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.

You Never Let Go

I had this song on my mind this morning.  I haven't heard it in a while, so after 2 hours of singing the chorus in my head, I had to come find a video.  I have now listened to it and sang along at least 5 times.

Hearing that you have melanoma is like leaving the station on a roller coaster ride.  No matter where you are in your journey, it has it's ups and downs.  You feel fear with your diagnosis. Hope with your treatment. Anger and love towards your scars. Anxiety before scans, relief at good reports, tested patience as you wait for biopsy results.  Periods of numbness and exhilaration. You feel loved. You feel alone. You feel stupid and exiled in the shade. You feel comfort. You seek wisdom.  It is all over the place, up and down and around and around.

Isn't it such a wonderful and comforting feeling to know that no matter what, God never lets go?   He is there through the calm and through the storm.  Through every high and every low.  So thankful that no matter what, we aren't alone. God never lets go, no matter what or where we are on this journey called life.

UV Free Tanning

Before melanoma, I didn't seek out a tan, but I did like for my freckles to pop a little more, and for the dark circles under my eyes to blend a little more than they do now.  Unfortunately, once I was a teenager, the tan was harder to achieve, but the freckles were not.  I would turn a little pink, then freckle.  My face would show a little, faint, color, and really freckle.  It was never bronze, or tan, just a little pink.  I learned to use powder bronzers on my face to help with the color so it looked less pink and more golden.  Then for my arms and legs, I would use either a sunless tanner cream or one of those moisturizing lotions that would help take me from the pink/red tint to the golden tint I preferred.

Since my melanoma diagnosis, I have had no desire to look tan.  I really don't.  I find myself even getting annoyed if I am outside for a few minutes, with sunscreen, and my freckles multiply.  My sunless tanner and moisturizer are collecting dust (probably should throw out due to age) and my bronzer is now used as blush.  Tip, if you have freckles and cant find a blush that doesn't look too pink or orange because of them, try a powder bronzer. I also use it sometimes as eye shadow (use a brush), when I want some subtle color.

So the other day, I drove by a sign advertising UV FREE TANNING.  I was happy to see this sign, but then it became bitter sweet, because I looked back at the building and it was a regular old tanning salon. Glad because I think if you feel the need to look tan, spray tan is the way to go, but then the only place I know of to get a spray tan is a tanning salon.  I came home and did a quick search online for local places that do spray tans and the primary service for all of them was tanning beds, not the spray tans.  I don't know anyone who owns their own spray tan kit, but would love for a couple to trade in their in-home tanning beds for them.

My personal opinion, and I'm sure some would say I am being overly sensitive, but I don't think I could ever step foot in a tanning salon again.  Not for the urge to tan.  I don't think I could do so without saying anything, and right now that would probably come out more emotional than it would productive.  Someday maybe.  Right now though, no.

In my local search, I did not find a single place that offered only sunless or UV free tanning.  Or one that offered it, but without a tanning bed too.  This was very disappointing to me.  It has me wondering why.  Is this a business that would not survive?  I wonder if it is a business to look into.  I wonder if one of the local spas would consider offering it.  I want to look into this more, find out if there is a location that offers sunless tanning without the UV beds.  There has to be a market for it, even if you don't market it as being exclusively UV free, it just happens to be that way.

Fall Festival Season

I mentioned recently that I was inspired after attending a fall festival and my daughters reaction to seeing me bringing the sunscreen from the car.  Since then I really have felt that this is the right thing to do.  I have been to several more fall festivals.  In the south, we are still wavering between short sleeves and thin long sleeves or hoodies.  Thankful that I don't live in a colder climate.

This past Saturday, I took my daughter to a local church festival.  It was a cooler day, very windy, but sunny.  After a couple of hours, I was noticing lots of pink cheeks.  Now, some of that may have been from the wind, my lips definitely got chapped, but I think it was mostly from the sun.

Monday, Halloween, there were two festivals.  The first is the one that I really want to talk about.  It was at my daughters school, just for the two Pre-K classes, and I was a volunteer.  I was assigned to do face painting.  Not what I signed up for, I actually told them that I would do anything but face painting.  At the Saturday festival, I ran into one of the teachers and she told me what I would be doing.  So I had plenty of time to mentally prepare myself.

I got there early and was helping a teacher set up. It was chilly in the shade, but warm in the sun.  I asked her if I could be positioned in the shade, but as we set up that did not happen.  I understand trying to keep the kids out of the shade, since it was also a little damp, the shade was cool, but I was really panicking.  Yes, I had on sunscreen and my spf moisturizer and make up.  When another parent came in costume, I actually considered the possibility of using my hood as added protection.

I wonder if some day the thought of spending an hour in the sun, mid-day, is not going to put me in panic-mode.  I know that other than my daughter, most of my family thinks I am overreacting when I scramble for sunscreen for short bursts of outside time.  I don't like that, but the sun is the reason I have this scar on my arm and all these biopsy spots that look like cigarette burns or eraser sized divots.  I get so frustrated sometimes that they don't get it, or want to get it.  I wish I could be more relaxed when I know I have on sun protection, but SEEK SHADE is not something to ignore either.  I know that it isn't going to happen, although I pray for the ability to relax and maintain my composure and embrace the moment, it will never leave the back of my head.

In that hour that passed very quickly, I painted about 20 faces or hands.  I couldn't help but notice all the pink cheeks.  I also noticed that my snow white daughter did not turn pink, even though she did not leave my side in the spotlight of the sun. It wasn't a big ordeal for her, she got her sunscreen as she got dressed in the morning. I really cant wait for the opportunity to speak with parents about the importance of sun protection.

Long Overdue Update

I was just opening two more letters from my insurance/doctors when I realized that I did not update about following up with them after my mammogram and ultrasound.  I seem to always be on the go lately.  You know the life of a stay at home mom, always on the go, but when someone asks what you have been up to "not much".  

I talked to my doctor on Thursday when she called to tell me that my results were fine.  I asked her if the lymph nodes are supposed to show up on the scans and explained that I was concerned since I have had melanoma already.  She basically said it isn't abnormal so she isn't concerned, but that if I am still feeling the pain to come see her again before Christmas.  I felt a lot better after talking to her, and each of these emails and letters I get (email and letter each from the doctor and radiologist, for both the mammogram and ultrasound), I feel less blown off.  

I haven't been assigned an appointment yet, but I go back in December for my 3 month skin check with my dermatologist, so I will be sure that she knows that this was going on, and if it is still bothering me, find out what her thoughts are too.

Blown off?

This isn't really a post about melanoma, but maybe it is..  I'm experiencing a roller coaster of emotions right now. They range from confusion, anger, rejection, relief..  I don't know.  Hopefully this post will make sense, normally I would wait and calm myself first, it will all probably make perfect sense by then, right? I'm being an impatient brat instead, so please bear with me.  I know once I share and get it out of my system, I will feel a lot better.

About 2 years ago, I started experiencing some pain in my breast.  Having just lost someone very close to breast cancer, I was very aware, and got in for a breast ultrasound right away.  It came back clear, so my concern just fizzled away, especially after my melanoma diagnosis 6 months later.  Well, the pain never went away, and in the past month, a new pain has developed further up and into my armpit.  I went for my physical this past Thursday and mentioned it to Dr M, along with my history of melanoma and not knowing my family history.  She felt the area I pointed to, and set me up for an ultrasound and mammogram. I just got home from that appointment.

It was a breast health department, and while there was a lot of pink around, there was not as many pink ribbons.  I really expected to be surrounded by them, but it wasn't so bad at all.  There was a board that had a note that it was not managed or maintained by the center, it had a pink ribbon on diagonal corners and 3 large pink felt butterflies spread out between the two ribbons.  Each one had facts.  One had risk factors, one had facts, one had statistics.  On the facts one, the second of three facts said other than skin cancer it was the most diagnosed cancer in women in the US.  I was glad to see that small but notable nod to skin cancer being more prevalent for women.

So after the mammogram, which I have to say I was dreading the pain and it wasn't so bad at all.  It was uncomfortable, but seriously, these DDD's weren't screaming with pain (sorry if tmi, but I always heard that the larger or more dense, the more pain..).  It was less comfortable when they did the spot towards my armpit, but that is to be expected since the plates had to push against my bones to get there. I am sent back to the waiting room while the radiologist reads that and tells the ultrasound tech where to focus on. When I go over to the ultrasound room, and she immediately goes to the spot under my arm where it hurts.  I am now really sore due to the pressing with the device.  Thanks to many ultrasounds for ovarian cysts and three pregnancies, I know when there is a spot on the screen and that her clicking and marking is taking measurements.  They leave me in the room while the radiologist takes a look, just in case they need to do more.

A few minutes later, they come back in and say that I am all done, good news I'm okay.  What they saw on both the mammogram and the ultrasound was my lymph node. That isn't really breast tissue up there, so I'm free to go.  I ask if I should be concerned that it showed up, I don't know if it is supposed to show up or not. I don't remember a mention of them last time. They just repeat that I'm fine, my breast is fine.

Here's where I feel blown off.  Yes, my breast is fine, but my lymph node is not my breast, so they aren't concerned that it hurts and showing up.  Is it supposed to show up?  I understand the radiologist cant tell me everything, and obviously they were just concerned with the breast.  Should I be concerned?  Should I wait until Dr M gets the report and call her and remind her that even though my breast is okay, I had melanoma?   Should I call Dr K (dermatologist) and tell her what is going on, since every skin screening she feels for my lymph nodes too?  Am I overreacting?  Should I just accept that I'm okay and that this pain is normal, as I did with the breast pain 2 years ago?  I don't like that they are saying breast pain is normal, but really dont like that they are saying that pain in what I now know is my lymph node is okay..  Okay, nothing's wrong, I am relieved to hear that. The logical next question, why the pain?

Causes

In honor of Breast Cancer Awareness month, last week I shared a picture of the pink ribbon on my personal Facebook page. Thanks to one of the new features, I can see that it was shared 3 times.  As I have mentioned before I have been involved in Breast Cancer Awareness events in the past several years.  There are personal reasons for this, I lost a dear friend/family member to her second battle with breast cancer, her mother is a two time survivor, another family member and her mother are both survivors.  It is an important cause.

Well, a few days later I get an email that says "with all your skin cancer stuff, I thought you were over the breast cancer thing now"  What?  Are we only allowed one cause at a time?  No.  I also support Diabetes and Heart research/awareness/prevention.  Also because someone I love has been affected by these.

They are all important causes, and the support of one, does not negate the support of the other.  Yes, right now my primary energy is towards melanoma.  Why? Quite simply, everyone knows about breast cancer, everyone knows the risks for diabetes, heart and stroke, and they are getting attention.  I want that attention towards Skin Cancer and Melanoma awareness too.  Looking back, for a while Lung Cancer and Emphysema got a lot of attention for a while as everyone fought the tobacco companies.  I remember a period of time when Diabetes research got a lot of attention.  The cardiac organizations go through their stages where they get a lot of attention.  Thanks to a brilliant campaign, Breast Cancer is now getting attention.

All the while, the Skin Cancer organizations are struggling to get the same name recognition out there.  It has been more of a word of mouth campaign.  Those affected, share with those they know.  There are various events around the country, some organizations use an orange ribbon, most a black ribbon, one even uses a white ribbon that has black spots.  Information is spurratic, sometimes too medical.  I even came across a site recently that disputes everything that the skin cancer awareness campaigns stand for, and in a very convincing way.  It is understandable after reading that site, how the tanning industry has been able to have their customers see the world through rose colored tanning goggles.

I see good things happening though.  California just passed a ban on tanning for anyone under the age of 18, many others are passing legislation restricting usage to parental consent.  The FDA has new guidelines for sunscreen manufacturers and labeling.  In my personal life, I am encountering less people who think skin cancer is just cut out, and more who are, vaguely, aware that melanoma is in a different class than other skin cancers.  I'm very encouraged by this, I hope that even though it is a frustrating road, that my fellow warriors are also encouraged by the baby steps. Slow and steady..

It's Possible

Every time an idea I have for getting started with speaking to mom's groups hits a road block and I get discouraged, something comes along that tells me not to give up.

Take this video that was just shared on Facebook.  While it is about getting the word out to high school students, it shows how receptive the younger audience can be.  They are saying that it makes them think twice.  If this can apply to stubborn, know it all teenagers, it can also apply to overwhelmed moms.  I hope.   

So I'm motivated again.  I need resources and a plan.  I am going to start with a local awareness group, and go from there.  For groups, I have friends that are involved in several different groups in the area.  Hopefully I can get them to brainstorm with me, for the best approach, and they will suggest me to the group this spring when I'm ready.

Tanning in the 90's

Last week I came across an article about prom tanning in the 90's and the current spike in melanoma cases in women ages 25-34.  I went to prom in 1993, 1994 and 1995. I didn't tan prior to prom.  I look back, and even though they were in April, I am fairly pale in those pictures.  My skin looks very even toned and healthy.  

I already had a relationship with the tanning bed at that time.  My mom and I went to get our base tans before spring and summer breaks in maybe 1991 and 1992.  As I've said before, she would get very dark, I wouldn't get so dark.  Although, I remember fall of freshman year, wearing a warm up suit to school.  Hush! it was the style then.  I wore a tank top under the jacket, it was blue and really showed off my tan. I remember the guy next to me in Language Arts class calling me "fake"  My hair was colored, I had fake nails, and I was extremely tan after a summer at the tanning bed, pool or at the lake.  He asked me what was real about me.  I did not like the guy before this, I really didn't like him after that.  But here I am, 20 years later, I remember that conversation like it was yesterday. I hate to admit it, but he may have reached me on a subconscious level.  I think that was when my time in the tanning bed transitioned from trying to tan, to trying to just get that alleged safer base tan.

Back to prom. I do remember trying not to get tan lines before prom my sophomore year.  I was wearing a strapless dress. My mom passed away shortly after sophomore prom, and after that, I lost interest in the tanning bed almost completely. Junior year my dress had several spaghetti straps that crossed in the back, and I remember my friends giving me a hard time for wearing a long sleeve shirt at a track meet at FSU, in order to avoid tan lines.  Senior year my dress was sleeveless, but in the back it had a very detailed beaded design that just looked better with pale skin, versus the freckles that would "pop" if I tried to tan.

All that being said, I almost would call myself an early bloomer as far as tanning in high school was concerned.  Maybe I need to find that jerk who called me fake (among other things over the course of 3 years prior to this), and thank him for putting that bug in my ear.  Not that I want to give him credit, but I know that he was the only person to point out to me that I was too tan.  Who knows how much more damage I would have done if I continued through high school tanning that way?  I am not saying I didn't damage further by continuing tanning for the base tan at all, but it was no longer extreme tanning for me after that.  I don't blame prom tanning, but I definitely blame my sun habits my entire life, and tanning bed habits from 1990-1993 and then off and on from 2001-2005 for my melanoma.  The article states that "The latency period from the time of intensified exposure to the appearance of melanoma is 5-20 years"  My diagnosis was in 2010.  

Excited about this new direction..

I've mentioned before that I felt like my journey sometimes takes a life of it's own.  Especially with this blog.  Sometimes I come in with the idea to write about one topic, and as I write, it goes a whole different direction.  Probably why I didn't do too well on essays in school, I had trouble staying on topic.  Well there was one time in college that I stayed on topic so well that my persuasive essay had too many supporting facts and THAT counted against me.  Anyway.  I have found that I want to tell my story and experiences.  I want to educate my friends and family.  I have been looking for a direction to take it further.  If you have been following my journey, you know that a few weeks ago I was presented with an opportunity to suggest a meeting topic to a moms group, and I suggested sun safety for children as an idea for spring or for May which is skin cancer awareness month.  Well, I thought that would be the end of that direction and I kept brainstorming ideas for my own age group.  Well, as you will read, that wasn't the end, because I can't seem to get my mind off the children.

On Saturday, my daughter and I went to a "Taste of..." event at a local church.  It was held from 12-4:30, so in the peak sunlight hours that you are supposed to avoid.  It was also in a field, so no hope of finding shade. Next time, I will be the one in a sun hat. We only planned on being there for about 2 hours, but as we were about to leave, our friends came in and said their sons band was singing at 4, so we stayed.

I used all the products I listed in my previous post, and applied a SPF 30 before leaving home.  After about an hour, I noticed that my scar was looking pink.  I joked that my UV indicator was sending me a warning and walked back to the car to get the sunscreen.  As I was returning to our group, my 4 year old turned around and saw me.  Without hesitating, or me saying a word, she ran over and put her arms out so I could spray her too.

I thought that was the coolest thing.  She saw me carrying the spray can and ran over and put her arms out.  Okay, maybe that is just dorky of me, but it made me really proud.

Unfortunately, had it been my olive skinned 14 year old, he would have grumbled through the first application and probably refused the second one.  For my 4 year old, it is just a fact of life.  She also has snow white skin, so she understands the consequences of no sunscreen.  For him, he was 13 when I had my awakening (melanoma diagnosis), and by then I had already set the tone of minimal protection.  He was on a retreat getting a blistering burn, the week of my surgery. He is at that stubborn age too, you know the one where mom is just overreacting to everything??

I think this is the perfect example of why I am suddenly so passionate about reaching the parents in a way that they will teach their children while they are young, to develop good habits and hopefully break the cycle of sun-abuse.  I didn't see this direction coming, I have spent my energy the past 15 months sharing information with my friends and family.  Hoping that they would see me and hear me, and make more safe decisions. I really want to reach the next generation. I know that when the kids are younger, parents are more consistent with applying sunscreen to them before they spend time outside.  It is when they reach about school age, that the parents back off a little. I want to find a way to keep that habit from breaking as they get older.  I really do want to somehow work with mom's groups, preschools, day cares, etc., to find a way to get this message out so that not only do the parents remember, but the children also remind the parents they need it.  It happens, my little one wont let me forget.

I have a question..

In all my research online, I have not come across the answer to this. I'm thrilled to see that my number of readers is going up each week, so I am hoping that one of my readers knows the answer to this.

Traditional sunscreen is effective for no more than 2 hours, less if you are more active.


I use sunscreen with a SPF 30 before leaving the house each day.

My every day body lotion has a SPF 15.
My morning facial moisturizer has a SPF 35
Depending on which foundation I use that day, it either has no SPF, SPF 15, or SPF 30.

If I were only to use the sunscreen in my body lotion, facial moisturizer and make up, as many people do, how long is that really effective for?  I always think it is good for added protection, but sometimes think it also gives a false sense of security for long term or all day protection.

Breaking the Cycle

I read through other blogs and pages of skin cancer and melanoma warriors.   Some have fought. Some are fighting. Some are fighting for, or in memory of, someone they love.  They are great blogs, and it is amazing how you can end up feeling as if you know someone, just because they are sharing their journey and thoughts.  

Yesterday I read something on one of the blogs that I have just recently discovered,  and I wanted to share my thoughts.  For The Sake of Beauty hit a nerve with me for several reasons.  I know that even a few short years ago, I thought a light tan was beautiful.  So I can still understand the ignorance, but now it just makes me sad to see people abusing their bodies through tanning.  Do they not care? Or do they just not know?

I didn't have the traditional college experience, so the only thing I really know about sorority life is what I have seen on TV.  I was sure that was exaggerated, but now I wonder about some aspects. I had hoped that the appearances were the exaggerated part, and that it was more about sisterhood and that partying was what would develop into networking post-college.  So as I talk about ignorance in this post, my own ignorance about sororities will show.  

If you think about the generation that raised these college students now, they were probably in high school or college themselves when life made the transition from wearing accelerators or SPF 2 oils to get a darker tan to the excessive use of tanning beds.  I was early high school when my mother was a tanning bed worshiper.  She was a red head, but her skin was as brown as could be. Beginning in 9th grade, I would also go to the tanning bed to get a base tan, that sometimes became darker than that.  Now one of my children is in high school.  My point is this, the baby boomers and even the older generation Xers, worshiped the dark tan. For this reason, they never learned and passed on sun safety tips to their children.  Instead they taught them that bronze is better.  Their children grew up in a society that thinks you need to tan before spring break, before prom and before summer break.  The darker are better.  Now these same children are going to college, they have a sorority demanding that they tan almost daily, which would make anyone unattractively dark, and they don't know that it is wrong.  Sure they have heard that there is danger, but just as in my case, it wasn't real until it happened to my uncle's face, and then to me a couple of months later.  

In this specific case, I think the sorority president and every person on the chain of command above them should receive letters and a full educational packet.  You know that this isn't happening only with these two sororities, these are just the two that have been shared at this time.  It should start with them, any bans on such requirements will apply to more than just these two, correct (my own ignorance again)?  If nothing happens, and you want to take it further, then the sororities and the school should be called out publicly for requiring the members to expose themselves to cancer.  I have seen links to the blog above in several places, just since yesterday.  I'm sure that this issue could easily go viral online.  If common sense and the facts do not prevail, maybe the pressure of public opinion will.  

Beyond this case, how do we break this ignorant cycle?  Ignorance is bliss, and we all know that kids and teens are invincible.  All we can do is continue the fight and get the word out there. we need to raise the next generation on better information. Knowledge is power. We need to make sure our children know the dangers of tanning, both indoor and outdoor.  We need to make sure our children know about sun safety.  We need to make sure our children apply sunscreen daily as a part of their routine.  We need to teach our children that when they are confronted with situations where they are told that they have to be tan to be beautiful, they know that they are already beautiful just the way that they were created.  We need to make sure our children are confident in that and will say "I am Embracing My Own Glow"

Results are in

The great news is, my mole was clear!  She said she would see me Monday to get my stitches out, and then for my next skin check the week before Christmas.  So happy, so thankful, this one had me worried.

Quarterly Skin Screening, 15 months....

Yesterday was my quarterly skin screening.  It is so hard to believe it has been 15 months since my melanoma diagnosis.  My anxiety went down over the course of the past week, thank goodness, so I was able to talk to the dermatologist about more this time.

Last summer, I had some "freckles" appear on my face that concerned me because they were more of a grey color than the freckles that cover the rest of my body.  I never mentioned them to my doctor because, I was sure that she saw them and wasn't concerned.  Well, this summer I have developed one single large grey freckle just above my left eyebrow, in the forehead crease that apparently decided to show up with my 35th birthday last month.  Well, the single one bothered me enough to ask, and she went right to it without me pointing it out.  Luckily it is nothing to be concerned about, just an age spot.. Lovely.  She said if it bothered me we could explore bleaching creams, but I said no, that with make up it looks like a normal freckle.  Age spots and mistaken for a teenager at my sons high school just a few weeks ago..  Now that makes me giggle.

Anyway, so she reminded me how good my moles always look and said that they all looked good.  I told her about the evolution of the one on the bottom of my foot.  She said if it is getting lighter that is good, that it is darker or pearl white (I think) changes that we need to worry about.  So we will keep watching that one.

She checked out the spot between my toes again closely.  It was biopsied in 2007, but the color has completely returned, minus a white streak of scar tissue going through the middle.  It was a twin with the one on my arm that turned out to be melanoma.  They developed about the same time and looked about the same too, which is why I called them twins.

She did decide to biopsy one on my upper thigh.  I had called once and went in for a spot check on that one, it was small, but seemed to be getting bigger.  It was from another set of twins, so I was able to show her the one on my abdomen in comparison because they both used to look the same in size and coloration.  They had one side that was darker than the other originally. The one on my abdomen still looks the same, but this one on my thigh had gotten a little bigger and dark all the way across. She said she wasn't too concerned, but that darker was definitely something she didn't like to see.

In the past the results have been within 1-2 days, but she did tell me, that it could be 7-14 days.  I will update when I hear.

I did it!

This morning I went to the MOPS meeting and presented my meeting topic idea.   In hindsight, I don't know why I was so nervous about how it would be received.  Maybe it was because one of the leaders obviously doesn't use sunscreen.  The rest of the leaders all have fair complexions, and look like they do, why would I be afraid that it would be rejected due to the one?

As I drove in, it hit me.  Yes, I can say that May is Skin Cancer Awareness month as a reason for selecting when the topic should take place, but it doesn't have to be a Skin Cancer Awareness topic to be effective.  Sun safety and developing good habits is the main goal.  They go hand in hand, right?  This is a moms group, putting the fear of cancer may be a topic that they don't quite want to cover, when the goal is to be positive and supportive of other mothers.

So when the ideas were being presented, I said "May is Skin Cancer Awareness month, what if we had someone come in to explain the new FDA labeling guidelines for sunscreen and give us some sun safety tips for our kids before summer"  Without hesitation, the blonde fair skinned leader said "That's a great idea" and the dark complexioned too tan leader who was standing slightly behind her was nodding in agreement.

Now there were a lot of ideas presented that day, so only time will tell, but I definitely feel good about it.  My first time attempt to present the topic to a group was well received.

Make it part of your routine!

We all say it.  We all hear it.  We all know it.  We all do it.  Don't we?

I'm talking about sunscreen.  Make applying sunscreen part of  your daily routine.  It sounds so simple.  Shower, dry off, put on deodorant, sunscreen, get dressed, put on make up, brush your hair and teeth, etc..  

Okay, I'll admit it.  I sometimes skip that sunscreen step.  Sometimes, being a stay at home mom, that shower doesn't happen until bedtime.  You aren't going to put on sunscreen at bedtime, are you?  Still, it should be right there, in the drawer or on the counter with your deodorant, or your make up, or hair brush, or whatever so you have no excuse to forget.

Since school has started back, my routine is all out of whack.  Some mornings I get up way too early with my son, sometimes I get to sleep an extra hour to get up with my daughter.  Some times I am up and dressed before I wake her, some times I get dressed as she is.

So this morning I was up with my son, laid back down for the 30 minutes before my daughter needed to get up, got dressed as she did, and left.  I'm in my husbands truck because my clutch went out.  Something that should have happened 20k miles ago, but happened last Monday.  The repair has been a nightmare in itself.  First they sent the wrong clutch, then they sent the right one ground instead of second day air, then it got lost.  Supposedly, it is coming today.  Anyway, I had two errands to run after dropping her off. So I go to the bank, it isn't open yet, so I go to Walmart to pick up a prescription from the pharmacy that opens 30 minutes after the bank would.  Wasted driving.  I need to pick up a couple of things, and with no kids, I can try to find those cute pants my cousin had.  So I get out and shut the door.  Immediately I reach for my pocket to hit the lock button as I would in my car.  No keys, so I look back and sure enough I hit the lock getting out.  The keys are in the ignition.  Just great.

So I call my husband, and he doesn't answer.  I text him.  He replies that he is sending one of his employees with a spare ("We are fortunate that I took the spare out of the truck last night"  Whew! Thank you, God!).  So I do my shopping in a hurry, thinking it would be about 30 minutes.  I get back out to the truck to wait, and ask who I'm looking for.  Well, they put the key down and couldn't find it.  WHAT??  Remaining calm while wanting to stomp my feet and whine that I want my car back.  Trying to get perspective, but cant stop thinking that I need to be home by 9 because the TV repairman can come any time after that. Deep cleansing breaths.   

Sun is getting higher, clouds are getting more scarce, I go from chilly feeling to warm.  I'm trying to focus on how nice it feels outside in the breeze since it is 20 degrees cooler than it was last week. Wishing I was in a different location for that though.  Then I feel it.  It's only been a few minutes, but I realize fast that I had on no sunscreen. One benefit of my scar is that it is my own built in UV sensor.  It has faded to a nice silver freckle covered line, but if I get in the sun without protection it turns red almost immediately.  It is red at this point.   

So I move around the truck and sit on the curb in front of it in the shade.  I cant fully block the sun though, so I move and lean on the passenger door.  Hunkered down hiding from the sun.  It's about another 15 minutes of what I am sure looks like I'm standing there pouting with my arms crossed, before I hear "you don't look so happy".  I turn around to see one of the guys in that familiar blue uniform and say "I am now" as he unlocks my door.  

So the bottom line.. Always wear sunscreen, even if you are just running in and out of stores.  You never know when you might be sitting outside for over an hour waiting for a spare key.  Make it part of  your routine.  

An opening?

I shared my thoughts the other day about proposing that our MOPS group have skin cancer awareness as a theme in May.  I had been looking at the group leaders, trying to decide who to approach about the idea.  Well, yesterday I got the invite for the next meeting and they said to bring our meeting ideas for the year.  

So now I need to get a better idea of what I want to do, how I want to present it, etc.  They like to do a craft each meeting too.  One of my gifts from the survivor tent at the event this summer was a black and white beaded bracelet.  Maybe we could make those. Any suggestions?  

Catching Up, Anxiety, Thoughts & Ideas

August was such a busy month around here.  Not that it is a bad thing, but it really surprised me because schedule-wise there wasn't much on the calendar.  The beginning of the month my son started high school.  I am so excited for him and this new adventure.  High school wasn't a great time for me, I see myself as a socially awkward person, and I really only connected with a few people.  I lost my mom in high school, and after that, my views on life changed, and high school attitudes, cliques, etc., really didn't appeal to me anymore. Middle school was very rough for him.  High school can only be better and I am very hopeful. Mid month our ladies bible study started back up, and I also celebrated my 35th birthday.  Then we got a phone call that my daughter had a spot at the Pre-K program that we had her on a wait list for.  So we rushed to change schools and plans and she started a week sooner than originally planned.  So in the chaos of the month, I neglected the blog.  I have had a lot of ideas to write about though.

I am in the last weeks before my quarterly skin screening.  I have noticed a strange pattern over the past 15 months.  After a screening, and the all clear if there was any biopsies, I am confident and comfortable and feel good.  Then about a month before the next screening, with no prompting from anything or anybody, I suddenly become very self aware. Is that the right term?  I notice every spot, freckle, mole, etc.  It almost consumes me. Those who know me in real life, probably get a chuckle out of me saying I notice every freckle.  I have a ton of them, back in the time that I believed a tan was okay, I would joke that I didn't tan, that my freckles would just connect.  So in noticing the freckles, I am referring to the large ones that sometimes you aren't sure if you should call it a freckle or a mole.

During those last weeks, I drive myself crazy.  Not really, but I could see how one could.  I look at my scar and what my doctor says is a large freckle on top of it, exactly where the melanoma was, that one really plays with  your head.  I have two on the bottom of my foot that are on the "watch list", I really think they are going to go this trip, one was a solid color my entire life, now it is lighter but with a few dark spots inside. I still even wonder about one I had biopsied in 2007, it was identical to the one that had melanoma and appeared at the same time. The shave biopsy did not remove the mole, so it still looks almost the same. One I have had spot checked and deemed okay before on my upper abdomen, does it have a shadow now?  What about the one on the top of my thigh, does it look darker and bigger now?  I never noticed that spot before..  Oh and on my profile picture on facebook, you can see 3 moles that are about the same, but now one is lighter than the other two..  I'm sure I'm not the only one that does this, but I sure do hope that I am.  

My husband still hasn't seen this blog.  I remember telling him that I wanted his help in the beginning with a graphic, and another time he asked if I had a second email address, and I told him it was for the blog. I think he is just so wrapped up with his busy season at work, that he hasn't had time to care.  I dont want that to sound like I think he doesn't care, he is always supportive of whatever I do.  I do think he also thinks I make a bigger deal out of melanoma than it is, but I don't know.  It just isn't something we really talk about.  I did give my dad some awareness ribbons I got at the awareness event.  They were attached to a bookmark with the ABCDE's and facts on it.  He seemed more receptive than usual.  But then we decided last minute to stay for a barbecue after church and I was searching my car for sunscreen, he let me know he thought I didn't have to worry about a few minutes.  Sigh.  He even rolled his eyes at me when I pulled the "is it dark?" line on him. Times like that make this feel very misunderstood.

So, on a positive note.  I went to a MOPS meeting on Monday.  One of the moms was so tan.  She has a dark complexion anyway, but you could tell her entire summer had been spent outdoors.  Man, I would have been jealous of that tan a few years ago.  I'm not going to say anything to her, but it definitely had me thinking. Sometimes we have to accept that we can inform an adult, but they will make their own decisions.  But since the damage that causes skin cancers happens early in life, maybe we can at least inform the parents enough that they will make more sun safe decisions for their children.  May is the end of the MOPs calendar year.  It is also skin cancer awareness month.  I think I want to either see if I can have someone come in, or get handouts and tell my story.  I would lean towards having someone come in, though, since I am no expert.  I just kept thinking that even if we cant get to the parents, for themselves, maybe we can promote some awareness so that their children can develop good  life-long habits while they are still young.  I have to think this through still, and see if they will even go for it.  It is probably a touchy subject for a group of moms who are looking for fellowship and a break.  We will see, I definitely wont drop this idea before it gets started.

Note:  I did edit this blog since posting.  My ADD was on overdrive that day, so I hope I added a little clarity.    

What is a survivor?

I have mentioned before that I have done several 5k run/walk events for breast cancer awareness over the years.  One of them was after my dear friend and my sons aunt lost her battle.  The team was named after her favorite movie, and I made everyone pink ribbons that had her name on them.  While I was at it, I asked around if anyone wanted me to wear a ribbon with a friend or family members name on it during the walk.  I ended up wearing 12 names that day.

In asking around, I got a couple of responses that did not make sense to me at the time.  They were two people who had almost identical cases, one had a lumpectomy, the other chose a mastectomy due to family history, but neither required any further treatment.  I asked them if they would like for me to walk in honor of them being survivors.  Both of them gave me almost identical responses.  They declined, saying that because they feel that because they only required surgery, that they didn’t feel like they had fought cancer and survived.  I felt it was very strange to say that after having been through surgery and recovery..

After hearing their responses, and in researching another cancer event that is for all types of cancer, I came across something very interesting.  Some event coordinators or team coordinators had posted on message boards asking how to determine who to recognize as survivors.  What?  Someone else is going to determine whether someone is a survivor or not??  To me that is nuts.  I had to read on.  The answers, and this was in several forums, were consistent.  If your doctor ever told you that you had cancer, and you are now cancer free, then you are a survivor, regardless of what your treatment consisted of.

I now understand how these two women felt.  I have heard people tell others about worse stories, as if theirs doesn’t compare so it isn’t important.  I have even had someone tell me that someone else’s surgery was worse than mine, so I cant wonder about their recovery.  I look at blogs and my little 6cm line across my bicep is nothing compared to some that are taking up more than that in inches.. I didn’t have to have my lymph nodes removed or have a drain.  I didn’t require extra medications.  I just have a 6cm line and have to go every quarter for skin screenings.  Sometimes I feel unworthy of sharing my story, because my melanoma was “just cut out” and I am “fine” now.

Luckily, every time I feel like I shouldn’t share my story, something comes along and shows me that I definitely should be sharing it.

Now, to throw a wrench in my thoughts about being a survivor.  Something I don’t know much about, and am only just learning, and need to understand more. With melanoma, survivor isn’t the right (or wrong?) term, it should be NED, No Evidence of Disease.  Like I said, I am only just coming across this term, it makes sense to me, since melanoma is the beast that is.  Yet at the same time, it isn’t making sense to me.  It is definitely something I need to research more.

Why Embracing My Own Glow?

It occurred to me last night that I had not shared the story of how my blog title came about.  I really have talked more about experience, not about our own natural glow, which is what the title implies.  I had been knocking around the idea of a blog, I talked to a couple of friends about it and they loved the idea.  Days passed, I had several posts written, but no title for the blog.  Everything I came up with involving Melanoma had already been used in some way.  I couldn't create a blog with no title.  After a few days, I decided I may be trying to hard, and I prayed about it.  I knew in my heart that God wanted me to get the word out about melanoma and skin cancer, so I knew that if a blog was what I should be doing, He would make sure the title came along.

A few days later, I shared a picture of my scar, 1 year after surgery, on my personal Facebook page.  I didn’t get too many comments, but one really did stand out.   She said that she had just gotten home from the dermatologist, that they had used nitrogen to freeze off some precancerous spots on her face, and that they had sent two spots on her abdomen off for biopsy.  Then she said she owns a tanning bed, and finished the comment saying “To ALL....Stay out of the tanning bed, and you have to get in the sun 30+ protection”   

You could tell she was very upset about this, and she shared her news and message on her own personal status as well.  As I read through her comments, it became very clear that she was done tanning, and was very interested in sunless tanners.  She even asked what I recommend.  

I had to type and delete my response several times, I didn't want to offend her or her friends, but finally answered by telling her what products I had used before to enhance what I “struggled to get from the sun”, but that since my diagnosis, I really had no interest in tanning or looking tan, that I had learned to embrace my own glow.  

Embracing my own glow!  It stuck in my head.  About an hour later I emailed two of the friends I had talked to before with the title, they both came back saying they liked it. It was available on both blogger and Facebook (I haven't done anything other than create the Facebook page yet).  It was clear that this was the title I had been looking for.

Fear

He will have no fear of bad news; his heart is steadfast, trusting in the Lord. His heart is secure, he will have no fear; in the end he will look in triumph on his foes. Psalm 112:7-8


I have wanted to talk about fear for a while, but I wasn’t sure how to approach it.  You cant have fear and faith in the Lord at the same time.  Satan uses fear as a tool to make you question your faith.  It is humbling to admit that fear is still a factor.  That we are only human, tempted, but through prayer we can come to peace with whatever may come, because we know that it is in God’s hands, God’s plan, God’s time.

I saw a PSA yesterday (if I knew how to link it, I would), that showed how even when melanoma was cut out, it could still spread easily and come back elsewhere.  Then this morning my devotional email had the verse above in it.  I knew today was the day to tackle this dirty little topic.  Just hope it comes out right.

One of the truths of melanoma, that even doctors will be vague about, is that there is a high probability that it will come back.  You get a hint at it when you are told that you will have to undergo skin screenings every 3 months for 2 ½ years and then every 6 months for 2 ½ years, and then if you have no reoccurrence for 5 years you can go back to yearly screenings.  It may come back months later, it may come back years later.  Usually when it comes back, it has spread, and melanoma treatment options once it reaches the higher stages is still very limited.

Yes, I know that this is worst case scenario.  I hope and pray that it never comes back for myself or anyone else.  However, if it does, I’m prepared.  I’ll fight whatever fight is in store, and I wont give up.   Taking it even further, absolute worst case scenario, I’m ready if the Lord says it is my time.  I’m a believer and I know that it is not the end, but only the beginning.

So why am I talking about fear?  I don’t even know if fear is the right word. Maybe it is more of a selfish concern based on experience.  Fear is the best way to categorize that, I guess.  Concern, worry, fear, they aren't really all that different are they?  So I will call it fear.

My fear is about my husband and children.  I know they will be taken care of, so I’m not worried about that.  I lost my mother at an early age.  I was 16, my parents were in their early 40’s.  I have seen my dad struggle with being a widowed parent.  Not in the love or caring for me department, but just certain situations.  There are certain conversations that should only be mother-daughter conversations.  For me as a teenager and as I got older, other than those conversations, I didn’t have my mother there for my graduations, wedding, birth of my children, at my side during my divorce.  Right before I walked down the isle the second time, my dad said my mom would have been so proud of me, I cried as I walked down the isle.  It was a happy cry, because I knew this was it, but also sad because she wasn’t there.  When I lost a baby, she was the only person I knew who had been through that.  Finding out I was having the granddaughter she always dreamed of was really difficult in a bitter sweet sort of way. I kept imagining her excitement.

Now by no means am I parent of the year.  I think that at times the flaws outweigh the good.  I do the best I can, my teenager still talks to me, sometimes. I’d like to think that I have some affect on their lives though. Even before melanoma, I always said that I wouldn’t wish losing a parent when you are still a child on anyone.  Even if parents remarry, there is always a void that cannot be filled.  So for me, personally, my fear is not of melanoma coming back, although I hope and pray it doesn’t, it isn’t of dying, it is because I know what it is like go through some very important years, without a parent.  I know it will happen eventually, melanoma or not, I just hope that it is when they are much, much older.

Approaching Others

This past weekend, I took my 4 year old to a birthday party.  It was outdoors, with a rented inflatable slip and slide, water guns, etc for the kids to play with.  The parents had set up a canopy cover on their driveway with chairs underneath, and there was also a tree near the driveway for anyone to stand under. Only a couple of the parents dropped their kids off, and the rest stayed.  The parents I knew all stayed near the tree and canopy, but the parents of his school friends moved their chairs out to sit in the sun.

After about an hour, one of the mothers asked the host if she had any sunscreen.  I offered what I had brought, it had been sitting in plain sight since we got there.  She called her son out and sprayed only his shoulders, and another mom then took the can and sprayed her child as he was in line.  I told my friend that I was so happy to have found a spray that works on my daughter.  She has eczema tendencies, according to the doctors, and the reaction is only brought on by sunscreen or insect bites.  This one is a generic store brand, and had to use it on her in a pinch when we were out of the other kind.  Thankfully she didn't break out in her usual full body rash. The bonus, it is only $3.99 a can!

It wasn't long after this that one of the parents returned.  She was super skinny, sickly so, wearing short cut off denim shorts and a tank top.  She had short brown hair, wore big reflective aviator sunglasses.  What really caught my eye, though, was that she was so tan.  Her skin and her hair matched.  It was pure leather looking stretched over her skin and bones.  I found that if I looked in that direction, I would stare.  I did my rounds in the tanning bed world, mostly just to get a base tan before the season.  I had family members that would get extremely dark, unnaturally so, but I had never seen anything like this before.  It is so unattractive.  I noticed all the other parents were pleasant towards her, but were looking at her with curiosity too.  As she left, I noticed her son was also very tan, probably had not used sunscreen all season.  I didn't know what to do. I wished that she had been there when the other parents were re-spraying their kids.  When we talked about how my daughter was "glowing white" next to all the other kids, I could have used that as an opening. I wanted to approach her, but I knew it would probably do no good and only make things uncomfortable for my friend. As she walked up the driveway, I wanted to run after to her.  All I could do was look.  I felt sad for her.

Once all the school friends had left, and it was just the personal friends, the topic of her tan came up. It was brought up by someone who has personal experience with skin cancer also.  She was talking about how unattractive it was and why anyone would want to do that to themselves. I said I just wanted to go up to her and show her my scar and tell her about the dangers of it.

I have done that before.  I was in line and a very tan lady was talking about maybe joining a tanning bed because she felt pale since she was back from vacation.  I turned around and said "I'm sorry, I wasn't trying to eaves drop, but being this close I couldn't help it.  I know that joining a tanning bed is your decision, but I would like to ask you to do some research first.  It isn't safer than the sun, as a matter of fact, you will be 74% more likely to get melanoma if you use a tanning bed"  She looked at me like I had lost my mind.  She was in her 50's, at least, and here I am looking half her age saying this to her.  I just turned my arm so she could see my scar, which was still fresh and ugly at the time and said, "I was diagnosed with melanoma a few months ago, and I just had to say something because I wouldn't wish that experience on anyone else"  She looked like she was having trouble with a response, so I turned back to my items so she wouldn't have to.  A few minutes later in the parking lot, she came up to me and said "I don't know what I'll do, but thank you for saying that to me."  

I don't know why I was able to approach one person and not the other.  Maybe it was mannerisms.  Maybe it was location.  Maybe it was that one was talking about it, but I would have been "coming from nowhere" with the other. I don't know that I would ever want to approach everyone I see, I think there is a time and a place for everything.  I do wish there was a good non-confrontational way to share the message with those you aren't comfortable approaching.  Those are the ones that you cant stop thinking about.

Am I THAT person?

On Sunday, I was standing at the information desk at church when someone came in.  As she entered a foyer area, a group turned around and welcomed her back from her vacation and started gushing about her bronzed skin.  I was about 6 feet from her, but watching this scene.  I know I was smiling as I watched this unfold.  She said she had a great week at the beach, then looked past everyone at me, and said "I used so much sunscreen, and an umbrella, my olive skin just turns brown so quick"  I want to believe her.  I am fair skinned and using a ton of sunscreen this year, but I even have a little color.  I just laughed and said "I'm sure you did, sometimes you just cant help it"  I am sure my response bent the truth as much as she had.  She looked relieved and went on with her conversation.

She was obviously aware of my presence and I know she knows my need to get the word out about being safe in the sun.  She has commented on links I have posted, and she talked to me once about my scar after my surgery.  It was like she needed me to know that she had tried, I hope, or that she was hoping I wasn't being judgmental because she was so tan.  

I have noticed other people doing that lately too.  Whether it be talking about sunscreens they use, making a big scene of applying it around me, talking about their lack of tan this year, how their children now ask for sunscreen, or how much better their trip was since nobody was sunburned.  

It has made me feel good that maybe the information I have shared has put that little voice in the back of their heads to make them more aware.  Even those who do not put it into practice, have said they appreciate what I share.  Hopefully soon, that will change for them.

I really do hope though that people dont think I am judging them or criticizing them. There are people in my life who have felt attacked because I simply said "I cant tan anymore" or because I was putting sunscreen on my children, without comment, as they were saying it was okay for her kids to get pink because it would fade to tan the next day.  I like to say that a guilty conscience is the one that overreacts the most.  I know that if someone feels attacked or judged, they will be more resistant to hear the truth.

I guess it is all about balance.  To the people who are listening objectively, I want to be that person who shares information.  To the people who are taking it personally, I really am not that person that you see coming down on you at all.

I was alone... for a reason!

Saturday I participated in Scan Foundation's 5th Annual Save Our Skin 5k run/walk.   I was hesitant to sign up and waited until the last day of early bird registration to do so.  About 2 months ago, I had one of those freak foot injuries.  It should have been nothing, but 2 months later it is still bothering me.  Also, even though I had asked family and friends to do it with me, nobody was interested.  Every time I thought about not doing it, I got a sick feeling in my stomach.  In a couple of Bible studies lately, something I have heard more than once was that if you have a choice and one makes you feel uneasy, that is what God wants you to do.  I have felt that way about sharing my melanoma story and getting the word out about skin cancer, but every time I try to avoid it, it becomes abundantly clear that I am supposed to.  With this event coming up, one thought kept coming to my mind.  Many people think skin cancer is not such a big deal, well, in the past 14 months, I have personally known 6 people who have been diagnosed with or treated for skin cancer.  That is 6 people in my personal circle.  That is not a big deal, that is a huge deal.

This week, on the last day of early bird registration, I woke up and my foot was feeling fine.  I decided, I'll sign up, so I at least have made a donation and we will go from there.  Everything fell into place. My foot never bothered me again during the week. My teenager agreed to watch the preschooler, since husband works Saturdays.  My uncle was having surgery, and it got moved to Saturday and the walk/run was halfway to the hospital.  Even Saturday morning, my alarm didn't go off, but I woke up in time to leave by 6:30 am.  I was supposed to be there.

Even as I arrived, and watched couples, families, or teams go in together, I wondered why I had to be there alone.  I have done four 5k run/walk events for breast cancer awareness, and have never had a problem getting a team together.  This was something that affected me personally, and none of those former team members were there. I really was taking it personally.  It was really hard to avoid a pity party, but luckily that feeling passed quickly.

I walked in and got my race number and was told to visit the survivor tent. Stubborn me browsed the booths that had been set up.  Radio station, salons, catering companies, gyms, stretch-massages one handing out information pamphlets and samples of sunscreens for the face or lip balms.  They had huge bottles of sunscreen out, which I was thrilled to see many people applying it to children in strollers.  They had a tent set up for free skin cancer spot checks. I dont know why it was hard for me to go over there, but finally watching the survivor tent wasn't enough.  Maybe it was the DJ on the loud speaker reminding survivors to go over there.  So when nobody else was there, I went. As I walked up, the lady asked me if I was a survivor.  I showed her the scar on my arm and said "I had melanoma last summer"  she handed me a button with a black ribbon hanging from it that said "SURVIVOR" and asked me if I am telling people about my story and encouraging them to be sun safe.  She said she was a 21 year survivor, but had had several places removed since then, and that she even still had people in her life that were indoor or outdoor tanners.  Her main message was to not give up.

As the race started, I moved towards the back of the pack, as I always do when walking so the runners can go ahead.  For about the first half mile everyone was still pretty jumbled together, but soon spread out.  I began to notice that the crowd was all ages from infant to one adorable elderly couple that you wouldn't think would walk that distance, much less jog it.  As people spread out, I was able to hear people telling their stories about why they were there.  There were people who had personally had skin cancer, people who were walking with or for a loved one, and people who were walking in memory of a loved one.  No two stories were alike.

I began talking to someone who had lost her sister to melanoma.  She was walking with her niece and niece's step-daughter.  It was their second year walking in memory.  As we exchanged stories, we found that even though our stories were so different, our quest for wanting to make those around us more aware was very similar.  We had people who supported us, because they love us and will support all we will do, and we have people who will just flat out tell us to shove it.  We have people who will thank us for making them more aware, and we have people who will tell us to get off our soap box if we just give a tip on how to treat a sunburn.  We have those who will share pictures of themselves in a tanning bed, or who will criticize us for using too much sunscreen.  We have friends or family who are more aware, and haven't yet changed their ways, but have told us to keep sharing with them.  We also have stories of people who have gotten checked, because of our experiences.

Suddenly I got it.  Every walk I have done before, I have been with a team.  Our team has stuck together.  Nobody in our team has really ever talked to anyone outside our group.  If I had a team, I most likely would not have approached the survivor tent, listened to stories of other people participating, or talked to anyone else.  I heard things that I needed to hear.  I realized that even though sometimes I feel alone in my feelings about having cancer, and not wanting any of my loved ones to experience it, I'm not.  There are a lot of other people out there who are fighting this same fight, going through the same opposition by people who think tan skin is healthy skin.  Yes, this was God's way of telling me that even though I feel like nobody supports me at times, I am on the right track, and am not alone.

This isn't to say that I am not hoping that some of my friends and family will join me next year.  I would love that, I really want to share this with them.  I think this year, this was what I needed though.

Just Thinking

I have wanted to get my story about my experiences with melanoma out for a while.  I wasn't sure how.  About a month ago, I decided that I should do it through a blog.  At first, I thought I would post all kinds of information, stats, tips, etc.  There are plenty of sites that do that, and while I am sure I will share some, I want to leave that to the experts.  Then I wanted to just tell my story, and hopefully use it to let others know that they are not alone.  I have felt very alone at times, due to lack of support from friends and family.  Most feel I should just move on.  Then I thought I would help people find the bright side of their experience.  There is one, I promise.

What I have found, is that this site is taking on a life of its own.  Last night I was working on a new post.  I thought it would be a recap of an event I participated in.  As I typed, an internal struggle that I had prior to the event unfolded.  I wasn't going to share that, it was the ugly side of having something that nobody takes seriously.  As it unfolded, I started having doubts about sharing it.  It is so hard to share that things aren't just peachy all the time..  So I didn't post it, yet.

As I laid in bed last night, it came to me.  These postings are taking on a life of their own, because, just as life, it is not scripted.  It isn't all sunshine and rainbows.  There are hurt feelings, friends lost, negative feedback, etc..  I am experiencing them, just as anyone else going through this would, and to not share that side of the story, wouldn't be true to myself or anyone else who may come across this.

I am not a "glass half empty" person, and I dont want to present myself that way.  However, I cannot beat myself up over sharing negative experiences or feelings either.  In order to overcome a challenge you have to face a challenge.  Through my journey, I have to share the challenges, so that I can also share the victories.

Support After Surgery

Support is a very odd concept.  Sometimes you don’t get the support from the places you expect it to come from, yet it comes from very surprising places.  Maybe it doesn’t come the way you want it to, but if you are open, it comes in very surprising ways.  Human nature causes us to focus on what we expected or didn’t have, rather than what is right in front of our faces.  This can be frustrating for those seeking support, as well as for those offering support.  The key is knowing the heart of the person, and what their intention is, whenever that is possible.

The day of my surgery, my husband wasn’t able to take off work.  He is in a seasonal business, so when he didn’t even try to see if he could take me, the logical side of me understood, but I really wanted my husband there at my side.  Luckily, my dad was there, as he has always been.  I really didn’t want him to drop me off in my driveway afterwards, though, I didn’t want to be alone.  As you can guess, the first moment I was alone, the full realization of what I had been through that morning hit me and I bawled like a baby.  On second thought, I really don’t like to cry in front of my dad or husband, or anyone else for that matter, but especially them.  Maybe it was best they weren't there, because I was able to cry it out, without having to feel stupid for doing so. After all, I’m the tough one, I’m not supposed to cry.

My surgery was on my arm.  I had another perfectly fine arm, and the rest of my body was okay, so I really didn't think I would need any help from anyone.  I believed too that life would go on after surgery.  I wasn't prepared for the impact that certain actions, or listening ears, or the lack of, would have on me.

The day after my surgery, my good friend called me and asked if she could bring me lunch.  Doing things with my “wrong” arm was quite annoying and any movement of my right arm pulled and felt like it was ripping my whole bicep back open.  So she brought her son who was the same age as my daughter and really good friends, and they played, while we ate and talked about nothing important at all.  She stayed for about 2 ½ hours.  When she left, I was amazed at how much a play date helped at that moment.  Normally play dates stressed me to get ready, I had an excuse not to worry about that, and it really helped so much to relax and chat with a friend while the little ones entertained themselves.

A couple of days later, another mom called and asked if she could take my daughter to the moms group/play date event that day.  I had already told this mom that while I appreciated the offer, I didn’t need her to bring me a meal. My husband is a pretty decent cook, when he has to be.  Well, she came in to pick up my daughter with food.  This wasn’t a casserole, like you would imagine, this was a full blown meal that caused my husband to ask “do other families eat like this?“  She brought roast beef and vegetables, baked macaroni and cheese, home made bread, brownies, applesauce and a gallon of tea.  I was blown away.  It was all in disposable containers, she had written reheating directions on everything.  It was enough food to feed our family (my son was returning from his retreat that afternoon) for two nights and the bread and brownies lasted even longer.  As I type this a year later, I still get misty eyed.  I still don’t have the words, it just amazed me that someone who I call friend, but really don’t know all that well, would do that much for me, and that it would really mean as much as it did to me and my family.

As I did more research on melanoma, and realized what could have been, or how important it is to be aware of my skin and my families. I would try to talk to people about it.  While my closest friends will listen and say they understand or didn’t realize that, or help calm me down, which is exactly what I need, there are the others who just don’t seem to care.

One of my closest friends said to me, as I was freaking out before the surgery “My mom had that, they cut it out, she has a scar on her leg now, but she’s fine” That is the only acknowledgement she has ever given. Or the other person who will tell me about other people’s almost identical experiences, but in a way that their experiences were 100 times worse than anything I could imagine so how could I say I went through anything.

It’s also disappointing when people you want support from go the complete opposite direction.  The person who calls you “gunshy” as you put sunscreen on your child.  The person who you overhear asking about your tanning history, as if you somehow asked for melanoma to invade your life.  The friends who no longer talk to you because they don’t want to hear that skin cancer is real.

There are the ones who bring up your scar several times each time you see them.  They cant believe that it still looks so bad.  A few hours later they will bring it up again asking if there is a scar cream I can use.  I truly believe they are trying to say that they know it bothers me and it would bother them too, but it doesn’t really bother me anymore. Should it?  It is a part of me now.

I think the worst though, is the people who ignore it all together.  These are the ones that didn’t respond when you told them you had it and they didn’t check on you after. If you bring it up, they quickly change the subject.  They make you feel like you should just keep it a secret and forget about it.

I feel like I am whining by talking about the disappointments when it comes to support, but I want to be real.  I have discovered that most of my feelings, that I thought were just me being selfish, are being felt by many.  There is nothing like feeling down on yourself for being in a pity party because someone didn’t react how you want them to, when you really don’t know how you want them to, and then seeing that someone else felt that way too.  You aren’t crazy.

Likewise, maybe someone is looking for information on how to support someone who is going through this.  Maybe a little insight into how they may be feeling will help.  If you are in this group, just listen.  When they feel down, give them a shoulder to lean on or an ear to vent to.  Just listen and let them know that you care and understand.  Even if you dont understand why they feel that way, understand that they do feel that way.  When they are feeling triumphant, let them know that you are happy for them and celebrating right there with them.  Tell them stories of others that went through it to encourage them and show them they aren’t alone.  At the same time, be careful that in showing them they aren’t alone, you aren’t saying that they shouldn’t have their own emotions too.

Surgery & Recovery

After calling my husband and my dad, and emailing church friends who had been praying for me, I had to call the bride-to-be.  Her wedding was just a few weeks away.  The surgery would be on my right bicep, during the ceremony and even in pictures, it would be facing the cameras and guests.  I cant remember if I had told her before that day that I had the biopsy done, but I was a nervous wreck talking 100 miles an hour by the time I got in touch with her.  I told her that I had melanoma, that it had to be cut out, and that I knew she wouldn’t expect me to wait, so I was going with it.  I told her that if she didn’t want me to be in the wedding, I understood, and she just told me that we could use make up to blend any bandaging or scar and of course she wanted me to go ahead with it.

I had my surgery on June 2, 2010.  I had arranged for my aunt to watch my daughter, my son was away on a church retreat, and my husband couldn’t take off work, so my dad drove me to the surgery.  I cant say enough how thankful I am that God has placed such an amazing medical team on my side.  Going through all the pre-surgical paperwork, the nurse was amazing.  When the doctor came in, I immediately liked him too.  He explains the procedure to me, draws the outline of the incision on my arm.  It was a football shaped outline, with the stitches from my biopsy in the middle, perfect.  He applies the local anesthetic, tells my dad that it is okay to take pictures and leaves the room for a few minutes.  Unfortunately, the light was too bright over the incision area, and none of the pictures came out.

Meanwhile the nurse comes in and helps me get settled.  I am laying on my back, paper sheets draped over my arm and chest that have openings for my arm.  In this position, I cannot see anything.  The doctor comes back in, and he calmly talks to me and my dad throughout the whole procedure.  We talked about everything from sports to children to summer plans.  I couldn't see anything, could only feel that something was going on, but that was it.  The doctor did explain every step of the way what he was doing now/next.  My dad was standing at the foot of the table, watching it all, and was as amazed by the whole procedure as I know I would have been.  I left the office a little over an hour later.  I had 2 layers of shoelace style stitching (I’m sure there is a medical term for that) under the surface, then the outer layer was steri-stripped.  Over that, there was gauze and a square of what looked like shrink wrap.  I was able to remove the plastic wrap and gauze after 2-3 days, but the steri-strip had to stay on 10 days.

I was amazed when I took the first “shrink wrap” tape off, I expected to be bruised in the area, but I wasn’t.  I did have some puckering, or “dog ears” at the ends of the incision line, and the center was pushed in deep where the skin had to be pulled tight.  I had tricep definition for the first time in my life.

About 15 days after the surgery, I got the call from my surgeon.  My results were in, and they got it all!

My recovery was not as fast as I would have liked.   I was able to remove the steri-strip on the morning of my friends wedding, but the area was too tender to even consider putting make up to conceal it.  Luckily, my friend did not even ask me to.  As the dissolvable stitching did it’s thing, one of the pieces poked through the incision line.  At my surgeons okay, I could clip it away at skin level, and he said eventually it would fully dissolve and go away, but if it really bothered me, I could come back and he would fix it.  This lasted the rest of the summer, and in August, as I grasped the end with tweezers so I could clip it, it finally came out.  I had been afraid that everything would heal around that spot, leaving a tiny hole in the middle, but it hasn’t affected the line at all.

Also, throughout the summer, I had no feeling around the incision line.  At the ends I could feel, but in the middle, and where the skin had been pulled tight, I felt nothing for an inch or two above and below.  Being on the center of my bicep, every time I moved my arm or lifted anything, and my muscle flexed, it would pull the area, which was a little scary at times.

Today I am happy to report that I no longer have any of those concerns.  After one year, I still have a slight puckering at the ends of the incision, but I have complete feeling around it again.  There is some redness around it still, which my dermatologist assures me is normal, but has also told me that once I reach the one year mark, I can have it laser treated to break up that redness.  I am not sure what I will decide about that at this point. Probably the most disturbing point of the scar, I have a large freckle on top of the incision line, exactly where the cancerous mole was.  My doctor has offered to remove this for me, but so far I have declined.

My follow up consists of going for full body skin screenings every 3 months.  If I remain clear for 2 ½ years, then we can switch to every 6 months.  After 5 years, then I will be able to go to yearly screenings.