Sunday Morning with Rob and Me

Sundays are lazy. None of that scrambling to your choice of worship theatres for us. Late rising, leisurely breakfast – never empty tea cups and conversation defines the morning for Rob and me.

As we usually do, we share information gleaned over the last several days that hadn’t already been featured as a topic of interest in our conversations. We are news junkies. I mostly Internet and he a combination of the web and talk radio.

Today I brought up a Business Week article by Amanda Bennett where she details the financial end of her husband’s seven-year battle with kidney cancer. It cost $618, 616 to prolong his life with 2/3rds of that expense settling in the last 24 months – when virtually everything that took place, did nothing.

Two things struck me about Bennett’s quite well-written article:

1) She admits that she was unaware of the true cost of her husband’s illness in terms of dollars because their insurance coverage really only presented them with bills for co-pays. It made it seem like a bargain when looking only at their out-of-pocket.

2) Even knowing that the last leg of her husband’s illness – in terms of treatments tried – was a waste of time that probably diminished his quality of life – she wouldn’t change a thing if she could do it again.

Oh, and just as an aside, she writes about dumping an opened bottle of one of the potent cancer drugs he was taking down the bathroom drain after he died. WTF?? Seriously? So wrong. Where was hospice? Obviously not doing their job.

Rob and I come to the terminal illness things from different perspectives – kinda. His wife was able to make her own decisions whereas my husband was mentally incapacitated and all decision-making fell on me. There was a tiny glimmer of hope for Shelley. Will never had a chance regardless.

So Rob can play devil’s advocate to my hard-earned position on illnesses that are inevitably terminal. What do I think is terminal? Anything where the odds are fifty-fifty or worse. North American mindset dictates fight no matter what it costs in terms of money and the emotional well-being of your loved ones, but I think you have to take into account the long-term toll. If you love your spouse and kids, how can you do otherwise?

Of course, I am of the belief that death is not evil, unfair and frightening – which is how it is regarded in the West. Death is. Like life is. I exist in either mode though I am beginning to wonder about what constitutes life really. If I always exist then am I not technically always alive albeit sometimes not corporeally?

Rob and I have some heavy Sunday morning brekkie discussions.

He doesn’t like to show his cards much on this. Shelley fought tooth and nail in the face of extremely bleak odds. A realistic person might say that she never stood a chance at all really. I would not want to say that perhaps her time would have been better spent traveling the world with her husband and girls and making the most of what was left. There is/should be choice.

Will wanted to fight. He didn’t understand that there was nothing to fight with. The only option – bone marrow transplant – would have just killed him sooner or left him as mentally/physically ravaged as he was just before he died.

I was selfish in the eyes of his family and friends because I looked closely at the odds and the long-term and decided that sacrificing the present and the future wasn’t the best option for Dee and I. Will would die no matter what. What was left for me to decide was how much physical hell I would let the medical profession put him through and how much of my life and Dee’s life I was willing to trash in the process. I decided – not much. The whole thing was lose-lose and it was up to me to minimize damage as much as possible.

Had we discovered his illnesses even a year earlier, Will would have decided otherwise. He’d have opted to risk the early death and even the mental and physical disabilities to stay alive. To be with me. To be at least sort of around for Dee. The fact that this would have strained me – even more because he would still be alive and in my care as I type this – wouldn’t have mattered to anyone but me. Wedding vows have hidden consequences.

But it would have been his decision. I wouldn’t have influenced him even if I knew the cost in full.

“I hope, ” I told Rob, “that if I were to ever be in a place where death was mostly likely that I would base my decision on what to do next on what would be best in the long-term for you and the girls.”

I don’t know if I am that strong at present, but I am working on it.

6 responses to “Sunday Morning with Rob and Me

  1. When my dad died of cancer in 2008, the home hospice nurse packed up all the meds and took them with her to be disposed. I just assumed that was standard practice, but a friend is a home health care nurse and her view is that because home health care is a business and regulated differently from state to state – practices can vary a lot.

    I do still blog though not as frequently, so by all means link to the post.

    Wonderful that you have written a book that focuses on the realities and cost of cancer and that you have information for people about hospice and end of life care. It’s sorely needed.

    Thanks for leaving a comment. I hope all is, if not well, better for you.

  2. Hi — funny. I just found this… even though it’s, what, two years old? First off , thank you for discussing the article over breakfast. It sounds like you have amazing discussions. Second — yeah, about the Sutent. The article was short, so I didn’t get into the fact that I tried to give it back to the pharmacy, give it to the doctor for someone else, give it back to the insurer…. ANYTHING…. because i figured it could help someone. in retrospect i should have researched how to safely dispose of it, but my husband had just died, i had two young kids, a job,and i was crying a lot of the time. I am pretty sure this is not the only way I screwed up during that time.

    Anyway, if you are interested I wanted you to know that I’ve written a book expanding on that article. It tells a lot more about him, and me, and what we were thinking about, and what our lives were like both before that and during that time. It’s called The Cost of Hope and it will be published by Random House on June 5. I have a facebook page (www.facebook/costofhope) where I have a lot of material on hospice, end of life, cancer care, etc. and I am going to link your blog to it. Don’t know if you are still blogging….. anyway… good “talking” to you.

    Best, Amanda Bennett

  3. I have to admit, I feel relieved that someone that has actually been through it approached it in a manner that sounds like how I would deal with it.

  4. Those are serious topics for a Sunday morning. We have fallen into the habit of sleeping in and getting up in time to make coffee before “CBS Sunday Morning,” a delightful show hosted by Charles Osgood. Most of the reports are upbeat, some are even funny. We have found it to be a delightful way to start our Sundays. Then we make a delicious breakfast, and if the weather is good we go for a walk.

    We have talked about end-of-life decisions in general terms. We have living wills in place. I think it’s hard to nail down exactly what we’d do before we get there. I like to think I’d make objective, best-for-all decisions. I’m just not sure I would.

    • We all like to think we’d be noble and worthy of the mantle of “saintly dying person” but the I think what happens is that the people who surround us squelch their natural urge to worry about how this will effect them because we view pragmatism as a bad, unfeeling reaction. Being practical shouldn’t be thrown over to preserve appearances. Potentially deadly illness is still, at the root, one of those relationship issues that both parties should have say in just like any other.

      We don’t always have downer weighty discussions but often we talk about politics, economics, education and societal issues. That’s just us.

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