Sunday, July 15, 2012

Contemplative

I think this is the longest period of time I've gone without writing a blog. I've been try to sort my scattered thoughts, trying to make sense of the news I've been given and I can't. I feel discombobulated. It all still feels surreal. I can't possible be dying. How can any of this be real?

And I feel like a robot because I'm not crying. Sure, I have these little crying spurts every once in a while, but after a few seconds they're done. I should be wailing against the world and the injustice of it all. But I can't seem to dredge them up from my emotional reservoirs. I feel like a freak.

I've also been sleeping A LOT. I don't think I've slept this much since those hearty party days back in unversity where noon was a common time to rise and shine. Of course, during those days, I'd stumble into bed around 4 a.m., not 8 or 9 p.m. The cancer must be taking a lot out of me. It must be sucking up such incredible energy reserves that I have little for anything else.

Although I have managed to make some memories over the past couple of days. On Friday, I went to my sister's and lounged in her pool for a good hour. It felt awesome to have cool water wash over my skin. I also got to visit with aunts, parents, my sister and brother-in-law and nephews during the very relaxing afternoon.

Yesterday, I made it to Port Franks (aka the spa). We went down to the beach and I managed to immerse myself in the lake that makes me so happy. I'm so glad we went to spend the afternoon at the beach and hang out with Diane and Pete.

Today I've had visitors, which always make me smile. It's wonderful to be loved by some awesome people. I am a very, very fortunate woman.

A few recent observations I thought I'd mention:
  • I managed two bowel movements over the past two days so I'm trying to eat small amounts of food again to see how I manage. A scrambled egg and a piece of toast comprised my lunch and half an English muffin with some brie cheese made a tasty supper. I am already getting sick of the dessert-like Boost and Ensure supplements so if I can eat real foods every once in a while, that would make me happy.
  • I feel slightly groggy/foggy/tired much of the time.
  • When I type on my BlackBerry or computer, I make far more mistakes than I used to. It's almost as if I'm dyslexic sometimes.
  • I speak, move and think much slower than I used to, as well. I'm also very precise like when you're slightly inebriated but don't want anyone to know it (but everyone does anyway). 
Perhaps some of these oddities can be written off on the Fentanyl patch I've been wearing since I've been home. Michael slapped one on me shortly after I walked in the door and I'm been sporting the slow-release pain medication patches since Wednesday.

I've also accomplished a couple of extra preparatory tasks since coming home from the hospital. On Thursday, Michael and I, with the help of our good friend, Jack, picked out a plot and grave stone. That adds one more check mark to our to do-list; something Michael doesn't have to do after I die.

We've also met with a spiritual counsellor to help plan part of my funeral. He'll be the person who will be the master of ceremonies, if you will, on the big day. I don't have a direct affilitation with a church so having this role filled has always been in the back of my mind, but the recent speeding up of timelines had me a little freaked out.

I'm also showing Michael how to do some of the tasks I always did, like paying bills, filing benefits, checking accounts online. Like any marriage, we divided up the tasks and ran with them. Now, sadly, he's going to have to learn to do them all one. That makes me feel very, very sad.

Thinking about all the experiences my kids are doing to have without me also washes me with sadness. I won't be there for Tara's first period or her grade 8 graduation. I won't be present to watch either of my kids go on their first dates, fall in/out of love for the first time, graduate, make career choices, choose life partners/get married and maybe have children. That breaks my heart.

It also breaks my heart that Michael won't have anyone with whom to share these milestones. (In all honesty, he may, but it makes me so jealous to think of him with another woman. But of course, I don't want him to be alone or lonely.)

So I've been slowly contemplating lately what the end will be like. I ask almost every doctor, palliative care worker, nurse, etc. that I encounter. I want to die at home but I don't want it to be ugly and traumatize the kids. I don't want me to be incredibly sick with lots of clean up for my family. The answers I've received is that it shouldn't be anything like that, but a more peaceful process with me slowly getting sleepier and sleepier, and drifting off. I may have some confusion or perhaps a coma-like state at the end but I shouldn't be sick and messy everywhere. And that's what I want. Now if circumstances change and things start to get ugly where I need full-time nursing care, I have no problems going into a Palliative Care Unit at one of the hospitals.

I know my last wishes for a home death is going to require a lot of sacrifice on the part of my family and friends because someone will need to be with me at all times. But I've been assured, if that's what I want, Michael will do everything in his power to make it happen. He's such an amazing caregiver and I know he's going to be there right until the end.

People should not have to spend this much time thinking about the end of their days. But as Michael says, it could be worse. I could have been snatched from him in a car accident and he'd never had the chance to say goodbye or reminisce about all the good times we've had. And there are far worse ways to die. So in some ways, I consider myself lucky. I've lived a good life, surrounded by amazing people. For what more could I ask?

Tina

14 comments:

  1. Simply unbelievable....you are an amazing woman. If I can muster one percent of your grace and dignity I would be happy. I have no words....no words.

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  2. So glad you got time to be with family in a relaxing manner. I'm sure your daughter will appreciate the wisdom you have shared with her thus far.

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  3. Wow Tina. You say you are getting weaker but after reading this blog, I feel that you must be getting stronger. You have a real knack for putting down in text what I could never say let alone write. To be able to still be thinking of others at this stage shows greatness and you should be commended for it. As many others have said you are an inspiration to everybody, not just those going through cancer. I am truly blessed to have you as a friend.

    Thank You , Jack

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  4. Tina, you are a dear cyber-friend who I think of like a daughter. You are a strong, inspirational, and loving person who deeply touches the lives of everyone around you. I am privileged to have known you.
    God bless.

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    1. Karen,
      I'm honoured you think of me like a cyber-daughter. Thank you.

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  5. Sandra put me onto your blog - while I am sorry I have waited this long to get back in touch with not just you but many other J skool friends, I am glad I've done so now. I am deeply saddened to find you contemplating life's end - but warmed by your ability to share your thoughts and feelings at this time. Your great writing shows through for sure (Scanlon would be proud... grin)

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  6. Sorry to have only just found you here, and discover you up against this. It's not an easy assignment, for sure - but I can see you have the courage and love to transcend all outcomes, as we all will need to eventually. Katherine Scott put me onto your blog ... I wouldn't want to be devoting much headspace to Scanlon - but I think Maureen is right!

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  7. I thank you from the bottom of my heart for being so strong and sharing your thoughts and feelings!!!!

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  8. Hi Tina,
    Like many of those in your “village” I’ve been thinking of you a lot (and praying for a miracle). And when I think of you, here are some words that come to mind:
    Intelligent/witty
    Brave/strong
    Warm
    Selfless
    Loving/loved
    Amazing
    Special
    I could go on.
    I carry you in my heart, God bless...
    your friend,
    Bruce

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  9. Oh, Tina. I am at a loss for words. Thank you for teaching me so much since our paths crossed. You with oc. Me with bc. You are still teaching me. Sending you love. Hoping you have peace. Wrap yourself in your family's love. Hugs.

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  10. Tina,

    My mom had the same reservations when deciding where she'd like to spend her final days. Her biggest fear was making our house feel like less of a 'home' and more of a place where we watched her pass. We reassured her we would never feel that way, and I have never regretted my decision. She passed comfortably, happy, peacefully, with all of us around her. I wouldn't have wanted it any other way, and 5 years later, at 24, I still love going home and feeling her warmth surround me. Losing her changed a lot of my outlook on death; it's not as frightening as I once thought, and actually gave me a lot of peace to see it for myself. My grandmother raised her arms up as she passed, and had the biggest smile on her face. Some kind of miracle happens to us when we go. Something wonderful. I am positive. And we will all be together again some day, forever.

    Thinking of you,
    Sami

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  11. You are amazing! I feel blessed to be introduced to you. As a mom and breast cancer survivor, I can relate to your story. I hope you will live each day to it's fullest and enjoy every day with your kids. Uugghh. Cancer sucks! Thinking about you! Meredith

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  12. This brought tears to my eyes. I always wonder what my mom was thinking during her final days. I would assume her thoughts were similar to some of yours. My heart broke for you as I was reading this. Mom always said I didnt understand what she was going through and she didn't talk about it much. Your blog is helping me to understand what she must have been feeling inside. My thought n prayers are with you. Stay positive n try to enjoy everyday.

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  13. This brought tears to my eyes. I always wonder what my mom was thinking during her final days. I would assume her thoughts were similar to some of yours. My heart broke for you as I was reading this. Mom always said I didnt understand what she was going through and she didn't talk about it much. Your blog is helping me to understand what she must have been feeling inside. My thought n prayers are with you. Stay positive n try to enjoy everyday.

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