HOPE

Chapter 8 - Hope

I Made a page just for Hope. My Hope. 

I know everyone has different hopes, but I wanted to share mine with you in case you might find some HOPE in it too!

missionmelanoma.blogspot.ca/p/hope.html

Chapter 7 - Broken But Blessed

The last 3 years have been hard on us. It started like a TV show,  in the middle of the night,  at precisely 2:59 AM. The door bell rings.  As you climb your way out of sleep, wondering if you really heard the doorbell, it rings again.  Who on earth could that be?  It Can’t be good.  I quickly pushed on Mike, who only groaned and rolled over, so I decided to brave it on my own. Looking through the peep hole I see two men in uniforms. It’s the police. Maybe it was a break-in?

"Is there someone else home with you?  You should go get them." 

Now I know this really "can’t be good!" As I go get Mike, thoughts run through my head.

 "Who do we know that the police would come to us for? My Mom? No, they would phone Mark, not me, ..... "

Then the officer begins to talk, "Is Wade Davis your father"

More thoughts race in my head "oh, no, Dad! Is he ok, sick, no police don’t come for that, hurt, was it...."  

My thoughts are interrupted by,  "I'm sorry to inform you, he was involved in a car accident, .... he didnt survive."

How the breathe just leaves you in that moment. "How? Where?" He tells us some of the details. Phrases like, flipped multiple times, thrown from the car, caught on fire..... Horrific..... I feel the need to sit. The kind policeman leaves. Nausea sets in. At this point there aren’t any tears, just shock. Until I think of waking the boys, and telling them their Grandpa has died. All the things he was bursting to teach them, he won’t get the chance to do that now. That’s when then the tears came.

The shock of a sudden death is numbing.  I couldn’t even think of what to put in my suitcase. What do people pack? Wandering aimlessly in the bedroom looking at drawers blankly. Then driving up island at 5:00 to go to the police station for his things. Vastly out of the norm. What followed was even more numbing. 

5 weeks later my Grandma died. It was at her memorial that I picked up my Dads ashes. Too close, far too close.

Besides the emotional fallout that has come from my Dad's death, which has been huge, his property was a nightmare to deal with. Nothing goes smoothly it seems. Let me get out my list, the list of lamentations..... He was partly renovating the house at the time so things needed to be done, there wasn't even a furnace, we needed a new roof on the garage, the hot water tank went within just a week of his death, we had hassles with the ex over RRSP's, a problem with the ownership of some of the property, even a threat to sue his estate! Not to mention the sheer mountains of stuff. And its not the kind of stuff you can just throw in the dumpster either.  My Dad was a mechanic and an antique collector. We didn't even know what some of it was. It took us 3 years just to get the bulk of it sold and straitened away. And don’t forget, we still had our own lives to live, our own business to run. I barely had a moment to grieve. And then, plopped down in the midst of it all, 6 months after my Dad was gone, ……… I got my first melanoma……….Then another……….. then another………then a recurrence scare.  This is where I am now. 3 1/2 years later.  Forever changed.

I was always an eternal optimist, with an idealistic view on life. I tried to see the good in everything, no matter how hard it was. I could find the rainbow in just about anyone or anything. But life in the past 3 years has altered that. It turned me into more of a realist, something I never dreamed I was capable of! I mourn the loss of my internal optimist. But it got broken. Every time I started to feel my optimism breaking forth from its cage, a new trouble would come and beat it into submission. So sadly, I just began assuming things wouldn’t go well, I’d kinda gotten used to it. If it can go wrong, it seems to go wrong round here. Just a grey cloud hanging over our lives. I began to accept the cloud’s presence. But in the strangest way, the acceptance of becoming a realist, also felt enlightening. Like a right of passage into adulthood.

All of these trials have taught me about survival, the ability to find joy, genuine inner joy, from giving of yourself, despite your own circumstances. It showed me who I am deep down inside. That who I have tried to be and thought I was all these years, is really there, not just in my head. For in adversity you show who you truly are. What your strengths, are. I found out, that in the face of any obstacle, I am never going to back down. I will not let that lion win. I will not turn inward, and become selfish. The harder he pushes the more I push back. And I have done so without losing my integrity. That isn’t to say I haven’t had my moments of shame, I have, but on the whole, I have maintained my integrity and been true to myself and my moral compass. That is an inner joy that can never be taken away from me.

I now know the true meaning of these words: “Nothing can separate us from God. Who will separate us from the love of the Christ? Will tribulation or distress or persecution or hunger or nakedness or danger or sword?...... For I am convinced that neither death nor life,  nor angels,  nor governments,  nor things now here, nor things to come, nor powers, nor height, nor depth, nor any other creation, will be able to separate us from God’s love….”  Rom 8:35,38,39

The story of Job doesn’t seem as farfetched now. I am feeling a bit Job-like. He suffered as a good man. I hope to at least aspire to do the same. Even if I lose my life, I am not really losing it, as long as I keep my integrity as he did. This system will never break my desire to help others, and be there for my friends. It will never stop me from sharing my knowledge and spiritual understanding with others. By giving, I have found solace. In my darkest days I have found peace in teaching others the beauty and hope for the future. Things will not always be this way. There will come a day when no resident will say I am sick. My studies were truly a gift from God that helped me survive. I thank him for them often. They have helped me become stronger spiritually than I have ever been before. And I can thank adversity for giving me that. I have been broken, but I am blessed. And so I guess I am still an optimist, just a different kind than I used to be. 

My Fight Back Speech at Relay for Life - Westshore - 2013

Last week, I found a painful lump under the skin at the site of my second melanoma. My dermatologist had me in to remove it within a day and half! Whenever a Doctor wants to do things that quickly, it makes you nervous.  I‘m now waiting for the results to see if the melanoma has recurred.  If it has, that’s bad news. It means the chance that it has spread, or will spread further internally,  is much higher.  So, My battle continues. 

Update:

It was clear!  Yay!!  Since then, I have had to have 2 more lumps removed out of caution. It seems my body doesn't like the internal stitches. Even after 7 yrs, it still created a granuloma around a previous stitch. Another day, another scar.  The fun just never ends hey?

Chapter 6 - Who's to Blame for this!?

The Blame Game. From the beginning, we have been blaming others.  When Adam got caught eating fruit from that tree, his response to God was, “The woman you gave me, she gave me fruit from the tree and so I ate”  How quickly he turned to blaming Eve.  Even blaming God himself,  for giving him the woman! We always seem to point a finger. To blame someone or something outside of ourselves. 

So who can I blame?  Who’s to blame for my getting melanoma? The Sun?  The Ozone layer? Genetics and My Pale Skin? The processed foods?  Maybe a malevolent spirit creature out to get me? I know, it was the Doctors! So many people and things to blame!

The sun is an easy target for blame. The Sun and Melanoma go hand in hand, and rightfully so. When I think of the sun and my youth, there is one picture in particular, that comes to mind.  It’s one where you see my sunkissed cheeks, ruddy from a full summer of romping outside in the wide open skies of Alberta. As a kid, I wasn’t one to burn.  Both my hair and skin simply turned a beautiful shade of golden brown. Looking through the photo albums, every winter you would see pale Pam, and every summer, a shade of mocha Pam. But as I got older, and learned of melanoma at age 12, I stopped going in the sun quite so freely. I didn’t avoid it completely, but I didn’t seek it, or tan in particular. Thankfully I was never one to be very vain. But now, after my years of using the “no sunning” policy, I turn pink before I brown.  I guess my “immunity “ to the sun’s rays is gone. Or maybe its just all those CFC’s we put into the air! Was it the sun’s fault, those years as a kid doing what kids do? Before mom’s had even heard the word “sunscreen”? For many, the sun is to blame.  But not for me.  My melanoma’s have shown up in places that didn’t see much sun. And one of those spots, has never felt the suns warmth! So I can’t blame the sun.  I respect the sun. I am grateful that I wasn’t a sun worshiper. But, it isn’t to blame. Genetics must be the culprit.

"Winter Pale Pam" Versus

the first day of school in "Summer Brown"

Genetics fascinated me from the very first time I learned about them in Grade 10 Science class.  That was the year I fell in love with biology.  The way two people’s “gifts”, pieces of themselves, combine to become the crapshoot of who you are. The shape of your nose, the color of your eyes and whether your second toe is longer than the rest.  I especially enjoyed the play of statistics and the exceptions that invariably occurred.  The fact that so many red haired and blue eyed people exist is intriguing, when the genetic odds are against them.  My Mom’s family was an example of this statistical anomaly. Her mom had auburn hair, her Dad had dark.   You would think out of 6 kids, the chances of a red head would come out as the underdog, but  only one of those kids came out dark!  Now we all know that red haired people have a genetic predisposition to getting melanoma more easily. But genetics are sneaky.  Cuz it was the dark haired Dad, and his dark haired son, that got melanoma first!  Followed by only 2 out of the 5 red headed siblings. One of which is my Mom.  And my hair is brown, even darker than my Dad’s. So that’s 3 for brown and 2 for red.  The red hair be darned, there are no sure things in the world of melanoma. You can’t blame it on the hair.

Ok, So if its not the hair, it must be my pale skin.  My Mom has pale skin and freckles.   The kind of freckles that are sprinkled lightly all over,  giving the impression that she has a darker skin tone than she actually does.  My skin is different from hers though. I don’t have any freckles at all! Instead I am blessed with many moles.  My Mom was spared this blessing. Me, well, I have many strange and various colored mis-shaped brown spots. The kind of which, on anyone else, would have the derm reaching for his scalpel.  But for me, they are “normal”.  So where did I get my mole issue? Maybe from my Dad?? My Dad was pale too! Although I never saw him burn.  He was one of those men that had a permanent ”farmers tan” from working on cars, pumping gas and building things in the yard.  One summer he put on shorts. The whiteness of his legs was  truly brilliant, the sun reflecting off the pristine whiteness of skin that hadn’t seen the light of day in over 10 years.  But I don’t recall seeing even one mole or blemish on his skin, other than the ruggedness of his face and hands from years of hard work.  So it isn’t just the skin color, its deeper, it’s in the cells, the basic structure of how well they grow, divide and rejuvenate.  There is where the flaw is. It isn’t in a gene you can see. It’s in a hidden gene.  One that I know my dear mom, wishes she hadn’t unknowingly shared. One that I hope I didn’t share with my own boys.

But I need to do more than just “hope”. I am trying to hedge their bets. I have heard that twins, who share exactly the same genetic makeup, will not necessarily get the same cancer, even if they are genetically predisposed to it. That is where the environmental factor comes into play. Less sun, more sunscreen, less stress, more Vit D. Then there’s food. I have always felt we ate fairly healthy.  Choosing whole grains, and 100% juices.  But after your world is shaken by something that threatens your very existence, you start to look at things a little differently. Instead of a treat, a donut becomes a sugar laced poisonous ring of cake.   The plastic popcorn maker, is now a machine that is leaching chemicals into each kernel. You start reading labels, inspecting your shampoo for carcinogens. And the more labels you read the more you see how terrible the choices really are. Stuck between a rock and hard place. Suddenly the organic market doesn’t seem so expensive. If you are what you eat, then I guess I too am broken down and devoid of nutrition. In this fast paced world, where easy meals are almost a must, it makes it very hard to eat the whole foods the nutritionists say we should be eating. It feels like the world is against me, trying to poison me slowly with its faulty foods and chemical laden plastics. Maybe the whole cosmic system is to blame!

So what about the cosmic plan? The power beyond? Have you ever felt like someone was just out to get you?  Someone you don’t know? Some call it Murphy’s Law, fate, or luck, or even cursed. That your number is just “up”. But sometimes it just feels personal.  And it has felt personal lately, so relentless. Maybe that is where part of the blame lies?  I have a name for “It”. “It”s name is Satan. Now regardless of whether you believe Satan is real or not, for all people, that name symbolizes the incomprehensible bad that we see on this earth, the pain, the injustice, the ugliness. The Pandora’s Box of  pestilence in the world.  And in the past 3 and half years, I have felt like I am in Satan’s crosshairs. That I must be doing something to draw his attention my way.  Beating me down at every turn. But I won’t let him win. This world will not break me or my spirit. My health and my own problems, won’t ever stop me from helping others. Only death will stop me. Having an enemy to battle, an enemy with a name, gives me somewhere to focus the bad that has come my way. And it doesn’t matter whether he is truly to blame or not, because it gives me a place to put the anger, and the negative feelings.  A place to put some blame.  I can put them there in my “Satan box”. Then, Unburdened, I have the emotional freedom to  go on living my life, without anger or resentment, to be the healer, the helper, and now the advocate. No matter what! I will not give in to my enemy. A vastly lesser god.

And what about those other “god”s? You know the ones, the ones with white coats and stethoscopes.  Yes, Doctor’s!  They should certainly take some blame. There’s an easy scapegoat.  The ones with all the supposed knowledge. With education sprouting out of their heads like giant headdresses. How did my Doctor not see it in all his great wisdom and experience?  I remember during the waiting period, waiting to see if it had spread to my lymphs, I said to some of my friends, “If it is in my lymph glands, I’m going to be angry. Because if it was up to me, instead of the Doctor, I would have had that mole removed a long time ago!“  Now there are a few flaws in this statement. First of all, this is before I had done such exhaustive research on melanoma. When I thought that a clear lymph test was a sure ticket to being “OK”. Before I realized that lymph or no lymph, it could still rear its ugly head at any time and take hold, growing from a tumor  the size of golf ball to a baseball within weeks.  So either way I am angry it got to stage 2! Second of all, Why on earth did I allow another human being, even a Doctor, control what I did with my own body?! Yes he should have been more cautious, and aware. Yes I could have been given more information.  I shouldn’t have to get information from the internet instead of my Doctors.  But I learned the hard way, that when it comes to health, there is no room for politeness, for being shy or giving way to fear, worrying that you will hurt his feelings if you question his opinion. This is Your Life!  I should have just done it  when I was worried, 6 months earlier.  That is why I write my story. So some of you won’t make the same mistakes I made. I want you to be educated, I want you to know what to look for, and to have the courage and knowledge to advocate for your own body. I want you to have that “thingy” removed, no matter who’s pride it may harm! Know your body, own your body, take charge of your own health, so you have nothing and no one to blame. 

Melanoma - BEYOND the ABCD's

On Melanoma Monday, Me and my Mom did a presentation on Sun Safety to Outdoor Park Workers in Langford. I have posted two pictures from my presentation on my Melanoma Facts Page.

Here they are!

New Videos!

I have some new videos on the video page.  VERY good!  Please watch these.
:)

Click here for Video Page!

Chapter 5 - Round 2

After you have had melanoma you get put into the wait and watch mode of health care.  Depending on how "bad" your melanoma was, it can either be every 6 months or every 3 months.  I was in the 6 month category. The routine is as follows:  Go into the little room, take everything but your undergarments off and put on your fashionable blue hospital smock, with full ventilation out the back end.  My derm keeps the room at a very warm temperature, which is a thoughtful touch. He's a little bespectacled man from Ireland, with striped shirts and bowties. His appearance made me like him instantly, even though his manner is abrupt and he doesn't talk anymore than he has to. I felt confident in his opinion.

He did a more thorough check of my skin than any other derm I have had before.  He inspected my spots with his magnifying glass and special light. Wrote on a little human shaped diagram the location and size of some of my more dysplastic moles.  I have a lot of them! He ran his hand along the scar on my back, looking for lumps under the skin.  It can return, hidden in the scar tissue, he told me. Every visit he queries whether I am wearing my wide brimmed hats and sunscreen. Are you taking Vitamin D?  Is there any moles you are concerned about?

Yes, there is, there is one.  I had noticed a new mole on my arm.  It was med sized, round, light brown and raised.  It didn't look very harmful, but I thought I should point it out, since that is what I am supposed to do.  I felt kinda silly showing him such a benign looking little thing, but I did.  The derm's quick dismissal confirmed my feeling of foolishness.  In my head I knew that raised moles were nothing to worry about. His confident rejection confirmed my thoughts. 

6 months later, it had grown some more, started gaining a few new colors.  So at my next melanoma screening I pointed it out yet again.  He took a look with his special light and magnifier, measured it with his handy dandy circle measuring thingy and declared that it hadn't grown and was still only 5 mm wide.  "Oh it has definitely grown!" I said.  It just hasn't grown side to side is all. Again, his firm rejection comforted me.  As I left, I asked, "if I wanted it off anyway, what would I do?"  "Ask your family Doctor to do it, just make sure it gets biopsied."  Ok.  I was just disliking this little growth on my arm.  Not the prettiest thing you ever saw. I might just do that!

I thought about getting it off. But you know how life gets away from you.  And six months goes by entirely faster than you think it will.  The little brown bump has now grown to a size that my husband has started calling it my third nipple.  ( hope that doesn't offend anyone!)  I was determined that this time, whether the derm said so or not, I was getting this hideous growth off my body.  But his interest in my growing lump had grown as well.  He spent quite a long time looking at it with his magnifier and light. Mumbling about not liking the color of parts of it.  He got the other Doctor to take a look as well. 

Finally! It has been declared for removal!!! I have never been so joyful walking into a doctors office to get a piece of my skin removed.  Not a bit of anxiety this time.  I was chatty and happy.  There were two student Doctors there to watch.  The derm explained to them facts about melanoma and how much further ahead they are in Australia. As I listened to him, I was actually enjoying myself, and feeling even more assured of the vast knowledge my derm had in the area of melanoma.  I smiled as I walked out the door, with 5 stitches in my arm.  I almost glowed. 

After that I didn't really give it much thought.  Until a couple of weeks later.  That's when I got a call from the derm himself.  It is amazing how many thoughts can cross thru your brain in a short 1 minute conversation.  First of all, you instinctively know it isn't good news when the derm himself is on the phone, instead of the secretary.  So you know its cancer.  But quickly followed by that realization, comes the sureness that we must have caught it early.  Especially since I have been under the close care of an excellent derm. I remember being quite proud of myself for even thinking to ask what stage it was.  Was it "in situ", or maybe stage 1?  But then he said something I wasn't prepared for.  He said, "we won't know till we've tested your lymph glands."  Woah!  The word "lymph" echoed around inside my head.  I don't quite remember how the conversation ended. My mind went a little foggy after that.

After my first diagnosis with melanoma I had done a quick internet scan, to see what was out there.  I did run across the whole radioactive dye lymph thing somewhere, but I brushed that off as something that happens to other people.  People who didn't know about melanoma, and what to look for.  Because surely I would catch any melanoma loooooonnnng before it got that far. Especially since I was seeing a good derm every 6 months!!!!! But my faith in my knowledge was seriously flawed.  I had never heard of nodular melanoma.  The kind that grew fast, down, and was often round and raised. My research didn't take me that far. There was a gap. A gap that I fell into. A gap that apparently even my derm fell into.

The next two months were dreadful.  It was in those 2 months that I lost 3 friends to cancer. It was in those 2 months that I got to play the waiting game.  Mike described it as the feeling you have just as you are about to crest the top of that first hill on a roller coaster,  you hold your breath, just as it crests...........accept that you are just stuck there, ...................waiting............... and waiting.............. waiting to know if this ride is going to get worse or better from here on in. It's a ride that too many of my melanomates are familiar with.

Back to visit my friendly neighborhood plastic surgeon, Dr. D.  If I thought his words scared me last time, this time they made me nauseous. There was a longer conversation about the possibility of needing a skin graft. Then there was the discussion about my odds.  This is where I got the most honesty from a Doctor.  He didn't try to placate me with a statistic.  He said he could tell me I have an 80% chance of surviving 5 years. But that isn't always true.  Sometimes he tells people they will be fine and they aren't.  Sometimes he tells them to arrange their affairs, but they continue to live.  There are no guarantees with this beast. It is unpredictable.  He told me that the Doctors still don't understand melanoma very well.

Thank you for your honesty Dr. D, for telling me like it is, instead of saying it will all be ok.  Thank you for making me realize the uncertainty that I face, so that I Can face it. Instead of maybe being walloped with it later and being less prepared. Thank you for letting me be proactive, to change things I can, and do it now, so that if things go the wrong way round, I will go down knowing I did my best from here on in. The alarm bell has sounded.

The last day of school I had my surgery. As the kids had fun day and games, I wallowed in anxiety.  Thankfully my surgery was later in the day, I'm not good at mornings. Still, I arrived at 9:30 to get all the testing done before the surgery.   The volunteer lady explained all the places I should visit and the best order to visit them in.  A chest xray, a blood sample, a visit to the nuclear radiology department. NUCLEAR radiology?  Yep.  This is where they inject radioactive dye into your arm around the site where the mole used to be, and then watch to see where it goes.  Thing is, I thought they did this while you were under, not fully awake!  I think every doctor I saw figured the other doctor had explained this or that, when in fact no one really explained much of anything.

Nuclear radiology, doesn't sound like the most popular place. It sounds downright daunting. But I went in with hopes that this would be quick and easy. Otherwise the Doctors would have warned me right?  The nurse put a patch on my arm to numb the area where they would inject the purple colored radioactive dye. Then its into the room with the big scarey machine. They have a warm, I mean, a really cold metal table for you to lay on.  And its a lumpy narrow table at that.  I think when they designed it, they must have forgotten there was going to be a human inside. Then the nice Doctor says he is going to inject the dye. It will hurt.  Ok, brace for it..... Yowzas!! Hurt is a bit of an understatement. I just about jerked off the table. I don't think the little patch thing worked so good nurse lady. Ok , step 1 done, on to step 2. 

The machine tech lady moves the "comfy" table closer to the machine.  I look up at the large square above me.  This should be ok.  Then she says it will take about an hour for the machine to track the dye as it works its way to my lymph glands. Ok, still ok.  But then, she tells me she is going to move the machine down closer.  As it moves closer and closer and closer, the words "an hour" becomes extremely long in my head, I start to panic.  If the tech lady saw the flash of terror in my eyes, she chose to ignore it. What to do, how do you not panic for an hour stuck in a metal machine?  Music!! Sing a song in my head!  La la la la la. Yeah, that's not gonna work, I can't think of the lyrics of songs when I'm Not sandwiched in a radioactive tracking metal contraption.  What else, what else, before I totally lose it.... come on..... think.....think.....got it!  My dream house.  I can feel the anxiety start to lift just thinking those words. I can continue my dream plan.

I took structural drafting in college and in my mind I have been building my dream house for years, my Paradise home.  Now where did I leave off, ..... aw, yes, the stairs.  If I put in one of those hidden "servant" staircases that makes a shortcut stairway to the kitchen, then the stairs would have to be on the other side of the hallway, hmmm....... I take a peek at the machine as she lowers it even closer.  Holy Frog King! its like an inch and a half from my face!!!! ........ stairs, stairs, ok stairs, if the stairs were on the other side then the playroom off the kitchen would be slightly different, and how would I get the window seat in the stair landing?.............and this is how I made it through the hour in my metal coffin ride.  

All in all the surgery went well. The Doctors were both nice and comforting.  It took the anaesthesia guy three attempts at the IV though.  I guess I have wiggly veins that collapse. Hurray for me! And after taking a second look and pinching my arm skin, Dr. D declared that he shouldn't have to do a skin graft.  Its the only time I was glad I didn't have skinny arms. He drew strange crooked lines on my arm with a purple marker.  Not sure how that's gonna pan out, but your the plastic surgeon! And I've seen the amazing results of what they can do on peoples faces. I do trust both these guys. The lymph surgeon and the plastic surgeon are both young enough, hip enough, and competitive enough, to want to do their best. About 5 hours later, pale, weak and slightly nauseous they sent me to the car in a wheel chair. Done Step 3. Now for the waiting.

It takes about 3 weeks for the lymph test to come back. That's practically a month with your life in the balance. If its positive in more than 3 nodes, I am stage 3. That means more surgery, chemo, and my odds of survival wavering. If its negative, I am stage 2, 80% survival in 5 years. So the outcome is important. And waiting is hard.  You try to pretend its not bothering you, not consuming you, carrying on the best you can, (with one arm,) doing everyday things.  But life is just not everyday. And the scar that was left behind is quite knee weakening at first sight.

Me and Mike made the mistake of changing the bandage for the first time, just before a meeting. The look on Mike's face was enough to know it wasn't good.  He turned a shade of green. When I looked in the mirror, my first thought was, "THIS is plastic surgery?!" It looked like a butcher had been at it. And the shape was so odd, like Zorro had left his mark on me.  I couldn't believe how terrible it looked. But I sucked it up.  We redressed it and went to the meeting anyway. Where else would I want to be? At home isolating myself, left alone with my thoughts?  No. Distraction is just what I needed.  To be with those that care about me.

Again, in sadness, I found beauty.  The beauty of an understanding look and a squeeze of the hand. Shared tears without words.  Such comfort. One sister came up, a sister I knew was having troubles of her own.  I told her about the "mistake" of looking at my arm. She just took my hand and said "Its gonna be ok, its gonna be ok" and cried next to me for a moment. Then she left.  But in that moment it gave me release from that feeling, allowed me to carry on, and go forward.  Beauty in sadness. Its always there when you put yourself in the right place.

Three weeks finally came.  The moment of truth.  In a few moments from now are we going to be sighing a huge relief or holding our breathe yet again?  The nurse must have been used to these kinds of situations.  She poked her head in the room, while we waited for the doctor and said.  "It was all clear!  The lymph nodes were clear!"  How lightening those words were.  Such weight gone. I don't know what the weather was like outside, but it felt like a clear summer day in that office with no windows.  I could hear birds singing in my head.  Such relief. Round 2 is over. Finally over. 

Sorry! but I have to post this. 

This is melanoma, 

this is what it does. 


Is it "just" skin cancer?

This was about a week after surgery.


It actually looks a lot better here than the first time we saw it. 

And I need to give credit to my plastic surgeon. What to the layman looks awful, to the trained eye was amazing work. I have had many Doctors and medical professionals say what a great job he did. And he himself was pleased with the results. When I eventually found out what he physically did to cover the area removed, it really is creative. It's called a " flap rotation procedure" if you have any interest in looking it up. And I am grateful for the work he did on my arm, and my other many surgeries with him. 

Chapter 4: Is Cancer Contagious?

For awhile there, I think people were beginning to think our Hall was contaminated somehow.  Is Cancer contagious?  Was it in the water, the seats, or heaven for bid, airborne!  It sure seemed like it round here!

Not long after my first small round with cancer, we got the news that a good friend was diagnosed with colon cancer that spread to his liver.  It didn't sound good.  They didn't widely advertise the extent of his cancer, but it didn't sound especially promising.  Richard has a family with 2 kids. It's always harder when there are kids involved, the loss would be so much deeper if it went the wrong way round.  But through it all, their family was a stellar example, always helping others, rarely missing a meeting. It just shows that sometimes, just by your presence, by carrying on, you can encourage others. I applaud them wholeheartedly.

Next came dear Johnny.  When we first moved here and we met Johnny, I said to Mike, "It is going to be a sad sad day when that man goes." He had already won my heart. Shy and gentle, so kind, he always took the time to say hello and ask, in all sincerity, "how are you?"  He didn't say much, but what he did say, was genuine. Asbestos was his enemy.

I guess since it looked like so much fun, we got a whole crop of joiners. Within 3 months of Johnny's diagnosis, we added 3 more to the growing ranks. Jim was the next inductee.  Jolly, smiling, greeter Jim. I was constantly amazed at how a man with such big hands could create such beautiful fine woodwork. He swapped painting for doing our cupboards. Almost exactly one year ago, he told me how he was going to the doctor to see about a pain. He figured it was his gallbladder. Or at least that's what he was telling people anyway.

Now for Lorraine. I sigh deeply as I write her name, a mist in my eyes and a lump in my throat. What a truly sweet and caring woman.  She was a Gramma to everyone. With what little she had, she was always trying to share it with you.  Full of life, humble as can be. She was family to us. Family by choice. For a year she was trying to figure out why she felt sick all the time. Finally she found out, lung cancer. "But only stage 1!" she said with optimism.  She was more worried about me. Cuz you know, I couldn't stay out of this club.

The empathetic person that I am, I couldn't have all these people feeling alone. Besides, round One didn't make me feel like a full member of the cancer club anyway. Had to make it more official. Between Jim and Lorraine, was when I got my phone call.  You know the one.....the one that makes your world stop for a moment. The one where melanoma and lymph gland were mentioned in the same sentence. The day I stopped feeling safe.

I got my diagnosis one week before Jim passed away. He didn't even know what kind of cancer he had before it took him!  Too fast, entirely too fast.  But I am glad he didn't suffer long. He was in so much pain. His memorial was surreal and strange. With my own life in limbo, I have never been to a memorial with the perspective I came to this one with.  As I sat there listening to the talk, I seriously considered what my own might be like. What song would they sing,? Who would come? What pictures would they show? What stories would they tell? Would I have enough time to plan some of it myself?  What a strange thing indeed.

But within the sorrow, I also felt needed. I was close to so many of his family members, I felt like I was able to comfort them in a real and significant way.  When a friend feels comfortable enough to cry in your arms, to share pain and anger, you know you did your job as a friend, that your place here on earth is a worthy one.

A few weeks later it was Johnny's turn. His daughter said the sun set beneath the horizon just as he died.  A fitting symbol for a sailor to make his way out of this world.  We got to visit him in the hospital a week before.  Much smaller of a man than he was, and there wasn't a whole lot of him to begin with.  I could tell he found joy in our visit. As we left, I told him we would come again, but I knew this would probably be our last. He was going to a better time and place now, a time where he will be young again. I look forward to meeting you again Johnny, when you are young once more.

The week of Johnny's memorial is one that will stick in my head forever. What a horrowing week. I didn't even get to Go to his memorial. I was laid out on a table having my lymph glands removed and my arm being cut and patched.  The same day, our dear Lorraine was in the same hospital for her lung surgery.  And Richard was due to have his very risky liver surgery 2 days later. One stop shopping. Sunday morning we got a call............... Lorraine had died suddenly the night before....... Smack!! You have got to be kidding me!! She was just about to go home! It seems a blood embolism made it to her lung. So unfair. It felt like robbery.

I am constantly amazed at how in misery there is always light. That Sunday meeting was the most devastating and comforting I have ever been to. Our congregation was being beaten, and beaten hard. So much loss in such a short period of time. And yet we were all here. We didn't stay home.  We were where we belonged, with each other, our extended spiritual family.  The talk, the study that week, the timing was perfect. As brothers and sisters made comments, their voices were choked with emotion, but we were together. Together. We weren't letting anything drive us apart. If anything, it was driving us closer together.

Another memorial to go to. Another life to remember.  More family and friends to comfort.  Too much, yet we carried on, gave Lorraine the consideration she deserved. It was in the midst of all this that I got to play the waiting game.  Waiting to see if the cancer had spread to my lymph glands. I'm not sure we could really take anymore bad news. We were saturated. Those 3 weeks were so verrrrrrrry long. No more, please no more...........Thankfully we had a bit of a drought in the bad news department.

I hope my words won't sadden you too much. But I felt is was necessary to set the scene, to know the climate in which we were in.  These people, these events, are all tied up in my own experiences. It is hard to extract one from the other.  It was needed. And they deserve to be remembered.  I refuse to allow them to be eclipsed by my own struggles. They are part of it. By being there for others, you are able to deal with your own trials. It only proved to me how dear our congregations are.  It demonstrated how, we will beyond a doubt, carry each other through.

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".