Monthly Archives: March 2014

Prostate Cancer – The Real Story

When you are diagnosed with a fatal disease, you may ask: “How is that going to feel?” “What will that look like?” “Will it hurt?”
I am going to tell you about Prostate Cancer now, so if you don’t want to – or are not ready to hear the truth about this disease, then don’t read on…
My husband, Jim, had advanced metastatic prostate cancer when it was first discovered. That means that the prostate cells had emmigrated to his spine, hips, collarbones and ribs from his prostate gland located in his lower abdomen. His particular cells liked the taste of bones, I guess. Other men may have the cells migrate through the lymph system and that is not good either. Jim had a PSA of 372 when his cancer was discovered.
Be careful out there, people, that the doctor doesn’t keep telling you that you have prostatitis. Insist on a biopsy if you have more than a zero on your PSA. Screw the people who discount the PSA – Jim would still be here today if we had advocated for ourselves more strongly. It is easy to listen to good news from the doctor and walk away thinking you are OK. Do not be lulled into complacency – get an accurate diagnosis!
Jim’s prostate cells in his bones grew larger – they did not make the bones weak so that they collapsed (although, I guess this is one way the cells react), instead they bulged out and interfered with muscles, organs and nerves in the various locations of his body.
He went deaf in his one ear because a “met” (metastatic tumour) had grown into his ear canal. He felt aching pains in his upper chest, upper back and what felt like “growing pains” in his thighs. He had always had trouble with his lower back so this was an especially weak area and finally one of the mets grew into his spinal cord above his shoulder blades and he became paralyzed from the waist down for the last three months of his life.
Of course, mets can grow anywhere – in your eye sockets so you go blind, in your organs so that you lose function in many areas including digestion and circulation. Mets can grow slowly as Jim’s did or change overnight as we heard from others who had travelled the prostate route. This disease is very different for each man affected.
We were lucky in some respects. We were asked about lack of continence, swelling, sleep disorders, nausea, headache – so many things – and we realized that at least there were some symptoms we had not had to face.
I have been asked by men what it was like for us and I have been honest as to how we saw the problem and how we dealt with it. I think that we held onto the hope that there would be a cure just around the corner and we would somehow be able to extend Jim’s life long enough to benefit from the leading edge research. That made us take advantage of all that the Canadian system had to offer. We started with hormone therapy, then four rounds of chemo, then radiation. Each had it’s side affects but it was not until the last two years that there was a change in our quality of life. Each time we started a new therapy, Jim would feel better and we knew we were killing those little bastards. As the renegade cells became immune to each therapy, we would, once again be engulfed in pain, confusion, self-blame and sadness.
I am glad we did each therapy. I think it gave us about two years of normal existence. Some men refuse treatment thinking that the side affects will spoil what time they have left. Each man must make that decision for himself.

I will add this note to my description of the symptoms of Prostate Cancer….

Ending the Journey by Choice
Six months before Jim died, we put our 15 year old beautiful chocolate lab to sleep. We gathered around our old friend and stayed with her as she quietly closed her eyes and laid her head in my hands. She was among friends and not in pain. It was a peaceful passing for her and for us.
In contrast, Jim endured six months of huge pain and for the most part really wanted to continue – pain and all. He did as much as he could for himself and enjoyed the summer flowers, his house, my cooking and his much cherished movie collection. He was resolved to do what he could when he could.
I can’t help but think, though, on that last day when we knew there would be no more days, why we could not have made the choice to gather and allow him to simply fall asleep, as our sweet dog had been able to do, quietly without struggling for breath and without his family watching his body back away slowly over many hours from warm life to cold death.
Although, very controversial, we need to get our heads out of the sand and approach our deaths as a reality of life. Are we ready to make a decision that will spare our bodies the agony of a slow wasting away of our faculties and our families the torture of watching us struggle to survive in a place we can no longer occupy in a full and reasonable way? I am not talking about days or even weeks here – I am talking about that last 24-36 hours of unconscious semi-life. Impossible to even think about for the most part – I know!

Losing Again!

Ok, so I am a spoiled widow. I have been able to purchase a second home near my child and grandchildren and still hang on to this one – built twenty years ago by my husband and I.  Admittedly , everytime I look around, I remember the musings, the planning and the conversations that went into every inch. It is a beautiful house and I love it.
My new house is plain by comparison, but it is also a happier place since it is all new with no musings from the past to threaten my day. The fact that my daughter and granddaughters drop by all the time is also reason to rejoice in each day. I get to share my life, my time, with people who love me.
For those of you who follow this blog, you know that the last major project that my husband and I worked on was the building of a two seater airplane – an RV7. The last five years of our life together was wrapped up in this project and the plane turned out great. It was a true masterpiece.
I sold it, shortly after Jim died, to a pilot who lived close by, yet I did not go to visit the plane even though it was just down the road. It hurt too much to see the hopes and dreams this thing represented to Jim and I  disappear with his diagnosis of cancer.
The new owner recently sold the plane to a man from Scotland and it is, right now, halfway across the Atlantic in a crate.
When I learned this, I cried……really cried….
Perhaps it was that I needed to see it just one more time…
Perhaps it was knowing that one more  thing in my life and my memory is now forever lost to me…gone
Perhaps it was  the surprising admission that this structure, this aircraft, is a part of me, of my life…
Perhaps it was the realization that my life is becoming a series of photos, of videos – two-dimensional …

The purchaser from Scotland said it was the best plane he had seen. Wouldn’t Jim have been proud?
He said he would keep the same call sign – Jim’s initials – JRE – Juliet, Romeo, Echo. Wouldn’t Jim have been proud?
Yes, proud but not surprised – that would be Jim’s final comment on this chapter of our collective lives – proud but not surprised.  He always knew we did things the right way.  That was just the way we lived…

Yes, I was feeling lost once again in the developments of the world around me – out of my control – losing once again on my trek to  a new understanding of who I am and what I want out of my life.  Can I climb out of this hole for good?

Time will tell.

Right now, making some great gains but still losing after eighteen months.

 

The Movies Start With “Sad”

It has only been since I have been bereaved, left alone, witnessed tragedy, and identified myself as a hapless helpless victim that I have begun to watch movies differently.
Do you know that all movies begin with a problem? A disease is threatening the world, a wicked sorcerer is forming an army to attack innocent victims, a child tries to succeed in a nasty neighbourhood after the death of his whole family.
They are extreme for sure, but, in the end, they identify grief, loss, recovery, self-awareness and they provide encouragement to the viewer to continue to try and perhaps achieve happiness.

I just watched “The Fellowship of the Ring, the Return of the King”. I did not realize it before, but in one of the final scenes, our hero, Frodo, is taken away to what is- in essence- heaven, and he has to leave his good friend Sam.
Sam continues on with his life, without his beloved Frodo, and there is a narrative as if Frodo is writing him a letter. You hear Frodo’s voice saying that Sam cannot continue his life torn in two, but that he has to go on as a whole in himself. Isn’t that a gas?!! That’s what I’ve been telling myself for the last year and I still don’t have it down.
I’m sure the significance of this little paragraph in the movie is dismissed by people who have not lost a life partner. I don’t think that the grief Sam was experiencing is within the grasp of people who have not had to deal with it on a personal level.
Frodo, himself, earlier in the movie reflected on putting the threads of his life back together after his adventure and he admitted that you just can’t go back. Whoever wrote this stuff has had some experience with loss and their words ring true.

Thank you Frodo for giving me a new mantra: I will try not to be torn in two. I will leave the threads of the past to dangle and I will not attempt to go back, but concentrate on moving on – I will do this next week…..

Shrinking Once Again – But Just a Little

It is March 24 and I ponder the blooming spring amidst 3 feet of still-frozen snow. Two years ago, Jim and I were patting ourselves on the backs for buying a motorcycle trailer. He and our sons would have lots of fun trailering their motorcycles all over Ontario – doing the father and son thing – the “man thing” together. He was limping a little on that “still weak left leg”, but stronger than he had been. The radiation on his lower back seemed to be the ticket to shrink those cancer cells in his hips and spine. Now he could do something with his summer – something active, something that meant he was still here and still alive.

Jim always was good at setting our next goal as a family and I was always a willing follower. He certainly did more exciting things than I could ever do and I got lots of laughs and joy just from watching him do his thing. I did not watch hockey, but I watched him watch hockey. I would not ride the bikes or even accompany him and the boys on their new adventure, but I would watch him think it through and prepare and I would listen attentively to his wonderful stories when he got back. I know that sounds really lame – I must be the dullest person on earth.

Now, two years into “alone” I wonder what to do with myself as I once again seem to be dwelling on the unreal reality of his absence. Once again, I come to the abrupt honesty that he is gone and I am alone. Once again, I realize that being the survivor is not necessarily a good thing.

I am sure that Jim saw me as the lucky one when he knew he was dying,  and maybe I did too – but not anymore – there is no luck here – there is no joy here and there is an unreal sense that what happened really could not have happened. I know better, but I cannot seem to actually feel better.

I can advise you, if you also are bereaved,  to get involved with your kids and get a pet. I can tell you to wrap yourself in the love of your family. I can witness the fact that being busy and being creative in ways you have always enjoyed can be great distractions, but I cannot identify the exact recipe for grief relief . By that I mean really genuine – deep down honest grief relief. There does not seem to be a formula or a magic potion or activity that gets you free from the you that you used to be – that let’s you just “be” in the present and work from there.

I admit that moving away from our home and into the lives of my grandkids has given me a new lease on life. It is only in going back to that home now, having been away a number of months, that I am beginning to renig on my self-promise to start over. I do not know how those hallowed walls of home will treat me: how those beautiful family memories everywhere will tug at my heart .  I am already shrinking back into grief a little just contemplating the trip home.

Is it still home for me now? I will need to think about that when I get there.

Will I stop shrinking back into the past? into grief? I will let you know………

Starting Over – Really!

In the sixty three years of my life, one of the foremost aspects of my existence was that I was organized. Boy was I! I knew where I would be and what I would be doing months and years ahead.
Yes, I was secure in the knowledge of who I was and where I was going every day in every way. Food, meals, cleaning, working, trips – they were all in sync all the time. I would wake in the morning with the knowledge of where I would be – maybe even what I would be feeling or thinking that day at any given moment!
It has been a year and a half since the death of my husband. I have changed a lot – mostly in my approach to the world and everyone in it. On the brink of collapse and depression, I have lurched first in one direction and then the other. Self-destruction and self-elation have both been huge players in my existence during this time. I determined that I died too, when he died. That person I was, is no longer.
This last year has set me on my keester in many ways.
Some days, I don’t know what day it is and I don’t care.
Some days, I get nothing done in any way, and I don’t care.
Some days, I make no plans and guess what? I don’t care.
After all, who would know? After all, who would care?
I had to change all of this – as my husband said one day as he was deteriorating into a weakened state: “I’m going downhill fast”. Yes, I was going downhill too – and unlike my poor husband, I didn’t have to – I had a choice – so I made a decision…
I bought a house – away from my old one and close to a child of mine who had children too – wonderful children as all of my grandkids are…
I now don’t walk on the deck that he built and where he cried openly on the last day of his life from his wheelchair – knowing that this wonderful structure he built would no longer be a family centrepiece with him in the middle of raucous family get togethers. That realization – that moment in time – that great sad moment – will forever haunt me – and every time I set foot on that beautiful deck – his deck – I remember it and I weep too.
There are many moments like this one in that home that was our castle. There are also many glorious moments, but they only serve as a foil to what happens there now – nothing.
Sure, I tried to make the house mine and mine alone. I redecorated and changed up the furnishing and the colours. I attempted to revive the homestead – our dream home – into a single entity that identified who I was, but I discovered that I really don’t know right now. I have never existed alone, by myself, independent of dependents.
I don’t like it.
So, I changed it.
Now, in my new location, I am seeing kids on and off the school bus and baking bread and cookies for people who will accept them and smile.
I need to be needed. I need to be a real part of my family.
Yes, the new house is an experiment, but so far, I am living more than I have since dying.
I think this may be what it feels like to start over – REALLY!