Tuesday, December 9, 2014

Lake Winnipeg

Lake Winnipeg - October Afternoon

An update from Tom...

Here's a letter Tom sent a few weeks ago to the staff members at his school, during their United Way campaign.  Some of you might want to be updated with regards to Tom's health.



Cancer Update
I was diagnosed with prostate cancer in September of 2011. I guess this means that I now have had cancer for three years. My cancer did not stay in my prostate. It metastasized to my right hip. I had no cartilage there. On April 4 of that year I could not get out of bed. Obviously I was not going to work. I was off work for one year and 3 months. I walked with a cane. I took a lot of pain killers. On November 21, 2011, I received a titanium hip. Cost-$50,000.00. It works great.

I live a life with cancer. I have stage four cancer. I will not be cured. I will just be able to maintain my cancer at the level it is now. Yesterday, my daughter Nicole asked me; “Dad, when will you be cured from cancer?” For her, everything is black and white without any subtleties. The answer for her is that I won’t be cured.

The Cancer Care building is the nicest, brightest, sunniest building that you would never want to enter.

I am there twice a week, sometimes three times a week.
I went there for chemotherapy, which I was dreading. They put you in a big blue lazyboy chair and drip chemicals into your arm. This is two and a half hours of my life I will never get back. I did this 10 times, every 21 days, since last May.
There is always a twenty minute wait for a chair. The chairs never get cold, as there is someone else waiting. They only shut down on Christmas day. They do not have enough chairs to handle all the cancer patients.
Once a month I go to the hematology lab for a blood test. It is on the main floor. You take a number. The previous time I was there, the nurse couldn’t find a vein, and just stuck the needle in and swung it around until he could find something. Really painful. I will not have him again. On Monday, I was there again. There was a small boy ahead of me. He cried and cried when they stuck the needle in. This was tough to take.
I am on prednisone. I have gained thirty pounds. I have a “moon face.” Please don’t call me moon boy when you see me.
My feet are swollen and my joints hurt. I can’t fit my winter boots. I can’t fit my clothes.
I can’t grow a mustache to save my life-no pun intended.
It costs $50,000.00 a year to treat one cancer patient.
One in seven people will get cancer.
Please donate to the United Way Campaign.
Thanks for reading.
Tom Roberts

The Kindness of Strangers

Recently I had an experience in the poplar bush of one of our local dog parks.  I went with daughter Nicole and our dog Kallista to the Parkerlands for a Saturday afternoon walk.  Nicole DID NOT want to join me on the walk and insisted I was forcing her into a bad experience equal only to other forced marches in the history and wastelands of the world.  I dramatize our moment, but we were not happy with each other, and she trudged along unwillingly behind me as Kallista bounded and danced in front of us.  A woman and her dog walked by and Nicole muttered that the person had given her a dirty look.  "What?", I said, thinking I hadn't heard correctly.  The woman had heard, but she ignored the comment.  "People always look at me like I'm weird", said my unhappy daughter. [As if the grumpy face and attitude wasn't a give-away...]  I think you can tell by now that I wasn't that happy with my daughter either.

I turned around to talk this out ... it's always my "go to" solution to talk things out, even though now I realize that sometimes my daughter just wants to feel mad.  Mad at me, mad at the world, and mad at whatever is making her mad.  "Nicole"... I said through my own gritted teeth: "You don't have to think that everyone is looking at you."  [And isn't that what most teenagers feel at some point? -- everyone IS looking at them...]  Obviously the mother of the mother/daughter pair wasn't that happy either...  

Another woman, who had walked by at this point, turned around, and with a loving smile commented that her name was Nicole as well, and wasn't it a beautiful name.  Didn't (my) Nicole love her name too?  That simple act of stopping and commenting on some obvious unhappiness stopped us both in our tracks.  She told us how she loved her name, and continued to engage directly with (my daughter) Nicole, commenting on the weather, the dogs who were sniffing each other, and on the qualities of the name they shared.  This compassionate act was thoughtful, and directed to engage with my teenager who struggles with social connection. It forced her out of the state of misery and made her connect to the empathy and love that flowed to her.  

I wondered then, and still think about why and how that happened.  Is she empathic somehow?  Is she trained to notice when people cannot engage directly with the world?  Others had gone by, ignoring the gloominess.  The two Nicoles focused on each other, and it was as if a healing touch had been given -- the bad mood of the day lightened, and the stagnant attitude that trapped us was blown away.  This simple act of compassion and direct contact made all the difference.  There was no need to stop and talk, and yet she did.  She saw and felt something and connected to it with meaning.  It reminded me that there are caring people who feel the weight that sometimes drags around with us.  We get used to that feeling, and don't want to change.  The kindness of a stranger took away that heavy attitude.  I offer my thanks to the kindness of a stranger who turned a grudging moment into one of reconnection.


A Eulogy for Summer

The dark days of late autumn (early winter) are now upon us.  All I want to do in the mornings is curl back into the warm nest of my bed, away from the cold Winnipeg mornings.  And did I say the mornings are dark?  A few weeks back, son Kai wrote this eulogy for his English class.

A Eulogy for Summer

 
When the snow melted away, and the remains of winter disappeared, summer grew. She grew slowly and carefully until she took over the world. How she did it? Cool in the morning and hot in the afternoon. 

Summer always sparked creativity in everyone she met. She encouraged everyone to get out on the street and meet new people. We had forgotten about them, as we shivered out the winter months. She got friends together, and then, people in groups. Summer made sure we got stuff done. She doused the earth with rain to wash away dirt and gravel. She made trees and food grow. Summer gave us warmth and light to build new houses and repair old roads. 

She took most of the world by storm. People fell in love with her. They left school, jobs, and the darkness of their homes. She encouraged them to travel far and wide and to explore places they’d never been. Families bonded and spent time on beaches. They camped and lived rough for awhile. Summer helped families stay up late and get more active. She made them get wet, muddy, she made them laugh and cry. 

Summer made the world happy for the couple months she was around. She warmed the earth and everyone she touched. I know that she warmed everyone’s souls.

I remember when summer came, racing to the cottage with my family to soak up the sun. Summer was always right there beside me. Even though summer was not one of my own, everyone in my family loved her. We loved living with her and she loved living with us. 

She was always the same; I would sit on the deck, and watch her wake up. She was still always half asleep and it took her awhile. She would sit with me until she was warm and ready for the day. We would pack a lunch, and go for a hike. Summer always came with us. She loved moving around, and when it got too hot, she provided us with shade. We would head to the beach in the cooler part of the evening. I know this was summer’s favourite part of the day, because she loved painting with light. She created lots of beautiful works of art across the sky. Dark blue here, purple and red there, she always left us amazed. 

Summer was taken from this world too soon. She had so much ahead of her in life. I always had a dream that summer would settle down. That she would find someone she loved to enjoy her life with. Summer leaves behind, friends, family, acquaintances and colleagues, all of whom loved her.    

I feel sad when I look ahead and see the bleak darkness of winter. But even though she is gone, I know she will live on in the memories of all of us. I will remember her warm touch and the light she gave the world and I know that she will never be forgotten. 



Thursday, October 10, 2013

My amazingly flawed life...

There has been a substantial flow of life going past me (us) in the 9 months since I last wrote an item on this blog.  Several people have asked (suggested) I keep the writing process alive, which I agree is a good thing to do.  I will say I have been blocked emotionally and have been unable to make public statements about the life I'm living...  Recently, though, I joined an on-line chat/support group through a BC-based medical program, which connects support and caregivers of people with cancer.  The participants are spread across Canada and we "meet" weekly to chat.  That's started me writing again.

In the last nine months, there has been private conversation, serious private concern, and more responsive caring from friends, old and new, tried and true, and people from the past and  the present.  Our circles are bigger than we think when the stuff hits the fan.  We just have to be ready to let people in.  Might not always be easy to share the things that we are feeling, because it seems so private, but the process of sharing is what cracks open the door.

Cancer is a full-time job for the person with cancer.  It is individualized and unique, which is why it's so hard to quell. The medical system does a pretty excellent job of working with the patients and finding new ways to circumvent the spread and stress of the big C.  Supporting someone with cancer is also a big job.  For me it didn't feel like I got a lot of support to be the supporter, but that was because I was wearing my blinders of resentment and sorrow.  The vortex of the stress was (and still is) demanding.  The workplace issues that are going on right now are immense and wearying.  The extra hours of work required during the busy times of summer meant I had no time to breathe, to be positive, and to be "on".  And then there are the three teenagers in the house.  All need time and attention and require my love and attention.

Several weeks ago the kids and I attended a presentation by Kim Phuc at the St. Boniface Cathedral.  She said something that spoke directly to me:  

Give yourself the permission to have a new dream!  

Sure enough -- the vision, the plans, and the dreams we have require regular maintenance.  If we think our bodies and minds need refreshing, I would like to suggest that we also need to refresh our dreams and visions for ourselves.  So it's flawed, so it isn't "perfect" the way the propaganda says it should be.  It's the life I'm living, and I have to live it. Kim didn't ask to have napalm dropped on her 9 year old body and then spend much time recovering and learning to live with the new "her".  She is a peaceful and positive role model who has come to this awareness as a way to move forward.

There's no way Tom asked to have the horrible fact of life of cancer in his life.  There's no way I asked for it to happen either, but I have to give myself the permission to make the switch in mindset, to incorporate what has happened and to deal with it gracefully.  I didn't ask for my workplace to become completely turned upside down, but that's what has happened.  My job is to keep things going for the students who are registered in our programs and that's what I keep doing.  My B.Ed. program is moving along, with a potential grad date of May, 2014, so that's a big part of the new dream.  Keep revising, changing, and moving the plan.  It's always ready for a shift.

So thanks to all the friends and people who have weighed in with positive contributions, thoughts, and hope and prayer.  It makes a difference!

Sunday, January 6, 2013

Helpless in the Face of Love

Yesterday at the dog park I walked just behind Tom and marvelled at the strength in his legs.  No limp.  Moving along.  I've always been a sucker for his butt, which today was covered by the parka, so I don't think I was just reacting to a physical sensation, but I felt overwhelmed by an attack of longing and love for the man.  What he's been through.  What he's had to deal with since the pain started in the pelvis.  His strength through two surgeries in five months.  His response to living a life when diagnosed with cancer.  Not always easy, but always ready to move forward.  And now that he is walking quite easily, and the titanium hip is doing its job, he is so much more mobile.  The oncologist also gave some excellent feedback -- the drug which is being used to shut down testosterone also appears to be doing its job -- his PSA level has dropped to .03.  His PSA level was always quite low, but this will be the new base line.  In the middle of January he will meet with the orthopedic surgeon to get the update on the hip, and two days later we'll meet with the radiation oncologist to hear her recommendations.

It got me to thinking.  I've been tired, somewhat low in spirits, and quite resentful of the emotional load I'm carrying.  I haven't been able to restore myself to my usual positive outlook.  However, Friday, when I got home from work, somewhat in shock (the two weeks off meant I barely thought about the "plant", as Tom likes to refer to his workplace), Kai grabbed me and hugged me.  Wow.  That's another attack of love.  This is a teenager who cares about his parent, who had to stagger in to work a full 3 days before the rest of them have to go back to school!  The University opens a few days before the rest of the school system, which isn't a bad thing -- it got me back to a state of what you might call normal.  Or pushing toward normal.

Last week my brother Rob showed up for a Winnipeg visit with meals he bought for us -- just because he wanted to do something to help.  Again I felt overwhelmed.  I keep thinking about how many wonderful things people have done for us in the last half year -- food, wine, cards, visits, gifts of many sorts, downloads, CDs of shows and movies, a subscription to the Winnipeg Free Press, a subscription to the New Yorker, beer, magazines, candies, phone calls, offers of help, advice, friendship, love. Our children have been positive, helpful, and willing to trouble-shoot when I was at my crankiest and most tired. They give me love every day.

It boils down to love, plain and simple.  I was down in the dumps in the week after Christmas -- broke down crying one evening just contemplating the myriad of stuff that's happened.  Today I think I can see this for what it is.  I have carried a lot on my shoulders in the last half year or more, without processing my feelings about the care and love family and friends have given to us. It sometimes feels hard to be the recipient of all this love.  Why do people care so much?  It isn't just about the stuff; it's about how our friends and family really care. And it's easy to divorce myself from the emotions of it all, because if I "give in", I feel like I could break down (like I did the other night). 
 
So this weekend I am helpless before all this love.  My emotional state, which is still fragile, feels like it is in some sort of recovery.  All because of a man in a pair of jeans, walking with me in the dog park.  It doesn't take much, does it? To my/our friends and loved ones, each and every action, prayer, thought, word means the difference between barely coping and feeling like it's coming together.  Thank you.
 

Monday, November 26, 2012

The Bionic Man

Or is it the bionic woman and the ten million dollar man?  Either way, the guy has a new hip, titanium this time. It's known as a total hip arthroplasty, which consists of replacing both the acetabulum and the femoral head.  It is titanium and was cemeted in, which is apparently more common in Europe than in Canada -- this method was chosen so that there would be a stronger adherence to the bone, which is somewhat deteriorated by lesions due to the movement of the cancer cells out of the prostate area.

As I described in the summer, Tom is more than hilarious when he's in recovery -- apparently morphine, or whichever derivative they use when patients come out of surgery, agrees with him.  No cares in the world... he was floating, or zooming, along the ceiling apparently, and it was more than fun.  And there was much laughter, AND he proposed to one of the nurses.  Blonde, he tells me, "Just a cougar from Transcona" -- but I wasn't there to witness it.  Sister wives, anyone?

He was up and walking, with a walker, the day after.  They've removed all the wires and tubes, and he's been diligent about getting around.  Got himself down to the Tim Horton's in the hospital the second day for a coffee, mostly to alleviate the boredom, the waiting.  Lots of hurry up and wait, he said. 

The first day he was in the waiting mode last week was Wednesday.  I took him to check in at Concordia Hospital, which has a strong Mennonite connection as it was started by Mennonite immigrants from Russia in 1928.  My mom (Susanna) worked there (in a different location) in the summer of 1950, when she was 15 -- she dusted, wiped down beds, set tables, and helped out in the kitchen.  Aunt Herta was working there as a nurse, and cousin Judy (Voth) Hack was born there but they would not let mom visit her new niece...   Tom was taken to St. Boniface hospital that afternoon for an embolization, which is a procedure that shuts down blood flow to a particular part of the body, in this case
a peri-acetabular metastasis.  The procedure went smoothly; Tom reported some pain when the catheter was removed from the vein, but the collagen plug was inserted successfully.  This is important because the surgery the next day included removal of the tumour as well as the hip replacement, and can minimize bleeding to the area.  And yes, the surgeon removed the tumour in the area, which was smaller than they thought.  So everything continues to move forward.


He'll be home either today or tomorrow, and we are looking forward to having him back.