From: kip@space.mit.edu (Karolen I. Paularena)
Subject: Re: leukemia
Originator: kip@plas7
Reply-To: kip@space.mit.edu (Karolen I. Paularena)
Organization: MIT Center for Space Research
Date: Mon, 5 Oct 1992 17:37:38 GMT


In article <1992Oct03.031347.9972@microsoft.com>, peterma@microsoft.com (Peter Mason) writes:
> 
> I have a few questions, which I think apply to cancer treatment
> in general, as well as leukemia:
> 
> - What have other people done to learn about disease and treatment? 

I was diagnosed with breast cancer two years ago.  I found it very helpful
to use the local public library as a resource.  There are a few really good
books, but unfortunately I can't remember titles.  Some are very helpful from
a practical viewpoint (what can people eat during chemo?), some for emotional
support.  If your library isn't a good resource in itself, try asking the
librarians to help you get things from inter-library loan.  I found my
library staff to be wonderfully helpful.  Also, your doctor should know (or
I'm sure someone else here does) the NIH Cancer Hotline phone number.  They
can send reams of information about diet during chemo, coping strategies, etc.
> 
> - Does it really help to talk to others who have been through this? 
>
This is something I'm not clear about.  I had the same problem with age.  I
was diagnosed at 33, on the young side for breast cancer.  I found dealing 
with the issues of grandmothers very different from dealing with the issues
of a mother with young children.  However, the fear of dying, at 33 or 73,
is pretty much the same.  Getting sick from the chemo, or losing one's hair,
are remarkably age-independent, especially how one feels about it.  So from
that perspective it can be helpful.  I would suggest trying support groups a
little longer; sometimes the early stages of acceptance (2 weeks isn't that
long a time) get in the way of seeing what help there is.  I'm not trying to
preach, just trying to tell you what my experiences were.
>
> - On a very practical level, does anybody have good suggestions about
> how to deal with hair loss? 
> 
The tough question!  Pretty much everyone recommends getting a GOOD wig.  I
felt I didn't have the money, which was probably a mistake, and got a lousy
one which looked so funny I never wore it.  I got by my chemo with hats.  A
few styles covered enough of my head, and even lent a certain cachet to my
appearance.  I also think that many women find this the absolute worst thing
about chemo.  I was too busy dealing with loss of my breast to find hair loss
the worst (I lost ALL my hair, by the way), but it was tough.  It made me feel 
like a walking beacon of illness, sometimes, even when I felt good.  It was a 
constant reminder of how sick (in a way) I really was.  

I have two pieces of advice about the hair, besides cover-ups:  1) look on the
bright side.  My mother had chemo and mentioned that a good point was not
having to shave.  I didn't take that for granted but enjoyed it every day.
Talk about smooth legs!  I also liked not having to worry about how my hair
looked each day, since I knew it looked non-existent.  A sense of humor really
helps.  2) Tell your wife how sexy she looks bald.  One survivor mentioned
getting different colors of wigs and being a new woman at will.  Another 
mentioned trying out hairstyles she'd be too chicken to try otherwise (long
long tresses, tight curls, etc.).  I found that my husband (SO at that time)
made me feel best just being a bald self.  His acceptance made my acceptance
so much more possible.  I walked around bare-headed at home and we made jokes,
but he helped me feel that I didn't have to be anything but bald.

>
>Perhaps you can tell that I'm somewhat at a loss about how to approach this...
>
Don't feel bad.  I watched my mother die of cancer, and I was STILL at a loss
about how to approach it.  You approach it as best you can, and that's all you
should expect of yourself.  If you help your wife by finding out what you can,
being there for her when she needs it, and taking care of things she can't,
you are approaching it in the right way.  It seems to me that going onto the
net is a wonderful first step, and people will point out paths for you to
follow.  I wish you and your wife the very best of luck.  If she has questions,
feel free to ask; I remember how helpful it was for me to have knowledge,
especially gender-specific knowledge.  Hang in there.