Monday, May 26, 2014

New "Old" Page

Check out my Newish Page! on Sun products.  I will be adding more. 

I had this page before but then decided it needed revamping and took it down for a bit. Now with a year of sun safe product use, I feel confident in recommending these items. 

Check it out!

Sun Protection Stuff

Tuesday, April 8, 2014

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






Monday, February 17, 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. I told my husband 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 identified 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?


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……….”


Tuesday, February 11, 2014

Relay for Life 2014

Team Rockin Robbins!

2014!

Joined Relay for Life for this year! In Courtenay, BC June 7, 2014

Check out our team page and my personal page:

Monday, July 8, 2013

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!

Thursday, July 4, 2013

UV Jewelry For Sale!

UV Jewelry


I made a new page for some UV Jewelry I made.  It has beads or charms on it that turn color when exposed to UV light, reminding you to seek shade, put on a hat and sunscreen!



Thursday, June 20, 2013

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. 



Monday, June 10, 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. 

Thursday, May 30, 2013

NEW PAGE!

See what our team is doing for the Relay for Life.

We are setting up a booth with lots of Awareness Info and things. 


Go Here:  Relay Page  To see the details!