Wednesday, January 18, 2012

Have Faith...Don't Give Up

I feel so much better than I did when I made my last post.  I get frustrated with people who just dont want to hear the truth about melanoma and skin cancer.  Not to get all political, but I once heard a politician characterize the other party in a way that I think can also apply to the tan vs natural argument.  He said that the other sides views were unfounded, so they would first attack the sources and then the person making the statement.  The tanning industry will first attack the victims, then the foundations and then say they are all in the sunscreen industries pocket.  Skin cancer is just made up because the sunscreen industry wants you to buy their product.  What?  Tell that to my arm, abdomen, neck, thigh, forearm, calf, those scars and divots are there because the sunscreen industry wants to make money?  Tell that to the people who are fighting this disease.. Tell that to the families of those who lost their lives because of the beast..  Do you know how ridiculous that sounds?

Enough of that, that isn't why I am posting today.  Other than saying that I am in a much better mindset, I wanted to share that I got some encouragement this week from an unexpected source.

So on Sunday I was working in the church nursery, and I was talking to my friend about what had happened, and as I said that I paid the price for a tan, one of the ushers walked in.  He asked if I had had a basal cell carcinoma or something and I said no, I had melanoma.  He said "oh yeah, I remember that now, you helped at the youth conference right after that"  Yes.  Then he goes on to tell me how one of his best friends and mentors had died of melanoma, from a mole that he put off getting checked and he knows it is nothing to play with.  He said he learned a lot about God and faith from this person, especially in how they fought their battle.  When I told him my story of how my mole was watched and then I put off getting it rechecked, he agreed that I was so blessed to have still gotten it removed in the early stages.  I told him that I had been taking steps to get the word out about the dangers of melanoma and skin cancer, and also for sun safety, but that I had no support from my immediate family in doing so.  He said, "have faith, they will come around.  Don't give up"  That was something I really needed to hear at that time.

I'm not giving up.  An opportunity has landed in my lap.  I will explain more about that towards the end of the month, but I get to take three of my passions, God, healthy living, and skin cancer awareness through my story, and share them all.  I'm not giving up.  I'm not going to be discouraged.  My family will come around.

Saturday, January 14, 2012


This is raw, it's emotional, it might not even make any sense.  It is a vent.  I just need to get this off my chest.

I am so thankful for the melanoma community.  I feel like I sometimes live to separate lives.  In one life, I am wife, mother, daughter, friend who had something wrong with her, got it fixed and now wont move on with life. In the other, I am a fellow melanoma and skin cancer warrior, 1.5 years NED, a small fry in the community, but sharing in the fight to get the word out.  Although my only connection is through Facebook and blogs, I am so thankful for that connection to keep me from feeling like an isolated lunatic.

Last night was a perfect example of that.

In the afternoon, I was talking to my aunt.  She watches Dr. Oz and I was telling her about reading all the statements in response to his show where he implied that tanning was a safe way to get vitamin D in the winter months.  I told her that the American Academy of Dermatology had issued a statement and so had AIM at Melanoma.  My son was sitting next to me throwing in comments about how stupid it was and that nobody should listen to a TV doctor anyway.

So last night, my dad and brother came over, and we took my son out for his birthday dinner.  Once we got home, I was playing on my phone and saw that Dr. Oz had issued a statement in response to all the criticism.  I told my son this, and my dad asked what happened.  I told him a brief version of what happened and what Dr Oz had said. He said "Are you kidding me?" and went on to tell me that it was a crock and that tanning beds were safer, they don't even penetrate the skin, etc.  When I told him I blame the tanning bed for contributing to my melanoma, he said that was ridiculous, that I spent so much time outside on the ball field and at the pool and lake.  I said I don't completely blame it, but I do believe it contributed.  He said there was no way that there are studies proving otherwise.  I said that those were by the tanning industry.  I said that with a tanning bed you are 74% more likely to get melanoma and tried to explain what the UVA and UVB rays do to the skin.  I also said that there was a study saying that melanoma appears 15-20 years later, and that is exactly what mine did.  Since he didn't buy that, I asked him how he could explain that my melanoma mole appeared while I was working at a gym where I used the tanning bed.  He said that was all nonsense, that it was just my lifestyle at the ball field and all that.  I asked him what he thinks of the statement that a tan is an indicator that the skins DNA has been damaged, and that it is like a scab protecting itself until it heals.  He again said it was ridiculous.  It got all heated.  The real kicker was that he said he used to believe all that too, but then he did the research. He wanted to know where I was getting all this information, I said from the Skin Cancer Foundation, American Academy of Dermatology, World Health Organization, experts in the field, the list goes on. I told him that I trusted that more than any of the studies I had seen that all lead back to the tanning industry, who is out to make a buck, not save lives.

It was very heated, I was feeling very attacked.  My brother was just sitting there watching us go back and forth.  Then my son comes out with the whopper.  "Who cares, let them tan, they will get melanoma and just get it cut out like you did" A whole new can of beans was opened.  Let me tell you about melanoma, I was lucky,  melanoma isn't just cut out, there is no cure for melanoma.  Once it is in your system, it can return any time, any where and it can be deadly.  Why do you think I go every three months to get my skin checked?  The room went silent. I was stunned,  I couldn't believe it.

My husband was out of the room when this happened.  So later on he asked what was wrong with me.  I told him what happened.  His response.. Silence.  A few minutes later, I turned over and nudged him.  I told him that I needed him to support me.  (Just a note, when I found out the latest spot was possibly a lentigo maligna and what that meant, I got a twinge of understanding from him)

I have two thoughts after last night.  1. I'm still too emotional about this to speak and educate others.  2. If I cant get my family to understand, can I really get others to?

No, I'm not going to stop trying to get the word out.  As a matter of fact, I am going to start posting facts on my personal Facebook page again.  I am going to continue with my plan of living life this summer, and showing that the outdoors can be enjoyed safely.

Friday, January 13, 2012

That Ah Ha (aka UH OH) Moment

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

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

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

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

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

Thursday, January 5, 2012

Finally... Pictures of My Scar

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

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

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

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

Probably the last picture of my mole

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

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

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

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

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

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

Tuesday, January 3, 2012

Seeking Balance in 2012

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

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

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

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

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