April 12, 2013
Another update –
this time with better news. It's been 5 or 6 weeks since I got into
the Palliative Care/Hospice program through my health insurance. The
hospital bed they delivered to the house made a big difference for
me. I am actually sleeping better – for 4 or 5 hours at a stretch.
It's changed my energy level for the better (and, Gordy also can
attest, my “crabbiness” level has improved immensely– ha!!).
It is so nice to be able to adjust that bed . Sleep deprivation was
obviously taking a toll on me since November.
Within the past few
weeks, my energy level had improved. The next big thing is that the
doc prescribed what I call “cough pills”. I was coughing so
much (particularly at night) that it was triggering vomiting, and I
quickly lost 20 pounds (which I mentioned in my last blog) – very
bad for energy. But these pills have cut down on the coughing,
hence, no vomiting, hence, I can eat and – wow – my energy level
is better. It really is amazing to look in the mirror and realize
how incredibly awful I felt and looked just a few weeks ago.
Don't get me wrong;
this is no utopia, believe me. The lingering side effects from the
chemo treatment I had last year, plus the brain radiation in December
are no picnic. But, as I've said many times in this blog, it could
be so much worse. Uncomfortable – I can deal with that. I just
have to take each day as it comes. Some days are pretty good; some
days can be yucky and I deal with it. Oh, did I mention that one of
the radiation side effects is acne? Yes, at 62, I am back at
puberty. Thank goodness for RX drugs to help zap zits! But still –
pimples at 62 – egads!
When I last saw my
Oncologist in mid Feb, I was in pretty bad shape. I usually come in
with a list of questions. But on that visit, I was so wiped out and
had little to ask and little to say. This week, I left him a message
to call We had a long, l-o-n-g talk. One of the questions I had for
him was oral chemo drug we'd discussed last year. When I'd had a
lung biopsy a little over a year ago, my cancer cells were sent off
to California for Genome/DNA testing. The point was to find out
whether my particular cancer cells had certain “markers” or
“mutations”. Unfortunately, my “markers” are turned off. As
a result, the drug would have only a one in seven chance of affecting
(slowing down) my cancer. Also, the side effects from this drug were,
well, not good – lots of gastric-intestinal &
esophageal problems. Do I really want to spend the time I have left
being sick & vomiting for a one in seven chance for any or no
results? I don't like the odds. No. Quality of life is more
important to me.
The one question–
really, the only question - I had for him: How much time do
you think I have? He said, “Maybe a year”. Now I know you may
think I'm nuts (ok, ok, so you already know I am!), but I was so glad
to hear that. I really thought he was going to say “three or four
months”. Even if he's off by a couple of months, it was better
than I was expected.
My sister, Nancee,
from Georgia came here for a week a couple of weeks ago, and my
sister, Micki, from NY is coming for ten days on May 1st.
God, I adore my sisters! It's been great to spend time with them.
I have a “project”
I'm just starting – will probably take me a long time – but it
will help occupy myself – am going through all of my parents photo
albums. Oh, and they took a lot of photos over the years. I may
very well be sending some of you photos. It is going to be a trip
down memory lane for me, that's certain!
I am so incredibly
grateful to my high school friends all across the country who have
been sending me cards and letters. Thank you for remembering me;
thank you for writing to me; thank you for bringing back such
wonderful memories!! I always knew my GHS were special – you've
proved it to me! I will update this blog again soon. Love - me
