Life.....Ain't it grand!

Well, life goes on.....and on and on.  I have gone through a roller coaster of emotions, activities, and experiences over the past few days and I wouldn't change that for anything.   I visited with old friends, spontaneously taking a trip to see them and having the best time.   I never was one that would do things spontaneously, I needed time to organize, control and make sure that there wasn't something else I should be doing.   Well, that person still exists at times, but I like the new one who at the drop of a hat can change plans and do something totally new.    I spent an amazing couple of days with two old friends (40 years of knowing and stories....amazing) and we laughed, finished each others sentences, and teased each other how we hadn't changed (at least in personality.....)

I returned home to normal, family stuff,  realizing that parenting doesn't stop at 19.   No one told me this!!!!   The children are older, and bigger, and so are the troubles.    Having to admit that I have no control of choices my children make is still not something I have really admitted to.  So, I nag, then walk away....with them standing there saying "do you still love me????".....and of course I say YES!!!!!!.....in an unloving tone.
Then finding out someone who I have known my whole life has died months ago....am sad but also relieved as he has had Alzheimer for years and is now gone in body having left us many years ago in personality.  I remember the last time I spoke with him...about five years ago.   I phoned and he answered the phone.  I said who I was and he was so happy to hear from me.  We chatted for some time and he was as witty and funny as always.  At the end of the conversation he said "its a pity I won't remember your calling, and will probably call you back", at which I replied "why don't you write down that I called and that we had a lovely chat".....and he said "o.k., if I remember"......   What a guy!    He was one of my Dad's best friends and now they are together in heaven philosophizing and discovering who was theologically correct. :)

So, my life is full and still writing its stories.  Even when we are dealing with horrible diseases, the world around us keeps on turning.   I am glad that I don't have to get off because of my cancer.  Sometimes just spinning with the rest of the people is a great way to be......I bet too that I am enjoying the spinning more than some because I am so glad to be here to do it.   Its like when someone says "Oh I don't want to remember my birthday, it depresses me"....my response is "its the alternative that depresses me"!!!!!!!

I am now off to knitting, another opportunity for laughter and fun.   Can never get enough of that.......

Overcoming Death!

I haven't written for awhile, and that is a story for another time.    I started this blog in order to put order to my thoughts and to at least in writing enter into an honest conversation, if with no one but myself, what was really going on in my head.   It has worked beyond what I would have expected, and not only that I also enjoy doing it.  I am a storyteller by nature, and any medium that allows me to share stories is one I know I will like.   I have always believed that we are just a collection of stories.   Good ones, bad ones, sad ones, happy ones, all the experiences that have made me who I am today....and it is in the sharing of them I can then let others know who I am.   I once had a spiritual director who put it this way "we are writing our own scriptures"....our stories are sacred!

If you think about this it is so true.  How many people love a good book, a good story.    We all love to watch movies, especially the ones that resonate with our own lives.   Maybe even the adventures we wish we could have but live vicariously through others.   We are a people of stories!... I love to tell stories, as anyone who knows me will attest to, but I also love to read stories, even more than watch them. I prefer my imagination and interpretation to an other's.  I am an avid reader and will try any book that is given to me.  I have grown in my choice of books to a place that if I decide I am not enjoying a book, or perhaps am not in a place at that time to read a specific book, I will stop and put it down.   Most times I will go back to it at a later date and try again, but I will make a decision that I dont' want to read a book once I have given it a fair shake.   Something I find many people don't do, they must finish a book.   Interesting, even a story that might not be of interest most at least want to know how it ends.   Sometimes, I just prefer to make up my own endings!!!!!   Now there is a point to my rambling......

Many, many people over the years have told me that I should write a book.   Of course, I humbly shake my head and say "what would I write about"....and of course people say your life, your journey with cancer and so on.   Well, I started this blog in some ways because of this, but also for myself.   As I have said many times it is very cathartic.   So, I am aware of how writing is important, and how words can be very powerful.   Well, I just read the most amazing passage in a book I am reading and I wanted to share it.....it really sets out how important writing is for all of us....to tell ours story no matter what it entails.

"People disappear when they die.  Their voice, their laughter, the warmth of their breath.  Their flesh.  Eventually their bones.  All living memory of them ceases.  This is both dreadful and natural.  Yet for some there is an exception to this annihilation.  For in the books they write they continue to exist.  We can rediscover them.  Their humour, their tone of voice, their moods.  Through the written word they can anger you and make you happy.  They can comfort you.  They can perplex you.  They can alter you.  All this, even though they are dead.  Like flies in amber, like corpses frozen in ice, that which according to the laws of nature should pass away is, by the miracle of ink on paper, preserved.  It is a kind of magic."   (Diane Setterfied, The Thirteenth Tale)

So I will write, I will express my anger, humour, thoughts, feelings with these combination of characters that make up words....and then I too will have overcome that dreadful state of death!!!!!!!!!!

New Life!

The sun is shining, the snow has melted, and the wind is warm.....the bushes are sprouting and the birds are back......all around there is the hope of new life......spring reminds us that 'this too will pass'....live, love, laugh!

Vanity vs Cancer

When I first was diagnosed I was introduced to the programme "look good feel great"....I was more excited about the makeup that I would get for free rather than the philosophy behind it.   Over the years that changed.   I have attended three of these presentations, and have felt a little guilty going to more than one.  Again, the free makeup is great, but there really is more to the time.   I got to meet other women who are going through the same thing, and it's good sometimes to have different people at different places on their journey.    No matter what you say, we all have a streak of vanity in us.    Even if it is the opposite and we refuse to worry, that's our way of dealing with vanity.   Over the years, I have come to realize that looking good when I actually feel like crap, is a way of reminding ourself that 'positive energy, breeds positive energy" even if it is only the external energy that is positive.   Also, its fun to watch people be surprised that someone with cancer can actually look really good too.   I think we all want people who are sick to look sick, then we can assure ourselves that if we look o.k. we must be healthy.  Unfortunately, if looking bad was a symptom of early on-set cancer, it would be that much easier to diagnose.    You can't always tell by the outside that something is rotten on the inside.....and that can also work in our favour!   So if you ever get a chance to go to one of these events, or know of someone who might benefit, GO!!!!!!   If you don't have cancer you don't get anything but you can always be support to someone else by taking them.

One of the biggest external hurdles that I had to overcome when I was diagnosed was the lose of my hair.   Initially, I thought it wouldn't be a big deal.....but do you know how many shampoo commercials are on t.v. on a daily basis!  Hair is a really important thing in our society......and bald women aren't seen nearly as sexy as bald men.  Still it really surprised me how much it bothered me when I began to lose my hair, and the reason it was so hard surprised me even more.   It took my anonymity away.   As I said before, you can't always tell who has cancer simply by looking at them.   We walk among you anonymously, living with this disease.    When our hair falls out though we become very obvious, and most people know that a women with a kerchief on her head, or a hair piece that doesn't blow in the wind, is probably undergoing chemo. All of a sudden I am not deciding who I tell and who I don't tell.  It's not that I don't want people to know, it's  I desperately  want to have some control over  who I allow to know, it a control issue.  It is another area in my life that the control has been taken away.    So, now everyone knows, and the puppy dog eyes begin.   I do understand that people are being normal, and sympathizing with me, but when people who would never give me a second look, turn and put on this 'poor you' face, its hard to stay sane.    I have learnt though to be very generous and just smile back.   So, the next time you see us, just smile and know that we know you know, but no 'poor you' sad eyes!!!!!!   I must share the best 'no hair' story that  happened to me.

I was at some event and I had dressed up and was wearing a very fashionable scarf (I never wore a wig...too hot and really they don't ever look real).  I think the times I have had no hair are probably the times I looked most put together.  I spent hours looking for nice scarfs to match my outfits!..anyways I digress...
So, I went into the washroom and when I am washing my hands a woman came out of a stall and stood next to me.   She looked at me, not directly, but through the reflection in the mirror, and smiled and then said "I used to have a hair cut like yours".    It took me totally by surprise, and I started to laugh.    Then she said, "and look at my hair today" as she stood there with a full head of hair.    I looked at her directly then and said "thank you".  That was the entire conversation, nothing else was said and we both left!  It  made my day....no puppy dog eyes, no pity, simply a statement of fact that she knew what I was going through, but hope for better times.      Don't you just love it..........p.s.  just had my hair done and nails too....so still going with the 'look good, feel great' philosophy even when I not taking treatment..vanity isn't all bad......a life's lesson.

Ovarian Cancer...........SUCKS but it doesn't go away!

I am finally feeling a little more comfortable with this form of media and therefore, have been able to expand my horizons and find other blogs that I am interested in.   Yesterday, on my day off, I took time to peruse the various cancer blogs that were online, specifically Ovarian Cancer.   In the past I think  unintentionally I have avoided them.   Again, denial occurs in various ways and through different behaviours.   In part, I understand why.  My personality is such that often I move into a 'have to know everything' mode, and then have to be responsible for everyone else knowing it all.   When I was first diagnosed, I found that little was known about this disease, and there were no support groups for Ovarian Cancer.   Very different from Breast Cancer!   I felt alone and very discouraged.  Through my research I found this wonderful newsletter that was dedicated to Ovarian Cancer, Conversations.   It was founded and printed by a woman in Texas, Cindy (who has since died - 2003).   I began to receive it on a monthly basis and started to feel that there were others out there like myself and I wanted us to be able to meet and share our stories.  Remember, this was 2001, and as far as I know blogging was not so well known,if it even existed.  Although the Internet played an integral part in my finding women and connecting.  I was able to be connected through this newsletter to a woman just down the road from me in London, Ontario.   Together we met and decided we needed to start a support group...that was in 2002 and the first meeting consisted of four women, and it is still going.  Through this group we began a run for OVCA, a motorcycle ride, donated to have the patients lounge on the gyn/surgical floor revamped (a whole blog in itself), and provided DVD and movies for the Chemo suite.  Almost 1/2 million dollars has been raised which started a Chair for OVCA at our local hospital.  All the funds, and I mean all the funds, go to Ovarian Cancer research!!!!

The problem was and still is, that the mortality rate of this cancer is so high that we have probably said good bye to more people than have continued with us.   As a matter of fact, I am the only living original member, all those who joined in the beginning (29 women, and I don't count anymore) have died.   The hardest one was Nancy the other founding member.   She was the one that was suppose to live.  Her cancer was Stage 1 and so we figured that she would be around for a very long time.    She and I were a team.  The thing about Nancy was that she was great at arranging to have talks given at churches, women's groups, even at the hospital to the nurses.  The problem was that she would agree, but hated talking in public.  So, she would say yes to whatever group was interested, and then call me and say, would you mind giving the talk.   So, she was the engine behind the voice.   We were an amazing team.   And then she died, August 2005, just before I had my second surgery and chemo. About a year and half later I jumped off the bus!   It was just too much for me and so I moved away from the group (it still meets once a month) and pretty much decided that I had had enough.   As my oncologist said one time when he asked me to talk somewhere and I said no, 'you don't want to be the poster woman anymore', and the wonderful thing is I had the courage to say 'that's right'.

So its been a couple of years since I have been actively involved in educating about this disease, at least on a more formal basis.   I have felt guilty many times, I have dealt with 'survivor guilt' on a number of occasions but I knew that I needed to step away.....it was just too depressing.   Originally, when Nancy and I decided to start the group, our doctor was not too keen on the idea.   He believed that it might have the opposite effect, the death of so many women on our psyche.   I think to a degree he was right, but I also believe the good that came from the support group out-weighted the negative.   The important part was knowing when to 'step away'!   You can get into a rut, and become the disease, rather than just talking about it.   I did not want that to happen to me.  Life was to be lived, not just exist and it was necessary for me to move away and be a 'regular person' again........at least for awhile, till that beast raised its ugly head again!

I think maybe in some small way I am willing to move back into it.  I haven't decided how or exactly what I will do, but I have opened my mind to the idea.  I have always educated women about this disease on a personal level, never letting an opportunity go by that I might give them knowledge to at least recognize the 'very vague and often silent symptoms'.  My dream is to make Ovarian Cancer as well known in the 21st century as Breast Cancer became in the 20th century.......

So, I am back for good or for bad.......and I have the women who are stilling slugging it out to thank (or blame) for it.......thank you for allowing me back into the fold......we are all amazing women!!!!

Mental Health Days.......

A Day Off.....I remember when I was a working woman, every once in a while I would decide I needed a 'mental health day'.   I would unplug the phones, keep the curtains closed, stay in my pajamas and just pretend that there was nothing outside of the house.....I was an island all by myself.    Since retiring (read getting sick) I don't do that anymore.   Maybe it is b/c I don't feel that someone who doesn't work deserves to do it....or maybe I feel that I have more mental health days than I can use.   Today, I decided to take one!

I will sit and drink coffee, while I watch the animals wonder why I am not racing around like a tornado.   I will eat toast all day, with maybe a soft boiled egg.  That reminds me!  When I was little, and not feeling well my dad would make me an 'egg in a glass'.   It was a soft boiled egg and buttered toast cut into little strips all mushed together in a tall glass, with pepper and salt.   OMG, did that taste good and it even had a medicinal quality to it.   I am going to have that today too.  My Dad was great for inventing little things, usually to consume, to help you feel better or even just as a surprise at bedtime.   The most memorable 'surprise' was one night when I was going to bed and he was tucking me in, I said I was hungry...of course then my little brother yells out he too is hungry.  So, Dad goes downstairs and makes us something 'special' to eat.   Upstairs he comes, and we are giggling away now both in the same bed waiting for the special thing, and he arrives with two sandwiches on a plate.   The lights are out so we can't really tell what kind they are, and we trustingly take a bite, knowing he would never gives us something we wouldn't like.   The taste was familiar but it took a few seconds to figure it out......then we both screamed "ketchup sandwiches"    Yummmmmmm!!!!   Who would have known that something as disgusting sounding as 'ketchup' sandwiches would be just the thing we would love, in bed, in the dark.   Obviously my DAD.....

Well, as you see I am in a nostalgic mood, so I am sitting in the bus, with my coffee in my hand remembering wonderful things, pretending that I am all alone.   Feel free to get off for awhile, it may be a few days b/f we move anywhere.    Today, I am only moving in my mind................

Funerals......

I have decided that the only positive thing about funerals are the little salmon salad sandwiches that you are guaranteed to get at the luncheon.   No one makes those sandwiches as good as the church ladies.....

I have exhausted my reserve, and am looking to take a break from reality.  I have decided that I am going to start the bus up again and I am driving.   All aboard, but no negative talk....only funny stories, laughter and positive noises (that opens it up to alot of stuff, especially if purple Pam is on board) allowed for the next while.  I try really hard to keep myself and those around me up, but right now I feel like my world sucks.    Feeling like crap, head pounding, searching for some good news, and then the bottom falls out for my daughter....it never ends.   She of course then feels that I am not there for her, but am there for everyone else.    Children just don't get it sometimes!   I am there for her but it's different when it comes to our own children.   Everyone else, we listen to, we hug, we comfort and say things like "it will be o.k."   "this too will pass", but when it comes to our own we feel the need to fix everything and make it all better.    I can't do that and so when I am tired, I don't always respond well.   

Today, I refuse to feel bad.   I am having a very selfish day and I am willing to admit that there are times when not only do I not want to be the 'rock' in someones life....but I just am not even going to fake it.

It has been a rough time.    Funerals Suck big time......and even more when you keep placing yourself in the casket and replacing the mourners with your own family members.    I must say though that there was a moment when I was in awe.....at the beginning of the funeral, a little boy of about 10 came out to the sanctuary with music papers.   Placed them on the piano, sat down and began to play for his Dad.....what a tribute....who wouldn't be blown away.    To have the strength, and the love to want to play for Dad one more time.   Then the oldest son got up and gave the eulogy....what parent couldn't be prouder of his children than one who's offspring take an active and meaningful role in their Father's funeral.   The spirit of children is sometimes a brief window into the strengh that eternity offers.....if only we could all be so consumed with pleasing another as to put ourselves at the most difficult time into a place that most would run from.

So, as I end my day, I tip my hat to those boys, and I realize that even in the midst of tragedy, God offers us a glimpse of Hope in the future......................