Thursday, September 25, 2014

Oldie in the system!

Just a quick post to say the journey has started.    Getting the phone calls about appointment arrangements and all which means the bus is being gassed up and idling waiting for the first trip to 'cancer town'.......yuk!

There is a funny note to it though.   I must be considered an 'oldie' as I am now getting messages with brief summaries of what they need to know.    My answers can be left on message machines too!
Pre-opt form hadn't been filled out so I got a call from hospital (I am familiar with the individual) and she listed off a whole bunch of maladies - diabetes, cardiac issues, pace maker , clips, dialysis etc, wanting to know if the answer is still no.     I had to laugh!    Guess I have been around long enough that this can be done over the phone.    Not that I mind, makes my life easier!

Waiting to see how the rest progresses.......MRI, CT Scans, blood tests, ECG all the necessary pre-cursors to the invasion of the body doctors.

Keep you posted :)

Tuesday, September 23, 2014

Interesting bit of information........Common Cold!

I have been complaining about having a nasty 'common' cold lately and a friend sent me this.    I will share the link here for anyone who is interested in reading about the possibilities of this common yet nasty virus maybe doing some good !

It is a very interesting article and in many ways makes sense.   The most interesting thing that I found was that every time I have had a recurrence I have also had a really bad cold about the same time .   I have always thought perhaps it is because my immunity is down and so I am more susceptible to the virus, but this puts a whole different light on things.   I am just 'talking out loud' now, because God knows I am not a scientist or even anything close to that, but maybe it was the virus kicking in trying to resolve the cancer.     Just saying!    I am always thinking about these things, as anyone who knows me  knows, so this spiked my interest. 

Who knows, stranger things have happened and we know so little about the way our immunity system really works.    This miracle we call a body has the ability to heal it self in so many ways, maybe we are looking outside when we should be looking inside.   I am always open to anything that might help eradicate this disease.     So, I post this link purely for informational purposes because I don't have a lot of information on the source.....but never hurts to think about!

Saturday, September 20, 2014

Oh a cold!

You would think that I could get a least for a few more weeks.   But no I have to be like every other person that lives in Canada at this time of year......and get a cold.   Yukky, ukky cold!   Survived the entire year without one and now that I want to have energy and get stuff done I am feeling horrible.    I have so many ideas that I want to do with my place, now that I know I have to have surgery.   Isn't it funny how you try to get things done just when you know you might be leaving?   

I liken it to a job.     While I was in a job, although I am quiet organized, things were never totally in order.   Then when I was going to leave the job, all of a sudden all those ideas that I had had for years come to fruition.    I think its so people think I am more 'organized' than I really am lol.

So I want to paint a couple of tables, finally frame and hang a picture I bought seven years ago, wash my carpet that I have been meaning to do since the dog destroyed my house last spring, oh and finish a couple of projects that I started knitting ages ago, and maybe sew up a few finished projects.   And what happens to prevent me from all this?  I get a nasty cold.

Well, here's to lying on the couch thinking of all the things I could have accomplished if this virus had not taken up residence in my body........Oh but I am going to the Jan Arden concert tonight.....only imminent death would keep me from that!

Thursday, September 18, 2014

The journey begins.........AGAIN!

So the journey begins....again!   If you have read my very early writings you will understand that I have made the analogy of a bus trip.   I am the driver, and everyone else is a passenger.    I often have applied the 'no talking to the driver' rule.     That was a few years ago and whether I have mellowed, or maybe just aged and thus too tired to care, I don't feel such a need to control.  Not that I plan on letting anyone else drive, but I will probably allow more to sit closer and at times even right behind me.     I mean I didn't write my own eulogy remember :)

Some things have not changed though.   Yesterday was a difficult day for me on many levels but I got through it.    Exhausted but feeling glad that a plan is now in place......always like a plan.   So, for many today would probably have been a quiet day of relaxation and reflection.    Not me, I cooked!   You see when I am really stressed I love to cook.    My daughter always claimed that we 'eat the best' when Mom is stressed!     So I went grocery shopping, bought lots of vegetables and beans and set about making homemade chicken soup and my 'huge' extra large roasting pan full of chili.    It feeds about 22 people.     I have no idea who I am going to feed but chopping all those veggies and opening all those cans was certainly a way to work out my frustration.    The soup is on the stove and the chili is in the oven, so now I will sit back and reflect.

This journey, although long (13 years) has had many destinations along the way.     In the VERY beginning, the main destination was purely survival, any way possible.  Also, it was about 'beating this disease forever'.  I was at the mercy of the medical society and had nothing to contribute but my consent for whatever they suggested.   It worked well at the time and allowed me to live in a fog for long enough to gather strength, faith, and a sense of balance again.    I survived, believed in the doctors that where caring for me, and realized that cancer does not need to be a death sentence.       Living is about getting up every day and doing just that.   I got three years at this place!

The second time, was different.   The destination became a little more muddled.    I now realized that the disease was not going to just go away.   It was back and now I had to figure out what the reality of my life was going to be.    It was as if I was officially a member of the club now, where initially I was just dropping by for a short time.   Now it became about pushing the cancer back in order to extend my life long enough to continue filling the frames I had set for myself.     No longer was I to believe that I would 'beat' this disease, I just wanted to find a way of negotiating  with it to go away for awhile again.   So I became an active partner in my care.    What were we going to do and how were we going to reach this next destination?     So,  I researched more, listened more carefully, asked more questions, and came to a consensus with my doctors about how we would proceed.   It worked.....I got a reprieve for another three years before it raised it's ugly head again.

In 2010, they discovered another tumour.   Small but in a place where they had removed one in 2005.   So here we go again :(     Again, I had to figure out what was this particular part of the journey going to look like.   I knew it wasn't going away, I knew  that medically it was being characterized as chronic, so that left a whole lot of new questions.     Still being a partner, also being very well educated in how this disease progresses, I became more of the director of this destination.  I wanted to live a quality of life.     Length didn't seem as important.   Life was about living in the moment not hoping about what the future might bring.    So, this was how I approached my cancer.   I wasn't feeling sick, the cancer wasn't causing any problems, lets just watch it and see what happens and decide at some point down the road what we should do.   I did ask more questions, I did seek a second opinion, but I also trusted those around me who were the professionals that their understanding of this disease was also evolving on a more universal level.   And, so we waited and watched and hey I got four more years of no treatments, and lots of life.    And now we have come to the point in the journey where we need to make some decisions.

Well, I have decided, (note that 'I have decided') with the consultation of my oncologist that if he believes this tumour is operable then we should operate.    It was my call.    The other options were radiation and chemo but for now....lets just get that sucker out.    He agreed he would do the surgery and so that is where we are today.   Sometime in late October or early November I will have a very difficult and tough surgery.  God willing I will wake to fight another day.!

This journey has been very difficult and tiresome at times.   It has not been one that I would wish on anyone, nor if given the opportunity to rewind do I believe that it has any redeeming qualities that would make me want to do it over.   Cancer sucks, being sick and tired sucks....there are no blessings in those things.   I have had many blessings along the way but I am sure I would have had many on any journey I would have taken in life.    One of the other options that I seriously considered is not doing anything at all.   It was an option, and a tempting one.   It is hard to be sick for so many years, even if the physical symptoms are not so bad.   Spiritually and emotionally illness takes a toll on a person.     It is like always being aware of a shadow following you.     Constantly, turning around to make sure it doesn't overtake you.     In weak moments, almost feeling like running as fast as you can to get away.    I thought about just letting things progress but realized that so many would love to be in my place, that I owed it to myself and to my family to do what I can for a few more moments of life.     If it doesn't work, I am at peace.     Life has been very good to me and I have many many blessings, and I have done my job as a mother to sending my daughter off into life.........I have done well and have very few regrets.   

So climb on board, let me know how close you want to sit, and be prepared for a long and sometimes hairy drive, but know one thing, there will be lots of laughter and joy no matter what happens :)

Monday, September 15, 2014

Final arrangements......and a lot of laughter!

Ok....funny but serious discussion with my daughter today.   We decided that it was appropriate that I discuss what I wanted for my funeral arrangements.   I had planned on doing it myself at the local funeral home but she thought it would be enough that she knew......but it also had to be written down.   Her idea was that then she would take this writing and give it to whomever with the words "this is my Mom's is the Holy Grail, if we do exactly as she instructs she won't strike us all dead"....funny girl!

So, I say "I already have written it down.  Its in a blue spiral copy book."    So off I go in search of this ....remember I moved a year ago so it took me awhile.   Especially since I was looking for something blue and it happened to be green.    But eventually voila!    I open it and show it to her.   It is written on two pages with writing going up and down the margins and in and out of paragraphs but its all there.    Not good enough!    Has to be redone and in some sort of order......remember she is just handing it over to whomever.    So I begin my rewrite.    Well as I rewrite I read what I had written.    Some of it was priceless.  I do have to do a little editing because it was done some time ago....friends come and friends go lol.....  There were scripture readings outlined both if I was to be nice....or if I was feeling a little be determined closer to the time lol !    And of course the music.....I guess that has been a subject for some time between the two of us because she reminds me of some music and knows the number on the disc.......The only thing I am leaving to chance is the Eulogy and that is because my daughter thought it would be tacky to have that written by me and ready to be read.   LOL   Oh well hopefully it will be done RIGHT :)

There was even a page of distribution of belongings......which my daughter thought was hilarious.....knowing how she tends to hoard stuff.....

So it was a serious situation, which got done and settled, but it was done with a lot of laughter and fun.   

I am so blessed to have an amazing daughter.....she and I know that this journey has been difficult and no one has been more of my champion than her.    She has walked every step of the way in the bad times and the good times.....we have shared laughter (lots of) and tears (a few) and we walk hand in hand......toward an unknown future.     God I am a lucky woman, mother and now grandmother!

A weird post after a long week!

I have promised myself I am going to write more often.   It is very cathartic for me and often I am able to express myself much more completely while writing than I am when meeting people face to face.   I don't really feel like writing but know that is usually when I should be doing it.

I can say that for the first time, at least since the last time, I am in pain.     Not excruciating pain, but that uncomfortable feeling one gets when you sit too long in a position.   A stiff, ache.    Then every once in awhile I move a certain way and I get a 'stitch' of pain that stops me.   Like the tumour is caught on something and I have to shake it loose.     I find this not only annoying but a little disconcerting.   I don't remember pain before.     I also notice that I seem to be favouring my right leg when I walk, especially up and down stairs so that can't be a good sign.     Hmmmmm....guess it is time to do something.

I have so many other things that I want to do in the next while, I can't figure out how I will possibly fit in anything else.....especially something as unattractive as surgery.   It will really put a wrench in my other plans.    That may sound funny, but in many ways that is how I see it.   This disease is serious but I find it very intrusive too.    Seems to rear its ugly head at the most inopportune moments.  That does not mean for a moment that I don't take it all very seriously.   I think there are many people who think I am too cavalier about my cancer.    Not at all!   I am more than aware of how serious this is and what could ultimately happen.    I am not unaware of the fact that I could die.   As a matter of fact, that is something I think about a lot.    The only thing I refuse to do is go around as if there is a death knell ringing my ultimate demise.    When I am alone, I think of all kinds of morbid should I pre-arrange my funeral, what is going to happen to my animals, should I be cremated or buried.    Really important questions....only not really great coffee/knit clatch talk.   Also, many are quite uncomfortable with death chatter.   So, I enjoy my time with others, laugh and have fun, but often go home and think about my reality.

In some ways I am writing this because lately there have been a few people who seem to think that maybe I am not taking this  seriously enough.    Years ago when I had an accident and I had spinal cord damage, I had a similar situation.     I was very seriously hurt and needed a lot of care.   I was in physio for seven months learning to walk again and still have residual paralysis on my left side.   At the time the doctor felt that I wasn't taking my limitations seriously enough....he was worried that maybe I had not accepted my situation.     I had to tell him that 'oh I know what's going on, more so than even you do"   I just choose not to let it be what dictates my behaviour and moods when I am out in the world.    Why would I?    I love being with people, I love being out and about, what would be the point of being in a constant state of worry, sadness, when I am in situations that I love to be in.   I have lots of down time at home all by myself to do that.    I know this way of being makes some uncomfortable, so I just want to reassure them that I do have my sad moments, and I am taking all this very seriously.   I just don't want to be that person either, that everyone sees in the grocery store aisle and turns the other know the ones I mean....the ones you no longer ask "how are you".    The fact people still ask, I see as a good thing,....I must be giving the right answer lol :)

I didn't realize how much that was bothering me.    That last paragraph came out of somewhere very deep down.   I realize that my way of being scares people even more than the cancer.   If I am morose and sad, look sick and battered, then they too would know when they are look sick you are sick.    One thing I have learned about this horrible has a very good way of masking itself.    You look great and the world sees you as healthy, but inside it is eating you alive.    If we could tell people had cancer by the way they looked, it would be diagnosed so much more quickly.   The reality is that cancer doesn't give itself away until the 11th hour.....when you start to look like you aren't well it is already most probably too late.      I get this "you look great" all the time, and have to smile to myself.    Most times I just say thank you and move on but recently I did something I shouldn't have........Please read this smiling as that is how I am writing really is funny

There is a person that I see on a regular basis and although I have said hi she often doesn't acknowledge me.   That is fine, some people are shy and don't like to engage in idle chatter with strangers.....I have no problem.   So I stopped saying anything and we would pass each other without a word.    Then one day recently I was out walking the dog and she was passing by......out of the blue she said "you have lost weight, you look great"....I said thank you and then she said "have you been trying to"   (read she obviously thought I could lose a few pounds lol).....I stopped and smiled very nicely and said "actually no, I have been sick  lately with cancer".......(bad girl bad girl )   and the look on her face was hilarious....she tripped over herself and came right over and gave me a hug.     I felt terrible (only briefly) and thanked her and went inside.   I do not know what possessed me to do that but maybe it was a number of things.   Our obsession with weight, body image, diets, etc.   I believe that only in North American does skinny signify health....anywhere else in the world it would mean hunger and malnutrition.   

So as you see, I am not always the nice person.   I do have a dark side that periodically appears.    And it can be very just content yourselves with the fact that I choose to be pleasant and nice........and hope you never have to be on the receiving end of my not too often but not too  nice morbid sense of humour.   I really was trying to be funny but realized that she didn't think it must be that Irish blood that runs through my veins......very faintly but oh when it raises it's ugly head!!!!    

Wednesday, September 10, 2014

Blessings......for at least a moment!

Ok so am sitting in my trailer eating pancakes with blueberries and maple syrup ..... What could be better?

I realize this week that the way I see my life in many ways is a blessing ... I have a naturally optimistic outlook which not everyone has .   For some I think they can't understand me and how I live  with cancer .   The majority of time I do find my life quite amazing although privately I do have moments where I say "why me" .    It isn't often and I have difficulty showing that side to the world .   This week I have had the opportunity to see that although I may have problems ... I am able to enjoy most moments .   Some don't have that ... They have depression, extreme anxiety, or just a sadness they can't get relief from.   How awful that would be !

So as I begin my next part of this ongoing journey I am reminded that I have so much to be grateful for .... Quiet mornings drinking coffee by the bay watching the geese and cranes swim , fish jumping and smelling campfires is for me a vision of what heaven may be like .   Finally, looking into the face of my beautiful granddaughter I see heaven !

I am a very blessed woman despite the negatives ... It's all on what you focus :)

Note : this was written on Sunday September 6, 2014........since then life has raised it's ugly head again.......I hate cancer!

Wednesday, September 3, 2014

New struggles......

A new year......having worked in education my year always started in September.   I still have the 'new year' feeling every fall is a blank slate.    To me it is much more meaningful than the calendar New Year.    This was the time when I actually did try new things and ways of being and could see the results in my day to day.

It has been a number of years since I worked but still I get that new year feeling every September.   Nostalgia comes with the falling of the leaves and the school buses going by.   It's a great feeling and I love it still.    This fall though I find myself a little off kilter.   I find out in two weeks what my next journey entails, and to be perfectly honest I am not all that interested.   I find myself waffling between not caring and being terrified.     I am so tired of this whole trip......I just want to get off the roller coaster and crawl into my cave (read trailer) and forget the whole world.   I have this desperate desire to start all over again somewhere else.    It is very difficult to put into words.

I imagine it is not unusual to feel this way.     I feel very alone this time.   In many ways it is of my own making because I haven't really wanted to talk about it and have kept many of my closest friends at arms length.    I feel that if I could just get away from all that I am familiar with it would go away.   I also feel like a 'broken record'.   Someone said that to me recently and it was very refreshing to know that she actually got it.    It's like 'here we go again" and I figure who wants to know.    

When this all began so many years ago I had the strangest feeling that I would get to this point. I even wrote a brief essay about cancer stealing your will and your soul.   It's like my soul is tired.    I just don't have the energy to go through this again.   I feel like I have done my job, my purpose is complete and maybe its just time to go.    When this all started I had things to do.  I had a daughter to raise and plans.   Now my daughter is a beautiful self sufficient woman with a family of her own and I don't have any real plans.     Not that I don't want to see my granddaughter grow's just that it feels like my tasks have been completed and I can just fade away.

I am also terrified of not doing anything at the same time.    This feeling of giving up is scary.   I don't want to die....don't get me wrong.    But living seems to be such an up hill battle at the moment.   I know I am not literally dying at the moment......we are all dying from the minute of birth, but I feel like I have to work harder at the living part.   Feeling very sorry for myself obviously!!!!
That's ok I allow for pity parties every once in awhile !!!

So, September 17th the bus leaves the terminal.    I really don't feel like getting on it or driving it, but then we "can't always get what we want" (think that's a song lol) .    So, I will pick up the keys, wait for the 17th, do what I am expected do and keep going.     I just hope that people will put up with the 'new' journey woman....the one who this time is not too enthusiastic about the trip.....