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.

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.

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.  

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.

Hello Again

Hello Stranger, It’s been a while.  I can’t really pinpoint why it has been so long. 

There have been many times over the past year that I have wanted to blog.  I am working almost 50 hrs a week, have a side business, my kids are now 7 & 17...  There just aren’t enough hours in the day sometimes.

I think I also put a lot of pressure on myself as far as the page and blog were concerned.  I started it with the purpose of sharing my story and experiences, but then I somehow pressured myself to find an additional direction that may not have been necessary.

Finally, I was very confused about a lot with my diagnosis.  Last May, when I was having a wide excision on my scalp for a dysplastic nevi that they could not rule out was in situ from the biopsy (it was ruled out with the WE), the doctor made a comment about my original melanoma being stage 1.  WHAT??  I had no idea and had never heard anything other than in situ.  So I talked to my dermatologist, I looked at my pathology.  I still wasn’t clear.  Basically, the best way I can comprehend it was that my original diagnosis was in situ, but they “couldn’t rule out tumorous spread”.  Well, when I got my results after that wide excision, the surgeon only told me that I had clear margins.   I always wondered why my in situ follow up program more resembled that of someone who was stage 1.  It’s very confusing to me.  I think I had to take some time away from sharing, although I do still on my personal facebook page, and in real life, to absorb that change. 

I’m thankful that my follow up has been more proactive in the past few years.  My last appointment was the first after graduating from the 3 month to the 6 month screening schedule.  I am still donating 2-3 moles at each check.  The last one, I had a heart shaped mole on my finger.  I have traded it for a cross looking scar.  I also had one on my leg that was removed.  It was dysplastic, but with clear margins.  I have been told to watch it for brown spots as it heals.  I go back in July or August for my next check.

So that is a quick update on where I have been and what’s been going on.  I have been feeling inspired to blog about experiences again, but felt an update was needed before diving back in.  

Round 2

I have been wanting to write about recent events, but when I have the time, my mood hasn't been right.  I have been on an emotional roller coaster since this happened, and I knew that some of those emotions needed to be shared in a more constructive way than I was prepared to do at that time.

At my last dermatologist check in February, she removed 3 moles, but told me that "The mole on your scalp still looks fine"  While she meant that as reassuring, it set off warning bells for me.  She had always called it a freckle before.  So I began watching..

I went to get my hair cut, and my hair dresser is also a good friend.  As we talked, I mentioned it to her.  She said, "Yeah, I noticed that too".  My dermatologist does free scans on a specific date in May, so I decided that when I took my son in 2 weeks I would just have her take a peek again.   Well, paranoia set in.  I couldn't stop thinking about it.  I thought it was getting darker, raised, irregular borders, irregular colors, etc... Or was it?  I really couldn't tell.  When my son went out of town the week of the free screening, I decided to call.  I got an appointment for the next day, with a different dermatologist on the day that my dermatologist was doing free screenings.  I decided if anything happened, I didn't want to have to come back for that biopsy.

He walked in and barely looked at it and told me that it didn't set off warning bells, but since I said it was changing, and with my history, he wanted to biopsy it.  He assured me that he wouldn't take more hair than he had to, but of course I told him that would grow back.  I left the office with a 3/4" incision with 3 stitches in it.

7 days later, Dr B called me.  It was the news I expected, but that I didn't want to hear.  I went back the next day and wow, what a procedure.   Dr B met me in the waiting room, since his nurse was busy.  Before I even sat down in the room, he was looking.  He's very tall, so he just stood over me and looked.  After measuring he said that he wouldn't be able to do a larger punch biopsy as planned, because it is an odd shape and bigger than he remembered.  So scalpel it was.

We talked the entire time. The nurses changed shifts. I thought he was done stitching, but then he asked for the cauterizing tool.  I don't want to think about what the tugging I thought was stitching really was.  Then he asked the nurse to push my head together like a gift box. He then made a joke about an unnecessary face lift.  

Long story short I walked out an hour later, it seemed like a few hours though, with what he called 3 buried stitches and then 4 on the top. Since it was basically taking a larger section around what had already been taken, the new incision didn't look much larger than the first, but it was a lot more painful than the biopsy, I spent the weekend doing a rotation of ice packs and pain pills (not prescribed, unfortunately).  I spent the first week getting migraines.  My wonderful husband planned a Memorial Day cookout at home, since he knew I couldn't do what I had planned to do, thanks to the headaches.

On the 3 year anniversary of my original melanoma diagnosis, I got the call that the second time the margins were clear.  So thankful.

This is just proof that knowing your own body is a good thing, it is required when it comes to melanoma.  Considering that he said the spot had gotten bigger in the week between biopsy and excision, it was on the move.  If I had waited until my regular appointment in August, who knows where it would have spread to.

Life in Situ

Life in situ is a very strange and confusing place to be.

Almost three years ago, when I got that diagnosis, I didn't know how bad melanoma could be.  I had my initial screening with the dermatologist.  She performed the original punch biopsy that left me with a 1" incision and three stitches.  Then she called and said that it was Malignant Melanoma in Situ, but that they could not rule out a tumorous spread, so I needed to see a general surgeon.  He would take out a 6 cm x 2 cm section of skin around what had already been removed.  Then I would see her every three months for a few years and every 6 months for a few and after 5 years if it hadn't come back, I could go to yearly.

Ok, lets get this sucker cut out and move on with life.  But wait! There was more...  What is this about seeing her every few months?  It's gone. That's when I began doing research.  

Doctors hate it when we research.  We definitely know which questions to ask, but we also make situations much worse than they really may be.  As I researched, I became uneasy.  They originally couldn't rule out the tumorous spread, but they believe they got it all the second time.  Why was it in situ if they had to go so deep I had two layers of stitches below the skin and a steri-strip seal on top?  Why have I never gone for any kind of scan beyond a skin screening with my dermatologist?  Should I be?

On on hand, I am extremely thankful that it was caught early.  I am so blessed and I thank God for that every day, every time I see my scar, every time someone asks about my scar.  I watched this mole for several years, it was a "twin" and the previous dermatologist decided to take the other one first for cosmetic reasons because it was between my toes.  It came back fine, so I had a false sense of security, and the "come back next year to check your arm" became 3 years very easily.  It wasn't until I realized that people were talking to the mole on my bicep instead of me (or even my chest) that I went back.  For it to still be in situ, I have no words for how thankful I am.

On the other hand, you become a bit of a hypochondriac.  Every single mole, and even my millions of freckles, are suspicious and many have been sacrificed "just to be sure".  As I've done research, I've discovered that melanoma probably wont reappear on my skin.  That is worrisome, and I am not the worrying type.  Although I was in situ, that ugly bugger was still on my body, so the fear of it returning in my body is sometimes hard to shake.  Just this week, while sick and on cold medicines, I was stuttering and slurring.  My ADD has gotten much worse since things in my personal life has changed.  It's hard not to let the mind go there, when you know what this monster can do.  I suffer from polycystic ovaries, if I have pain and it isnt the usual time in my cycle, guess where my mind goes.  Now I know that because I caught it early, there is an extremely high percentage of a chance that I will never see melanoma again personally.  That does bring me comfort when my mind starts going where it should not go until the time for it to go there gets here.  However, it also plays a very motivating factor in why I have changed my and my family's lifestyle and am always eager to get the word out.

People in my life treat me differently.  I've mentioned several times that I do not share who I am publicly because my close loved ones are not the most supportive.  I'm told that my odor makes them think they are at the beach, that I'm to pale, that I am overreacting because any damage I have now came from my childhood.  I'm told that I need to let my child be a child as I put sunscreen on them.  That I should relax because they have had pre-cancerous lesions removed too and they are fine.  I have been told to stop preaching.  I have been taunted with a "well, you cant come out in the sun, you have to stay under that tree". I've gotten eye rolls as I have been creative in my seeking slivers of shade.  I have also seen support from unlikely places, like the outdoorsy sun worshiper who tells me to keep sharing, that she may not have changed yet, but she hears me and so do others.  Or my former tanning friend who now has a pre-teen daughter and wants her to be confident in her own skin.  Or the molemate who was very private in her journey, but one wrong comment about her being pale and now she is getting loud.  You have people who stare at your scar, many will ask, some act like they understand, some ask questions.

In the online melanoma community, I really struggled with whether or not I was worthy to go to an event because I was "just in situ", but I was welcomed with open arms by those I met.  I have also met adversity in the online community too.  I was added to a group, welcomed by many.  I was friend requested and emailed by a few.  One heard my brief story and disappeared from my friend list.  Another responded to my brief story by asking why I thought I belonged in that group, they also are no longer on my friend list.  I hesitate to include that, but I wouldn't be as real if I didn't share both sides. More importantly though, I have seen and felt so much love and support among you.  Besides, we all are warriors supporting each other and working together to get the word out.

I don't know if there is any purpose to my sharing this.  It is something I have had on my heart for a couple of months now, and for the past two weeks every chance I have gotten to sit down I have had an overwhelming urge to share a perspective on life in situ.