Chapter 3: Pity and Shame

I wanted to explore the "Shame" of getting cancer a bit more.  The need to hide our disease. Cancer has so many faces, effects you in so many different ways.  Many bad, but some good. So I guess the shame stems from many things as well. Some bad, and some good.  I don't know if everyone gets to the place I am in, the place where you need to share despite misgivings.  Maybe it is because I am a writer at heart and I finally have a real story to tell. A story that might actually help others, for I am a healer at heart too. And if by my sharing, it can open people's minds to the thoughts and feelings of cancer sufferers, I would like to do that. If by sharing I can help other cancer patients feel a little less alone, and that their feelings are normal, I want to do that.

For me, some of the shame of sharing was simply not liking the attention or pity.  I was worried when I started writing to you guys, that some of you would think this was a cry for attention, to get sympathy.  That is the farthest thing from my mind.  I do,  not,  in,  any,  way,  shape,  or form,  want this to be a pity party!  So lets just get that straight right now! Got it? Good.

Sometimes I just don't want to be a Debbie Downer.  Who wants to talk about Cancer!?  It's sort of taboo.  You hide your scar, get a different bathing suit so you don't gross anyone else out by your appearance or, heaven for bid, someone asks how you got the scar!  Then if you reply that it was from cancer, you fear the reaction. Is it going to be pity? masked horror? silence? You hope it will give you the opportunity to just give others the heads up.  Something to put in their thinking cap. But there are a lot of Ostriches out there, who would rather keep their head in the sand than consider the possibility that life is fragile. You don't want to invade their comfy little ostrich hole.

Part of it is just not wanting to deal with it yourself. If I don't admit it, don't talk about it, maybe it isn't as real.  Maybe it will kinda go away. Some days, you just don't want to be a cancer patient. You just want to be normal.  But even that phrase, cancer patient, leads to another issue. I don't feel like a "real" cancer patient or a "survivor". It's the old, skin cancer isn't real cancer problem. Melanoma patients are put in a cancer class all on its own. I read a book written by a fellow sufferer, Michael Antcliffe. He did tile work and at one of his jobs, the lady of the house mentioned that she was a cancer survivor.  His boss commented that Michael was a cancer survivor too, from melanoma.  Her reply??  "Oh no, I had "real" cancer." Smack! Oooo, That hurt!!  He died less than a year ago.  Is that real enough for you lady?!

People don't think it's real because sometimes surgery is enough, sometimes you can cut it out and it never comes back. You don't need to have chemo if you catch it early. (Actually, for melanoma that metastasizes, chemo is very ineffective. Not a good thing in the scheme of things) Most of the "treatment" is just watch and wait. And so, since we sometimes "get off easy" in the treatment area, it feels wrong to put yourself in the same category as other cancer patients. Even call yourself a survivor.  But after hearing other people's stories, the constant uncertainty, the roller coaster ride of melanoma, I have more respect for being a cancer survivor. It can go from "A" ok, to fighting for your life, so fast. So I am trying to embrace the surreal terms, cancer patient, and survivor, embrace them as my own.  It's a battle in my head.

When I was starting this chapter I looked up the term pity.  And I found something interesting..... the first meaning for "pity" was "a regrettable or blameworthy act. "Shame" and "sin" was a synonym...... interesting.  I realize this is not the empathy shade of the word, but still a relation.  Somehow this world makes you feel like you should feel blamed somehow for the cancer, feel shame, so hide it, hide it away so no one sees your shame.  I have shed that skin. And it feels so nice.  I can breath just a little bit deeper.

Deep breath in, deep breath out, close your eyes and sigh some relief. A small smile tugs at the corners of my mouth. A moment of serenity. Moments I am thankful for. 

Click for Michael Antcliffe's site and book. 

(I'm not the only one that feels this way.  Here are a few fellow melanomates comments about this blog post:

- Thanks for sharing! Your writing is amazing and hits home. 

- Thank you so much for sharing. You are an inspiration to us all. When I was first diagnosed with melanoma, I didn't want anyone to know. But that all changed after trying to 'hide' it for two months. I no long keep quiet. It's up to all of us to spread the word about the dangers of tanning. Thank You.

And this is an article on how others don't feel the title of survivor fits at first. Featuring a fellow Stage 2 melanomate, Melissa: Article )

Nodular Melanoma - The kind I had second time round

Why are nodular melanomas not detected early?

• They look different to other melanomas. Their appearances are not well known in the community or EVEN among health care providers
• They grow more quickly. Nodular melanomas comprise only 10 to 15% of all melanomas but account for 60 to 70% of deep melanomas 
• Nodular melanomas grow more quickly in depth than other types of melanoma.  From the outset nodular melanomas are developing increasing life-threatening potential.
• It is likely that they vary in rate of growth but that some may take only 6 to 8 weeks! to develop significant life threatening potential
• The ABCD’s are of no help for Nodular Melanoma. Nodular melanomas have no appreciable flat phase.
• In contrast to the ABCD features, nodular melanomas are symmetrical, have a regular border, are generally one colour and should be detected when they are only a few millimeters in diameter. These features are not well known. 
• Any lump on the skin that is still growing after a month should be assessed medically. 
• One in five cases of nodular melanoma is ultimately fatal.

"Do the ABCDs, but also trust yourself, because in my experience patients are the first ones to notice something is wrong," Leffell said. "If patients are worried about a spot and the doctor doesn't want to biopsy it, find another doctor to biopsy it. The patient is the customer." Quote from Dr. Leffel at Yale

Info from presentation by VICTORIAN MELANOMA SERVICE and article from My Health News

All of these were fatal

Courtesy of Melanoma Education Foundation, all rights reserved

Picture from skincheck.org Please see their site for more info on nodular melanoma!

Click Here to see my Latest Post!

The Short Story.

I put it on a separate page so it would be easily found for new followers.  

When I look at other people's blogs I am always looking for the beginning, the short story and it takes awhile to find it! 

And I also wrote it because I didn't want to torture all of my friends, making them wait for the chapters to all come out!

Chapter 2 - Round 1

Six months after my Dad died in his car accident, my wonderful generous mom, took us to Disney World to find some fun after all the sadness. In the summer, my mom had seen a mole she "didn't like the look of" on my back.  So after waiting to get into the dermatologist a few months, I had a mole removed just before our holiday to the happiest place on earth!  No big deal, I have had many moles taken off over the years.  But this one kinda worried me just a teeny bit, because when I felt it, it had a texture.  No other moles had texture. 

 Well, since we were on holiday, Mike and my Mom got the fun task of removing my stitches. Thing is, the mole the Doctor took off, Wasn't the one my mom was worried about!!  So after our adventures with Mickey, (and it really is the happiest place on earth.) I went back to the dermatologist to finish the job.  He said he would take it, only for my Mom's sake, to appease her worry. He wasn't worried. And so I wasn't worried. He's the expert right?

 A few weeks later I go to get the stitches out.  After that's taken care of, the nurse says the Dr. will come in to see me. " hmmm, fishy.  That's not normal right? "  So he comes in all "Dr. God"-like and says, "The mole came back as a cancerous melanoma. But its nothing to worry about. It was very thin, and your chances of survival are 95%. We will make an appointment with a plastic surgeon and call you. "  Then he just left.   He JUST left!  Didn't say "Do you have any questions?" Just "no big deal" attitude and left! Wow, compassionate hey?  He just said two words that freaked me out, cancer and plastic surgeon and then left.  Was he feeling guilt about not wanting to take it off in the first place, or was he just a jerk?  Don't know, but thankfully he is no longer in practice!

 A week or so later I saw Dr. Slobodan Djurickovic for the first time of many times to come.  The name concerned me, too many syllables.  I can’t spell it let alone pronounce it. As if the strangeness of the name has anything to do with how they will look or act or what kind of Doctor he will be.  He looks like he is in his early 40's, that greying hair that just makes men distinguished, stylish glasses and a sincereness to his manner. Ok, may like this guy. Until he started to describe what he was going to do to my back......

 The phrases "shouldn't need a skin graft", is not something that you want to hear.  Then he starts drawing the size of the skin he will take off around the original scar left by the mole removal. This thing is gonna be like an inch and half wide by 3 inches long and go down into the skin too!  yikes.  Feeling a little light headed now, and Really not impressed with that first Doctor. "This is what you call no big deal is it? If its no big deal, why is all this skin being removed from off my body? jerk" I don't normally call people names, but I think this guy deserved one. 

 Within a month I find myself in the Jubilee, just in the minor surgery area thankfully, with a local anesthetic. Dr. D has a helper, a new student watching his work. Mike is there too. This should be fine.  The poking starts, those familiar giant bee stings.  A lot more than any I have had before though. Breath deep, all is well.  Chat, ignore the pain, then ignore the strange tugging and scraping sensations that follow, ignore, chat, smile, laugh at the conversation. Wow this is taking a looong time! Oh my, he's letting the newbie have a go at the stitches, this should be good. (not)  Finally all the stitches are done. I asked how many stitches. People ask, so I should know right!?  Around 30, he says. 30! That sounds a bit  frankensteinish! Oh, ok, many of the stitches are on the inside, that makes sense. Wait a minute, how deep was this thing anyway! More of big deal than I thought. Ok, made it! Done! Out of here. Thanks Dr. D! 

 A week after my surgery, we find ourselves at the district convention. Sitting for 3 days. With me trying not to rest my back on the seat. That was one of the hardest conventions ever. But not because of the seating. Usually conventions are a wonderful reunion of old and new friends, seeing people you only see once a year, drinking in all the spiritual food, laughing, sharing. This year I don't feel like sharing. I don't want people to ask how I am. Well let me get out my list of woes, Dad died, Gramma died 5 weeks later, Dad's place is a nightmare, oh yeah and I just had surgery for cancer, things are great!! How about you? ............. we ate lunch in the car everyday.

 I did tell a few people.  That didn't work out so well.  They hear "skin cancer", which turns to "just skin cancer" in their head. And so, like many other melanoma sufferers, I needed to defend my cancer, as "real cancer", not the fake kind. I realized how little people know. They really don't know how dangerous it can be. People Die from skin cancer, my Uncle Died from skin cancer you know.  But whatever, I will just stop talking about it then. I really don't want pity anyway.  I don't enjoy attention, and the last 9 months after Dad died, I got plenty of attention and pity, I don't want to burden anyone with my miserable life. So nevermind. I'm fine. I'm fine (Inside I am falling apart, but for you, to keep your lives happier, I am fine, I don't have the energy to defend my cancer anyway )

 Half a year passed and I finally felt able to share my cancer with others. Some of you may have gotten my Melanoma/ Sunscreen awareness email. The sense of "shame" of having cancer had passed and the need to advocate took over. All the things I had discovered about the kinds of ingredients to look for in a sunscreen needed to be shared.  I needed people to know how to keep themselves and their children safe.  The NEW dermatologist said, to take Vit D, to cover up rather than rely on sunscreen, to wear hats and drink green tea, not to be out in the sun between 10-3 April - October.  I felt safe.  My family history said I would probably get it sometime.  My "sometime" had come and gone, and all I had to do was be watchful, wear my hats and sunscreen and I would be fine. I beat this one.

 maybe.....

ME JUST BEFORE ROUND 1. I LOVE EYEORE!

FYI - Basic Staging

The very basic staging of melanoma. It gets much more complex than this, but for the onlooker this is enough.

Chapter 1 - The Prehistory of my Melanoma Life

As I write, excuse me for being detailed. When I read other peoples stories, and they leave out bits, it drives me batty!! So you will have to just bear the details for the benefit of those that share my need for the nitty gritty.

My story............so far.

I have known to watch out for the sun since I was 12, when my uncle was diagnosed with Melanoma, Stage 3. We were told it was hereditary.  My mom credits her brother with saving her life, since 2 years later she found out she had a melanoma, Stage 2. If it wasn't for her brother, she wouldn't have known to look. She was so scared, so upset. But as a kid, you just don't think your mom could die. There wasn't a question about it, a sure thing. Thankfully my innocent optimism was valid, and she is still here with me today. But now I know more, now I know she was one of the "luckier" ones. Since her first, she has had a total of 4 so far.

My mom's sister has also had melanoma. 5 Times! Plus she has had a related genetic disease called neurofibromatosis, better known as internal Elephant man disease. My uncle had this as well.  And I found out just recently that my Grandpa had melanoma, that's where his lung cancer came from. And my Grandpa's brother died of melanoma as well. WOW! Are we genetically programmed or what!! Starting with my Grandpa, that's one parent, his brother, 3 out of 6 of his children to get it (so far), and me, the only surviving child of those 3 children. Holy Genetic Jackpot!

My Uncle battled for 12 years before he lost.  I remember sitting there in the hospital with him, just hours before he died. His breath was labored.  "It" had made its way to his brain and lungs. He was a big burly man. But now he lay in this hospital bed, hardly able to move. I looked into his eyes, holding his hand, trying to give him all the comfort I could, attempting to share the peace within my own eyes. I hope he felt it. I hope I gave him somewhere good to be in those last hours.

Eventhough melanoma came so close in our lives, I didn't really fear it, respect it as much as I should have. I mean, I wore sunscreen, got checked by the Dr. once a year, stayed out of the sun for the most part and such, but I knew that if you caught it early you were ok!! 95% survival rate if you catch it on time. Just keep your eyes out and it will be fine. No worries right. Well, last year I found out that's not entirely true. That's a false sense of security.

You see, melanoma is a tricky sucker.  The melanoma research community is full of those that were stage 1, with good odds, 95%!! who are now stage 3 or 4.  Seems like most skip stage 2 altogether. Even my one Dr. said, he wouldn't tell me what my chances are.  He tells some people they will be fine, and then they're not. He tells others, "Go arrange your affairs", and they keep living. So there are no guarantees with this beast. It is unpredictable. The Doctors don't even really understand it yet. Now that puts a little fear in your head, uncertainty. Do not underestimate the power of uncertainty, it can really send you for a loop!  And now that I'm in the loop, I'm getting a little dizzy. Is this ride over yet?

Here ends Chapter 1, the prehistory, round one is up next!

Me at age 12, when I first heard the word, "melanoma".