November 17, 2011

The ups and downs of remaining time.

A day in the life. A week in the life. What is it like to live each day knowing you are dying prematurely, that there is a clock ticking away somewhere with your name on it? I'm sure a lot of people would like to ask me that sometimes, but most are afraid to or think that it might make me feel uncomfortable. Well, let me try to answer that with some examples.

It seems that every week is different in some way. There is no "regular" or "average" week. I thought that when I stoppedd working, I would be sitting around watching a bunch of movies, playing the guitar, doing puzzles ... that sort of thing. But it hasn't been like that at all. I sleep a lot from the fatigue I suffer due to the cancer and the pain meds I am on, so it seems like there is never enough time in the day to do very much. At the same time, there is an underlying feeling that time is precious, and I feel guilty that I'm not making the most of it. I don't sit around sulking or anything like that, but I feel like I should be doing more.

This past summer, I did make the best of the good weather, the highlight being the several trips to our friends' cottage on Georgian Bay. I was also able to spend some sunny afternoons relaxing in our backyard, but maybe not as much as I would have liked. But the fall has seemed to go by quickly. I'm already 6 months into my doctor's estimate, but I am still hopeful that I will exceed the year I supposedly have left. The runaround that I got from my medical oncologist where I almost got back on cancer treatments was extremely hard on me and was a stark reminder of my situation. While I'm back on track, I still have a few remaining tests and procedures to do, most notably some radiation to a few of my bone mets to relieve the pain a bit. All about quality of life, you know.

So let's look at ths last week. Not a normal week, but it will give you an idea of the ups and downs of my life.

On Saturday evening, with the help of a couple of Red Bulls, I enjoyed an evening at a lounge celebrating my daughter's engagement with her fiancé, his family, our family and their friends. It was a wonderful time and I lasted until almost midnight, pretty good for me and very worthwhile. I am so thrilled for her and I love our future son-in-law. Of course, I spent most of the next day recovering, but I was prepared for that. A happy, normal father for a while. I loved it and really was happy!

Then a doctors appointment on Monday morning to discuss radiation, another on Tuesday morning with my orthopedic surgeon to talk about my back and then again on Wednesday afternoon for targeting scans in preparation for the radiation. All this while getting used to my significantly higher dose of pain meds. On the first two days, Dianne and I took the opportunity to do some Christmas shopping - a normal thing to do - fun - but by mid-week it started to get to me. The doctors' visits, the trips downtown, the parking ... all of the things that have happened to me and that I have experienced throughout my cancer journey, they all cause my stress level to go through the roof and the depression descends on me like dark volcanic ash. I spent the night in tears, feeling sorry for myself, feeling guilty for things I had done in the past, things I should have done, and that which I was doing to my family. I know it's not my fault that I got cancer, but I still feel guilty because it's me that is changing everything. My life is ending and Dianne's will never be the same. My children are losing a father, a future grandfather. And I am going to miss so much. It tears me up inside sometimes. All of it.

You might think that I fear only my own death, but I fear the death of my life with Dianne and with my children. I fear the challenges and changes that my death will bring to them all. But then, in my tears, I realize how much I will miss them and how much I will miss of life. All the things that I might have experienced. All the wonderful things that I will miss seeing. All the great new products that Steve Jobs left in play before he died. All the things I might have done. It can seem bleak, hollow, sad. And that's when I know what it really means to die. And that's what I fear.

So you see what it's like to be me. A week in my shoes that ranges from the highest of the high to the lowest of the low. It ain't pretty, but it's all I've got. And I will do my best to enjoy each day to the fullest. Each day with all it's ups and downs. I will laugh and I will cry and eventually I will die. As will we all. I just know mine is coming too fast and I am afraid.

22 comments:

K said...

Hi Doug,

A beautifully written post as always. You are always in my thoughts and I am so glad that you got to have a good night out celebrating your daughter's engagement.

Lori Hope said...

Hello, my dear friend. Like K, I am so glad that you got to celebrate and enjoy yourself - love the Red Bull idea. It's so strange because, although I am not facing death soon, as far as I know anyway, I can relate in some ways to what you are saying. As one who faces the possibility of lung cancer again (my kind of lung cancer, which tends to show up again, was called by my surgeeon, "the gift that keeps on giving"), I feel under pressure to make the most of every moment. Sadly, I fritter many away, surfing the web, watching silly TV (though laughter is never a waste of time!), and even sometimes shopping, which is a way of assuaging fear and lonliness I think.

Anyway, thank you as always for your beautiful writing, and for sharing your beautiful soul and mind and heart with us. I have told so many people about this blog, which is one of the most important ones I have and probably will ever follow.

May your pain be allayed and may you always find comfort and peace in the love and community of family and friends. Love to you and Dianne,
Lori

Anonymous said...

my dear friend- you are so special for sharing your experiences- I enjoyed the boating time we had together this summer- congrats to the kids on their engagement- you and your family are always in our thoughts
dave

Anonymous said...

I was wondering what your post-op pathology was? Gleason score, margin status and so on. I was dx. at age 42 and I am now 3 years out.

Russ said...

Thank you for so openly sharing your ups and downs. There is great value to all of us to understand this.
Hang in there . . . while there will be undoubtedly be dark times, I'm so glad to see you can make the most of the good times and continue to have some exceptional moments and real quality of life. And the prayers will keep coming your way.

Anonymous said...

I love the beauty of your writing and the clarity you place so much in your posts. Thank you for sharing with us the beauty if each moment most of us take for granted.

Anonymous said...

Your writings are wonderful and heartfelt.I lost my husband to this same horrific disease and I relate to the story you are telling.Thank you for sharing and being so generous with your life and journey.Peace to you and yours

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