Monday, June 27, 2011

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.

Monday, June 20, 2011

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.

Friday, June 10, 2011

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.

"You Have Melanoma"

Around 2003 or 2004, I noticed a mole had developed between my big toe and second toe.  At first it wasn’t dark, and I had just began wearing flip flops that year for the first time since I was a kid, so I thought maybe the strap had caused a bruise.  The mole continued to get darker, and another almost identical one developed on my arm.

In February 2006, I finally went to the dermatologist to get them checked out.  I had not been to a dermatologist in years, and every spot I had removed in the past had come back clear.  The doctor took one look at the two spots, and decided that yes, they should be checked out.  She decided that she would biopsy the one between my toes, because the scar wouldn’t be so obvious.  She said if it came back positive, they would have to also check the one on my arm, but if not, then she would want to check my arm again in a year.  It was negative.

In the spring of 2010, I still had not gone to get my arm checked again.  One of my best friends was getting married in June, and I was going to be a bridesmaid.  After one of her bridal showers, I was standing outside talking to her and her Matron of Honor.  I noticed that her MOH kept looking at my arm.  This had become a habit for many people at this point.  The mole was on my bicep, it was big, black and brown, shaped like a ghost from an 80’s video game.  You cant really say “Eyes up here” in the same way with a mole as a woman could with her chest, though.  I decided right then that I was going to get it looked at again. Soon.

A few weeks later, I was talking to my aunt about her vacation, and she mentioned that she was disappointed that she was going to miss the free skin screen because she was leaving that day.  In May, Skin Cancer Awareness Month, my health care provider offers a free skin screening clinic, whether you are a member or not.  I decided I had to take advantage and go to that.  There was no appointment needed, so on May 5, I go in, fill out my form and wait about 10 minutes to be called back.  They asked if I wanted to do an upper body or full body screen, and I told them upper body because I had one spot I was concerned about.  Within another couple of minutes, the dermatologist comes in.    I pulled up my sleeve and she did not hesitate.  “Yes, we need to get that one checked”  We set an appointment, the first available, for May 24, to have a biopsy done on my arm.

Now, here is how na├»ve I was.  In between that time, I was wearing tank tops, standing out in the sun, just wanting to get my freckles to pop.  I loved the freckled, sun kissed look.  When my face had just a little sun, the dark circles under my eyes weren’t as obvious, I could just wear eye liner and a little powder to keep the shine down.  It was easy.  I also went to a festival, wearing a tank top, and even though I reapplied sunscreen to myself and my daughter every hour, but we both got really red that day.  In my mind, I was still invincible.

On May 24, I went in for my biopsy.  The doctor said hello and asked me to show her the mole again.  As soon as I pulled my sleeve up, “Yes, I remember this one”  My heart sank. I knew then that my results were not going to be good.  She used a 10 mm punch, like a hole punch to remove the mole.  It required 3 stitches, and the incision was approximately 1 inch long when she was done with it.  I also had her remove a spot on my leg that I was tired of nicking it with my razor.  That spot required a 4mm punch and only 1 stitch.  I was to come back in 10 days to get the stitches removed.  My dermatologist is so enthusiastic and informative, that the geek in me left the office more excited about how neat the process of using a punch to remove a mole is, than worried about results that I should get in 7-10 days.

Less than 24 hours later, I get the phone call. The spot they removed from my leg was fine, as expected, but my arm was not.  I had Melanoma In Situ.  She explained that “in situ” means that it is in the surface layers, but then continued to say that while they felt they got it all, but that they couldn’t rule out that the tumor had spread.  I would need to see a general surgeon, he would remove a 6 cm by 2 cm section of tissue around my biopsy spot, and I would be left with a line scar.  Again, my dermatologist left me with such a calm about the entire process.  This was what was going to happen, and I would be okay.  I am so thankful that God saw her as a good match for me the day of the walk in screening.

Thursday, June 9, 2011

My Love Affair With The Sun

I have fair skin, dark hair, green eyes.  I grew up as a burn once each season, freckle a lot, tan a little, type of person.

I loved the sun.  I loved the way it felt on my skin. I loved that it felt like a warm, comforting hug and instantly put me in a better mood. A warm sunny day means getting outside and enjoying life.  I still feel this way, but it is so bitter sweet now.

Growing up I was always outdoors.  I played a lot of sports.  I would play softball for both a recreational league and the church league.  I was the only girl in the neighborhood, and had to be able keep up with all the boys in order to join in, whether it be playing baseball, football, climbing trees or riding go-carts.  I had a pool in my backyard and spent several weeks each summer at my grandparents cabin on a lake, fishing, swimming and water skiing.  I never used sunscreen, unless I was already burned.

I never was one to seek a tan, but spending so much time outdoors I did have a tan by the end of summer.  I was in high school in the early 90’s when tanning beds became popular.  Both my parents went, and by the time I was about 15, I was joining in.  Only to get a base tan before spring break or summer break, not to get a dark tan.  By summer, I was back outdoors again, although less keeping up with the boys, and more time in my own pool or at the lake.  After high school, I joined the work force, had a family and didn’t get as much time outside.  Every couple of years, I would join a tanning bed for a couple of months, just to get a little color, but again, not getting dark.  A base tan is healthier than a burn, right?  That is a trick question, neither are healthy.

What is Embracing My Own Glow?

Embracing My Own Glow is the story of one Melanoma Survivor who loves the outdoors, seeking understanding of the disease, and adopting new sun safe lifestyle.

I want to tell the story of my experience. Hopefully inform others about Melanoma, that it is real, it can happen to anyone, of any age.  I want to show that you can enjoy the sun safely. I hope to provide enough awareness that nobody else in my life has to hear the words “You have melanoma”.

I am not a medical professional or an expert on skin cancer.  However, I want to share any information that I come across, that may be beneficial to anyone else who has Melanoma or any other form of Skin Cancer.

I am not a writer, but will do my best to proofread my posts for grammar and use spell check.  Please be patient with me if I miss something