Melanoma Is Not Just Skin Cancer

I'm writing this just so you know.  For the next person you come across with melanoma.

I used to be you.  When I heard that someone had skin cancer, my first and only thought was, "Psh.  No big deal.  Cut it off.  It's gone.  You're done."

About 95% of the people who find out I have now had melanoma and who know that I had a procedure to remove it,  have said to me, "Well, I'm glad that's over."

What they don't realize is that it is not over.  At all.

It happens so quickly.  You see something that strikes you as odd.  That's it, maybe.  (I actually thought mine was the beginning of a pimple.  It did NOT look like the normal melanoma pictures you see.)  You wait.  You finally go get it checked.  The spot is biopsied.

But then, a week later you learn it is malignant melanoma and you start to talk about it and people say, "Oh, it's skin cancer.  My ..... had skin cancer, but now they're fine."

But did they have melanoma?  The kind of cancer that grows and spreads through your body like wildfire if given the chance and is fatal when not caught in time?  Not basal cell, not squamous cell.  Melanoma.  It is different.  It is crazy deadly.  Quick fact:

• The vast majority of skin cancers are basal cell carcinomas and squamous cell carcinomas. While malignant, these are unlikely to spread to other parts of the body. They may be locally disfiguring if not treated early.  A small but significant number of skin cancers are malignant melanomas. Malignant melanoma is a highly aggressive cancer that tends to spread to other parts of the body. These cancers may be fatal if not treated early. *

For me, this skin cancer resulted in 2 biopsies, a wide excision procedure with a 3 inch scar to prove it, 2 full body dermatological exams and a scheduled visit to the oncologist for consultation.  And that was just in the first 30 days. 

When I went to the surgeon yesterday I learned that my 5-10 year survival rate is 90-95% for "this melanoma site".  I asked her why she had to chop more of my arm off given that the last margins were clear.  She informed me they do this procedure in case any of the cells from the invasive, Stage 1 melanoma broke off and traveled to any of the lymphatics.  There is a 5-10% chance that they have done that and will metastasize to somewhere else in my body.  And you're right, those aren't really high odds. 

In my head, though, that was only for this one area.  My chance of developing a second melanoma (or second primary site, as they call it) is high.  I have all the indicators - about a million freckles, several of them bigger than 1/4" in diameter - and 8 of which they are watching after my last exam (3 on my face), absolutely more than 5 sun burns and probably 40 trips to the tanning bed before I was 18.  (Tanning alone increases your risk by 75%!)  Oh yeah, and that first melanoma site increases my odds some more.

So, for the next 5 years, I will be seen every 3 months by a dermatologist who will look over every inch of my body to see if there are new spots, to see if any of the regular ones have changed.

From now on, I will need to keep an eye out to see if any new spots are developing or changing.

I will be sporting a 3 inch long scar on my left arm from a 4mm spot.

And I will wait.

I feel like a ticking time bomb.  I have no idea if something more is somewhere that I have missed.  (The doctor missed the first one.)  I have no idea if I do miss something, how fast it will grow or when it will be found and if it will be taken care of in time.  You see, with melanoma, you are never officially in regression.  You are considered "no evidence of disease."  Not exactly final.

Hearing your 10 year old say, "Mom, since you got cancer......." does not feel good.  And peering into your own arm, looking at your own real live muscle (right there!), is a huge reality check.  This is not just skin cancer.  Treatment hurts.  It is scary.

All of this is not to communicate that I am without hope.  I have hope no matter the direction this journey takes me.  And my odds of this melanoma recurring are low.  And I am grateful.  It could have been so much worse.

This is to say that melanoma is real cancer.  Please, if you know someone who has melanoma, no matter the stage, call them when they have procedures, text them, send them a note, ask when their next appointment is, maybe even write it down to remember to check on them.  I'm not saying to remember everything.  Just remember something.  Very few people will treat it as significant.  After my surgery yesterday I had 1 person check on me.  And I felt very alone.

Treat melanoma like it is real.  Simply because it is.  The support you'll provide will be immeasurable.

The Gift of Melanoma

2 weeks ago I was diagnosed with melanoma.  I had noticed a spot on my arm, the size of a pencil eraser that was raised with an uneven border and a bit of a reddish coloring to it.  For 2 months I did nothing.  I eventually scheduled an appointment with my dermatologist and he did his exam, not seeing anything remarkable.  Thankfully, he checked the spot I was concerned about and biopsied it.  A week later, he called to tell me I had melanoma, and that was all the information he gave me, other than to say he was sending it on for a second opinion and would call me in another week to tell me more.

The only experience I really had of melanoma, per say, was a dear friend who was diagnosed with melanoma and died 3 weeks later.  Melanoma is such a fast moving, sneaky cancer, that if left untreated can be fatal quickly.

I shook and cried as I called Husband to tell him.  He cried with me.  It was like life stopped moving for us.  And it kept on moving for everyone else.  I was school shopping with Little Miss at the time and I had to continue shopping, wondering if it was the last time I'd be able to do that with her.  That was a terrible feeling.

The times I struggled the most, as the days ticked by, were when I thought about missing my children.  All 4 of our children are under the age of 11.  So much of life is still in front of them.  So many formative years.  I didn't want to miss them for my sake.  I didn't want them to miss me, for their sakes.  I don't think I'm an awesome mom or anything, but I believe it is ingrained in every child to want a mom to love them because a mom loves like no one else can.

Somehow, at the same time, I felt so ready.  I imagined a life void of depression, anxiety and mysophonia.  Void of worrying about the next shoe to drop.  Void of the pain that comes with our fallen world.  Thinking of that - the relief from those things - gave me so much comfort.  Knowing that I was going to get to the end of the race, holding the hand of Christ, and knowing my children were safe and cared for, provided such a feeling of peace and joy that I was surprised by it.

Later that week, the doctor called to say that it was melanoma in situ, meaning that it was contained and superficial.  I felt like I had worried for nothing, but I was still worried, for some reason.  He told me I would need to see the surgeon for an excision so it didn't become invasive.  On Monday I went to the surgeon who said that the dermatologist had been wrong.  It was indeed invasive and would need to be biopsied again to see what stage it actually was at.

4 more days we waited, until today, when she called to say that the margins were clear.  The melanoma was gone.  And that I would just need to have a wider excision, just to be on the safe side.  That is yet to be scheduled.

I cried when I got off the phone with her.   A wave of emotions have been hitting me over the course of the day.  Strangely enough, the biggest emotion I primarily felt was disappointment.  Disappointment that the thoughts that had brought me peace were not going to become reality. 

Everyone laughs at me and points at my pessimism when I say that I have always expected to die young.  Since I was a little girl, I have had that in my head.  Unfortunately, baking myself in the sun was something I didn't really think would have an impact on that thought when I was a teenager.  I went to tanning beds at least 40 times and got burnt on a regular basis, even to the point of sun poisoning once.

So when I learned I had melanoma, I didn't blame it on God, despite the fact that that is my usual, knee-jerk response.  My overall thought was, "Okay, God.  Let's do this."  I knew He would walk beside me and I knew He didn't cause it.

Over the course of the last several years I have learned that I can't really cling to anything here because everything that I can see and touch is temporary.  Everything is broken and in it's own pain and sometimes I am just on my own with God.  The prospect of dying highlighted that reality even more these last couple of weeks.  No one else can feel the feelings I feel, think the things I think or really understand what I'm experiencing because they just aren't me.  And because of that, I have to rely on Him.

I don't understand what will happen next, what He desires of me, except to wake up each morning and ask Him.  I am so grateful to know, in a new and different way, that comfort and peace do come from Him and the comfort of eternity gives joy. 

I don't want to have cancer.  This was caught at stage 1.  It could come back.  It could arrive somewhere else.  My risk was high anyway - now it is higher.  So, we may face this again, but now I know that the hope of eternity will be with it.