The End of Your Life Book Club


Oct 25, 2006 Joann Biondi's book signing




The End of Your Life Book Club”

“One of the cruelest things about cancer is the side effects of the treatments. Roger had warned her that she would feel so awful, she wouldn’t be able to get off the bathroom floor and would lie there in misery. That did not turn out to be the case. But the mouth sores she got meant she couldn’t eat or drink or speak without real pain.. Then came the diarrhea and constipation and the exhaustion. When it turned out her red blood cell count was low, a transfusion helped. But often she was just plain tired. And keeping weight on was a constant struggle – she wasn’t hungry, and the chemo made everything taste awful.”  (tiny excerpt)

This is a memoir by Will Schwalbe of his Mother’s experiences having pancreatic cancer.  I haven’t read the reviews but I found it good reading. No over-the-top emotionality, no romanticism – kind of.  It is, simply, the story of a Mother and Sons’ experience.  A friend recently told about his Step Dad: lived with pancreatic cancer for 11 years!  He had about a ga-zillion surgeries, plus the chemo, along the way.

The book is on my Suggested List because it is real. Yes, the family is quite privileged and they get pancreatic cancer and die also.  I can not count how many times I’ve asked surgeons “why don’t these patients know what to expect?”  It’s frustrating.  How many times have I stood by and watched individuals and families make medical decisions having barely a clue what the ramifications of those decisions were.  How many patients have I been with during the ramifications of those decisions?   I have great respect for our physicians. It can be a very challenging job.  And it is unfortunate that our current culture and Illness Care System makes it increasingly difficult to be transparent.  What are ALL the treatment options, including palliative care / symptom management / comfort care?  What personal care needs are to be expected?  Side Effects? Pros and Cons of all.  How about up-front costs for the various options?  now that would be a hoot.

So I think reading a well written true story is sometimes worth while, speaking of which…

There are 4 guys playing golf…

A Neurologist, two Orthopedists, and my husband .  He tees off at #14. I don’t remember hearing about how good, or not, the shot was.  I do remember that his back ‘went out’. Sounded painful because I was told that the other three had actually considered taking him off the course on a stretcher.  This was a problem.  This round of golf was also the Practice Round for tomorrow’s Tournament.

I don’t KNOW if they sat down for a beer, or wine, or whatever first.  I DO know that by the time I saw my husband he had had an injection of cortisone (for the inflammation and come back in 4-6 weeks for another), an emergency dose of a muscle relaxer (to prepare the ‘field’), and a Rx for pain medication.   I have NO idea how they did at the tournament.  I DO know that within a few weeks my Man finally went to see our friend Andy, MD (sports medicine) who recommended some yoga-style exercises and to do them with a Physical Therapist a few times to make sure he’s doing them correctly.  That was about 4 years ago and he hasn’t had a twinge since.

I also don’t know if he’s ever played in the same four-some again.  But it was a good reminder for me that Doctors (like most professionals) tell us what they CAN do for us, but not what they CAN’T  do.  It is up to each of us, if we want to make more informed decisions, to ask all the hard questions, pros and cons, what are the costs? all the costs?

Also on the Resources Page are links for a couple of good novels – my theme IS Dying you know! – that are quite light-hearted.