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!

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.
 

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.

HANDS

Full confession... this was written for the writer's circle part of my ELA class this autumn.  Just handed in that assignment last weekend, so now I want to share...

My great-aunt Helena never thought she would live into old age when they hauled her away to coal mines in Siberia.  Her hands dug coal from below the earth’s surface when she was 15. 

My great grandfather Peter built a house with his hands when he was in his 70s, having been allowed to enter Canada as a DP in 1951. He built a house when he was 75.  From scratch.  That's quite the retirement plan!

My great grandmother Margarete was a bone setter.  Her hands could change something in a body and make it whole.  She cured a boy with two club feet when she was a young woman.  In the early 1900s, it would have been a death sentence not to walk.

My grandfather Johannes made objects with his hands.  We still have a rolling pin he made.  A tin cup. Tools. This is a gift and his skill ensured their survival.  In 2012, not many people know how to make what they need to survive.

My father Peter’s hands were huge.  They certainly struck fear into me when he used them to spank.  They could fix vehicles (his profession), build anything (two houses, several decks, sheds, garages, you name it).  If he had been given a chance at education instead of being pulled out of school he could have healed people.  He had a gift with those hands.

My mother Susanna’s hands are gnarled with arthritis.  She has big hands too. They made, they make.  They write. They still do what she needs them to do, but sometimes they drop things. Who would have thought my mother would become crippled with arthritis?  She was eternally youthful, energetic, focused on helping others. She makes beauty in our family with her creations and manages history with her words. She is a memory keeper.

 

My husband Tom is a potter.  A ceramic artist.  His hands make beautiful functional clay objects.  He wants to be doing this into his old age, but right now he is dealing with stage 4 cancer that has metastasized to his bones.  He has the muscle memory of making ceramics and when he works at his wheel, his hands know what to do.

My hands, Brigitte’s hands, are practical and real. As a mother, as a woman, as a student, my hands are important.  I use them to hold, draw closer, make food, clean our home, make and mend clothes, explain activities and actions, and to guide my young. My hands can love; my hands can harm. My hands can hold a steering wheel, a needle, a pen, a wooden spoon, touch a computer keyboard and piano keys. My hands are powerful. 

My daughter Nicole’s hands don’t always do what she wants them to do. She struggles with printing.  She struggled with tying shoe laces.  Those hands finally figured it out. (Her brain figured it out.)  They can print; they can draw. Shoe laces are no longer a major challenge. Those hands are small and sweet, just like grandmother Sadie’s, who used her hands to heal and to apply red lipstick.  She was a nurse, a career woman when  most women worked in the home.

My sons, Kai and Gabriel, have hands that are capable of doing almost anything.  Piano, violin, pens and pencils, computers, bikes, drawing, writing, making, fixing, creating.  Gifts from the past into the future.  How blessed they are.  Use your hands for the good, I say.

Who bestows these blessings?  Who bestows the challenges? Do we have to own it, say it, thank for it, curse for it?  Who knows what we will get?  Our hands. What they can do.  What they will do.

Sexy Cancer Campaigns -- Sexy Prostate Cancer Campaigns?

I listened to The Current on my way to work yesterday, and wondered what it would be like if prostate, or testicular, cancer campaigns were sexualized the way the breast cancer campaigns have been.  The big question was if the campaigns are saving lives or saving breasts.  I listened to the story with a mindset focused on Tom, who is dealing with metastasized prostate cancer.  I wonder what would happen if similar tactics would be applied to cancers that have a more male focus -- such as prostate or testicular cancer.  It would be great to raise awareness -- no one should be ashamed of the kind of cancer they have when they start to work toward regaining health and getting rid of the cancer.  

Would a similar approach for the more male focused cancers resonate (or "swing", or "stand up erectly", if I can put it where it is) with men and their partners?  The sexy breast cancer campaigns include voice-overs by men talking about breasts and photos of attractive female bodies, focused on female breasts.  We live in a society that celebrates and reveres female breasts but doesn't celebrate prostates, testicles or penises as openly.  ... or at all.... The Movember movement has created a vehicle to raise awareness, raise funds, and create new ways to think about prostate cancer and mental health. And we get to see a lot of men with more hair on their faces than usual... at least until they have to take the anti-androgen drugs that are the first line of defense against the spread of prostate cancer.  Then one of the side effects is hair loss... oh well, that sounds bleak. 

Tom needs to talk about his particular "ish" (as he calls them), although not all the time, and he has found a local support group through CancerCare Manitoba.  It's more than important to get all the issues out into the open.  We could save lives that way.  Any way we can help people feel less embarrassed about any cancer that has links to our bodily functions is good.  I think that getting it out there will make people feel more like they still belong to a world that celebrates sexuality.  As adults that's an important part of our being.  People might feel neutered (in the words of the prostate literature), or less feminine, because of things done to remove cancers; we all want to feel sexy and real and engaged.  Healthy.  And alive.

Giving Thanks

I am thinking about why I should give thanks, given the season we enter.    

This has been a miserable/grumpy week for me, if I can be so personal.  This is how it felt: There is nothing that happened in the last while that is about my life, about me, or is helping me progress to something I want.  There... it's out.  And it's completely selfish. I spend my time driving people from here to there.  I wait while they do things. I slog away at homework for my courses. The second I enter the house, there is a demand.  The dog follows me around, waiting for more love.  And don't get me started on work.  Every time I think things have progressed to a new stage, or we work on new ideas, there's a roadblock.

And then I took a step sideways -- this is life.  The life that I wanted.  The life that I got.  And this life is rich enough that there are the demands, there are the requests, there is the dynamic of ongoing relationships, and yes, there's the dog who is loyal, faithful, and demanding. The three kids continue to progress in their own areas -- they are making excellent choices, they are supported by teachers and schools who care about them, they challenge things where they need to be challenged, and they love us right back.

Someone in Cancer Care Manitoba listened to Tom and took his case to a group meeting where they discussed what to do about the pain in his acetabulum (big word for pelvic girdle).  They see this situation as urgent, given that it has been eroded by cancer cells, causes him serious pain, and could degenerate enough to be dangerous for his physical stability.  So they are recommending a hip replacement.  This is a big step.  But they have to do it first before they can radiate the area, as once radiation takes place, the bone is effectively killed.  And then you can't do the replacement. The fact that this physician listened is something we can be thankful for.  

We have plans to drive to our cottage to enjoy it for one last weekend with running water -- the water gets turned off some time after the Thanksgiving weekend.  And then it's a bit less fun, even though we go.  Thanks for that little cottage in the bush.  It's beautiful, and it's cosy, and it's where the kids have grown up, from babyhood onwards.  What a wonderful escape for us.

It's all about my perspective.  So I will take this with me as I go through this day.  I give thanks for the richness of my life.

 

No Vacuuming for the foreseeable future...

Well, once again Tom has an excuse to not vacuum.  This has been a long-standing "ish' between us, ranging from not so friendly (on my part, because I HATE vacuuming) to more jovial as I started to hand the job off to the kids.  Ha.  There you have it.  Family dynamics -- not always pretty, but dynamic indeed!

This is, once again, an update on Tom's cancer situation.  In the last two weeks we've met with specialists at Cancer Care Manitoba three times, and Tom has been for an injection designed to shut down testosterone production. This injection takes place through the stomach, placing a slow-release pea-sized pellet under the skin.  The person responsible for the bigger case is intrigued by the kind of cancer cells that have gone into the pelvic girdle.  Apparently they aren't "typical" for prostate cancer cells so there will be additional screening.  Also, typically, radiation might be used to deal with bone metastases, but the radiation oncologist wanted to make sure the area wasn't too weakened.  Turns out it is, and thanks to her and her listening skills, she has discussed this issue with orthopedic surgeons who have agreed that something needs to be done to stabilize the area.

So Tom now needs to have more surgery to resolve the weakening of the bone in that area.  What he's most worried about is the hospital food:  "Cancer had moved over to my pelvis and right hip.  I had been saying since January that my hip was bothering me. Turns out that I have a soft spot on my pelvis.
They want to put a couple of pins in there before they start radiation.
This means another week in the hospital. Concordia this time [more hospital food].  I am not allowed to do any heavy lifting, so I guess vacuuming is OUT!"

He's gone from bad news (aggressive, high density (I think was the word) cancer) to more reasonable news (we can give you drugs to slow down the cancer's growth, and by all appearances, according to the latest PSA test, it has), to using a cane (feels justified given that the bone is so weak), which is a "sexy" (in the words of the kids in our house), bright cane, to having someone listen to him/us talking about that pain in his pelvis, to hearing about more surgery.  And the good news is... no more vacuuming!