A taboo subject…

Patients do not want to hear that they are dying and doctors do not want to tell them. Quoted from “USA Today,” February 7, 2011: http://goo.gl/WAaoz

It’s not easy to write about death. Not easy at all. And whenever I talk about my own death, I do so in a joking manner. I can’t help it. That’s the way I am.

But when your body contains a whole bunch of cancer cells, thinking or wondering SERIOUSLY about death from time to time is inevitable. And so today I’ve decided to tackle this taboo subject. In my own, far-from-perfect way…

(Note: I wrote today’s segue to yesterday’s post a number of months ago, when the “death” discussion came up in the Facebook support group after someone posted a link to the above-mentioned “USA Today” article.)

Okay, let’s have a look at another excerpt from the article:

Fewer than 40% of advanced cancer patients have what it [=the oncology society] calls a “realistic conversation” with their doctors about what to expect and their choices of care. The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life. They are spending more of their last months hospitalized. They’re not told that a lot of expensive, side effect-prone therapies buy at best a few more months. SHOCKING…

This quote reminded me of what Dr. James Berenson, a multiple myeloma specialist whom I highly respect, said in a recent ASCO interview that I posted about on June 10 (direct link to the interview: http://goo.gl/9QkPW): I believe that the goal of a myeloma patient is to live the longest life possible with the best quality of life. And that quality of life not only has to do with the disease but the impact of therapy. And the impact of therapy is not only on your quality of life, it’s also on your length of life. (My transcription.)

I’ll definitely take quality over quantity any day…

Well, as far as I am concerned, I’m not planning to die any time soon. My myeloma is still stable and in the smoldering/inactive stage…Besides, I only rarely climb ladders or go swimming. 😉 You see, according to one of those “most common causes of death” lists, I’m more likely to die from an accidental fall or by drowning or even by poisoning myself than of dying of myeloma. So it appears I might be safe…For the time being, anyway!

Seriously now, you never know what might happen, even relatively quickly, since myeloma is an insidious type of cancer, and that is why it’s best to be prepared, without going overboard, eh! But I do think of what my progressing to active myeloma and dying would do to my loved ones. And I wish mainly to spare them as much strain and stress as possible. Especially Stefano…

To underline the importance of being prepared, here is another example from the “USA Today” article: Lichter tells of a lung cancer patient who spent his last days on a ventilator, unable to say goodbye and incurring $25,000 in hospital bills, because his family called 911 when he became short of breath. Hospice care could have eased that symptom at home. Sheesh!!!

I don’t want to go out in excruciating pain, short of breath, alone, surrounded by lights and sirens and people pounding on my chest. (=Quoted from the USA Today article…) No, I definitely don’t, either…

This was a difficult post to write, and I feel I haven’t done justice to the topic…no, I didn’t even come close. And that is why I welcome any comments…

6 Comments

  1. We have spoken openly and frankly of what to do in whatever circumstance, including going outside for final peace if it comes to that. The Dr is very open and honest, for that we are very happy. Optimism is always the key of the day, but when push comes to shove, we know we are on the same page. Enjoy the day while it is here and treasure every moment! Make laughter and don’t take life too seriously because the time comes to all of us at some time, whether by accident or illness.

  2. We talk about births and we talk about illnesses and yet many of us use the phase “if I die,” as opposed to “when I die,” as if there was another option… LOL! Even seemingly healthy people act as if there was no end in sight, or an end at all. This is not a condemnation, but a curious fact of how we see ourselves. Naturally it is a horrible shock to think of an end when we get a terminal diagnosis.

    I have had several important conversations (for me at least) with an MM blogger off line about the ‘end times’ and they usually seem to increase during the patient’s flare-ups and depression. There is a very interesting blog called “Diary of a Dying Mom,” where she faces head-on her fatal illness. It’s not about MM, but it is about this taboo subject and how she handled it. It reads like a sad book where you know the ending, but she was an intelligent, funny, loving mother and wife and this comes through in her postings – an important legacy.

    Denial robs us of the opportunity to take care of emotional business and, IMO, robs us during the grieving process of missing that individual we cared about by adding guilt to the mixture – this comes from my own experience, by the way.

    But… the big caveat … if the patient does NOT want to discuss end-of-life issues, then I think that position should be respected. Family members may feel otherwise but I think forcing the discussion may backfire. Having the medical team in place to address the problem, including depression, may be a way to open the door, but from a personal event, I know that some people just do not want to talk about it – and that is their choice.

    While I am blessed with good health at this point, I have talked openly with my children about the End Times and what to do. They are shocked and annoyed about such conversations, but I hope when the time comes, they will have some appreciation that we talked at all about it.

  3. I had this conversation with a fellow patient last time I was in hospital – poor woman didn’t even belong on the blood ward it was just that there was a spare bed, she only had an ingrowing toe nail! ;D I jest, she had an infection resulting from her first treatment for breast cancer.

    It started with her telling me about a friend’s son (who had cancer but was in remission) refusing the last treatment as he found it too traumatic and that her own daughter, who’d had a liver transplant, had said if anything happened to it in the future she didn’t want to go through it again. Whereas the fellow patient was frightened of dying, I said I wasn’t. I’m quite okay at the thought of dying, I mean, as Sandy says it is inevitable for everyone, it’s the thought of getting to the point where you have to decide that dying is a better alternative than living that leaves me cold. I don’t think I’m wording that right – it’s the thought of stopping treatment and then lingering – that might sum it up better – I don’t think I’d be a good lingerer because I consider quality of life is SO IMPORTANT.

    But overall I don’t give it much thought – other than telling B the other week that I might need to change the undertakers on my funeral ‘how to’ list as I noticed the one I wanted had now set up on his own. Oh, and I am particularly careful when crossing the road in front of buses! ;D

  4. This is an important topic that we all too often avoid, or on the other hand, wallow in. It’s hard, at times, to find the happy medium. I am an executive recruiter in my, now part time, day job, and occasionally when I’m googling someone’s name, I am brought to the obituary page of a local newspaper. For some reason I am compelled to read them and particularly note the ages. Then I might think, well, I’ve already lived longer than that, and I’m smoldering, so what am I complaining about? At another time everyone is in their 90’s and I think, Oh well. The reality is that every person alive has been given a death sentence. We’re just much more aware of it. I’ve had such a focus on MM in the 4 months (is that all?) since my diagnosis, that it’s almost as if I’ve forgotten that something else could get me. So maybe I should cool it with the brownies. It feels like the future is so wrapped up, at times. This is it. You’ll die from this. But something else could happen to me long before, or, they could find a cure and I will die of a nice–or mean & crochety– we’ll see how that turns out–old lady. My parents both lived to be 91 and never went to doctors. Who knows what might have been lurking?

  5. I had my advance directives done years ago, and have even pre-paid my cremation.

    I look at it from the perspective that I really don’t want to leave messes for others to have to tend to.

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