Thursday, June 28, 2012

Happy Anniversary, Happy Anniversary!!!!!!

Just making a quick post to acknowledge the dates this week.   Yesterday was my 9/11 anniversary.   Eleven years ago to the exact day and date I landed in the hospital and into surgery and was diagnosed with cancer.   That day is ingrained in my memory as if it happened minutes ago.   The feelings, emotions, tears, fears, and even the conversations will never be forgotten.  I can tell you every person I spoke to in the next three days and almost verbatim the conversations I had with each.   Today eleven years ago, was the day that I told my daughter .....that is one conversation that I have absolutely no memory of and didn't even at the time.    The mind does not allow one to relive the unrelivable!!!!  (is that actually a word???)

Tomorrow it will be eleven years to the day and date that I had a second surgery in another hospital to actually remove the numerous tumours and be officially biopsied.    Ovarian Cancer would be the final word but we all knew that immediately anyways.   I was told three maybe five years at the most........and now I celebrate my 11th anniversary....

So, what happens eleven years later on that very day......I am flying away to Florida to  the sun, sand and sea and to count each and every one of my blessings.......cancer NOT being one of them.

So, to anyone going through this, may I say only one thing.     NO ONE knows how long we have on this earth except God (herself) and so never give up hope and live every moment that you have.    I firmly believe that you are not dying until a few hours before you are live, live, live.  

Wednesday, June 27, 2012


This journey with cancer sometimes takes you places that you never imagined.   Just the other day I was feeling so good about my situation and then 'bang' life hits you in the side of the head.   One of the things that happens when you are diagnosed with this disease is you involuntarily become a member of a larger group.   Some, don't feel too attached and just go along on their own and others find great solace in being with people who know what they are feeling without any words.   My situation is a little different still!   Because of my past profession I have been privileged to journey with some in a very intimate and amazing way.   I used to be a chaplain (read minister if that helps explain) and so often I have been asked to help others with this diagnoses.    It really is a privilege, albeit a very difficult one at times.    In training we are taught to leave ourselves at the door when ministering to others, but in this situation I must bring myself, my journey, the wisdom I have garnered and sometimes the sadness with me into the room.   And then, I must sit and just listen!

Yesterday was one of those days.   It was also a very difficult one for me emotionally.   I felt guilty!!!!   It is that survivors guilt that we often hear about.   I feel like I somehow jumped the queue
and arrived on the other side less scathed than most.   I know that if I spoke of this to those who have been my companions on this journey, they would probably tell another story, but that is how I felt yesterday.   As I sat with this woman and listen to her fears, hopes, disappointments, and exhaustion, I knew that at this moment in time I was not really at that place.   I recognized those feelings, I have had those feelings, I know how oppressive those feelings are, but I am not there.   I felt guilty about that.  Also, I saw the spirit that we have as women, as mothers, as wives, have to want to do things for our family, even if it means fighting for our life in order that they don't suffer.    I don't mean that they give us the strength to fight the fight, I mean we feel the need to continue the fight amidst the exhaustion, the frustration, the lack of hope, purely to prevent others from suffering and feeling hopeless themselves.     I ask myself, why?    It is the spirit of love I realize.

The true spirit of love is to want the best for others, and to be willing to do anything in order to achieve that.   Especially as mothers, we cannot fathom allowing our children to suffer if there is one ounce of strength left in us.   In some ways I wanted to scream "this is about you".....'what you want', ' how you feel', but there was that part of me that totally understood how she felt.   I too would do whatever it takes to avoid my daughter feeling this disease has won, has taken from her the one thing that she loves more than anything.   I too will fight to the bitter end.   And yet, I felt guilty because at this moment that is not my fight.   I am not there and I feel like I somehow missed the bullet.

I guess, the guilt I feel is also part of love.   Love for another who is suffering.   Love for another who is suffering something that is as familiar to me as my own body and soul.   I know the torment, I know the emotional and spiritual pain that cancer can cause, and I know that there is no one who can change that or take it away.   I feel guilty because with all my experience, I can do nothing but listen.

Being a presence, an ear, a person to hear what is being said, and to sit quietly is the hardest part of being a friend, but in the end it is probably the most important part.   I wish I could have done more, but for now I will pray and my prayer will be a pray for peace for her.   A prayer of hope and a prayer of coming to accept whatever it is she must accept and to be at peace with it and know that 'all will be well'.

Friday, June 22, 2012

Cancer....what cancer?

I am not really sure what to write.   I am a little confused these days and not just about my illness but my life in general.   In a week, it will be eleven years since cancer has essentially taken over the way I live my life.  Not in a day to day way, as I refuse to become a slave to the disease, but in a futuristic way.  It seems that no matter what major issue arises in my life, such as whether to work or not, where to live, whether to travel, etc., the first question that comes to mind is how is my health.   Or how will it effect my health, or is there decent health care.   It is a running theme, not only with myself, but with others in my life that I must some how consult my 'cancer' before making any major decisions.   It can be a very annoying and frustrating way to live.    I mean I got rid of my husband for very similar reasons!!!!!!!

Most people don't think, well what if I get sick, or what if I need to go to the hospital, etc when making life decisions.  Not that they might find they don't need to answer these questions in crises situations, but it is not the deciding factor in their life.   If it was, we would consider them 'neurotics' and tell them to get on with life and stop worrying.   For some reason, when you have cancer, it doesn't seem that you are allowed the same freedom.    I am getting really tired of it.

My latest appointment shone the light on this dilemma most acutely.   I was re-diagnosed with OVCA in November 2010.....the third diagnoses.    So, it has been 19 mos since this beast has risen its ugly head.  I know that I have always had the disease, but it has not always been visible to the eye.   Well, 19 months ago they found a tumour.   We have been following it and making decisions to leave laying dogs lie and that has been fine.    Yesterday, I received the results from my CA 125.   I hadn't had the test since last September 2011, and so was prepared to see an elevation of levels.    Although, I must admit I always consider the alternative that perhaps I am cured and it will be back down to 7 or 8 (the normal being anything under 35).    Well, neither of these situations arose.   It seems that my CA 125 is remaining relatively constant which is completely the opposite of the two previous times.    At the initial diagnosis it was almost 4000, dropping to about 6 after surgery and 6 rounds of chemotherapy.  Then in 2005, just before my second surgery, it was 3400....we watched it for 15 months rise and finally decided to go in and take those suckers out.   At that time it dropped to 14 before chemo!!!!!   So as you can see it is a relatively good marker for me (not necessarily for everyone unfortunately).   Well in 2010 it was at 39 after sitting at about 7 or 8 for four years.   I knew it meant that the cancer was growing again, and low and behold the tests found a tumour in my right lower abdomen on my psoas muscle (I had a tumour removed from that spot almost five years earlier).    Again, we decided to watch and decide as things grew and changed.   It has been 19 mos. (and they figure the tumour was there about 4 mos before we found it) so its coming up to almost 2 years of growth.....and my CA 125 yesterday was a whopping 52..??????     Not the huge increase we had seen in previous times.  

Needless to say in my books that was like finding out I was cured!    Although, my doctor doesn't like it when I use these words as he thinks I am tempting the universe to prove me wrong :)....but even he said he couldn't really tell me why this was.....I mean the tumour is there, it is growing albeit slowly but nothing like in previous times.   I have been pretty healthy, not too much pain, although I find I am alot more tired these days.   As I have said in past posts though the tiredness may be just the effects of getting old!!!!!!....or it could be living eleven years with the pall of cancer over my head and it has made me exhausted.

So, as of today, my new mantra lived without considering cancer!!!!!....I am going to look towards the future, make decisions for the future without the constant nagging of 'what about your cancer'......who knows I may not have to do anything for another two years and there are many things that I can do in that time least that is how I feel I am running with it......:)

Here's to tempting the universe....... Cancer, what cancer???????

Thursday, June 14, 2012

Saying goodbye........

Its not often I feel such strong feelings of hate, but today that is how I feel.   I hate this disease...I hate it, I hate it, I hate it.      I seem to be able to deal with my own illness but it is when it come to others then my emotions just can't seem to be kept in check.   Today, another wonderful, beautiful woman has been taken far too soon because of this disease.   She wasn't young, but she certainly wasn't so old that her family didn't need her anymore.    My heart goes out to the family.   Not even a year ago they lost their father to cancer and now today they have said good bye to their mother.

As we age, life seems to become more and more unfair.   The people we love seem to leave and we are left with only memories.   I know that the circle of life is necessary but when it comes to this damn disease I have less ability to accept that this is 'just life'.

Cancer sucks, it takes away first your body, then your spirit, then your soul and finally your life.   I hate this disease........may you fly on angels wings to a better place, and may your children and grandchildren see your spirit in everything that reminds them of you......I loved you too...goodbye my friend.....

Tuesday, June 12, 2012

Blood tests......appointments?????

Every one at some point has had to have blood tests.  The worst type are those 'fasting' ones.   First, because as soon as you know that you can't eat anything after a certain point, you are starving all night long.     Now for older Catholics this is not as hard.  We used to have to fast on Saturday nights till after Mass on Sundays so we learnt a few tricks.  The first trick is to eat an early supper, then to watch the clock and eat again right before the 12 hour mark b/f your test.   Then, as we would figure that we wouldn't receive communion till half an hour after Mass started, and similarly you don't get right  into your lab add about half an hour more before the cutoff.   The other thing is to decide to go to bed earlier than usual so the morning comes faster.....  Just a little trivia to help those younger or non-Catholics cope with this type of scheduling.!!!!!

Secondly, we are all aware that its timing, timing, timing.  We all know that if you get there early enough it will be faster.  As I have written in the past, its important to remember that a large number of the people going to these labs are elderly and so early is a very subjective term.  Arriving before the lab opens at least guarantees you a seat, and hopefully a quick turn around.   But if you want to be first I suggest you camp out the night before....trying to get up earlier than elderly people is like a dog actually catching the car.  Right?    Well not anymore........

So, I have had to get blood tests lately, and both times I have been delayed for a couple of reasons.   The first test I had to drive all the way into London, because OHIP will not cover the CA 125 test unless it is done at the Cancer Clinic....anywhere else it cost $45.00.    I could understand if the reason for the test was that the patient requested it for their own curiosity, but I have Ovarian Cancer and this is one of the tests used to give some type of idea if or how much the cancer is growing.....I mean come on I am actually a member of the club...don't I get it for free even then!!....I digress as usual.  

Well off I went figuring it would take me 20 minutes to drive each way, 10 minutes to park and walk ( I refuse to pay for parking), and maybe a minute to get the test......I was wrong.    First, they  couldn't find the requisition, then they couldn't find or reach the nurse, then I waited because maybe she was on lunch.   An hour and half later ( thank goodness I wasn't paying for parking) we decided that maybe someone else could write up a requisition for me.   I am not bitter about any of this because I have great admiration for the staff at the was just one of those days when the planets weren't going to align no matter what.   The upside to this delay was that I met up with a woman I haven't seen in months and we had a great chat.....needless to say she too was waiting for

So yesterday I decided that I would go for the fasting blood tests today.   Planning is important as I pointed out in the beginning.   I ate rather early, had a snack just before 8 and then went to bed early.  I had decided that I wasn't in such a hurry that I had to get up at the break of dawn so I figured 'how long can it take if you get there after 8?????"    WELL, let me tell you.....they have changed all the rules.  Not only that, I went to the building where the lab was to find a note that said "We've moved!"....across town.    So, now my timing is a little off, I haven't had coffee remember and I have to drive across town, avoiding all those people turning into the three Timmies I pass along the way.
I get to the 'new' place and park.   There happens to be a woman in the car next to me that I know so I stop and say hello.   It is 8:18 am at this point!    She says, I hope you aren't in a hurry cause Mom has been in there since 7:30 a.m.     GREAT!!!!!!   So I go in and there are wall to wall people....sitting and standing.   I hand in my paper work and sit down.  It is now 8:20 a.m.   

Nothing seems to be happening at one is being called.  Then I hear one of the nurses say, we are short staffed so if you don't have an appointment its going to be at least an hour wait.   GREAT!   So the guy next to me and I start talking.....we know people in common so its nice and passes the time.   Then a friend of his comes in.....he sits down with us and says....'did you know you can make apointments on line for blood tests now????? I realize that the only people being called have apointments and they are short staffed, so, the rest of us are being 'squeezed' in when there is time.....well that was it for me.  It is now 9:00 a.m. and no one who was here when I came in has been served yet.   I got up, asked for my paperwork back....left and went for a coffee.

When I got home I went online and made an apointment for tomorrow at 8:10 a.m.   Now I can eat till 8:10 this evening....because I have an alotted time........

Moral of the story, never think that some things will always remain the same.....even blood tests have moved into the 21st century......and now it doesn't matter how early you get there....the playing field has been leveled....old or not we all can make apointments.....HERE WE GO AGAIN!!!!!

Thursday, June 7, 2012

Sleepless nights.....painful dreams!

Life continues to surprise and sometimes just confuse me.   I have not been feeling myself lately, although I must say I don't know what that exactly means.   I don't feel like anyone else either.

 I haven't been sleeping very well, and when I do finally fall asleep, I have had the most bizarre dreams.   Bizarre in a couple of ways.    One, they are so real I am not sure if I am a sleep or not, and secondly,  when I wake I can remember everything that I dreamed  and I feel exhausted.   There was a time when I didn't remember my dreams, and it is times like this that I wish I could go back to that.   Part of the problem is that I have also been in a lot of pain lately.   I am not sure why, or what the pain is caused by, but it seems to get worse at night and has taken over my whole body and entered my dream world.....even sleep doesn't bring relief.

The other night I had such a terrible night when I was actually awake with pain, but then even falling asleep it seemed the pain became part of my dream. In the dream   I was in intense agony and  couldn't find anywhere to lie down.   There were all these people who also were not well but there were no beds left for me.   I spent the time leaning against a wall, trying to be stoic but feeling like I was going to fall over.   When I woke up, the pain was real but I was lying down in bed thank goodness:)......this seemed to last for about three days and then finally last night I got a decent sleep.

I don't understand these times, and I must admit I have no idea if it is the cancer or just the growing old that causes such night pain.   I have heard other people complain about having difficulty sleeping and being uncomfortable at night, but I am sure they are much older than me.    Or, I am in denial about how old I really am.

It is a funny situation to be in when you have a long term illness.   There comes a time when you can no longer decide whether the things going on with your body are actually normal growing old occurrences, or if the illness is the culprit.   I have to laugh sometimes because I am sure that some of what I feel day to day is just the getting old part.     Eleven years ago, almost to the day, I never would have thought that I would be complaining about growing old.    Although I must say, if this is what getting old is all about, who ever coined the phrase "the golden years" obviously never got there!!!!!!

So here's to growing old and lousy sleepless nights.   I have to admit the alternative sucks so I will just content myself with the fact that if I am feeling pain, whether asleep or awake, at least it means that I am still 'on this side of the sun'........not a bad thing at all!!!!!!!