense in my head. It's why a lot of patients shave their head instead of letting it fall out. It's about control.
I have survived this round of melanoma without needing radiation and chemo. I count myself lucky. I also know the next round may include it. When I was first diagnosed with melanoma I went into chemical discovery overload. I tried to find any research related to any possible chemical I have been and might continue to be exposed to. Of course, coloring my hair came up. Prior to my diagnosis, I had started to grow tired of the 6-7 week maintenance of hiding my grey hair. After my diagnosis, I started to wonder if it might be related. I never found any research that made me think I should do away with it completely. What I did find after my diagnosis was more self acceptance for what I was hiding.
I started to go grey at 23. My Grandmother was totally silver at 35. And beautiful to boot. I started coloring at about 28ish.... and have been ever since. This summer I really started to wonder, "Why am I doing this?" I was sick of the maintenance and missed my real color plus the silver. So I stopped coloring my hair this summer and watched the grey grow out to get an idea of how grey I really am. And wow!!!! I'm about 1/3 to 1/2 grey now, but I like the shading and tints of it. Apparently, I'm not a total white color. I see neat shades of silver and grey and several of my natural brown. And the more I look, the more I realized that that is me. The real me.
I am not afraid to be grey. I am already mistaken for being older than my 40 so being grey won't change that. What it will change is that people will see the real me. And I will see a person in the mirror that I accept for who I am. No more hiding behind my hair as a shield. I will admit that I'm going to miss my long hair. It's down to my mid-back right now and I'm going up to about 2 or 3" to ease the time it takes to let the old, dyed hair grow out. I will let it grow back to this length when the color is all mine.
The really cool part about going "all in" with this new hairstyle is that I am able to donate my old hair. I did this several years ago and will do it again this week. There is a young girl who needs my hair more than me. I don't mind going short. Heck, being bald wouldn't bother me like it bothers her. So, I am donating between 10-12 inches of hair to another cancer patient who needs it now. I don't. Call it paying it forward. And accepting myself for who I am, grey and all. She can die it silver with red highlights if she wants. It will be hers to control now. I'm gladly passing that on to her as I take control of showing who I am now....as a melanoma warrior.
I have survived this round of melanoma without needing radiation and chemo. I count myself lucky. I also know the next round may include it. When I was first diagnosed with melanoma I went into chemical discovery overload. I tried to find any research related to any possible chemical I have been and might continue to be exposed to. Of course, coloring my hair came up. Prior to my diagnosis, I had started to grow tired of the 6-7 week maintenance of hiding my grey hair. After my diagnosis, I started to wonder if it might be related. I never found any research that made me think I should do away with it completely. What I did find after my diagnosis was more self acceptance for what I was hiding.
I started to go grey at 23. My Grandmother was totally silver at 35. And beautiful to boot. I started coloring at about 28ish.... and have been ever since. This summer I really started to wonder, "Why am I doing this?" I was sick of the maintenance and missed my real color plus the silver. So I stopped coloring my hair this summer and watched the grey grow out to get an idea of how grey I really am. And wow!!!! I'm about 1/3 to 1/2 grey now, but I like the shading and tints of it. Apparently, I'm not a total white color. I see neat shades of silver and grey and several of my natural brown. And the more I look, the more I realized that that is me. The real me.
I am not afraid to be grey. I am already mistaken for being older than my 40 so being grey won't change that. What it will change is that people will see the real me. And I will see a person in the mirror that I accept for who I am. No more hiding behind my hair as a shield. I will admit that I'm going to miss my long hair. It's down to my mid-back right now and I'm going up to about 2 or 3" to ease the time it takes to let the old, dyed hair grow out. I will let it grow back to this length when the color is all mine.
The really cool part about going "all in" with this new hairstyle is that I am able to donate my old hair. I did this several years ago and will do it again this week. There is a young girl who needs my hair more than me. I don't mind going short. Heck, being bald wouldn't bother me like it bothers her. So, I am donating between 10-12 inches of hair to another cancer patient who needs it now. I don't. Call it paying it forward. And accepting myself for who I am, grey and all. She can die it silver with red highlights if she wants. It will be hers to control now. I'm gladly passing that on to her as I take control of showing who I am now....as a melanoma warrior.
Wednesday, October 5, 2011
Cancer and Steve Jobs
I was heartbroken to hear that Steve died earlier today. Even though I don't know him personally, have ever met him or even seen him in person, I still grieve. And am scared all over again.
My husband summed it up perfectly about a half hour ago. "Even with all that money, even he couldn't beat cancer." I couldn't have said it better. You see, cancer does not care who you are. A teacher, a bum or the most highly recognized CEO in the world. Yes, money helps provide early detection and more treatment but sometimes the beast is just too much. No matter who you are.
On another note, it's a little more personal. I have a good friend who has "Steve Jobs cancer" herself. She was diagnosed several years ago and has two young children. The first thing I did when I heard was to send her a text message asking, "So how are your cancer neurosis doing right now?" This news hit me hard but I cannot even imagine how she is feeling. Even though she is winning the battle, you know she has to wonder if she will continue to win or is she just a few years behind him. I wish I could do more for her than offer support and grieve with her. So, I did what I could. I reminded her she has my support and it's ok to be a neurotic fool after this news. I understand in my way and I hope she understands in her way.
I am a huge Apple fan and have been for years. I became a Steve Jobs fan when he went public with his battle. RIP Steve, you fought until the end. Go help God sync his iPad and his Mac. That way he can keep track of all of us warriors still left down here on earth.
My husband summed it up perfectly about a half hour ago. "Even with all that money, even he couldn't beat cancer." I couldn't have said it better. You see, cancer does not care who you are. A teacher, a bum or the most highly recognized CEO in the world. Yes, money helps provide early detection and more treatment but sometimes the beast is just too much. No matter who you are.
On another note, it's a little more personal. I have a good friend who has "Steve Jobs cancer" herself. She was diagnosed several years ago and has two young children. The first thing I did when I heard was to send her a text message asking, "So how are your cancer neurosis doing right now?" This news hit me hard but I cannot even imagine how she is feeling. Even though she is winning the battle, you know she has to wonder if she will continue to win or is she just a few years behind him. I wish I could do more for her than offer support and grieve with her. So, I did what I could. I reminded her she has my support and it's ok to be a neurotic fool after this news. I understand in my way and I hope she understands in her way.
I am a huge Apple fan and have been for years. I became a Steve Jobs fan when he went public with his battle. RIP Steve, you fought until the end. Go help God sync his iPad and his Mac. That way he can keep track of all of us warriors still left down here on earth.
Monday, October 3, 2011
Ripples in my melanoma pond
My boys had a doctor's appointment today. Luckily it was just a check up and not an ER follow up visit. (Very familiar with those around here). In the course of the visit, I told the pediatrician about my melanoma diagnosis. My dermatologist and Stanford's melanoma docs both recommended this so I followed through with their advice.
His support of me as a patient and a parent was wonderful. He told me that he didn't see any suspicious sites on the boys and said he thought I'd be a much better resource for catching them anyways. I didn't think he was minimizing his skill but more affirming how vigilant he knows I am now with watching their skin. I guess all this experience is worth something.
The interesting, unexpected part of this conversation was his comments about the boy's Vitamin D levels. Ok, self flogging ahead. I had added VitD to my daily vitamins after doing extensive research on this because I know my absorption of it from the sun is non-existent these days. And yet, I never transferred this to my children. I did not take into fact that their VitD levels have probably dropped even more this summer and I was already pretty good with sunscreen before my diagnosis. Sheesh, talk about being self centered. The new, melanoma me freely told the doctor this and asked for his recommendation of VitD supplements for the boys.
I am not going to post his response for many reasons. #1 my boys are young but very skinny by genetics, so that plays a big factor. And #2 I don't want anyone taking my blog post as medical advice or replacement for actually talking to their children's doctor. Our kids are so different. I also live in one of the sunniest states in the USA, which is another factor when added to how many activities we participate in outdoors.
I seriously worried about my diagnosis and my kids as in finding spots on their bodies. I never considered the VitD issue for them. Small ripples in this huge pond of melanoma. Again, this affects me and all of us in ways we don't always see. Luckily I now can see this one. One more ripple.....
His support of me as a patient and a parent was wonderful. He told me that he didn't see any suspicious sites on the boys and said he thought I'd be a much better resource for catching them anyways. I didn't think he was minimizing his skill but more affirming how vigilant he knows I am now with watching their skin. I guess all this experience is worth something.
The interesting, unexpected part of this conversation was his comments about the boy's Vitamin D levels. Ok, self flogging ahead. I had added VitD to my daily vitamins after doing extensive research on this because I know my absorption of it from the sun is non-existent these days. And yet, I never transferred this to my children. I did not take into fact that their VitD levels have probably dropped even more this summer and I was already pretty good with sunscreen before my diagnosis. Sheesh, talk about being self centered. The new, melanoma me freely told the doctor this and asked for his recommendation of VitD supplements for the boys.
I am not going to post his response for many reasons. #1 my boys are young but very skinny by genetics, so that plays a big factor. And #2 I don't want anyone taking my blog post as medical advice or replacement for actually talking to their children's doctor. Our kids are so different. I also live in one of the sunniest states in the USA, which is another factor when added to how many activities we participate in outdoors.
I seriously worried about my diagnosis and my kids as in finding spots on their bodies. I never considered the VitD issue for them. Small ripples in this huge pond of melanoma. Again, this affects me and all of us in ways we don't always see. Luckily I now can see this one. One more ripple.....
Sunday, October 2, 2011
Uncomfortable flattery
As you know, I am a 6th grade teacher. Those kids are not quite little kids and not yet teenagers....they're in a weird sort of space. One minute they worship the ground I walk on and the next they are rolling their eyes at me and trying to start an argument. And I love them.
On Friday, one of my more challenging students was up to no good. It was clear he was not writing what he was supposed to be and I'm learning to work with him. He's a special ed. student so every day is a new challenge. Anyways, I walked over and asked him what he was working on. (Obviously, I knew what he wasn't working on). It's a technique that's worked well with him to try to redirect him to the task at hand. I was completely unprepared for the following interaction.
Me: So, "R" what are you working on right now?
Student: I don't know what to write so I was thinking.
Me: Hhmm, I saw you using your red pen so I thought maybe you were making some edits to your rough draft.
Student: Nope, I needed to think so I gave myself some stitches on my arm just like yours. Aren't they cool?
Me: (Staring in amazement at an almost identical hand drawn scar on his left arm in the same spot. Stitch dots and all). Wow, I'm flattered but I'd rather see you use the pen to edit your writing and not mark where my bionic arm needed new batteries.
Student: Sure, Mrs. P... but aren't my scars cool looking?
Me: (Smiling and trying not to laugh). Yes, "R" I think scars of any kind are cool.
I had to talk a few deep breaths to not laugh or cry at that moment. He is a funny young man but don't get me wrong, he's about 40% of my daily work. The fact that he still wants to "be like me" just floored me. It tells me that as a teacher, I am making an impact on him. No, it isn't really about the scar. It's about that he is relating to me, he just identified that first.
I often tell people that I don't want to be identified and known as a melanoma patient. This young man has no idea that I'm a melanoma warrior. And he won't. But yet, my scars are uniquely mine and identifiable. I am gratified as a teacher that as much as he and I have to work on our relationship daily, sometimes hourly, that he looks up to me. I'm flattered that my scariest moments ever are reminding me and my students that scars are the remnants of our battles and not what we truly are. Even if they don't know anything about my battle at all.
On Friday, one of my more challenging students was up to no good. It was clear he was not writing what he was supposed to be and I'm learning to work with him. He's a special ed. student so every day is a new challenge. Anyways, I walked over and asked him what he was working on. (Obviously, I knew what he wasn't working on). It's a technique that's worked well with him to try to redirect him to the task at hand. I was completely unprepared for the following interaction.
Me: So, "R" what are you working on right now?
Student: I don't know what to write so I was thinking.
Me: Hhmm, I saw you using your red pen so I thought maybe you were making some edits to your rough draft.
Student: Nope, I needed to think so I gave myself some stitches on my arm just like yours. Aren't they cool?
Me: (Staring in amazement at an almost identical hand drawn scar on his left arm in the same spot. Stitch dots and all). Wow, I'm flattered but I'd rather see you use the pen to edit your writing and not mark where my bionic arm needed new batteries.
Student: Sure, Mrs. P... but aren't my scars cool looking?
Me: (Smiling and trying not to laugh). Yes, "R" I think scars of any kind are cool.
I had to talk a few deep breaths to not laugh or cry at that moment. He is a funny young man but don't get me wrong, he's about 40% of my daily work. The fact that he still wants to "be like me" just floored me. It tells me that as a teacher, I am making an impact on him. No, it isn't really about the scar. It's about that he is relating to me, he just identified that first.
I often tell people that I don't want to be identified and known as a melanoma patient. This young man has no idea that I'm a melanoma warrior. And he won't. But yet, my scars are uniquely mine and identifiable. I am gratified as a teacher that as much as he and I have to work on our relationship daily, sometimes hourly, that he looks up to me. I'm flattered that my scariest moments ever are reminding me and my students that scars are the remnants of our battles and not what we truly are. Even if they don't know anything about my battle at all.
Wednesday, September 21, 2011
Clinical trials and student doctors
This post is completely my opinion. I expect many will disagree. And I welcome that.
I have always been the patient, albeit a sporadic one before, that had no problem with student doctors, residents, nurses, etc coming in during my appointments. I was this type of patient long, long before I realized I was destined to be a teacher, so this is nothing new. I don't mind that there is someone there to learn from me. What mattered to me was that my doctor was knowledgeable, skilled, and respected enough to be trusted with teaching someone how to do an incredibly important job. It not only reaffirmed my choice of doctors but reminded me why I saw them in the first place. I never minded they questions the "student" asked. I figure they are much more cautious and less inclined to write stuff off. I also figured their questions made my doctor justify their decisions and potentially second guess them to see if there was a better route for me, the patient. Now that I feel like a professional patient, I was beyond thrilled when my melanoma specialist brought in a resident/doctor-in-specialty-training in with her. I hate the fact that we need melanoma specialist but I loved knowing my doctor is training them while treating me.
Now, about those clinical trials that have gotten beat up in the press lately. On a conceptual basis, I am all in favor of them. Of course, there is no place for cutting corners, fudging statistics/data, or rushing things through. I believe that these are the exceptions to the amazing work that doctors do daily. So, it should come as no surprise that within a month of my initial diagnosis I was looking for clinical trials to be a part of. In any US state and for any type of research. I found a few that were very specific and did not need my Stage 1a self. I found a few others that had passed the point of accepting new patients. I kept trying and I think I might have found one. I can't say for sure I'll be accepted, it'll work out, or I can do it, but I sure am trying right now. The latest battle is my insurance company, again, to be a part of this. To me, it's a battle worth fighting. I look at it from the perspective that if I can keep another person from going through this or help their treatment if they do, then it's worth it to me. And another set of eyes being vigilant about my care is the frosting on this cake.
I wrote this post to express my thoughts and to hopefully make someone else consider letting that new doctor or nurse in the room. I believe you will make a difference, down the road, in another melanoma patients care. Same goes with clinical trials. My opinion is my own, but hopefully I've given you something to think about when forming your own, melanoma warrior or not.
I have always been the patient, albeit a sporadic one before, that had no problem with student doctors, residents, nurses, etc coming in during my appointments. I was this type of patient long, long before I realized I was destined to be a teacher, so this is nothing new. I don't mind that there is someone there to learn from me. What mattered to me was that my doctor was knowledgeable, skilled, and respected enough to be trusted with teaching someone how to do an incredibly important job. It not only reaffirmed my choice of doctors but reminded me why I saw them in the first place. I never minded they questions the "student" asked. I figure they are much more cautious and less inclined to write stuff off. I also figured their questions made my doctor justify their decisions and potentially second guess them to see if there was a better route for me, the patient. Now that I feel like a professional patient, I was beyond thrilled when my melanoma specialist brought in a resident/doctor-in-specialty-training in with her. I hate the fact that we need melanoma specialist but I loved knowing my doctor is training them while treating me.
Now, about those clinical trials that have gotten beat up in the press lately. On a conceptual basis, I am all in favor of them. Of course, there is no place for cutting corners, fudging statistics/data, or rushing things through. I believe that these are the exceptions to the amazing work that doctors do daily. So, it should come as no surprise that within a month of my initial diagnosis I was looking for clinical trials to be a part of. In any US state and for any type of research. I found a few that were very specific and did not need my Stage 1a self. I found a few others that had passed the point of accepting new patients. I kept trying and I think I might have found one. I can't say for sure I'll be accepted, it'll work out, or I can do it, but I sure am trying right now. The latest battle is my insurance company, again, to be a part of this. To me, it's a battle worth fighting. I look at it from the perspective that if I can keep another person from going through this or help their treatment if they do, then it's worth it to me. And another set of eyes being vigilant about my care is the frosting on this cake.
I wrote this post to express my thoughts and to hopefully make someone else consider letting that new doctor or nurse in the room. I believe you will make a difference, down the road, in another melanoma patients care. Same goes with clinical trials. My opinion is my own, but hopefully I've given you something to think about when forming your own, melanoma warrior or not.
Sunday, September 18, 2011
General Update
It's harder to post now that I'm back to teaching. Again, I'm reminded how lucky I am that the worst of my battle took place over the summer. I can't imagine making weekly or twice weekly appointments right now.
My scars are healing. I hit a patch last week where all of them were a little more sore. I think that's just the natural progression of healing. They are much more purple tinted now, so they are more noticeable. Again, it's a step in the right direction even though they look worse.
I'm settling in to my new normal some as well. I still spend way too much time in front of a mirror looking at my skin wondering if "this spot is going to kill me?" It's not a fun way to live and my stretches of morbid thoughts are getting a little further apart. I know that's part of the mental healing that goes with the disease but it still stinks to wonder if you're own skin will kill you.
My next appointment is 2 months away and right now, I'm not feeling the need to see her sooner. I keep reminding myself that she felt the highest risk spots are gone and that 3 months won't be life risking. I'm noticing that days are the easiest times to reassure myself and the worst is those final minutes as I fall asleep. My nights are getting more restful but the dreams are still turbulent and troubling. I'm up during the night less and that reminds me I'm mentally healing even though I might not see it.
My scars are healing. I hit a patch last week where all of them were a little more sore. I think that's just the natural progression of healing. They are much more purple tinted now, so they are more noticeable. Again, it's a step in the right direction even though they look worse.
I'm settling in to my new normal some as well. I still spend way too much time in front of a mirror looking at my skin wondering if "this spot is going to kill me?" It's not a fun way to live and my stretches of morbid thoughts are getting a little further apart. I know that's part of the mental healing that goes with the disease but it still stinks to wonder if you're own skin will kill you.
My next appointment is 2 months away and right now, I'm not feeling the need to see her sooner. I keep reminding myself that she felt the highest risk spots are gone and that 3 months won't be life risking. I'm noticing that days are the easiest times to reassure myself and the worst is those final minutes as I fall asleep. My nights are getting more restful but the dreams are still turbulent and troubling. I'm up during the night less and that reminds me I'm mentally healing even though I might not see it.
Sunday, September 11, 2011
10 years ago..
My very first day of teaching was 9-11-01. Exactly 10 years ago today. It's a day I learned about how strong my country is, how to teach when you didn't have the answers, and what amazing spirits children can be.
I was in law enforcement for almost 20 years. 9-11 hit home very hard because I know I would have run into the twin towers along with all the men and women I've ever worked with. The price public safety paid that day is still immeasurable. Even today those men and women are paying. Many of them are suffering multiple types of cancers and respiratory diseases that will eventually kill them. They may not have died on 9-11 but in the days following, their dedication will eventually cost them their lives.
I was a huge cancer research supporter long before 9-11. I watched it decimate my family. After 9-11, I've watched this disease infect many firefighters and cops with its black tendrils of death. And now I am fighting a cancer that may have been caused by my job. I will never know if a certain house fire I rushed into was "the one" that caused it. Or was it the car fire a different day? Or was it being in the sun for hours and hours on end directing traffic to keep my community safe because the lights were out? I bring this up because I am fighting to get my previous employer to cover some of my medicals costs. Many 9-11 responders are still fighting to be treated and cared for. And that's not ok with me or many others.
There is no way to prove that many of the cancers that NYPD and FDNY have contracted are related to 9-11, but we know deep down that that act of terrorism did not end that day. My heart goes out to the families who lost their spouses, brothers, sisters, cousins, friends and any one else that day. My heart doubly breaks thinking of those still fighting the effects of 9-11 today. Ten years later.
I was in law enforcement for almost 20 years. 9-11 hit home very hard because I know I would have run into the twin towers along with all the men and women I've ever worked with. The price public safety paid that day is still immeasurable. Even today those men and women are paying. Many of them are suffering multiple types of cancers and respiratory diseases that will eventually kill them. They may not have died on 9-11 but in the days following, their dedication will eventually cost them their lives.
I was a huge cancer research supporter long before 9-11. I watched it decimate my family. After 9-11, I've watched this disease infect many firefighters and cops with its black tendrils of death. And now I am fighting a cancer that may have been caused by my job. I will never know if a certain house fire I rushed into was "the one" that caused it. Or was it the car fire a different day? Or was it being in the sun for hours and hours on end directing traffic to keep my community safe because the lights were out? I bring this up because I am fighting to get my previous employer to cover some of my medicals costs. Many 9-11 responders are still fighting to be treated and cared for. And that's not ok with me or many others.
There is no way to prove that many of the cancers that NYPD and FDNY have contracted are related to 9-11, but we know deep down that that act of terrorism did not end that day. My heart goes out to the families who lost their spouses, brothers, sisters, cousins, friends and any one else that day. My heart doubly breaks thinking of those still fighting the effects of 9-11 today. Ten years later.
Wednesday, September 7, 2011
Telling your co-worker
The day finally came today. Someone at my school, in the staff room, asked how my summer was. The moment of truth. If you know me in person, I'm terrible at telling a lie. Awful. So there it was......the question I had been hoping to avoid for a few more months. Long enough for them to get to know me first and not my disease. Oh well, I didn't make it.
I tried to keep it simple. As simple as you can....... but how do you keep weekly doctor's visits, deadly diseases, and out patients surgeries simple. I don't know. I haven't figured it out yet. When I uttered the word "melanoma" the discomfort was palatable. And I felt like garbage for being honest. From then on, I tried to minimize how rough the summer was. I don't think I did a very good job. Let's just say I tried to steer the conversation quickly in another direction.
I'm worried about how my fellow co-workers will treat me tomorrow. Honestly, I don't care about how they judge me. I didn't before and I surely don't know. Cancer will do that to you. What I do care about is them being uncomfortable around me. I'm still me. The goofy, trying to figure out 6th grade, new teacher they knew yesterday. Unfortunately, they now might see me as battling a potentially devastating disease. I've become my diagnosis again. And that's what it boils down to for me. For a few blessed weeks, no one knew. I was me, without melanoma hanging a black cloud over my head. And I'm not that now. I don't like it. I liked being the me that might have been before that fateful call in June. And I can't be any longer. The ruse is up.
I know this makes me seem shallow and vain. It's because I am shallow and vain sometimes. I wanted to be judged on the merit of my work with making low income students successful, strong learners. I don't want to be the teacher who has skin cancer. I'm not that woman, I am so much more. I know I have time in the coming months to show exactly who I am. I also know that that time will forever now be tinged with the shade of melanoma. And I don't like it. Not at all. I'm strong enough to admit that now. I'm strong enough to admit being shallow and vain. It's ironic. The disease that gives me the strength to admit my weaknesses is the one I don't want to be judged for.
The information about me will spread through the ranks of my co-workers in the coming days. I'm not looking forward to the sympathy and dealing with it. (See my previous post about my inability to deal with it). I really need to come up with a polite, positive response to well meaning co-workers who find out about my diagnosis. Right now, I've got nothing but painful, uncomfortable honesty. My mom always did say "honesty is the best policy," so I think I'll start there. It's something more than I know what to say now.
I tried to keep it simple. As simple as you can....... but how do you keep weekly doctor's visits, deadly diseases, and out patients surgeries simple. I don't know. I haven't figured it out yet. When I uttered the word "melanoma" the discomfort was palatable. And I felt like garbage for being honest. From then on, I tried to minimize how rough the summer was. I don't think I did a very good job. Let's just say I tried to steer the conversation quickly in another direction.
I'm worried about how my fellow co-workers will treat me tomorrow. Honestly, I don't care about how they judge me. I didn't before and I surely don't know. Cancer will do that to you. What I do care about is them being uncomfortable around me. I'm still me. The goofy, trying to figure out 6th grade, new teacher they knew yesterday. Unfortunately, they now might see me as battling a potentially devastating disease. I've become my diagnosis again. And that's what it boils down to for me. For a few blessed weeks, no one knew. I was me, without melanoma hanging a black cloud over my head. And I'm not that now. I don't like it. I liked being the me that might have been before that fateful call in June. And I can't be any longer. The ruse is up.
I know this makes me seem shallow and vain. It's because I am shallow and vain sometimes. I wanted to be judged on the merit of my work with making low income students successful, strong learners. I don't want to be the teacher who has skin cancer. I'm not that woman, I am so much more. I know I have time in the coming months to show exactly who I am. I also know that that time will forever now be tinged with the shade of melanoma. And I don't like it. Not at all. I'm strong enough to admit that now. I'm strong enough to admit being shallow and vain. It's ironic. The disease that gives me the strength to admit my weaknesses is the one I don't want to be judged for.
The information about me will spread through the ranks of my co-workers in the coming days. I'm not looking forward to the sympathy and dealing with it. (See my previous post about my inability to deal with it). I really need to come up with a polite, positive response to well meaning co-workers who find out about my diagnosis. Right now, I've got nothing but painful, uncomfortable honesty. My mom always did say "honesty is the best policy," so I think I'll start there. It's something more than I know what to say now.
Monday, September 5, 2011
Joy in unexpected ways
This weekend is the "official" last hurrah of summer. To our family, it felt like it ended three weeks ago when sschool started. On the other hand, this was our last chance to spend an extended summer weekend up in the mountains at my father-in-law's cabin.
I had lots and lots plans for projects to complete this summer at the cabin. My FIL is getting up there in age and the basic and not-so-basic maintenance has fallen by the wayside in the last few years. That combined with the boys getting older and us visiting there more often meant we needed to catch up. This was my original plan this summer. I was going to replace and fix long ago busted water lines, clean and seal a huge deck, install a new toilet/shower combo, and so on. Of course, none of this happened after that phone call in June and the subsequent procedures.
I spent the last two months visiting the cabin to heal my body physically and mentally. I really felt like I was operating with one arm on all those visits. It might have been my left, non-dominant arm but it still severely restricted my ability to do construction, projects and general heavy maintenance. This visit was wonderfully, gratefully different.
I got the last two sets of stitches out last week. Those wounds are healing far faster than the open wounds nearby that are almost 6 weeks older. My range of motion in my left arm is about 95% from the original site and I hardly suffer any discomfort from it any more. So, the projects were on.
Unfortunately, this weekend was only three days. So, we prioritized about what needed to get done before winter hits sometime in October, November, or December. (Yeah, it's that unpredictable in the Sierra Mountain Range). My FIL picked cleaning and sealing the large redwood deck. I simply did not care. DID NOT CARE. I just wanted to work. Really work. With no restrictions or conditions on my body. And I did. It felt so good. At least mentally. The physically sore part is NOT my back or left arm and I couldn't be happier about that. My legs and back are letting me know I used muscles long over rested. But I've never been so grateful to push my body physically and get a large project done. I had taken that ability for granted. I was so incredibly happy to be pressure washing, sealing, sweeping, cleaning, etc, etc, this weekend.
I almost felt normal. Almost. Maybe my new normal isn't far away.
I had lots and lots plans for projects to complete this summer at the cabin. My FIL is getting up there in age and the basic and not-so-basic maintenance has fallen by the wayside in the last few years. That combined with the boys getting older and us visiting there more often meant we needed to catch up. This was my original plan this summer. I was going to replace and fix long ago busted water lines, clean and seal a huge deck, install a new toilet/shower combo, and so on. Of course, none of this happened after that phone call in June and the subsequent procedures.
I spent the last two months visiting the cabin to heal my body physically and mentally. I really felt like I was operating with one arm on all those visits. It might have been my left, non-dominant arm but it still severely restricted my ability to do construction, projects and general heavy maintenance. This visit was wonderfully, gratefully different.
I got the last two sets of stitches out last week. Those wounds are healing far faster than the open wounds nearby that are almost 6 weeks older. My range of motion in my left arm is about 95% from the original site and I hardly suffer any discomfort from it any more. So, the projects were on.
Unfortunately, this weekend was only three days. So, we prioritized about what needed to get done before winter hits sometime in October, November, or December. (Yeah, it's that unpredictable in the Sierra Mountain Range). My FIL picked cleaning and sealing the large redwood deck. I simply did not care. DID NOT CARE. I just wanted to work. Really work. With no restrictions or conditions on my body. And I did. It felt so good. At least mentally. The physically sore part is NOT my back or left arm and I couldn't be happier about that. My legs and back are letting me know I used muscles long over rested. But I've never been so grateful to push my body physically and get a large project done. I had taken that ability for granted. I was so incredibly happy to be pressure washing, sealing, sweeping, cleaning, etc, etc, this weekend.
I almost felt normal. Almost. Maybe my new normal isn't far away.
Saturday, August 27, 2011
The power of laughter
I was lucky enough to be invited to celebrate a girlfriend's 40th birthday in wine country yesterday and today. I would only know her and two of her other good friends slightly, but the others were complete strangers to me. It made me nervous. Would I have fun? Could we relate to one another? Would it be weird especially since we (the 7 of us) were sharing just 2 hotel rooms?
On the way up, we ended up with 6 women in one car. The 7th came up later due to work. The trip started with us discussing how we knew the birthday girl. It ranged from 20+ years of friendship to 2 years. I started to notice the the 6 of us had a lot in common. The youngest woman was 38 and the oldest 42. Obviously, we were good friends with the same woman and it became apparent why as we sat in the car.
The final piece for me was the discussion later that night that started with, "do you remember.......?" I don't think I've laughed that hard in a very long time. And definitely not since June's news. These ladies and I were born and raised in a small window of time. And the 70's and 80's created some very .......ummm.... interesting cultural phenomenom. Need proof? Think neon paint splattered parachute pants, "16 candles," or rat tails. If you don't know what these are then you are obviously younger than me. Google image them.
Ironically, some of our training this past week at my school site centered on stress, its effects on your body and brain. A very powerful documentary. Here it is. Anyways, one of the "solutions" that the researchers talked about was how to alleviate this stress and its effects on our bodies. Of course, no surprise, one was laughter. I believe the timing of this weekend was no accident. Call is Karma, God, or any thing/power you believe it. I honestly think this weekend was as beneficial for me as it was for the birthday girl. I laughed so much stress out of my body that I was in tears. Real, huge, non-stop good tears. Trust me, I've cried a great deal since hearing the word melanoma but these tears were different. They were healing tears. Stress relieving tears. And most importantly, connection tears. I was part of a wonderful group of woman who came together to celebrate a mutual friend's momentous day. That laughter was more powerful than any drug and I'm grateful to have gotten a two month dose.
On the way up, we ended up with 6 women in one car. The 7th came up later due to work. The trip started with us discussing how we knew the birthday girl. It ranged from 20+ years of friendship to 2 years. I started to notice the the 6 of us had a lot in common. The youngest woman was 38 and the oldest 42. Obviously, we were good friends with the same woman and it became apparent why as we sat in the car.
The final piece for me was the discussion later that night that started with, "do you remember.......?" I don't think I've laughed that hard in a very long time. And definitely not since June's news. These ladies and I were born and raised in a small window of time. And the 70's and 80's created some very .......ummm.... interesting cultural phenomenom. Need proof? Think neon paint splattered parachute pants, "16 candles," or rat tails. If you don't know what these are then you are obviously younger than me. Google image them.
Ironically, some of our training this past week at my school site centered on stress, its effects on your body and brain. A very powerful documentary. Here it is. Anyways, one of the "solutions" that the researchers talked about was how to alleviate this stress and its effects on our bodies. Of course, no surprise, one was laughter. I believe the timing of this weekend was no accident. Call is Karma, God, or any thing/power you believe it. I honestly think this weekend was as beneficial for me as it was for the birthday girl. I laughed so much stress out of my body that I was in tears. Real, huge, non-stop good tears. Trust me, I've cried a great deal since hearing the word melanoma but these tears were different. They were healing tears. Stress relieving tears. And most importantly, connection tears. I was part of a wonderful group of woman who came together to celebrate a mutual friend's momentous day. That laughter was more powerful than any drug and I'm grateful to have gotten a two month dose.
Thursday, August 25, 2011
Funny things we say
The people who know me the best will tell you that I can say the oddest things at the oddest moments. Sometimes it is being shy, sometimes it's a mispronounced word, sometimes it's because I linked one thought in my head to another seemingly random thought, and so on. This melanoma journey has made me say things I'd never thought of and I'm sure I'm not the only melanoma patient who has said these and better yet, found them funny.
Here's just a short list:
Can I swim with an open wound?
Is this going to hurt later?
What about vaginal melanoma?
Why did this happen at 40?
Will my kids get melanoma?
And this is just the beginning. I can explain the rational behind all of the questions but as a list they are pretty darn funny. Some make me shake my head. And laugh again. The brain and thought process is an interesting thing when you find out you have a potentially life ending disease. This is part of my maturation process as a patient though. I learned to not be afraid to "ask the dumb questions." Sometimes the questions aren't so dumb. And sometimes, they just are. You consider yourself lucky when the doctor will answer them anyways with a smile on her face. Right before she asks if you were pulling her leg.
Who knows what other Einstein inspiring moments and comments I'll have. I'm sure there will be some gems. I'll try to remember them and write them down. This will show how the brain reacts under intense pressure and how funny it can be when dealing with a decidedly unfunny diagnosis.
Here's just a short list:
Can I swim with an open wound?
Is this going to hurt later?
What about vaginal melanoma?
Why did this happen at 40?
Will my kids get melanoma?
And this is just the beginning. I can explain the rational behind all of the questions but as a list they are pretty darn funny. Some make me shake my head. And laugh again. The brain and thought process is an interesting thing when you find out you have a potentially life ending disease. This is part of my maturation process as a patient though. I learned to not be afraid to "ask the dumb questions." Sometimes the questions aren't so dumb. And sometimes, they just are. You consider yourself lucky when the doctor will answer them anyways with a smile on her face. Right before she asks if you were pulling her leg.
Who knows what other Einstein inspiring moments and comments I'll have. I'm sure there will be some gems. I'll try to remember them and write them down. This will show how the brain reacts under intense pressure and how funny it can be when dealing with a decidedly unfunny diagnosis.
Wednesday, August 24, 2011
Going back to work
Today was my official back to work day. Just ignore the week I spent last week setting up a classroom and the two days this week tearing one room apart and moving to another room for a different grade level at a school about 1/2 mile away. Welcome to education. Teachers are very, very, very flexible in these budget times. In more ways than you can imagine.
Anyways, today was my first day with the ENTIRE staff of my new school. The old school knew of my melanoma diagnosis. Some I told directly and the rest found out through the caring and sharing that family members do. The support they gave me made last week and this week so easy to tolerate and deal with. There was no over-the-top sobbing and sympathy. You know how I feel about that. There was the general consensus of "Do you need anything?" and "That sucks." I loved the staff I was with because of that reaction alone. They are willing to help and brutally honest that melanoma, indeed does, totally suck. Not a single person said, "Well, I knew someone who...." or "I heard that...." Call me totally selfish and cruel, but I didn't really want to hear that. I just needed to know that I had support if I needed it and they understood "it sucked." And that's the important part. They were there for me without smothering me. And the district I work for said I needed to move. Sigh and double sigh!
So, I am now with a new staff. A staff that has absolutely no idea what my summer was like. And to be totally honest, I'm not sure how I feel about that. One part of me is completely thrilled that this new staff sees me as a new teacher who comes "highly recommended" from the bigwigs. (Yeah, that was good for my ego to hear on Tuesday). The other part of me wants the staff to understand why I am not so quick with hugs because I still have two sets of stitches and I managed to "bruise" my arm incision yesterday.
I thought long and hard today about this conflict I was feeling. It seemed to come down to whether they see me as a new teacher on their staff or as a teacher who has melanoma (aka is fighting cancer). Ok, big breath...... I'm not sure how I want them to see me right now. Part of me is done, totally done, with being a patient but the other part knows I cannot ignore what has happened the last two plus months. I will never, ever be free of the melanoma diagnosis. I just want to be NED (No Evidence of Disease).
So, I am at a stalemate as it were. I am NOT inclined to inform my new "family" of my melanoma status but I know that news will filter to them eventually. The good and bad of the school district I am in means that we are truly a family. Some times dysfunctional, but mostly good and loving, albeit on the smaller side compared to surrounding communities (aka San Francisco and San Jose). I would like for their initial judgement to come from how I am as a teacher, how I educate the most important members of our community, and how I work with them as fellow educators. When the news comes that I have/had a disease that is life altering, I want it to be an asterisk to my label as a teacher. I want to be known first as a teacher and second as someone who got dealt a crappy set of cards in the cancer poker game. After two full, heavy months of being a "patient," I'm ready to get back to being a "teacher."
Maybe it's Karma that I changed schools. Maybe it's a higher power caring for me. Maybe the kids at this site truly needed me more or I needed them more. Who knows? The next 190+ days will tell me. At least, that's what I am counting on when I went "back to work" today. I was a teacher today. Not A Patient. Not A Melanoma Target. Just simply a teacher.
Anyways, today was my first day with the ENTIRE staff of my new school. The old school knew of my melanoma diagnosis. Some I told directly and the rest found out through the caring and sharing that family members do. The support they gave me made last week and this week so easy to tolerate and deal with. There was no over-the-top sobbing and sympathy. You know how I feel about that. There was the general consensus of "Do you need anything?" and "That sucks." I loved the staff I was with because of that reaction alone. They are willing to help and brutally honest that melanoma, indeed does, totally suck. Not a single person said, "Well, I knew someone who...." or "I heard that...." Call me totally selfish and cruel, but I didn't really want to hear that. I just needed to know that I had support if I needed it and they understood "it sucked." And that's the important part. They were there for me without smothering me. And the district I work for said I needed to move. Sigh and double sigh!
So, I am now with a new staff. A staff that has absolutely no idea what my summer was like. And to be totally honest, I'm not sure how I feel about that. One part of me is completely thrilled that this new staff sees me as a new teacher who comes "highly recommended" from the bigwigs. (Yeah, that was good for my ego to hear on Tuesday). The other part of me wants the staff to understand why I am not so quick with hugs because I still have two sets of stitches and I managed to "bruise" my arm incision yesterday.
I thought long and hard today about this conflict I was feeling. It seemed to come down to whether they see me as a new teacher on their staff or as a teacher who has melanoma (aka is fighting cancer). Ok, big breath...... I'm not sure how I want them to see me right now. Part of me is done, totally done, with being a patient but the other part knows I cannot ignore what has happened the last two plus months. I will never, ever be free of the melanoma diagnosis. I just want to be NED (No Evidence of Disease).
So, I am at a stalemate as it were. I am NOT inclined to inform my new "family" of my melanoma status but I know that news will filter to them eventually. The good and bad of the school district I am in means that we are truly a family. Some times dysfunctional, but mostly good and loving, albeit on the smaller side compared to surrounding communities (aka San Francisco and San Jose). I would like for their initial judgement to come from how I am as a teacher, how I educate the most important members of our community, and how I work with them as fellow educators. When the news comes that I have/had a disease that is life altering, I want it to be an asterisk to my label as a teacher. I want to be known first as a teacher and second as someone who got dealt a crappy set of cards in the cancer poker game. After two full, heavy months of being a "patient," I'm ready to get back to being a "teacher."
Maybe it's Karma that I changed schools. Maybe it's a higher power caring for me. Maybe the kids at this site truly needed me more or I needed them more. Who knows? The next 190+ days will tell me. At least, that's what I am counting on when I went "back to work" today. I was a teacher today. Not A Patient. Not A Melanoma Target. Just simply a teacher.
Tuesday, August 23, 2011
And the results are in
I saw the doctor yesterday and got the stitches out of my arm. This scar has a slight S-curve to it now that the threading is gone. Pretty cool. At least better than a plain 'ol line. Apparently, I've become a scar critic with my 7 new ones from this summer. It's funny the lessons that melanoma can teach you.
The results of the biopsies were the same as before and expected, but with one twist. The lower area was completely benign and the upper one was dysplastic. I was positive it would be the other way around based on the appearance alone. This just goes to show you that this disease in sinister and doesn't play fair.
The stitches come out next week and I'm already thrilled with my decision to stick with closed wounds. I am able to avoid bandages and the pain is negligible compared to the open wound sites. Speaking of those first two, they itch like nothing I've ever experienced. It's enough to drive you crazy and keep you up at night, literally. I know it's a sign of healing but I just wish it'd go away soon. All it takes is a slight brush of my shirt to set off the itch again. I spend the next hour doing anything I can to not touch the area, even to rub it, trying to sooth the itch because I've learned that only makes it worse. It's that phenomenon that makes your nose itch when your hands are full. Next time you have an itch, try not to scratch it. See how long you can make it. And let me know what worked for you if you can survive. I'll take all suggestions right now.
The results of the biopsies were the same as before and expected, but with one twist. The lower area was completely benign and the upper one was dysplastic. I was positive it would be the other way around based on the appearance alone. This just goes to show you that this disease in sinister and doesn't play fair.
The stitches come out next week and I'm already thrilled with my decision to stick with closed wounds. I am able to avoid bandages and the pain is negligible compared to the open wound sites. Speaking of those first two, they itch like nothing I've ever experienced. It's enough to drive you crazy and keep you up at night, literally. I know it's a sign of healing but I just wish it'd go away soon. All it takes is a slight brush of my shirt to set off the itch again. I spend the next hour doing anything I can to not touch the area, even to rub it, trying to sooth the itch because I've learned that only makes it worse. It's that phenomenon that makes your nose itch when your hands are full. Next time you have an itch, try not to scratch it. See how long you can make it. And let me know what worked for you if you can survive. I'll take all suggestions right now.
Friday, August 19, 2011
Biopsy results
I had my 5th and 6th biopsies done yesterday. Luckily, she was able to close both of them with stitches. I've learned that when you mess with one area of your body over and over again, it doesn't like you much. I like to think I'm tough and can handle pain but having these two biopsies done were the most painful. My back has just had enough. And so have I, but this fight isn't over yet.
Also yesterday, the doctor looked at my arm stitches and said today was too early to take them out. The window for biopsy stitches is 9-12 days. I had the ones from the surgery in my back for 14 days, and looking at my arm showed that I need to be on the high end of the window. So, no appointment today and I will go in Monday to get them out. It's actually kind of a relief because every day this week, I've had an appointment for this disease. Today, I get to be free...at least as much as you can be with a sore back. I can't tell you how many times I've said, "Gentle hug" to my friends lately.
So, the arm results. It was another mixed bag. One of the two spots, the pink one actually turned out to be a form of a wart. Weird. I have/had no warts that I know of and it sure didn't look like one. Leave it to be to be the exception to the rule again. Unfortunately, the brown mole next to it was dysplastic. Low-Intermediate Grade. The doctor and I again talked about how frustrating it is to not have a "time line" for moles that are changing. She and I (and probably all melanoma patients) wish that there was a way to say, "Low grade dysplastic moles take 1 year to become cancerous, Intermediate grade 6 months" or something nice like that. Unfortunately, our bodies don't give us convenience. Heck, I of all people should know that since I am the exception to the melanoma rule in multiple ways. I sure wanted 6 benign results and so far, I'm batting 50%. Don't get me wrong, I am beyond thrilled that no other sites show melanoma. That was my worst fear, still is, but I'm 100% in that most important area.
I'm off to change bandages for the first time. These are the most gruesome of them but I'm not a huge bleeder so the rest should be clean and dry until the stitches come out in 11 more days.
Also yesterday, the doctor looked at my arm stitches and said today was too early to take them out. The window for biopsy stitches is 9-12 days. I had the ones from the surgery in my back for 14 days, and looking at my arm showed that I need to be on the high end of the window. So, no appointment today and I will go in Monday to get them out. It's actually kind of a relief because every day this week, I've had an appointment for this disease. Today, I get to be free...at least as much as you can be with a sore back. I can't tell you how many times I've said, "Gentle hug" to my friends lately.
So, the arm results. It was another mixed bag. One of the two spots, the pink one actually turned out to be a form of a wart. Weird. I have/had no warts that I know of and it sure didn't look like one. Leave it to be to be the exception to the rule again. Unfortunately, the brown mole next to it was dysplastic. Low-Intermediate Grade. The doctor and I again talked about how frustrating it is to not have a "time line" for moles that are changing. She and I (and probably all melanoma patients) wish that there was a way to say, "Low grade dysplastic moles take 1 year to become cancerous, Intermediate grade 6 months" or something nice like that. Unfortunately, our bodies don't give us convenience. Heck, I of all people should know that since I am the exception to the melanoma rule in multiple ways. I sure wanted 6 benign results and so far, I'm batting 50%. Don't get me wrong, I am beyond thrilled that no other sites show melanoma. That was my worst fear, still is, but I'm 100% in that most important area.
I'm off to change bandages for the first time. These are the most gruesome of them but I'm not a huge bleeder so the rest should be clean and dry until the stitches come out in 11 more days.
Thursday, August 18, 2011
More pictures
I'm overdue to post pictures. Again, a warning about grossness. It doesn't bug me, I'm way over the scars, but some it might bother some.
I show it because this is really what melanoma is all about....
This was my back two weeks after the open biopsies. The original site scar is healing nicely and only spreading a little, as I hoped. It took two weeks for the other sites to finally fight the infection and look nice and pink like this with new skin forming. The halo around the biopsy sites is from the adhesive of bandages being changed daily. Even the gentlest paper tape causes these new wounds. It is healing too. Wow, do I itch now though.
This is my forearm before.
And after. I much prefer this closed biopsy wound. It is so much easier to treat and recover from. The worst of it is the skin adapting to stretching to cover the now missing section. It took 4 days and I could easily straighten my arm to normal use. I get the stitches out tomorrow.
Off to two more biopsies on my back this morning.
Thursday, August 11, 2011
Biopsy #3 and #4
I had my two biopsies done yesterday like expected. I keep hoping they'll get cancelled last minute but they never do. And deep down, I don't want them too since I just want answers right now. Originally the doctor was going to separate the two moles since they were so close together. She ended up removing them as one single unit and after marking their location first. I don't think there is a right or wrong way to do this, maybe just a more cautious way. I trust her decision either way.
I did ask her to do a "closed" biopsy, if possible, because of the healing/infection issues I had with the sites (#1 & #2) on my back. She said she could but it'd mean an additional appointment to get the stitches removed. I told her that was OK with me as long as she didn't mind me taking up another slot. She said that was a non-issue for her and if it'd help me, she could do it. So, closed biopsy it was. (Pictures coming in next post)
The numbing medicine is great stuff. For a few hours after the procedure, I could actually forget, for a few minutes, that part of my skin was now missing. I lived life like normal. Unfortunately, it doesn't last forever. And when it wears off, it all goes together. No warning, no easing into it. Just WHAM..PAIN! You'd think I'd remember this from doing it so often lately, but my mind is being a little too kind to me. I seem to forget in a mere two weeks. My next biopsy is in 7 days, I won't forget by next week.
I've decided to invest in a flesh colored sleeve, designed to cover tattoos, to wear the first few weeks of school. I know the stitches will be out the Friday before my first students arrive but the wound will be very visible and still raw. The sleeve will allow me to protect the arm/wound because most are SPF50 and I'll probably add some gauze for additional padding. Fourth graders are not very coordinated, trust me. And neither am I.
Today, I will walk around like a wanna be Napoleon, with my arm bent about 90degrees to allow the skin to stretch to adapt to the missing section. I'm tempted to sling it just to remind me to not reach for anything quickly which would make it hurt more and/or rip out stitches. It may seem like a little much but we are hosting a kids birthday party tonight and I know I will forget, however temporarily, that my arm shouldn't be stretched fully yet. It's the mom in me. I don't slow down well but I am learning. Some times painfully.
Next post......more graphic photos.
I did ask her to do a "closed" biopsy, if possible, because of the healing/infection issues I had with the sites (#1 & #2) on my back. She said she could but it'd mean an additional appointment to get the stitches removed. I told her that was OK with me as long as she didn't mind me taking up another slot. She said that was a non-issue for her and if it'd help me, she could do it. So, closed biopsy it was. (Pictures coming in next post)
The numbing medicine is great stuff. For a few hours after the procedure, I could actually forget, for a few minutes, that part of my skin was now missing. I lived life like normal. Unfortunately, it doesn't last forever. And when it wears off, it all goes together. No warning, no easing into it. Just WHAM..PAIN! You'd think I'd remember this from doing it so often lately, but my mind is being a little too kind to me. I seem to forget in a mere two weeks. My next biopsy is in 7 days, I won't forget by next week.
I've decided to invest in a flesh colored sleeve, designed to cover tattoos, to wear the first few weeks of school. I know the stitches will be out the Friday before my first students arrive but the wound will be very visible and still raw. The sleeve will allow me to protect the arm/wound because most are SPF50 and I'll probably add some gauze for additional padding. Fourth graders are not very coordinated, trust me. And neither am I.
Today, I will walk around like a wanna be Napoleon, with my arm bent about 90degrees to allow the skin to stretch to adapt to the missing section. I'm tempted to sling it just to remind me to not reach for anything quickly which would make it hurt more and/or rip out stitches. It may seem like a little much but we are hosting a kids birthday party tonight and I know I will forget, however temporarily, that my arm shouldn't be stretched fully yet. It's the mom in me. I don't slow down well but I am learning. Some times painfully.
Next post......more graphic photos.
Monday, August 8, 2011
Going public
All of this melanoma battle to date has occurred on my back. Obviously an area that I can hide easily if I want to. The only thing that might have given me away was the first 10 days of bulky bandages after the second excision. Otherwise, going public was something I did by choice. No one knew unless I told them. On Wednesday, I will no longer have that option.
My next two biopsy sites are on my left arm. They are close together so I'll probably just have a single wound. I'm going to ask her to try to do a closed excision because of the infection issues I had with the last two open ones. Either way, I will have a very visible injury to my left forearm just below the inner crease of my elbow. I know I could wear long sleeves but the thought of doing that in summer makes me miserable. So, my battle becomes public whether I say something or not.
So, this brings me to the dilemma of what to say when some well meaning stranger makes comment about the bandaged arm. And worse yet, what do I stay to my brand new students when they ask. Strangers I'll be very inclined to be honest and direct. I will probably say something like, "I have melanoma (or skin cancer) and the doctor is trying to find out if I have any more sites." If I'm feeling particularly preach-y that day I may add in that I think my baby oil suntanning days are to blame. My students are another matter. I'm not ready to have that conversation yet. And honestly, I don't feel like they, and their families, need to know. I think I'll settle with the most believable stretch of the truth and say I hurt myself out running. And leave it at that.
Am I in denial? Am I afraid to go public? Maybe yes to both. And I'm not sure why.
My next two biopsy sites are on my left arm. They are close together so I'll probably just have a single wound. I'm going to ask her to try to do a closed excision because of the infection issues I had with the last two open ones. Either way, I will have a very visible injury to my left forearm just below the inner crease of my elbow. I know I could wear long sleeves but the thought of doing that in summer makes me miserable. So, my battle becomes public whether I say something or not.
So, this brings me to the dilemma of what to say when some well meaning stranger makes comment about the bandaged arm. And worse yet, what do I stay to my brand new students when they ask. Strangers I'll be very inclined to be honest and direct. I will probably say something like, "I have melanoma (or skin cancer) and the doctor is trying to find out if I have any more sites." If I'm feeling particularly preach-y that day I may add in that I think my baby oil suntanning days are to blame. My students are another matter. I'm not ready to have that conversation yet. And honestly, I don't feel like they, and their families, need to know. I think I'll settle with the most believable stretch of the truth and say I hurt myself out running. And leave it at that.
Am I in denial? Am I afraid to go public? Maybe yes to both. And I'm not sure why.
Friday, August 5, 2011
In sickness and in health
I've been married for almost 10 years, together a few more. There are different vows for each marriage. I wanted mostly traditional without the whole "obey" part and throw in some island references since we got married in Hawaii. I like the traditional part of the vows because it is a reminder that marriage isn't easy for anyone but that you are getting a life partner to help you through those bumps in the road.
When my hubby and I said our vows, we were already in the sickness part. He was facing a potentially devastating and life altering injury. Worst case scenario his condition would worsen and paralysis could continue to develop and become permanent. Best case scenario, he would heal over time and we could delay surgery until technology evolved some more. I knew this when I promised him "in sickness and in health." And I had no problems or hesitation in saying them. I meant every word and I still do.
So why was I so quick to offer him an out when I became sick with the melanoma diagnosis? I guess I didn't want to hold him to our vows. I wanted to let him out when he could move on in case it got worse. And you know what his response was? Of course, he meant our vows as much as I did. He had no intention of not honoring them. Even with my offer.
I am hopeful that this too will pass and I will heal just as my husband did. Either way, I'm glad I said those vows almost 10 years ago. And this is a nice reminder of why I said them and why they mean so much to me. Now just don't get me started on the "until death due us part." I don't plan on enacting that section any time soon.
When my hubby and I said our vows, we were already in the sickness part. He was facing a potentially devastating and life altering injury. Worst case scenario his condition would worsen and paralysis could continue to develop and become permanent. Best case scenario, he would heal over time and we could delay surgery until technology evolved some more. I knew this when I promised him "in sickness and in health." And I had no problems or hesitation in saying them. I meant every word and I still do.
So why was I so quick to offer him an out when I became sick with the melanoma diagnosis? I guess I didn't want to hold him to our vows. I wanted to let him out when he could move on in case it got worse. And you know what his response was? Of course, he meant our vows as much as I did. He had no intention of not honoring them. Even with my offer.
I am hopeful that this too will pass and I will heal just as my husband did. Either way, I'm glad I said those vows almost 10 years ago. And this is a nice reminder of why I said them and why they mean so much to me. Now just don't get me started on the "until death due us part." I don't plan on enacting that section any time soon.
Monday, August 1, 2011
The good and the eehhh news
I had two biopsies done on Wednesday morning. Both were on my back. One looked weird and one looked like an early version of the melanoma mole. Even after being diagnosed with melanoma and looking at a mole that was similar, I still believed I'd get two "benign mole" reports. I did...kinda.
The upper mole, closest to the original site was completely benign. No issues, no problems, please pass go and collect your $200 in relief. The other mole was about 6 inches due south. It was the one that had the tinges of pink around the edges, the "I think I've seen this before" mole, the "this doesn't feel right" mole. It turns out the news was good with out being so great. The mole was not melanoma. I should be celebrating right?? Unfortunately, I can't. The mole was labeled "displastic," (spelling??) which means it had started to change, evolve, morph, whatever but wasn't yet skin cancer. Yet! There's no time line for these things. How long until it turned into melanoma? No one knows.
So, how do I view this latest development? I will admit to being crushed. Totally crushed. I had really wanted two benign, don't-waste-our-time moles. I didn't want a well-we-caught-it-before-skin-cancer mole. This development does nothing to ease my worry about not catching a bad mole. I have long told anyone who will listen to me that it isn't the moles that are being biopsied that worry me, it's the one or ones we might miss. And when you are covered in moles and freckles like I am, that statistical possibility is very real.
I recently found a study that said if you have 50 or more moles or freckles, your risk of skin cancer (any type) is increased. Reading this study made me laugh. I read it out loud for my husband when he asked what I was laughing at on my computer. I read it verbatim to him. His serious response was, "What part of your body?" I answered, "Exactly." You see, I can count 50 moles on freckles on most extremities. Each extremity. Seriously. I was blessed in that category. I would come home from high school some days with dot-to-dot designs drawn on my arms. (My mom always knew I was paying attention that day). So, in statistical sense, in light of that study, I'm screwed. The simple odds say that we, the doctors and I might miss one. And that's a crushing thought. Especially in light of these biopsy results.
I was paranoid before about changes I thought I saw in moles. This latest series of results does not help ease my concerns. The easiest solution is digital mapping/photography of every mole. I'm working on that. It's the best way currently to monitor the changes. It isn't perfect and it isn't guaranteed to keep me from developing melanoma again. I can never, ever again assume that because I mole might have looked that way before that it can't kill me. That is the new normal for me. And it still scares the hell out of me.
The upper mole, closest to the original site was completely benign. No issues, no problems, please pass go and collect your $200 in relief. The other mole was about 6 inches due south. It was the one that had the tinges of pink around the edges, the "I think I've seen this before" mole, the "this doesn't feel right" mole. It turns out the news was good with out being so great. The mole was not melanoma. I should be celebrating right?? Unfortunately, I can't. The mole was labeled "displastic," (spelling??) which means it had started to change, evolve, morph, whatever but wasn't yet skin cancer. Yet! There's no time line for these things. How long until it turned into melanoma? No one knows.
So, how do I view this latest development? I will admit to being crushed. Totally crushed. I had really wanted two benign, don't-waste-our-time moles. I didn't want a well-we-caught-it-before-skin-cancer mole. This development does nothing to ease my worry about not catching a bad mole. I have long told anyone who will listen to me that it isn't the moles that are being biopsied that worry me, it's the one or ones we might miss. And when you are covered in moles and freckles like I am, that statistical possibility is very real.
I recently found a study that said if you have 50 or more moles or freckles, your risk of skin cancer (any type) is increased. Reading this study made me laugh. I read it out loud for my husband when he asked what I was laughing at on my computer. I read it verbatim to him. His serious response was, "What part of your body?" I answered, "Exactly." You see, I can count 50 moles on freckles on most extremities. Each extremity. Seriously. I was blessed in that category. I would come home from high school some days with dot-to-dot designs drawn on my arms. (My mom always knew I was paying attention that day). So, in statistical sense, in light of that study, I'm screwed. The simple odds say that we, the doctors and I might miss one. And that's a crushing thought. Especially in light of these biopsy results.
I was paranoid before about changes I thought I saw in moles. This latest series of results does not help ease my concerns. The easiest solution is digital mapping/photography of every mole. I'm working on that. It's the best way currently to monitor the changes. It isn't perfect and it isn't guaranteed to keep me from developing melanoma again. I can never, ever again assume that because I mole might have looked that way before that it can't kill me. That is the new normal for me. And it still scares the hell out of me.
Wednesday, July 27, 2011
Three docs in one day
In the past, I saw my regular doctor once or twice a year. Usually for running related stuff, aka broken toes, plantar fascitus (sp?). Up until this melanoma diagnosis, I had seen him twice this year. Once when I got the flu, for the first time ever, and the dermatologist referral. In a normal year, I probably would have seen him once more because I fell running and "busted" something. I tripled that in one day. Today!
So, here's the list of visits:
9:30am Two biopsies on my back. One a mere inch from my original site incision. Numbing shots have never hurt so much. One mole looks like the original one but smaller. The other is just.. well..... weird. (Pictures later after results are in). The tattoos will have to wait. The tiny, numbing needle about launched me off the table. Each! And! Every! Time! She! Used! It!
11:30 Lunch with one of my best friends. I'm already convinced it helped me survive the day. Talking with her reminds me of the power of friendship and laughter. And how incredibly blessed I am to have her, and all my other friends, in my life.
2:45 pm Primary doctor for a referral to the melanoma specialist, a formality required by my insurance, and some lymph node squeezing for good measure. Getting your neck squeezed like that is a weird sensation. Not painful, but uncomfortably weird. Not choking tight but survival instincts kick in. Underarms and groin were no biggie. After grabbing my neck, I was over the weirdness of the lymph node examination.
3:45 pm Yearly Ob/Gyn with some discussion of recent scientific correlation between melanoma and breast cancer. I walked out with a mammogram referral. Keep in mind, I had to lay on my freshly flayed back for this appointment and the numbing agent had definitely worn off. God bless the doctor for saying she'd go as fast as she could and boy, did she ever. And she did call my scar "cool." Think I'll keep her. She's going to consult an oncologist/geneologist for the whole melanoma/breast cancer testing.
These appointments may seem only slightly related, but they are so closely intertwined that I felt like I saw my 'medical team' today. Every minute of every appointment was some how related to my melanoma status. And I felt like all three appointments moved me closer to that wonderful Survivor Status I so desperately want one day in the near future. And none of the doctors wrote off my concerns, requests, or worries. What a wonderful feeling to walk away with. And I never once felt uncomfortable sharing these concerns, requests, or worries. That was a new, wonderful feeling too. I may be physically battered and bruised, literally, but mentally today was a huge step forward as my status as a patient.
So, the next step. I get the results from the biopsies on Friday or Monday. The results from the Pap in the next 3 to 4 weeks. The results of the mammogram 2 to 4 weeks after my appointment (pending). And I get the results of the referral with an appointment in the next few weeks. Whew. Now you know why I keep a journal and write it all down or tape the papers in as I get them. I strongly!!!!! recommend this for any patient facing a life altering diagnosis, no matter what it is.
So, here's the list of visits:
9:30am Two biopsies on my back. One a mere inch from my original site incision. Numbing shots have never hurt so much. One mole looks like the original one but smaller. The other is just.. well..... weird. (Pictures later after results are in). The tattoos will have to wait. The tiny, numbing needle about launched me off the table. Each! And! Every! Time! She! Used! It!
11:30 Lunch with one of my best friends. I'm already convinced it helped me survive the day. Talking with her reminds me of the power of friendship and laughter. And how incredibly blessed I am to have her, and all my other friends, in my life.
2:45 pm Primary doctor for a referral to the melanoma specialist, a formality required by my insurance, and some lymph node squeezing for good measure. Getting your neck squeezed like that is a weird sensation. Not painful, but uncomfortably weird. Not choking tight but survival instincts kick in. Underarms and groin were no biggie. After grabbing my neck, I was over the weirdness of the lymph node examination.
3:45 pm Yearly Ob/Gyn with some discussion of recent scientific correlation between melanoma and breast cancer. I walked out with a mammogram referral. Keep in mind, I had to lay on my freshly flayed back for this appointment and the numbing agent had definitely worn off. God bless the doctor for saying she'd go as fast as she could and boy, did she ever. And she did call my scar "cool." Think I'll keep her. She's going to consult an oncologist/geneologist for the whole melanoma/breast cancer testing.
These appointments may seem only slightly related, but they are so closely intertwined that I felt like I saw my 'medical team' today. Every minute of every appointment was some how related to my melanoma status. And I felt like all three appointments moved me closer to that wonderful Survivor Status I so desperately want one day in the near future. And none of the doctors wrote off my concerns, requests, or worries. What a wonderful feeling to walk away with. And I never once felt uncomfortable sharing these concerns, requests, or worries. That was a new, wonderful feeling too. I may be physically battered and bruised, literally, but mentally today was a huge step forward as my status as a patient.
So, the next step. I get the results from the biopsies on Friday or Monday. The results from the Pap in the next 3 to 4 weeks. The results of the mammogram 2 to 4 weeks after my appointment (pending). And I get the results of the referral with an appointment in the next few weeks. Whew. Now you know why I keep a journal and write it all down or tape the papers in as I get them. I strongly!!!!! recommend this for any patient facing a life altering diagnosis, no matter what it is.
Monday, July 25, 2011
Making assumptions
This journey has been a not so comfortable reminder about making assumptions. I can hear my mother's voice saying, "You know making an assumption makes something out of you and me." (My mother NEVER swore until I was an adult). So, every time I hear the word I wonder who is being made an a$$ out of... and lately, it's been me.
I'd like to think that I never took anything for granted before mid June. Yep, that was a not so nice slap across the face of realization. I sure take a lot less things for granted now that I view the world through different eyes. Melanoma shaded eyes.
When I had the first biopsy done of the site, it was the usual nickel sized wound. When the doctor told me I'd need another excision, I thought it'd take 10-20 minutes and leave me with a quarter sized wound. Oh ya, you've seen the pictures...... I was the a$$ in that scenario. In my own defense, I had just heard the words "malignant melanoma," aka "you have cancer." It still doesn't excuse my inability to ask what this procedure entailed.
So I walked in the doc's office completely oblivious about what was to come. I walked out 3 hours later just stunned at the amount of work that had just happened to my body. It was a very painful reminder of "Ask the question."
Every time I get uncomfortable asking a question and speaking up for my care, I remind myself of that experience. I need to know what is going on with me and lately, I have fully realized I DESERVE to know what is going on with me. I am fighting for my life. Some how, some way, I need those answers. I can't assume that I am in the 90% of the statistical survival rate for my initial biopsy. I need the answers, not assumptions, that I will not be in the 10% mortality rate. And that's assuming they do not find any other melanoma locations on the skin or lymph node issues. (No, I'm not assuming I'm clear until I see benign listed on lots of medical reports)
So, one last assumption..... I will survive melanoma. In this situation, the a$$ is going to be the disease. It assumed it could beat me and I have no intention of letting it. Melanoma picked the wrong girl to assume it could take out.
I'd like to think that I never took anything for granted before mid June. Yep, that was a not so nice slap across the face of realization. I sure take a lot less things for granted now that I view the world through different eyes. Melanoma shaded eyes.
When I had the first biopsy done of the site, it was the usual nickel sized wound. When the doctor told me I'd need another excision, I thought it'd take 10-20 minutes and leave me with a quarter sized wound. Oh ya, you've seen the pictures...... I was the a$$ in that scenario. In my own defense, I had just heard the words "malignant melanoma," aka "you have cancer." It still doesn't excuse my inability to ask what this procedure entailed.
So I walked in the doc's office completely oblivious about what was to come. I walked out 3 hours later just stunned at the amount of work that had just happened to my body. It was a very painful reminder of "Ask the question."
Every time I get uncomfortable asking a question and speaking up for my care, I remind myself of that experience. I need to know what is going on with me and lately, I have fully realized I DESERVE to know what is going on with me. I am fighting for my life. Some how, some way, I need those answers. I can't assume that I am in the 90% of the statistical survival rate for my initial biopsy. I need the answers, not assumptions, that I will not be in the 10% mortality rate. And that's assuming they do not find any other melanoma locations on the skin or lymph node issues. (No, I'm not assuming I'm clear until I see benign listed on lots of medical reports)
So, one last assumption..... I will survive melanoma. In this situation, the a$$ is going to be the disease. It assumed it could beat me and I have no intention of letting it. Melanoma picked the wrong girl to assume it could take out.
Friday, July 22, 2011
Pictures....
I promised to share pictures. The first one is reversed because I took it in the mirror. The next two were taken by my husband and young son. I obviously got over asking someone to help me take pictures. It's amazing how quickly I got over that. There are slightly graphic, so if you are at all uncomfortable, keep moving on.
The mole in the center is the one that was melanoma. Doesn't look like much huh?
These are my stitches two weeks after getting them and one day before getting them removed.
This is the area a week after having the stitches out. It's been another week and the redness is a little better, but not much.
Ironically, the mole that the scar is pointing to is one that will probably get the heave-ho in one of my upcoming biopsy appointments. And another one can be seen in the first picture just past my bra strap.
Now the joke I've been using is that I need a zipper tattoo for the scar. I don't really want a zipper tattoo but a tattoo of some type is in order......when I can fathom the thought a needle near that area. It might be a while for that, so I have a long time to decide. Right now, Rosie the Riveter is my leading idea. I have always loved that iconic design and now even more.
Ironically, the mole that the scar is pointing to is one that will probably get the heave-ho in one of my upcoming biopsy appointments. And another one can be seen in the first picture just past my bra strap.
Now the joke I've been using is that I need a zipper tattoo for the scar. I don't really want a zipper tattoo but a tattoo of some type is in order......when I can fathom the thought a needle near that area. It might be a while for that, so I have a long time to decide. Right now, Rosie the Riveter is my leading idea. I have always loved that iconic design and now even more.
Monday, July 18, 2011
And the journey starts..
How do you start a blog about melanoma?
Should I start with some words of wisdom? I guess I would if I had some.
Should I start with facts about melanoma? I would if my brain wasn't overwhelmed with them.
Should I start with my story? I guess that's the easiest, least emotional way to start this party.
So, here's my story. I'm 40. I have two wonderful, beautiful. amazing, bilingual children. (More on them later). I'm married to a man whom I still wonder how I caught. I'm a second year elementary teacher who knows she's lucky to have a job in California education right now. And now I'm a cancer warrior.
I can't say that I'm surprised that I was diagnosed with cancer. It's the only thing my family, that I know of, has ever died of. Really! We've avoided murder, car accidents, heart attacks and everything else. I thought my Grandfather might be the first to actually live past his 60's and not die of cancer. Unfortunately, it came back and got him in the end. Luckily, it was round 2 that got him at 82 years old.
My family has had:
breast cancer,
colorectal cancer,
jaw cancer,
throat/palette cancer,
prostrate cancer, and
of course, skin cancer.
And this is with limited knowledge of my birth mother's family history. Sure makes you want to join my family doesn't it? So, I never underwent testing to see if I had the "cancer gene." I know I have it.
In light of all of this somewhat limited history, I go in for regular OB/Gyn visits and I've already had a mammogram in my 30's. I had 4 skin biopsies about 3 years ago. I don't smoke, so the jaw, throat cancers are not a huge concern. And then I noticed another mole that didn't look quite right. That's what started this journey.
I went to my primary care physician for the dermatologist referral since it'd been more than a year from my last visit and my insurance requires it. It took me 2 months to see him. I told him why I was there and what I needed. He looked at the spot in question and said, "This one?" Yes, I reply. "It doesn't look like cancer." Luckily, I didn't rest on that initial assessment. I told him I needed to have it checked by a specialist and he wrote the referral. I saw the dermatologist about a month later and her comments were almost the same. Here was a person who saw skin conditions every day of her working life. And she wasn't worried. She did tell me that she wanted it off soon and we tried to schedule the biopsy for the following week. This was early May 2011. Unfortunately, the insurance company had an issue with her notes and denied the biopsy without further notes. To make the original appointment I had called in a personal favor and had a sub cover the first half of a work day for me. I got a call about a half hour before my appointment to cancel it. Due to schedules, mine and the doctors, I rescheduled the biopsy for the week after summer break started, mid June. I still wonder if that 6 week delay made a significant difference.
The biopsy went off without a hitch. The usual discomfort, maximum numbing agent (I'm resistant to it) and out the door I went. I asked about results and she said she usually tells her patients when they come in for wound re-check but if it made me nervous, I could call on Friday and see if the lab results were back. I told her I wasn't worried and would just see her the following week. I knew I was headed up to the Sierra Mountains, where there is blessedly no cell signal and no phones and no TV. I honestly was not worried. I was worried three years ago when I did this the first four times, but this time, phhft - not worried.
I can honestly say that I've never had a doctor call me personally. Of course, I've had lots of nurses and medical assistants call me over the years, but never the doctor herself/himself. The dermatologist tried to call me twice on Friday night. Once at 630p.m. and again at 730p.m., both time giving me direct numbers to her office. I got these messages on Sunday afternoon while driving back to civilization. I had my Father-in-law in the car with me and he is a multi-cancer survivor and was my sounding board. We talked through what the messages might mean and we settled on an infection that would benefit from immediate antibiotics or basal cell sarcoma, the least malicious of skin cancers. I brought up my niggling fears of melanoma and he reminded me how statistically rare it was especially for someone of my young age. It was a long night of worrying but because I wasn't worried about "the worst," I will say I slept pretty well. Ironically, it would be my last night of decent sleep to date.
So, what's it like when you hear those words? I'm sure it's different and exactly the same for all of us. The disbelief, the shock, the why-me. the never-forget-where-you-were moment in time. I had made myself wait until after 9a.m. to call. It worked out that the boys were in swim lessons that week and my husband called in sick to work to see the doctor himself. So, I was sitting poolside, on my cell phone when I called the doctor back. I have never been transferred to a doctor, let alone to one so quickly. Her words were kind and to the point. "The pathology report came in and you have malignant melanoma." (At least that's the words I remember her saying). At this point, I couldn't breath. I couldn't think, I didn't know what to do. My world had stopped. I had cancer. Skin Cancer. The rarest but most deadly version.
Luckily, the doctor took over the conversation and told me that my next appointment would no longer be a re-check but an extensive excision to remove a large section of the area of my back by my left shoulder blade. I was just aware enough to realize I wasn't with it and I requested a copy of the pathology report. I'm so glad I did because when my brain kicked in later, this piece of paper because the basis of my battle plans.
I had made the phone call to the doctor on my cell phone, and to not be rude, I had walked away from all of the other parents who were sitting pool side watching their kids start their lessons. After disconnecting the call, I walked back over to where my husband was sitting and plopped down. I couldn't breath, I couldn't feel my body, I couldn't even process what I had just heard. My husband looked at me and said, "What did she say?" I choked back a sob, leaned on his shoulder and said, "Melanoma." He put his arm around me and said the best thing he could have, "I'm sorry." We sat in silence for many minutes, me wiping tears from behind my sunglasses and him with his arm around me offering me comfort the only way he knew how.
This is how my journey started. I know I will never, ever forget every minute detail about that pool deck, what I was wearing, the details, the feelings. It is a life altering moment. The same as when your children are born. And as I sat poolside that morning, I watched my children swim without any idea of how their mother's life had just changed. And as I continued to watch them swim, I went into battle mode. I refused to entertain the idea that my children, 6 and 8 years old, would be left on this earth without their mother. I decided right then and there, I would do everything I could to be a pain in their backsides for many, many, many years to come. And I haven't stopped fighting for that 3 weeks later.
I decided to start a blog to allow myself a place to share and a place for others to learn from. I figure that's the teacher in me. If I can write something, just one thing, that convinces someone to see a dermatologist, to trust their instincts, or to know they aren't alone... then I will be thrilled. If no one sees this, that's ok too. I am writing as much for me as I am for others. I will post the few pictures I have because even now, when I search melanoma photographs, none of them look like mine. I will update as I go and share what I can.
The journey has only begun but I plan on winning!
Should I start with some words of wisdom? I guess I would if I had some.
Should I start with facts about melanoma? I would if my brain wasn't overwhelmed with them.
Should I start with my story? I guess that's the easiest, least emotional way to start this party.
So, here's my story. I'm 40. I have two wonderful, beautiful. amazing, bilingual children. (More on them later). I'm married to a man whom I still wonder how I caught. I'm a second year elementary teacher who knows she's lucky to have a job in California education right now. And now I'm a cancer warrior.
I can't say that I'm surprised that I was diagnosed with cancer. It's the only thing my family, that I know of, has ever died of. Really! We've avoided murder, car accidents, heart attacks and everything else. I thought my Grandfather might be the first to actually live past his 60's and not die of cancer. Unfortunately, it came back and got him in the end. Luckily, it was round 2 that got him at 82 years old.
My family has had:
breast cancer,
colorectal cancer,
jaw cancer,
throat/palette cancer,
prostrate cancer, and
of course, skin cancer.
And this is with limited knowledge of my birth mother's family history. Sure makes you want to join my family doesn't it? So, I never underwent testing to see if I had the "cancer gene." I know I have it.
In light of all of this somewhat limited history, I go in for regular OB/Gyn visits and I've already had a mammogram in my 30's. I had 4 skin biopsies about 3 years ago. I don't smoke, so the jaw, throat cancers are not a huge concern. And then I noticed another mole that didn't look quite right. That's what started this journey.
I went to my primary care physician for the dermatologist referral since it'd been more than a year from my last visit and my insurance requires it. It took me 2 months to see him. I told him why I was there and what I needed. He looked at the spot in question and said, "This one?" Yes, I reply. "It doesn't look like cancer." Luckily, I didn't rest on that initial assessment. I told him I needed to have it checked by a specialist and he wrote the referral. I saw the dermatologist about a month later and her comments were almost the same. Here was a person who saw skin conditions every day of her working life. And she wasn't worried. She did tell me that she wanted it off soon and we tried to schedule the biopsy for the following week. This was early May 2011. Unfortunately, the insurance company had an issue with her notes and denied the biopsy without further notes. To make the original appointment I had called in a personal favor and had a sub cover the first half of a work day for me. I got a call about a half hour before my appointment to cancel it. Due to schedules, mine and the doctors, I rescheduled the biopsy for the week after summer break started, mid June. I still wonder if that 6 week delay made a significant difference.
The biopsy went off without a hitch. The usual discomfort, maximum numbing agent (I'm resistant to it) and out the door I went. I asked about results and she said she usually tells her patients when they come in for wound re-check but if it made me nervous, I could call on Friday and see if the lab results were back. I told her I wasn't worried and would just see her the following week. I knew I was headed up to the Sierra Mountains, where there is blessedly no cell signal and no phones and no TV. I honestly was not worried. I was worried three years ago when I did this the first four times, but this time, phhft - not worried.
I can honestly say that I've never had a doctor call me personally. Of course, I've had lots of nurses and medical assistants call me over the years, but never the doctor herself/himself. The dermatologist tried to call me twice on Friday night. Once at 630p.m. and again at 730p.m., both time giving me direct numbers to her office. I got these messages on Sunday afternoon while driving back to civilization. I had my Father-in-law in the car with me and he is a multi-cancer survivor and was my sounding board. We talked through what the messages might mean and we settled on an infection that would benefit from immediate antibiotics or basal cell sarcoma, the least malicious of skin cancers. I brought up my niggling fears of melanoma and he reminded me how statistically rare it was especially for someone of my young age. It was a long night of worrying but because I wasn't worried about "the worst," I will say I slept pretty well. Ironically, it would be my last night of decent sleep to date.
So, what's it like when you hear those words? I'm sure it's different and exactly the same for all of us. The disbelief, the shock, the why-me. the never-forget-where-you-were moment in time. I had made myself wait until after 9a.m. to call. It worked out that the boys were in swim lessons that week and my husband called in sick to work to see the doctor himself. So, I was sitting poolside, on my cell phone when I called the doctor back. I have never been transferred to a doctor, let alone to one so quickly. Her words were kind and to the point. "The pathology report came in and you have malignant melanoma." (At least that's the words I remember her saying). At this point, I couldn't breath. I couldn't think, I didn't know what to do. My world had stopped. I had cancer. Skin Cancer. The rarest but most deadly version.
Luckily, the doctor took over the conversation and told me that my next appointment would no longer be a re-check but an extensive excision to remove a large section of the area of my back by my left shoulder blade. I was just aware enough to realize I wasn't with it and I requested a copy of the pathology report. I'm so glad I did because when my brain kicked in later, this piece of paper because the basis of my battle plans.
I had made the phone call to the doctor on my cell phone, and to not be rude, I had walked away from all of the other parents who were sitting pool side watching their kids start their lessons. After disconnecting the call, I walked back over to where my husband was sitting and plopped down. I couldn't breath, I couldn't feel my body, I couldn't even process what I had just heard. My husband looked at me and said, "What did she say?" I choked back a sob, leaned on his shoulder and said, "Melanoma." He put his arm around me and said the best thing he could have, "I'm sorry." We sat in silence for many minutes, me wiping tears from behind my sunglasses and him with his arm around me offering me comfort the only way he knew how.
This is how my journey started. I know I will never, ever forget every minute detail about that pool deck, what I was wearing, the details, the feelings. It is a life altering moment. The same as when your children are born. And as I sat poolside that morning, I watched my children swim without any idea of how their mother's life had just changed. And as I continued to watch them swim, I went into battle mode. I refused to entertain the idea that my children, 6 and 8 years old, would be left on this earth without their mother. I decided right then and there, I would do everything I could to be a pain in their backsides for many, many, many years to come. And I haven't stopped fighting for that 3 weeks later.
I decided to start a blog to allow myself a place to share and a place for others to learn from. I figure that's the teacher in me. If I can write something, just one thing, that convinces someone to see a dermatologist, to trust their instincts, or to know they aren't alone... then I will be thrilled. If no one sees this, that's ok too. I am writing as much for me as I am for others. I will post the few pictures I have because even now, when I search melanoma photographs, none of them look like mine. I will update as I go and share what I can.
The journey has only begun but I plan on winning!
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