Dear Joy:
I can empathize with you completely. My husband and my sister both have
late stage cancer with a poor prognosis. My husband is doing everything he
can to help himself and my sister is being totally passive just letting
things be done to her. Each person is different. No matter how desperate
the caregivers become I think we can't nag. Hope and positive attitude are
very improtant as you know.
My husband was initially diagnosed with adenocarcinoma unknown primary
with a pleural effusion and mets to both lungs. We saw a top onc at Dana
Farber (we live in NY) who had been head of the lung division of NCI and he
was certain the primary was lung. Generally for men they say lung and women
breast. What chemo is your mother on? Some, especially cisplatin, are well
known for producing nausea. A drug called Kytril helps a lot. Also real
marijuana tea (this is what our own onc told us) but how does one get that
--I certainly don't know. Apparently the synthetic is not good.
I do know that nagging doesn't help and only antagonizes the patient.
When my husband can't eat I leave him alone --I hug him and kiss him a lot
and let him know that I love him and understand what he's going through as
best I can. I gently say, "Let's try and think of something you might be
able to eat." He seems to have a craving for meat a lot (he's Japanese and
we never ate meat much) but I let him eat WHATEVER he wants, even white rice
which I know is useless but that's what he wants. We have also been doing
aggressive Chinese herbs that I believe help combat the effects of the chemo.
Dr. Andrew Weil personally recommended Maitake Mushroom extract which my
husband takes 3 times a day in water (it's a well known anti-cancer remedy)
I can tell you where to order it if you'd like--it's rather expensive but
highly regarded). I ordered a bottle for my sister but she refused to take it
so I took it back. Everything depends on the patient's attitude. My
husband wants to live as long as possible and knows he has to eat. My sister
was diagnosed the same time as my husband with adenocarcinoma of the
stomach/esophagus so she's throwing up all the time and can't hardly eat even
if she isn't taking chemo.
The prognosis for my husband and sister is very poor but there are
exceptions to every rule and every day is precious to us. My husband was so
scared at the beginning. He even cried and kept having nightmares about
being buried alive. We were lucky enough to find a wonderful oncological
psychiatrist at Sloan Kettering who has helped him enormously. She put him
on paxil in the morning (for anxiety and depression) and xanax at night to
help him sleep. This has REALLY helped him. He also meditates and we keep a
Bhuddist alter with fresh food, candles, and all the pictures of his
ancestors. He listens to a wonderful CD by Andrew Weil every day called 8
Meditations for Optimum Health. It is so soothing with lovely music and
breathing exercises. I strongly recommend it.
My husband even saw a healer (I think it's nonsense but whatever he wants
if it makes him feel good).
I guess my advice would be not to put pressure on your mother, not to
force her to participate or overdo for the holidays (traditionally many
people get depressed at this time of year anyhow), and keep things really
simple. Most important let her know you love her and want the best for her
and that you understand how hard it is right now at the holidays (maybe I'm
being presumptious saying this since you're a social worker). When my
husband's quality of life turns too bad, I certainly won't force him to go on.
I don't think I've ever written anything so personal before. There are
many previous posts about specific foods--no strong smells, nothing fried,
eat little meals several times a da y and so forth.
Hope this has been of some help. Let me know if you want to know anything
more. All my best to you and your family. Love, Bess
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