Thursday, April 30, 2015

From Tears to Laughter :)

Some times my thoughts and feelings are dark and scary and writing is the only way I can put them out there honestly.  I have that sort of personality that makes me smile when I am with people.   Generally, I am truly happy and sometimes, rarely, I do it and hide my true feelings of the moment.   But the main thing is feelings are fleeting.   Often they are in the moment and then gone and the next feeling comes along.    We can make feelings continue by replaying the story in our heads but if left to their own devices they usually move along leaving room for another feeling to fill the void.

Yesterday was an especially difficult day but with the help of a wonderful daughter, a gorgeous granddaughter and friends that understand me, I made it through barely scathed and was able to start again today.   Now today was a little slow at getting to be better.......but sometimes the God of surprises has a very interesting way of waking up the funny side of life.   God can have the dark and ominous humour that I am familiar with and other times God allows the silly side of life to make you lighten up.

I decided to take a shower.   Not necessarily a fun idea with all that is now involved and so the decision to do this often takes awhile to percolate in my mind and then find its way into the body to get me moving.     So, off I trudge to the basement, down 17 stairs with my cane, organize everything with in reach, the towels, soap, shampoo and of course the lift for my leg.    Of course my menagerie of animals must also follow me into the bathroom.  So I am dodging and stepping, yelling "move" and "get out" as I arrange my stuff.

Then sitting down, taking the brace off, lifting the leg into the tub and closing the curtain.....or I must say attempting to close the curtain.    The reason for this is that I have a cat that is walking behind me on my shower chair and then along the tub and a dog who is pushing her head into the shower and knocking everything over.  Squidjet is just watching all this from a distance!  So, first I start to get frustrated and then decide to just spray them all.   Well, they loved it.   They thought this was a great game and Maize (the dog) kept coming back and sticking her nose in and trying to catch the water out of the wand, and Curia was batting the spray and Maize's nose having a grand time.    Well, then I could feel this laughter just start to gurgle up from deep within me and I too began to enjoy the fun.     Needless to say we were all soaked by the end, shower taken, hair washed and didn't even mind the extra effort involved.    An aside, I had to be really careful getting out and dressed because there was quite a mess on the outside of the shower too.   I know, I know, I have to be careful!   Lighten up and enjoy the visual!!!!!   

Curia (the cat) and Maize (the dog) BFF's

So I have gone from tears to laughter in the last 24 hours.    How amazing is that!    I guess living in the moment means the good and the bad, just as long as you recognize the good as much as you do the bad.    Imagine if I had decided that taking a shower was just too much work I would have missed all the laughter.    Many people thought Maize would be too much for me after surgery, including myself.   There were times when I thought "what was I thinking getting such a big dog".   Even thought I would have to give her up.   Well, she has been a blessing in my life during this time for many reasons, and one of them is the silliness a puppy brings into a household.    As I write this she is curled up on the day bed fast asleep from all the fun we had a little while ago.    The cats well they have tried to kill me many times going down the stairs but that cane has found its place enough that now they just 'get out of the way'.   So we have all found our space in this little apartment and today we all had a little bit of silly fun.

So God has taken me from the despair of yesterday to the hope of today.....for that I am truly thankful.    God has also shown me that the ups and downs of life have always been there just at this time they are more obvious.   Hopefully I will remember that the next time I am feeling blue.

Wednesday, April 29, 2015

Realities sinking in!

So, the sun is shining, the birds are singing and you can actually wander outside with a light coat, or  no coat at all.   It is the time of year we in the North look forward to all winter.   The time we can finally put all the woollies away and venture out into the beautiful welcoming weather.

I was looking forward to this too.   I didn't get the full weight of our winter as I spent the majority of it inside a hospital.   I heard the reports though on a daily basis of the bitter cold and the dumps of snow.   I did experience one of those days when they transferred me to St. was -20 or more and for me it felt refreshing after so long in hot dry artificial air. 

Unfortunately, it is not having the affect that I had expected.   I am not more joyous.   I am not excited about the warmth.  I am not happy that the world is waking up from winter and calling us all forth.    I am sad.   I am angry.   I am disappointed.   I am all kinds of negative things.   This weather is simply exaggerating all the things I can't do.   This weather is pointing out to me that I can't go for the walks I loved, I can't go for the drives I loved.   I can't even play with the dog in the field across from my place.   It makes me recognize my limitations.   I hate it.  I want to crawl into a ball and just go to sleep.  

I know I should be grateful.   I hate the word 'should' because it implies shame.   But that's how I feel.   I have survived a surgery and the ultimate purpose of it was successful but I am still sorry for myself.    I keep thinking that eventually I will get better.   Eventually, the limitations will go away and I will be strong and independent like I use to be.  Then, the reality of this is it!!!!    I have already essentially arrived at where I am suppose to be.   I may get stronger.   My endurance may get better but nothing is going to change.  

I so looked forward to the opening of my trailer at this time last year.   I couldn't wait to go out and sit on the deck and just be.   This year I don't even want to go out.   It again will only serve to show me how dependent I have become.   How incapable of doing the simple things out there that I loved to do.   I mean I loved cutting the grass, raking, walking to the store, gathering sticks for the fire.   I can't do any of those things now.   Even emptying the tanks is beyond my capabilities!

I am falling into a pit of my own making and I don't even want to crawl out.   The only time I feel any joy or happiness any more is when I am watching my granddaughter playing.   Then I am transported to a wonderful place and can for the moment forget all the other stuff.   Even though I can't get down on the ground, or chase after her I feel whole.   She seems to somehow intuitively know that Grandma needs her to come  and she does....with toys, arms open to be lifted and sits on my lap.   It is at those times that I feel like a complete being.

I guess I am still in the learning stage.   I have yet to move to the accepting stage........and it may take a very long time.   

Wednesday, April 22, 2015


This is going to be a difficult post to write.   I am actually going against my natural grain and writing about an very agonizing moment.    Usually I like to keep those private so everyone thinks that I am doing well, being that 'warrior', really courageous and all those other positive adjectives people use when they see me. 

Yesterday, began very uplifting and fun, visiting  old neighbours who I hadn't seen in ages and introducing them to my granddaughter.    It was great, especially since they had known my daughter when she was just a child and so it was awesome for them to see the next generation.   One thing I found neat was she kept saying "she looks so familiar, but that is because she looks like you guys"   It's true, if she ever got lost you could put a postage stamp on her and the mail person would know exactly who she belonged to.

Unfortunately my day did not continue in that vein.    I had an appointment with one of the surgeons...the bone man as my Mom would say.   I wanted to see him and hear what he had to say about the surgery and maybe answer a few 'bone' questions that I knew my oncologist wouldn't be able to.   Well, as in all teaching hospitals you have to meet the resident or student doctor first.   I am used to them not really have a full grasp on my case, especially since it is a very unique one, but I wish they would at least familiarize  themselves to some degree before coming in the room.   They never do and their questions  are very telling.   So in she comes and first question :  

Have you ever been here before....


Have you met with Dr....    before? Then before I answer she looked at my brace and said....did you have that before the surgery...problem with your knee?

No, this is a result of the surgery.   My leg is paralyzed from the surgery. 

Goes to computer looks at information and then states....You wanted to know what type of cancer you have?    


When you were operated on you didn't know what type of cancer?   Isn't that why you are here?

No, am I going to see Dr....?   and Yes I did know the type of cancer, I have had it for 14 years.

If you want to you can see him.........(why else would I have come? inside voice of course) 

Then the zinger:   Well the pathology shows no malignancy.   (totally bent over the computer not even looking at me)

WHAT!  (I go pale and almost pass out....but she doesn't know bc she isn't looking )

It says that the tissue samples they took....they took an awful lot had small bowel extraction too right?....well it says 'no malignancy '......(she turns to me smiling thinking she is giving me wonderful news and I am going to be so happy)

I am stunned and angry:   Are you saying that I have lost the use of my right leg and there was no cancer?    They put me through all this and now they are saying there was no cancer in the bone?  (should probably read that as all caps bc I am sure it wasn't said in a quiet voice )

At this point I have almost had an anxiety heart is pounding, my brow is sweating and my hands are shaking.    Have I really gone through this hell to find out that they were wrong.   You see, they are never a 100% sure till they go in and have the pathology done, so there is always that very small chance they were wrong.   I know that but it has never happened to me.   My whole world was starting to collapse around me.....I couldn't believe the physical reaction I was having to this news.

I said, are you sure you are not  reading the pathology of the margins they took and not the ones of the actual tumour?    I mean they removed the bone and nerves because of a it shows it wasn't cancerous.....are you sure?

She begins to back pedal and says "maybe we should talk to the doctor, this is not a very common situation and I am not sure what it may mean."    She then gets up rather quickly and goes to get the doctor. (the same one I was going to see 'only if I wanted to')  Meanwhile, I am literally shaking in my seat, even though I know at some level she is reading the report would be a nightmare if it is true.  Now, don't get me wrong, not having cancer is a GOOD thing, but having lost what I did is not the way I want to find out!

The doctor comes in and it is obvious she has told him her 'faux pas'.    He begins the conversation saying:   "negative malignancy is what I wanted to see....those were the samples within the margin that I worked....this is a good thing".  (Patting me on the shoulder and looking directly at me)     I deflated like a balloon and almost burst into tears.   He was aware and was very supportive and apologetic.   He is a very nice man!!!!   Needs to train his residents better though !  So, I am back to having cancer....all is normal again lol.

Then he told me about the surgery.   Although I had heard about it from my oncologist, the resident who assisted, the nurses on the floor, for some reason his account was the most difficult to receive.   I think is was his humility.   He said it was a very difficult surgery, and exhaustive.   He said it so sincerely and with such conviction it actually surprised me and I told him I thought it had been 'without surprises' meaning great.   He said that was because they had planned very well and had even planned that morning with the radiologist.   But, he said it was a long, very hard surgery especially for my oncologist.   He felt that his part was minor in comparison.   He said:  

My part was very small in comparison to the whole surgery... but
I think your surgeon was a little surprised when I arrived in the OR with my saw!    You see that is how we cut bone....with a motorized saw.   I think he was a little thrown off by that (and then he laughed).   Not a tool he is used to seeing in the OR....LOL "

I imagine he would be!

He then went on to say that my oncologist agonized over cutting the femoral nerve, knowing it would leave me paralyzed on the right.   He said it was very difficult for him to come to that decision even seeking his opinion on the was decided that they needed to get the best margins possible and that was only going to happen if they severed the nerve.    The tumour had grown right through the nerve.   The  point of the surgery was to give me the best possible chance and results.   Not always an easy call.    I understood my oncologist state of mind......

I have agonized over this consequence too!   Wondering if perhaps I had gone too far in trying to stay ahead of the cancer.   So when he used the word 'agonized' it resonated with me.   It also made me realize that I was not the only one dealing with this surgery at a visceral level.    It was a team effort all the way....from the beginning to the end....even the negative had affects beyond me.   I had people in my court who were as determined and with mixed emotions just as \I was.....I no longer felt alone in all this.

Now, I know how extensive and huge this surgery was.    I have spent the last few months trying to just get over it and move on.    I don't feel like that anymore.   I feel like I can actually take a step back and realize that I will be in the healing mode for some time and its ok.    My worth is not dependent upon how fast I can get back to some kind of normal.    I like to be able to overcome things quickly and move on......not this time.   I am going to rest a bit longer, be a little slower for awhile more, and not worry about  having to make huge leaps and bounds to prove I can overcome this particular adversity.   There is a freedom in that, but also a surrender.    I am not good at surrendering but I am determined to learn.   If the surgeons are still dealing with the surgery and its consequences who am I to look as if I have moved on.

This doctor looked at me with complete humility and said "it was a huge surgery Elizabeth, and it will take a very long time for you to get over it......if you actually ever will, your body has been changed forever because of it."

I think I needed to hear that and be given permission to NOT be a warrior, not strive to be the perfect patient, not be more than just human !

Friday, April 17, 2015

new Journey .... New way of being

It's been awhile but it's also been a difficult and trying time .  I am not good at writing when things are hard.   Maybe putting down in writing my sad feelings makes me more likely to have to face them.   I realize, this time, things may get better but not much is going to change .    I am grieving the loss of not only a limb but also a lifestyle..... Need to find a new equilibrium !

As someone who has found it easier to be solely independent ( not disappointed as much) it is hard to have to rely on others.   I have gotten better over the years but I always knew that it was a temporary situation .... A need for a limited time.    People are very good at being fully present for a period of time but as time goes on they tend to return to their own normal.  Take a death .. Everyone rallies around initially and holds the grieving person ... But eventually they disperse and the person who has most intimately experienced the death is often left to find their new way of being on  their own .  This is in no way a criticism , it is just that as humans we can only sustain our energy for so long and then must return to our daily life.  Although they feel for the person they are not as completely impacted in daily living by the loss .  

For myself this time ... I am permentately more dependent ... Not easy for a control freak:).  If I was rich I would just hire people and then I would be much more able to accept the help .   Not only would it benefit me but them as well.   Which brings me to another point.   How do I know that these people are not being benefited by helping me ? I don't for sure but down deep I know how I feel when I help others .   It makes me feel good , useful and more human.   So maybe the task I need to work on is believing that my friends and family really do want to help :).  Maybe I need to get out of the way atnd at least allow others to participate in my journey ..... At least for as long as they are able .   What a novel idea.     I am not great at accepting help but in many ways it is not a virtue ...  It's humbling to say the least and my pride often gets the best of me.

So,  my plan is to :  work on accepting my limitations ( ugh) ,  accept others help ,  ask for help,  and not feel I am imposing ..... I have been blessed with a multitude of amazing people in my life, including the most amazing daughter, perhaps it is time I appreciated where I Am At.... And stopped wishing I was somewhere else !

Will be more attentive to writing about this journey which is very different from all the others .   And just one more point..... I do appreciate  that they were successful in the surgery and that I am better in many ways .... But unfortunately that doesn't make this part any easier .... Two different things !