Quality of Life

(Posted in Wellness Wednesdays)

I’m in the sixth grade.  I come home from school and plop my books on the entry hall table.  I find my mom sitting in the living room, not reading, not watching TV, just sitting. 

She asks about my day, I tell her I got a part in our bicentennial play, “Let George Do It,” as a cheerleader—the “ton” in George Washington.  I sing the song: 

    Take a G and an E and an O,

    And add a little RGE,

    And a double-u,

    ASH,

    I-N-G. 

    Then you take two thousand pounds,

    That makes a ton,

    So what do you got?

    You got a lot!

    GEORGE WASHINGTON!

She laughs.  I’m the smallest kid in class—she gets the joke.

So after she congratulates me, she gets up and asks me to sit in the blue chair where she had been sitting, “Sit here and look this way with the window there at your right.  Yeah, like that.  Do you see flashing lights up to the right when you sit there?”

I didn’t.

“Maybe turn your head a little this way.  Now do you see them?”

Nope.

That was the first sign that my mom had ocular melanoma.  The cancer that would take her life only five years later.

Like most parents probably would, my parents tried to protect me from the seriousness of the situation.  I knew she had cancer but I never fathomed she would die from it.  Maybe they didn’t really know.  I’m not even sure the doctors knew then what they know now, perhaps they gave her hope.

Yesterday, I learned more about ocular melanoma than I’ve ever known before.  This article in the New York Times brought back all those memories and gave me insight that I never had all those years ago.

There’s a new genetic test for ocular melanoma patients that can very accurately predict a their prognosis:

            The test identifies one of two gene patterns in eye melanomas. Almost everyone in Class 1 . . . is cured when the tumor is removed. As for those in Class 2, 70 to 80 percent will die within five years. Their cancers will re-emerge as growths in the liver. For them, there is no cure and no way to slow the disease.

When my mom was diagnosed, there was a spot on her liver.  So you can see now which group she was in.  The doctors monitored that spot for years before it started growing.  When it did, they started chemotherapy. 

I don’t remember how long Mom withstood chemo treatments, but I remember it being grueling.  She’d be horribly sick the first week following treatment, mildly sick the second week, and even though she felt fine the third week, she would fall into a depression, anticipating the next round of treatment.

After several months it was clear that the treatment had failed.  She was admitted to the hospital for an even stronger regimen of chemo.

She was released for a few weeks, long enough to come see me one night in my high-school’s production of “Bye Bye Birdie.”  But she couldn’t even sit through the whole performance she felt so awful. 

It wasn’t long after that that she fell into a coma, dying several weeks later, right after Thanksgiving.

I think if my mom really knew what her prognosis was, she might not have elected to spend the last year of her life hopelessly trying to cure the incurable.  Fighting to stay alive, when all that staying alive meant was to be so sick and so tired that she could barely even endure what was left of her life.  Chemo didn’t extend her life, it just made what was left of it miserable, possibly even shorter.

There are some doctors mentioned in the Times’ article that are not offering this genetic test to their patients, claiming that their patients wouldn’t want to know if they had a cancer that they could do nothing about. 

Besides the fact that you are taking treatment decisions away from the patient with that approach, the final story of the article shows the other downside of that attitude.  In the case of the 18-year old patient profiled in the article, she happily turned out to be in the class of patients that would be cured by removing the tumor, Class 1.  Based on the large size of her tumor, without that genetic test, she would have been told that her prognosis was very bad, when actually, her prognosis was that she had been cured.

 

Related Posts:

         My Decision to Retire

         Travel in Retirement:  Why Get Away When There's Nothing to Get Away From

         Drama Queen

 

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Comments

[Rick]

I'm sure everyone who reads your piece will be honored by your sharing and sorry for the suffering and loss involved. Take care.

[Tom Sightings]

Sorry to hear this story abt. your mom. We've had cancer in my family, too -- not ocular melanoma, but other kinds that are just as deadly. No fun at all. I support Relay for Life, with the hope . . . with the hope.

[New at this]

A very soul-bearing post...

I've often wondered why more people, who have the means, don't retire early....Is it because they really want all the extra material possessions and country club memberships? Or is it because they really don't "get it". Life is short, and just because we don't admit it, doesn't change the answer.

My mother also died of cancer at a young age after a gruelling 7 year decline. And about the only positive I can see that comes out of watching this sort of thing unload on the ones you love, is the wake up call it gives to those standing helplessly by and watching...

Sorry for your loss.

[Retired Syd]

Thanks Rick.

Tom, it's sad, isn't it, that most of us have been "touched" by cancer in one way or another.

New at that this: I'm sorry to hear about your mom. And 7 years is a horribly long time to have to suffer. But you are right, it definitely shapes your viewpoint going forward, and I do think it impacted my decision to try and retire young.

Here's to all of us staying healthy and enjoying life to the fullest!

[My Life In Focus]

My mom died at the age of 58. A full 11 months after she took her FIRST vacation. Wow! Talk about a life changing event.
I decided to live my life to the fullest ever since. I was 28.

Never looked back and really don't care about anything because in the long run, does any of this really matter?

[New at this]

So Syd, I think a lot of us sort of think of think of you as our early retirment "scout"....In my own case, with just 5 months to go! (sorry, just like to write that out loud)...I'd love to hear how you still feel about the whole idea 4 or so years into it....Would also like to hear from others if they are lurking around.....

Its interesting that most of the discussion around the web on this topic seems to come from those who still haven't done it yet (guess it makes sense because they are so excited)....but would actually be a lot more insightful to hear more from the verterens.....

Any thoughts on how to get a conversation like that going...?

[Retired Syd]

@My Life: Sorry about your mom. It does teach you to enjoy life to the fullest and not to sweat the small stuff, doesn't it?

@New: In two more weeks I'll be re-retired, so I'll try to get that conversation going for us all. And congratulations on the only-five-months-to-go part!

[Grace]

I would be right there in line to get tested if I had the chance (and heaven help the doctor who tried to take that chance away from me). We deserve the right to make our own decisions our own way. I don't think this post is really about early retirement--I don't know that I would retire if I knew I had only a short time to live--but about how one wants to live during whatever time we have. OTOH, in the small town where I grew up, there is a strain of Huntington's Chorea--I do have a couple of friends who chose not to get tested. One developed HC, one did not. Both had families before they knew if they had the HC gene. I understand their choices even if I think I would have made a different one.

[Retired Syd]

@Grace: I agree, I think it's pompous for a doctor to think he knows what I would want to do without asking me!

I have too many friends and family members that have been recently diagnosed with cancers of various types. This issue of how/whether/when to treat it has been weighing heavily on me for the last several months as a consequence. I guess you really don't know how you would react until you are really faced with it, but I have a pretty good idea, given my experience with the subject.

Anyway, you are right, this isn't really a retirement post, it is really a what-I've-been-thinking-about post. Having said that, I do think this experience of losing a mother at such a young age informs many of my life decisions, including my decision to get out of the rat race early.

[deegee]

My mom passed away from Multiple Myeloma (a rather nasty form of Leukemia) in 1995 at age 59 (I was 32). I wish she had been able to see me retire at age 45. She had gotten me started in investing back (not counting my 401(k)) in 1990 with some muni bond funds so I could earn interest without paying taxes on it. That is how she was, planting a seed and watching it grow, whether it is an idea or something in her garden.

[Intrakid]

Believe it or not, even with the growing awareness of skin care and sun safety, the main cause of death from a form of skin disease is melanoma. Melanoma is a type of skin cancer and it can be quite serious and aggressive, making it very important to address quickly. When melanoma occurs, melanocytes are affected.