That Ah Ha (aka UH OH) Moment

I have had a couple of disturbing conversations recently regarding skin cancer.  It seems that if someone has had a non-melanoma form of skin cancer, they often don't know what type they had or what their risk of it returning is.  I will be honest, I confuse them too.  I know that the names indicate which layer of the skin it is located and how it will grow.  I also know that one has a risk of returning and the other I'm not so sure of.  I know I need to do more research myself too, but my priority has been on melanoma and the risks and dangers associated with it.  Yes, practicing sun safety can prevent all forms of skin cancer.  I guess I am just biased.  I need to fix that.  I also know a couple of people who have had melanoma, had it removed, and never went for the follow up exams as recommended by their doctor, because "It's just skin cancer".

To me, this is the perfect example of why doctors need to do a better job at informing patients about skin cancer.  We need to all get the word and the resources out there.  Pretty much all I know is what I have learned on my own, courtesy of the internet and others who are on the same journey.

When I was diagnosed, it took a few days for the realization to kick in.  Like I have said before, my doctor has a personality that is comforting, not alarming, but will get you excited about what is going on.  That is a good thing and a bad thing.  I hung up with her ready to march into battle, "okay, we are going to call the surgeon, get this cut off, here's how it'll look after, etc, etc."  Then a couple of days later, I was looking at my notes because a funny thing happened, I heard and wrote down that the incision would be 6 cm x 2 cm, but my brain processed inches.  Even though I'm a big girl, I couldn't figure out how 6 inches were coming out of my bicep.  So I was looking at my notes, relieved to discover it was centimeters and not inches, when something else caught my eye.  "follow up exams, 3 mo/2.5 yr, 6 mo/2.5 yr, --> yearly if good after 5 yr"  What?  It's just skin cancer, they cut it out and your done, why do I have follow up like a cancer patient?? Now, I always knew that skin cancer is cancer, but I had been brain washed by society that it was different.  So I started doing my research. I was blown away.  This melanoma stuff was nothing to play with.   Then when I went for my first 3 month scan, and I'm standing there in my bra and underwear, and she actually pulls out the back of my bra and underwear and the cups on my bra to check under them, no skin unchecked.  Three months later, she biopsies a spot and tells me that if I'm ever concerned about any moles, she will take it because I have had melanoma and earned that right.

So for me, I knew melanoma was serious when I was given a follow up screening schedule for the next 5 years, and when I was told that I could have any spot removed that I was ever concerned about because I had the melanoma card.  Both of those things came from my doctor, but other than a bookmark with the ABCDE examples on it, my knowledge of melanoma is self taught.

So I have to wonder, for those who were diagnosed and don't follow up, why don't doctors provide a little more education about it? Just enough that they understand that they need to follow up.  If they were told to follow up, why doesn't it click with them that this is more than just something you have cut out?  It's very disturbing to think that, with the way melanoma can return, that there are people out there thinking that they are perfectly safe because it was removed.  I pray that they are right, that they are the ones that will live a complete lifetime without it returning.  It is just a scary thought to me.

Finally... Pictures of My Scar

In a previous post, I somewhat explained why I have not disclosed as much personal information in my blog.  My family is not supportive of "this melanoma thing".  They treat it as though I am overreacting, that several relatives have had precancerous spots removed, "and they are fine", I need to just move on with life.  I have been questioned about why I am going to these skin exams every three months, and I have even had to justify the fact that my doctor felt the need to do yet another biopsy.

After I wrote that post, I talked to a family member, who I often feel is one of my closest friends too.  She always listens to me when I talk about anything melanoma, and was as outraged at me at some remarks that came my way from another family member.  I told her how I hated how my husband knows of this blog, but that he hasn't looked.  I told her how I know if other family members had seen how I somewhat portray them in a negative light, support-wise, they would probably be hurt. I have talked about my scar in enough detail, that I hope you can picture it.  I would love to show a picture, of it, of me, but even a picture of my scar would be recognizable to my family members.  After I hung up with that family member, I realized something, I have sent her the link to this blog and my Facebook page, and to my knowledge it hasn't been seen.  I've really had it on my mind for the past week or so.

From reading blogs, of those who share their name or pictures, you feel more like you know the person. It does become more personal, more real.  I started thinking again about how my family doesn't (seem to) care, and how I want to protect their feelings for not (seeming to) care.  Yet, how does that level of caring, affect how I feel?  I feel isolated enough, when it comes to melanoma, with my family.   Why hold myself at arms length on here too?

So here goes... I will start with my main scar..  The reason I feel so blessed that it was caught early, and that I need to get the word out about melanoma.  My scar is small and healed very nicely, there is still redness around it and puckering at the edges that the camera doesn't always catch.  I sometimes feel it feeds into the "just cut it out, and you are fine" mentality of many.  At the same time, being in such a prominent place, it does draw enough attention that I can share my story often.

Probably the last picture of my mole

Post-biopsy, I took this the day I found out it was melanoma.

3 days post surgery.  Incision was approximately 6 cm x 2 cm.  2 layers of shoelace style stitches below with the steri-strip above.

Very small.  Taken from a bridesmaid photo the day I removed the steri-strip, 10 days after surgery.

6 months later, you can see the beginning of the "freckle" in the center.

Shave biopsy of "freckle" on scar 18 months later. 

I plan to post soon about the results of the latest biopsy.  I am waiting on a return call from the dermatologist first.  

Seeking Balance in 2012

I haven't had time to get on the computer at all in the past week.  My kids went back to school today, my husband goes back to work Thursday.  He is helping out a friend today, so I decided to catch up on my reading.  I have checked facebook from my phone, so if there is a link to a blog, I have read it, but couldn't access my actual "reading list" from there.

First, I hope everyone had a very happy and safe new year.  My son came back from almost 2 weeks with my parents, then his fathers, then his other grandparents on NYE.  My daughter tried so hard to stay up and was so excited to say Happy New Year, but dancing to the musical acts on the countdown show wore her out and she sat down to rest and was instantly asleep at about 11:40.

It is always sad to hear of loses, and it seems to have been a season full of them this past month.  Several friends and family members of friends who are like our own family, and a couple in the melanoma community too.  I was reading a blog by someone who was looking forward to their new future with melanoma, and the uncertainty that comes with that diagnosis.  I was thinking as I read it, that no matter the outcome, melanoma will not defeat me.  I was thinking of how melanoma is called the beast, and that Satan is also called a beast.  Should melanoma, the beast, attack again, the beast will not win, because I will be rejoicing in heaven when my time comes.  I hope all those who were lost the past few weeks knew this reality, whether it was melanoma, heart disease, or age that took them from us.

Several blogs that I read seem to be struggling/accomplishing about the same thing I mentioned a couple of posts ago, about finding that balance.  We all want to be able to live our lives.  We know we cannot do it the same as we did before.  We now know about safety, dangers and consequences.  We all feel that fear of it coming back, or spreading, and want to do nothing to hasten that.  We all want that balance of being able to enjoy life, without fear, but still aware.  I hope and pray that we all find it.  We have been given a second chance. We have to use it. We have to live, learn, educate.  We cant encourage others to live a sun safe lifestyle, if we are unhappy and scared in the process.  We cant tell others to seek the shade, when we are acting like we are holding up the wall at a school dance.  Who wants to do that?  We need to show that we can have just as good of a time, and not feel left out in the shade.  I believe it is more possible than we are allowing it to be.  I sure hope so, anyway.

Well, enough rambling.  I wish everyone the best of everything in 2012.

LOVE T-Shirt Weather in December

So we had a few more 70 degree days leading up to Christmas.   I also decided to brave going out without the bandage covering my biopsy spot.  It isn't healed, but it doesn't look bad.  Of course as I sat in the "cell phone" store waiting my turn, while listening to people cough and sneeze (this weather is horrible for sinus sufferers), I wish I did have a barrier of protection over the biopsy site until it was fully healed.  Of course, then what happened would not have happened.

It was 3 days before Christmas, and I was pacing, leaning, sitting and waiting, number 17 in the queue, I got to do lots of people watching.  I also noticed that eye contact with me was still including a glance at my bicep.  I would just smile when they would look up and realize I had caught them looking.

Well, as we were waiting for the system freeze and reboot the associate looks at me and says "do you mind me asking about your arm?"  Instant excitement!  I told her that I had melanoma surgery a year and a half ago, and that I just had another spot on top of the scar removed.  She looked confused and said she thought only old people got that.  I told her that anyone can get melanoma, even children, but that in most cases it was preventable.  I asked her if she used sunscreen regularly, since she had olive skin.  She said no, and then admitted to the occasional use of a tanning bed when she was younger.  I was able to tell her my history with the sun, and how lucky I was that I caught it early.  I also used a little of her vanity, because her hair and make-up were very precisely done, and talked about my scars and age spots.  I happened to pick up a bookmark with the ABCDE's on it when I got my scan last month, and it was still in my purse, so I wrote down the address for a reference site on it for her.  She was really receptive and even thanked me for being so open.

I thought that would be the end of it, but yesterday we went back to the store to activate the phone and transfer things over.  She smiled when we walked in but was helping someone.  My husband stepped outside a minute, as she was between customers.  She came by me and said "I just wanted to thank you for that information the other day.  I went to that website, and I have an appointment with a dermatologist next month"  I was so caught off guard.  I just smiled, but luckily she walked away to call her next customer before I could respond.

It's Okay To Enjoy It. Safely, Of Course.

As someone who annoys people by seeing the silver lining out of every situation, and gets annoyed at those times when other people cant seem to do the same, even when pointed out at them... I really struggle with the ability to find the silver lining with melanoma.  Yes, in my case, I was blessed and caught it early, and was able to remove it by surgery.  I am so thankful for that every day.  I need, though, to find a way to turn this thing that has affected so much of my life and the way I view things, into a positive and essentially pay it forward, hopefully before someone else hears the same words I did.  

Last week while waiting for my biopsy results (negative, by the way!!) a very strange thing happened. It was 70 degrees for a few days that week. I had errands to run. Remember I am struggling with my love for the way the sun makes me feel when it touches my skin. It is warming to my soul, as if God is touching me and soothing me with that light. In the winter, I miss that sunlight, I truly believe in seasonal affective disorder. Since my diagnosis, the sun has become so bitter sweet. I still love it, and I walk outside and begin to soak it up, but then I realize that it is dangerous, I dont like that at all and I struggle with it in a major way.

Well, I decided that last week, since it was going to be 70 degrees, I was going to embrace it. Safely, of course. I was also going to remind my friends and family to do the same. My facebook status said "Going to slop on some sunscreen & enjoy the day today. It's going to be 70 degrees! :D" And you know what? I did. I spent two days running errands. I chose to shop at the outdoor mall instead of the indoor one. When I got there, I got out of the car and stood outside to finish my phone call before going into the store. I loved being able to walk around in jeans and a t-shirt.  I actually trusted my sunscreen. Okay, I always trust my sunscreen, but that day I wasn't looking down for signs of extra freckles every chance I got.  I allowed the sun to energize me, I am a Leo after all.  And it worked.

When I got home each night and took off my make up, which contains SPF 30, which I wear over a SPF 35 moisturizer.  No extra freckles! No pink skin!  No farmer's tan on my arms! No V-neck tan!  Needless to say day two and three followed suit.  

I think I crossed a bridge.  It is okay to safely enjoy the sun and wonderful weather as we go through our daily routines.  We just need to make sure we are protected and we are smart about it.  Yes, it is dangerous, but we have to go about our lives, and remember that moderation is key.  We need to remember the sun safety rules  about reapplying sunscreen, seeking shade, avoiding the peak sun hours.  

I know that this probably crosses some lines.  I have been avoiding life, avoiding outdoor scenarios, even felt guilty for doing a skin cancer 5K because it was in the blazing hot June sun.  I have been missing out.  I know that my life depends on it, but what is life if I cant enjoy it??  I need to find balance, for myself.   

When I saw that new dermatologist, something clicked.  I realized that he wasn't telling me to avoid the sun, he was telling me to be safe about it.  Even as the nurse bandaged my arm, she asked if I was putting sunscreen on my scar each day.  I told her that I was, that when I put my facial moisturizer on, that it had a SPF35 and that I would take some extra and put it on my scar right then.  She wasn't saying keep it out of the sun, just protect it.  

I also skimmed over a blog post, I will talk about it more soon, when I have time to actually sit and read the entire thing.  I drew one thing from that post, nobody is guaranteed tomorrow, next year, 50 years from now.  Even those of us who were lucky enough to have caught our melanoma early, aren't given any more guarantees on life than those who caught it later.  Yes our percentages are higher, but they aren't 100%.  I don't want my kids to miss out on days at the park or pool, because I am scared of the sun.  I remember a family member talking about her dark tan, because she and her kids had lunch at the pool each day.  I WANT to have lunch by the pool each day too, not for the tan, for the experience and memories, but for 2 summers now, my overpriced neighborhood pool membership has been used maybe 5 times.  

So I am making a resolution now.  I will use that membership.  I will go to the park.  I will enjoy the outdoor fountains.  I will do so safely.  I may not get the opportunity to talk to moms about sun safety at moms groups.  I actually highly doubt that I will get that opportunity. but there are other options.  We can have lunch by the pool, under the pavilion or at an umbrella table.  We can show up at the fountains with a pop up canopy.  I can use my daughters understanding of the need for sunscreen to set an example, and when we reapply, I will offer it to others around me.  I will have extra sunscreen cans and offer it to those who don't have them.   I can use this all as conversation starters.  

One Less Spot..

I just got home from my 18 month skin check today.  I think this was the first one that I was not nervous about going in.  I was uneasy because I was not going to get to see the dermatologist I have seen all along.  I had to see another, who was male.  I did find out Friday night, though, that someone close to me had seen him, and really liked him.  I believe that helped.  When he came in, I was instantly at ease.  He was very thorough, and was the first that checked my scalp beyond the mole I have in front at my part.  He brought out his lighted magnifier tool a couple of times, and commented about how many freckles I have in comparison to how few moles I have.

Then he got to my original scar.  Out comes the tool for a closer look at that nice large spot that has appeared on top of it.  I laughed and said that one was the one that plays with my head because it is exactly where the melanoma was.  "I think I want to take it and send it for a biopsy then"  He said it wasn't abnormal for freckles to appear on top of a scar like that, but with the placement and size, it would be better to test it.  So I agreed.

He was very quick and I only felt the initial stick of the needle when he numbed it.  He removed it and then asked me to look before he bandaged it to show me that the appearance of my scar will only slightly be affected by it.  

He did say that since I have passed the 1 year mark, I could go to every 6 months for exams.  I had been told that I was supposed to do 3 months for 2 1/2 years, then 6 months until I reach the 5 year mark, so I am not sure of that.  There was a thing last visit where the nurse said that she thought it was 6 months, and Dr K corrected it to 3 months.  I'm not sure what I am going to do there..

First, I have to wait for these results.  He said that they would be in by the end of the week.

Reflecting on the Past 18 Months

I remember being about 5 years old the first time I went to Disney World.   I was determined to ride Space Mountain.  I didn’t know what it was, other than a roller coaster in the dark, and I was so excited.   The line was very long and as we weaved our way closer, there were television screens that would show clips of the coaster and people screaming as they passed by.  My dad kept telling me that I wouldn’t see where I was going like a normal coaster and that if I changed my mind, it would be okay.  One of my dad’s favorite sayings about me “she isn’t a wus”, may have started around that time.  I wasn’t turning around.

Isn’t that life? You cant see where you are going, but you’re going to get there..  Hang on tight, it might be a bumpy ride (from time to time).

The past 18 months have definitely been that ride for me.  It is so hard to believe that 18 months has past, yet sometimes it seems a lifetime.  I do believe my melanoma diagnosis was one of those life changing events that rank right there with losing a parent as a teen, getting married, having kids, the list goes on.  I was so blessed that it was caught early.  I am thankful every day.

When I was first diagnosed, I compartmentalized a little bit.  Rather than focus on what it was, or how I felt, I just focused on taking care of it.

A month or so later, as the itching and tingling signs of healing began, I started looking for pictures of scars.  Since I had a stitch from one of the layers below that popped through, I was worried about infection.  I never found any that looked like mine.  I was struggling with the fact that I had this scar, in such an obvious place as my bicep.  Living in the south, short sleeves and tank tops are a necessity 9 months of the year.  I knew I had a little issue with vanity regarding my hair, it is always long, but I love that it is straight and that it is always healthy enough that I can change the color whenever I want without damaging it.  That is cosmetic.  I have some scars on my face from a dog bite when I was 5, but nobody sees those unless I point them out.  My bicep though, that is a beacon to the world.  Look at me!

It took probably another month or so of healing.  The puckered skin where it was pulled tight, had begun to stretch so it laid down better, the redness lingered (until about the 1 year mark), but it did look better.  People, complete strangers, would ask me what happened.  I would be very open about my experience.  Then I began to really embrace the scar, people really had some misconceptions about all skin cancers, especially melanoma.  So I began to research more.  In researching, I also found a lot of blogs where other people were sharing their experiences.  I loved reading them, but my experience was so different.  I didn’t require multiple surgeries, or additional treatments, mine was a case of the dreaded “just cut it out”.

Although I was finally as content as one could be with the scar, I welcomed winter last year.  While people I didn’t know, or know well, were asking about my scar, people I was closer too really seemed to be either disgusted by it or sick of the topic all together.  The holidays are hard for me, so to be able to ignore the fact that I was now imperfect in their eyes, was something I was content with too.

By spring, the redness had faded more, the dimpling was almost gone.  As the redness faded, freckles along the scar line became more obvious.  It’s a really strange thing, but when the freckles that were pulled together in a straight line showed, the scar began to look worse again.  It took someone pointing that out to me though.  Over the course of about 5 hours with this person, they brought up my scar quite a few times.  Why did it still look so bad?  Isn’t there something I could put on it? What does the doctor say about it?  I found out later that her husband was about to have surgery for one spot of melanoma and one SCC, so I think she was worried about that.  I got home that day, and really looked closely at my scar.  It was a perfect silver line, but the freckles really hid that fact.

Over the course of this summer, I got back into the blogs I had been spot checking throughout the winter, and got inspired to share my story.  If I felt like mine was unique, just as everyone else who shared their stories did, then maybe I would also find someone with a similar story.  Plus, I really had worn out the only people who would listen.  My family never did listen.  They offered me use of their in home tanning bed when I visited and acted like I slapped them when I stuttered saying “I cant tan anymore”. Then caused a scene when I applied sunscreen to my daughter, because she “needed” the sun. They told me I was overreacted when I couldn’t find sunscreen in the car when we decided to stay for a church picnic, said I was making a big deal out of nothing.  I have reevaluated some friendships, ended a couple, allowed a couple to grow stronger.  Although I have not named names and have tried to keep how people are related to a minimum in this blog, I hope now those reasons are obvious, it has been a good outlet for me to share news, vent my frustrations over situations, or just talk out an idea in a way that I can develop it.  I am very thankful for that.

So here we are, December 2, 18 months post melanoma surgery. In the past week, it has gotten cool enough that short sleeves will be put away for a few months.  I can type without seeing my scar out of the corner of my eye.  It isn’t looking back at me when I look in the mirror. I will miss the invitations to share, because people wont know to ask about the scar they cant see, but it will give me an opportunity to practice approaching others, before I begin to speak to groups in the spring.   What was once envy that other people had scars in places that could be hidden, is now a yearning to never have to hide mine, because it is a part of me.