Thursday, January 7, 2016

Stepping Out of My Comfort Zone

In October, the melanoma community lost a beloved friend.  I posted a tribute to her, and mentioned the first time we met. It began with "In November 2012, I stepped out of my comfort zone..."  I told of how I went to Charlotte, NC and I met her and her husband.  She was a blessing, and became a good friend.  She always had something nice and encouraging, or funny to say.  She loved life, she was feisty and spunky and always positive.  I prayed for her often, requested prayers for her often.  She would comment with a thank you to the prayers as she was going in for one of her many craniotomies.  Let's be honest, I don't think I would be able to be on social media before that.  Of course, it does make for a great distraction.  Several hours later, we would get a message that all went well. A couple of hours later, we would see a post about her hockey team, or hear she was cheering them on.  What a spirit!  Everyone who knew her loved her.  We all miss her so much.

Over the days that followed, the "I stepped out of my comfort zone" rang through my head.  I did something that I would have never imagined, I was brave and I made many great friends and memories in the process. I could have missed out. Last December we lost a family member suddenly.  She was like a second mother to me.  This December, my best friends mother-in-law passed away suddenly.  She was a good friend too.  Life is so fragile, we aren't guaranteed tomorrow, why are we settling for more of the same?  I started stepping out of my comfort zone.

In the process of this, I read a book called  How To Be Brave.  It is written for young adults, so it is told very simply. It is about a girl in high school, who lost her mother, and as she grieves, she decides to make a list of things to do.  Basically, she stepped out of her comfort zone and stop being scared to live.  I found this very relatable, I lost my mom in high school, I knew the grieving process and other issues she dealt with (slightly overweight, awkward, not knowing where to fit in), and here I was just about a month into stepping out of my own comfort zone.

So here's just a few things that I've stepped out and done differently.

I've been more involved in my daughters school.  A blessing of changes in our professional life.  Right now that has just been for class parties and in the lunch room once a month, I've also been able to join all school field trips.  Best of all, the memories that are being made.

I've been helping out with the church Children's Ministry.  Wow.  This one is big for me.  I have worked in the nursery since my daughter outgrew it.  I always said I didn't want to move up because I dont feel I am ready to teach.  Well, the opportunity came to help with the Christmas musical.  Since then, I've decided to stay on with the new program.  Nervously excited to see how this plays out.

Not the way we had been promised for years, but God had another plan and he has rewarded our patience to listen to his way and timing.  We have been so blessed, professionally.

Relationship-wise, I've stuck up for myself a little more.  Nothing huge.  Just saying, "You know, I'm not okay with that" or not putting up with condescending, snarky statements. Pointing out a repeated awkward situation to a friend, so they are aware and can help make it less awkward.  I've worked to make sure that a certain teenager realizes that I am not a taxi, but will help with transport if it is convenient to me, since they wont learn to drive.  Asserting without being bitchy is hard at first, but once you do your confidence is boosted and you find that you aren't as taken for granted.

I've stepped back a little from social media.  I still share a lot, but not as much personal detail as I did.  Maybe I'm getting older and wiser. Maybe I just realized that putting myself out there on social media wasn't the same as being in person.

Finally, all of us have had this conversation  "We need to get together soon."  "Yes! let's plan something" and nothing has ever become of it.  I'm guilty.  This year, I am following through.  I challenge everyone to do the same.  Respond with a date, if they cant, make them give you a date. Make it happen.  I met a friend the other day, we each had to drive 45 minutes to meet in the middle, and we each had 3 kids with us.  It wasn't ideal, but it happened, and we enjoyed it.  Leave these meet ups with a promise to do it again in so many weeks, with the intention to keep that promise.

Life is short, we aren't promised tomorrow, next week or even next year.  We can live it while we are here though.

First Things First

It's been a while since I posted.  I've been beating myself up over the last few posts.  I was in a bad place.  I knew it, I hated it.  Besides what I shared, my personal life was having a lot of changes.  Without too much detail, I quit my job in May.  Promises that had been made for many years impacting our family future were broken.  The outcome was ugly, I wanted no part in it, so I quit. I was lost & had to find a new direction. In September, my husband was driven to the point that he too had to get out.  Now we are on our own, professionally, and although terrifying, we have had faith and have been extremely blessed.   I also had personal relationships that were changing. Through transition, you learn who is real and who isn't.  Finally, the prodigal child decided our ways weren't catering enough, so he went to live with his father, only to return a few months later when the grass wasn't greener over there.  Things are better now.  Things are changing.  I'm happy again.  I feel different, new, but at the same time back to my old self.  So back to my lack of posting... I knew I had to address the funk, say that I am okay, before I moved on.  I honestly have barely been able to sit at my desk the past few months long enough to balance our personal accounts, much less posting.  So here we go...

Friday, July 17, 2015

A Note About Yesterdays Post

So yesterday I was whiny.  Please let me note that I am aware that I "just" have a new scar.  My cancer is not back, it has not spread.  Once again, I was able to "just cut it out" and no more atypical cells are in my body.  I am still 5 years NED.  I should be thankful.

8 1/2 years ago I gave birth to a beautiful baby girl.  She defied all odds, first infertility, then loss, then giving up, and finally being born with the cord around her neck and in a knot.  She is a perfect, smart, funny little girl.  She is a blessing on all levels.  So after she was born, I went into a depression.  I couldn't understand it.  Here I was, with my beautiful second child, my family complete.  Why was I in such a funk?  Nobody could see it, it was just there, and I couldn't explain the weighty fog I felt I was in. Well, it turned out that another gift the pregnancy gave me was a thyroid imbalance.  A few days on medication and I felt like a new person again.

I think any sort of health problem, visible or not, has an emotional toll.  Some of the less visible or stereotypical problems, people just cant or don't want to understand.  That can make you feel misunderstood or lonely.  I have felt both of those in the past month.

So God has blessed me, my cancer was found early.  It did not spread. I am now 5 years NED.  I need to stop focusing on those who misunderstand or criticize.  I have found a wonderful community in those who do.  I am so thankful for them.  No matter what stage, we are all welcome, known, loved and cared for.

I'm not going to quit sharing. I cant.  I believe that my melanoma was found early, so that I can share.  I will work on how personally I take the dismissive responses of others.  It isn't a reflection of me.  It is a reflection of them.

I have seen someone who in the presence of 3 melanoma warriors, and another who has had one of the carcinomas removed and had to rebuild her nose, gets blistered red, and snaps at people when they comment about her needing to be careful, stating she will be tan tomorrow.  She likes the provoking feelings she creates, not just in this, but in all aspects of life.

I have seen tan people listen, ask questions, say they didn't realize, they will think about it.  The seed is planted, now it just needs the right nurturing.

As warriors, we need to focus on the nurturing, eventually the others will come around.  Just pray that they get it before they get it.

I will work on this.

Thursday, July 16, 2015

5 Years NED - Scars

I just read over my post from last month.  I think I should have called it the lonely side, but instead I called it emotional, because I was a basket-case then.  I think the thought of having a scar on my face, right above my eyes, which I consider my best feature was scary.  You learn a lot about yourself and your vanity with this disease.  While you prefer a scar to a cancerous tumor, you still have to emotionally accept some of the scars.  Some of them take some getting used to.

I went through that a little bit with my bicep.  I think my scar is great, it has even had a shave biopsy off the top of it.  It is a line scar, has a little bit of red pigment, and 5 years later it still dimples out on the ends.. While I am so thankful that my 3" scar is not more, I did have to come to terms with it being somewhere that it was always seen.  Now, I love that I have instant access to an example of what melanoma can be, even when caught early.  

I didn't have it so much with the one on my scalp.  It is a 1" scar, a perfect silver line.  He did amazing.  He left a 3/4" scar from the biopsy, then went around that for the wide excision.  By the time he "pulled everything back together like a gift box", as he put it when he asked the nurse to hold it, there isn't even a bald spot. Just a line that you can see because it is right in my part, to the side and where the bangs come forward.  I will point it out to people, and I have made them feel the "divot" that was left behind.

When it came to my forehead, I was extremely nervous.  I guess I tried to express that nervousness to the wrong people.. aka those I know in real life.  I was told that it wouldn't be as big as the one on my arm (3"), I wish she had said the one on my scalp (1"), but she didn't.  So that told me it would be somewhere between.  She did the biopsy as an excision, so that she wouldn't have to go back and take more, if it was something.  Plus a punch or a shave would have left an ugly scar, she wanted me to have a line scar that would blend in with the lines on my forehead.  I heard a lot of "you'll be fine", that may have been their way of support, but to me it felt dismissive.

After the excision, I had to keep pressure on my forehead for 24 hours.  She hit a vessel, and this would keep it from forming a blood pocket underneath.  My bandages went from my eyebrow to my hair line.  I didn't know what to expect.  I knew I had 3 stitches, but were they close together or far apart?  After 24 hours when I changed the bandage, I was shocked.  It was just over the width of my index finger!  I was so happy.

Over the course of the first week, I cut the strings on the stitches a little shorter, so by the end of the week, I was using a strip of gauze and paper tape to hold it on.  I actually got a snarky comment about my bandages getting smaller.  I responded about cutting the stitches down and how glad I was that they were.  "Yeah, it obviously doesn't cover your whole forehead like you acted like it would"  What??  I was told it would be bigger, I'm thankful it wasn't and you are going to act like I was attention seeking.

Then came the stitch removal. I was as excited as possible, because I could tell the incision was going to be a "cute" little line. Unfortunately, one of the knots was inside the incision line.  He had to partially open it to remove the stitch.  I was pissed.  I went from a line to what might as well have been a shave biopsy in appearance.  I had to heal again.  So I kept it covered for another week.  I slowly started going out with it uncovered, because I was sweating off the bandages (gotta love southern heat/humidity). I got so many comments along the lines of what I heard above.  Again, I learned that I tried to seek comfort from the wrong people..

Since then, I have only allowed one picture of me.  At one of my best friends wedding.  I'm not one for selfies, unless there is a reason, but I have avoided group pictures, selfies, everything.  I know, let me repeat, I KNOW, this scar is not going to be noticeable to those who aren't looking for it, but to me (and I am getting misty eyed as I type), it is what I see.  What I see is a hole in my forehead.  Am I thankful that it is just a little hole in my forehead? Absolutely.  My appearance has changed, however slightly, or visibly, it has changed.  I have to come to terms with that.  I know I will.  I know soon I will embrace it, just as I have the other two.  I have already told a tanning family member that her behavior is why I have a hole in my forehead right now.  It's coming.

I just wish that people in my life understood that what I was told, was different than what was. That they were thankful with me, that it was smaller than I was told, not larger, and that all the atypical cells were taken the first try. That they didn't act like I was just making up what I was told.  I mean I wouldn't have purposefully acted like a visible scar would be larger for attention, the truth would come out eventually.

I have many scars, I had 2-3 biopsies at every dermatologist visit over the course of the past 5 years.  They are all over my body, from between my toes to my scalp.  These 3 are the biggies.  I honestly hope that my forehead continues to heal in a way that it is not noticeable unless I point it out. A month later, it is a red hole.  I hope I grow to embrace it, sooner rather than later. Honestly, I feel like a petty little drama queen at the moment, because I am having to adjust to the change, because they are critical and dismissive, because I am vain.  I think I am beating myself up for even having these feelings probably to the point that I am making them worse.  I am thankful for this blog, that I can express the feelings, regardless of what they are, claim them as existing, and hopefully begin to get some closure over them.

Saturday, June 6, 2015

5 Years NED - The Emotional Side

I'm a little emotional today.  I've been in a funk all week.  I don't know why, but if you have ever been in a funk, you understand how the little things tend to become bigger than they should be.  Things bother you more, and that sometimes just letting it out can help you feel better. Please bear with me, because I'm resurrecting my blog as an outlet.

I feel very alone in my personal life when it comes to my melanoma journey.  I am so thankful for the people I have met online, my melahomies.  Even though my early stage journey is nothing compared to what some of them have been through, with multiple surgeries, treatments and even loss, they have never once made me feel like I don't belong.  I am so thankful for each and every one of them/you.

This week I celebrated 5 years NED.  I made a quick post about it on Facebook, but knowing the nature of the beast, in my mind, I compared it to a birthday.  Oh, this big birthday is coming up, and you wake up feeling no different the morning of.  Even so, I was very disappointed that my family didn't seem to care.  I know it was Facebook, but any other cancer and they would care about 5 years, right?  It was disappointing, it hurt.

So I ended the week with a trip to the dermatologist.  I have one mole on my arm, that I subconsciously pick at, and don't realize I've done it until it is blistered or scabbed over.  I asked her to remove it.  She said she wasn't concerned about it, it was flesh colored, had an ugly black hair, and had not changed in size since she first measured it years ago.  It is being tested, but was really just a cosmetic thing.

As she checked me out though, she asked about another spot on my forehead.  I have mentioned it once before.  I reminded her that she said it was an age spot.  She brought out her lighted microscope thing.  She said it looks more like a mole, but it is a purple/blue color.  You don't have any other ones like that.  I asked her if she thought it changed, and she said yes.  So on Thursday, I get to go back for a surgical appointment so that she can remove it in a way that will leave me with "a small line scar, not as big as the one on my arm, that will blend in with the lines on my forehead"  I came home and inspected what is still just fine lines, thanks partially to the mini-facelift I got with my scalp excision 2 years ago.  I'm not so thrilled, but as I'll say in a second, I prefer a scar to the alternative.  My family's response.  I haven't really gotten much of one yet.

So, there's the latest on what I like to call the roller coaster ride of my melanoma journey. Please don't get me wrong.  I am thankful, words cannot describe how thankful I am.  I was around a lot of friends and family last night.  I really just wanted someone I could physically touch or hear to give me a hug and say "I'm glad you are at 5 years NED" or "I hate that you have to have another excision, but everything will be okay no matter what"

On a good note, my family may not be checked in, but I did get one person to stop ignoring a spot that was bothering them.  Our neighbor found out she had to go back in for further excision on atypical cells.  I told her that I was glad she got checked and that my theory was that I'd rather a scar than cells that could grow into more being on my body.  I told my dermatologist about this conversation, that she had said she got checked because of me, and she, the dermatologist, said "I really hope you did say that to her"  "Of course I did, this isn't anything to play with"  She just smiled and said she was glad I got it.   Oh, I get it all right.

Wednesday, December 17, 2014

Life Changes

You are in your prime years.  You have a wonderful family, friends and life is good.  Everyone is healthy and happy.  

Then suddenly one day, you get a phone call.  "I'm sorry, but your test came back, and you have cancer.  You are lucky though, because it was caught early, but you do have to have one more surgery because they cannot rule out a tumorous spread"  You are crushed.  

You have the surgery, you recover and are left with a scar from the incision, but the news is good.  They got the entire tumor this time.  You don't need any further treatment, but you will have to have scans every 3 months for a few years, then every 6 months for a few years, then after 5 years, the screenings are just yearly.  

This is commonly known as remission or cancer free.  There's one problem though.  Your cancer was melanoma.  It is different.  With melanoma, even if they remove the entire tumor, you are not cancer free.  That's because just once rogue cell can get into your bloodstream and one day, with no warning, decide to grow with fury again.  That one potential cell keeps you from being cancer free.  You don't know if or when it will ever return.  You pray it won't, but the possibility never leaves your mind.

Your friends and family don't understand.  They think you had it cut out, so you are okay.   You find yourself constantly trying to educate them.  They just don't want to get it.  They make jokes about tans and paleness.  They tell you they respect you, as they check in at the tanning salon.  They tell you that you are being too sensitive, as you struggle about whether or not to react to their jokes.  They tell you that they have had precancerous spots removed, that they were told by their doctor that all damage to their skin was done in their youth.  You get very good at tuning out the comments. You are also good at thanking people for their compliments about you smelling like a beach. You learn to be very non-confrontational when you are tuning out a conversation someone you don't know is having, and your mutual friend asks you what your thoughts are.  You learn not to take the comments personally. You also learn that every conversation isn't the right conversation to be educating. You pray for the day that everyone gets it, not just out of respect for you and your experience, but also out of respect for themselves.  

Saturday, May 31, 2014

Summer Camp

Summer is here!  School has been out a week and a half, and camps are starting.  

Tomorrow is also 4 years NED for me!

4 years ago, while my then 13 year old son was getting blistered at a youth retreat, I was having a wide excision on my bicep.  How far we have come since then.  He came home with a blister on his shoulder that covered the whole thing, and had scabbed over already because a girl had scratched him.  It was nasty and he was not comfortable at all.   Since then, he has resisted my message because "You know how many people get skin cancer, and are okay?"  I keep sharing, and last summer he was proud of how little tan he had.  He is olive skinned with dark hair, so the burn I mentioned was one of very few in his lifetime.

Yesterday my daughter returned from her first camp.  She was gone for two days and had an amazing time.  I had heard horror stories of kids coming back from this camp blistered each year.  So when I signed her up, I had a talk with the leader.  I told her "You know my history, and you see how fair she is, sunscreen is not an option to be avoided"  She agreed, assured me that there were plenty of counselors that would help, and that they were aware of how many more fair skinned kids they had this year.

So drop off comes along, and I was talking about how I had packed her bag in a way that she shouldn't be able to lose anything.  Another mom, the one who was there with me just last year when I got the call that I was going to have a wide excision on my scalp, says to me "Yeah, she will lose stuff, come home sunburned and exhausted"   Nope, I had talked to the appropriate people, drilled my already sunscreen aware daughter about how to make sure she has it, packed enough for her entire cabin...  Yet I couldn't get that statement out of my mind the whole time she was gone.

So as I am watching the kids get off the bus yesterday, I don't see any red faces, other than on the counselors.  Finally mine comes off.  She was slightly pink cheeked, but that was it.  After we got in the car, she told me, without me asking, that she had told them to put sunscreen on her every morning and that they listened, but in the afternoon when she asked for more, they had told her to wait.  She said she wore her rash guard with her swimsuit, and I have seen pictures of a couple of other kids that had them too, and she was glad that even though her face got too much sun, she didn't burn.

While I am not thrilled that they did not reapply, I am glad that she spoke up and asked for it, and that she used the rash guard.  Other than one evening thunderstorm the first night, it was very sunny this week, so to come home with pinkish cheeks that have already faded was huge in my mind.