Positive for the CDKN2A Gene

Update!

I got the test results back from my Genetic Testing.  It is confirmed that I have the CDKN2A gene. That means my Melanoma is totally Genetic.  Which I pretty much knew already, but now it is confirmed as to which gene.  There still are probably other genetic factors at play, but this is one that researchers are aware of.

Problem is,  this gene comes with the possibility of an increased risk for Pancreatic cancer.
So now I have to decide whether I want regular screening for pancreatic cancer and if we should get the kids tested or not. 

For the kids, the Dr. said they are at risk or melanoma either way, even if they don't have the gene, and need to be regularly checked by a dermatologist.  But... it is a question of whether we do it now or wait till they are old enough to make that decision themselves.

As for the pancreatic thing, Pancreatic screening isn't simple.  It requires an endoscope through the digestive tract. And then there is the possibility of false positives.  But pancreatic cancer is a messy one. The statistics are outrageous. 95% of people diagnosed die within 5 years.  75% in the first year. 1 in 79 of the standard population will get pancreatic cancer and apparently now I am at greater risk. yay  . Good thing is, the Dr was optimistic about the pancreatic cancer since no one else in the family has had it.  But then again, of my family members who have had melanoma, Me, my Mom and Aunt are the 3 out of 6 that are still kicking. And my Aunt and Uncle who had melanoma, no longer have any living children. So that isn't a whole bunch to go on. 

The Dr. is going to be sending out a letter I can give to my family so they can see the value of having testing done and decide whether they want to have it done.  Just for research purposes it would be helpful.  Since this is still a fairly new avenue of science and there's much to learn. It would give them much more data to work with and then be able to apply to other families. 

At the end of our conversation, the Dr asked me how I felt about knowing the results. It's twofold, a bit disturbing and also kind of relieving.  If it wasn't positive, that would mean I still didn't know "which" gene was affected and the search wouldn't have been over. It's just too bad it had to be one that carried other risks with it. So the ongoing health saga simply continues, it's just the now I  know which path its on. 

Click for more info on Genes and Melanoma

Click for info on the Hereditary Cancer Program in BC

Published Apr 8 2014

Chapter 9 - Cancer Free Depression

Of all the chapters this one has been the hardest to write. The others just came and flowed naturally, where this one came like a small boat in choppy waters. A little disjointed and nauseating.

I think the problem lies in the completion. The others were written after the fact, looking back on memories. Where this one is a current event. I guess it’s easier to write in hindsight. The present is often so unclear. Unresolved.

Right now I find myself ebbing and flowing, in and out of the depression that comes from being "cancer free" or what the melanoma world refers to as "NED". No evidence of disease.  I have come in and out of NED the way I have come in and out of this cloud. The emotional forecast: slightly overcast with sunny breaks and intermittent black clouds.

Up until now, I have written mostly of what brings me up, keeps me going, but I’ve had my dark days hiding in my room. There are days when my anxiety made me impatient and abrupt. But dwelling on the low points isn’t what gets your through. So I have chosen not to explore them very deeply so far.  I wanted to give hope by my words.  But the time has come to share some of the bleaker feelings too. It is part of life. Part of my life. Part of what I am experiencing right now. Part of loss. Loss of health, loss of loved ones, loss of "normal". (Whatever "normal" is anyway. )

I know “Cancer Free Depression” sounds like an oxymoron, a contradictory statement, but to my utter surprise, it was the reality I found myself in just a few short weeks after hearing the wonderful news that my lymph nodes were cancer free. “Depressed?! What in blazes! But I’m cancer free! NED!  How could I be depressed?!”  I think some of it stems from life being put on hold.  The problems you had before cancer seemed not so big anymore.  When the cancer is supposedly gone, you imagine life will be so much better now, like a fairy tale!  But all those things you put on the backburner, suddenly come back to haunt you. All the paper work you put off, the projects around the house, are still there.  Life is still there. Sigh.

So what do you do when you find yourself depressed and cancer free. You look online of course.  To my delight and dismay, this was apparently normal.  Stating the obvious, one article reminded me, “You HAD CANCER”, not the flu.  "The physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one's body and life are traumatic experiences." The fallout from that is huge. The good ole “Mayo Clinic” had this to say, “Recovering from cancer treatment isn't just about your body — it's also about healing your mind. So take time to acknowledge the fear, grief and loneliness you're feeling right now. Then take steps to understand why you feel these emotions and what you can do about them.”  Even though the cancer hasn’t killed you, cancer still kills a small part of you, the part of you that feels safe. The invincible spirit we all carry somewhere inside us, it’s gone.  There is grief in that loss. And with grief comes depression.

After my first melanoma, I still had no idea how serious it could be. The optimism surrounding skin cancer almost makes you feel foolish for being worried at all.  Thankfully, many can get melanoma and just walk away. They blissfully allow themselves to share the outlook the majority of the world has,  "Just cut it out” and all is well.  I am happy for those that are spared the trauma of knowing how close they came to having life hang in the balance. Once upon a time, in Round 1, I was one of them.  It was traumatic, but not earthshattering, it was a blip on the radar that went away. Certainly, it was a larger blip than average, but still….. just a blip.  I thought I knew melanoma and I truly thought that would be the end of it.  “Chapter done, move on”.  Melanoma was supposed to be just one chapter in the book of life, not a book in itself.  I am still hoping this will be a short story, and not a novel. 

Any kind of cancer makes you feel unsafe for a certain length of time, until you’re considered “cancer free”. Till then you are on the watch, hyper aware of your body, each pain, or lump. Is it back?  With melanoma, that time period is horrendously long. For most cancers it’s a 5 year benchmark. But with stage 2A melanoma, my odds actually go down after 5 years.  For me, that means 80% survival in 5 years, and 60% btwn 5-10 years. That seems so backwards. Shouldn’t it go the other way?  Even 10-25 years later there is still a 7-11% chance it will metastasize! I won’t be considered “cancer free” till 25 years or more of being NED then??? That is, IF I don’t get any more primaries in the meantime. NED,no evidence of disease, doesn't mean cured, it just means, not in active battle. It’s a life sentence, no early parole.  That’s far too long to live with a shadow hanging on the sidelines. Do you “have” cancer, or is it past tense, “had” cancer? NED is neither really, its somewhere in limbo land.

Once you get this deep, literally 2.45mm, melanoma never truly goes away from your life. It is an ongoing concern somewhere in the back of your mind.  Most people don't casually check their lymph nodes on occasion, just to see if there is any latent pain hiding there, or an unidentified lumpiness. But I do.  Most people don't see a Doctor every 3 months to check for cancer. I do. Most people don’t have skin removed on a semi regular basis. But I do. If the medical community thinks every 3 months is necessary that kinda makes you a little more wary yourself. Others have described how before every check up, they worry whether a new one will be found. Then if none are found, they worry it might have gotten missed. And if one is taken off, then you wait to see if it’s bad news. Sure you say you will put it in the back of your mind, pretend it isn't there, but your anxiety level speaks differently, and your patience level tells a different tale.  Your sleep is a little less easy. Your mind a little scattered. But you put on the happy face and pretend it’s all ok. This game will go on at least once a year for the rest of your life.

But why should you worry so much? Melanoma is one of the “good” cancers right? That’s what your Doctor will tell you if you catch it early. I will let the facts speak.

A 10mm cancer of other sorts, is stage 1, the very treatable kind.  On the other hand a 10mm melanoma is tantamount to a death sentence.   A 1 millimeter melanoma tumor (one-tenth the size) already carries a significant risk of having spread.  In fact, I was surprised to find out that the survival rates for stage 2 melanoma are the same or worse than for stage 3 breast cancer. The overall 5-year survival rate for patients when detected early, is about 98%. It falls to 62% when it reaches the lymph nodes, and 15% when it metastasizes to distant organs. And it can grow and spread very quickly compared to other cancers. Once spread internally, melanoma is very difficult to treat, since it doesn’t respond to conventional cancer treatments. For stage 4 melanoma patients, that’s the last stage, the American Cancer Society recommends this: “Because stage 4 melanoma is very hard to treat with current therapies, patients may want to think about taking part in a clinical trial.”  Experimental treatment is your best option? Yikes! That is daunting.  There is no “usual” treatment plan per say. So even though it is easily preventable and easily treated at its earliest stage, it is not one to mess with. You don’t want this cancer to get a foot hold. You want to catch melanoma at stage 1! Even then, you can go from Stage 1 NED to being voted most likely to die, within those 3 months between you scheduled Doctor checkups.  If you were faced with this as a possibility, would you be worried? Would you want to be informed of new treatments when they came available?

(Thankfully since this post advances have been made in Melanoma treatment providing more hope for later stages. Now there are treatment plans other than "drug trials". Immunotherapy and other drugs. Hooray for researchers!! There is still work to do but at least there is an action plan. :D)

After round 1, the depression and the shame came and went within 6 months. Then I began to live again, feel “normalish”.  I still felt a sense of safety, and control. I thought as long as I kept up my skin checks, all would be well. I would just catch them all early. But after round 2, safety was blown out of the water. I was realizing how serious this was, the stats were no longer so sunny, and control was become slippery. But Six months seems to be my personal yardstick for the depression period, and I felt myself getting past it, feeling a teeny bit safe again.  I was ready to tackle the next coming years, thinking of moving forward. But melanoma had a different plan.  I had barely gotten the chance to catch my breath when round 3 began!

Have I told you about Round 3???????

Feb, 2013, at my regular checkup. Dr. Derm is doing his usual looksee, in the cute gown and conscientiously warm room. Totally routine. “Are you wearing sunscreen? Taking Vit D?  How much are you taking?”  He moves aside the gown from my “gluteus” area and pauses.  Then squats.  Then gets out his measuring tool.   Then his special light and magnifier.  He has been looking at my buttocks for an uncomfortably long time. Then he says, “I’m just going to put a bit of water on this one, sometimes it helps me see it better” More magnifying, more pausing. “Can you lay on the examining table for a moment?”  Then ……..“I’d like you to make an appointment to have that one removed, it has grown significantly in the last 3 months”.  Awe man…….

When I felt it later, the offensive mole, it had texture, just like my first one.  People tried to console me by saying it was probably nothing, but I was sure, 99% sure, this was another melanoma.  When I looked at it in the mirror, it looked like a piece of dried raisin stuck to my butt.  Dried raisin attached to your skin isn’t good. 

I was so disheartened when it came back as my third melanoma. This CAN’T be good. I could see the statistics sinking in a downward spiral. The numbers have been stacked the wrong way round. I was winning every small number lottery. Only 10% of melanomas are hereditary.  This one certainly was not caused by the sun! Only 6% of melanoma patients get a second primary. Won that one! Twice!  I don’t want to win the small number lottery with this disease. I’m not a gambler! How did the numbers get stacked this way round? I felt, and still feel, like a walking time bomb. Problem is, I don’t know how long the fuse is, and there’s no way to check. With control pretty much out of my hands, I could feel depression laying down on me like a heavy blanket.

As I felt myself sinking into darkness, I did what I have always done, I turned to the “pen” for healing.  Words are my friends. I love words. How they have such deep meaning, nuances and shades. The further I delve into their rich history, the more I appreciate them when used properly.  Words would become my friends and comfort. And sharing them with you has made those words have life and meaning.  It gives meaning to the meaninglessness of this experience. Of cancer. So I started to write.  It was the only way I could put a sense of control to the uncontrollable. And it was a savior. 

I turned to talking to you. I shared my words and thoughts on my blog.  Now I needed to know the beast I faced, inside and out, and I shared the information I found on my facebook page.  I did this for myself, and for you, in hopes that I could provide understanding, and give the gift of knowledge.  Maybe my understanding and knowledge could give you the power to determine a little piece of your own life. Maybe I could help you cope by seeing what has helped me. 

In my research, I found out that half of all cancers are preventable.  I also found out that of all cancers, skin cancer is the most preventable. Sadly, I also found out how misunderstood and underestimated skin cancer was too. I wanted, ….no, I needed, to talk to someone.  As the opening of my blog says: 

“In Round 3 of my battles with Melanoma, I have decided to no longer sit on my hands. It’s just too much. I needed to let it out of my "skin". Be an active participant in this cancer thing, instead of just hoping it will stand at the doorway and leave me alone. And so I will write……….”

Published Feb 17 2014

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...."   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!" 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.
:)

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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 I started thinking of it as a 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.  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.

We made the mistake of changing the bandage for the first time, just before a meeting. The look on his 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.