Hi, everybody. It has been a long time since I last sent
out an update on how I am doing. It was 2 years ago that
the Inflammatory Breast Cancer first presented, and I went
in on Aug. 3, 2004 and was given antibiotics which as you
all know did nothing for me. To recap: I had a mastectomy
on Nov. 12, 2004 (due to other health problems, could not
start chemotherapy until they were resolved and I did NOT
want to keep that cancer attached to my body any longer than
I had to). Spent the month of Dec. 2004 going back and
forth to the dentist and finally got those problems taken
care of and also my doctor was finally able to find
something that got rid of the yeast infection I'd had for
months (after that round of antibiotics). I was supposed to
start chemotherapy on Jan. 5, but it had to be postponed
once again while I had a colonoscopy (trying to find out why
there was blood in my stool--sorry if this is too graphic).
Told my doctor that I didn't plan on ever going through
another colonoscopy awake (he doesn't believe me--yet)!
Had the first of four rounds of Adriamycin and Cytoxin (A/C)
on Jan. 13, 2005. I was on a dose-dense schedule (every
other week), so I had to give myself injections of Neupogen
5 days in a row the weeks I wasn't getting chemo. That was
no fun, but it did help when I prayed first. After the four
rounds of A/C, I started four rounds of Taxol. Continued to
give myself the Neupogen injections. Had the last treatment
of Taxol on Apr. 22, 2005. I was so happy to finish
chemotherapy--not just because of the nausea, bone pain,
etc., but also because it meant I didn't have to give
myself any more injections! Yaaaaayyyyyy!!! Started once
daily radiation treatments on Jun. 1, and finished them on
Jul. 13, 2005. So far as I know, I am living in the land of
NED (no evidence of disease). (Disease meaning cancer,
because I was diagnosed last summer with diabetes.)
Although I still tire easily, I was astounded the week of J
ul. 16-22 when I went an entire 7 days with NO naps!!!
First time that's happened since the surgery. It didn't
last though. Let's see, my hair did not, contrary to
rumor, come back thicker and curlier...it is even thinner
and straighter than ever. I was able to put it into a pony
tail on Jul. 10th for the first time in 18 months. The hair
kept falling down, so I haven't done it since. Tried to do
pigtails, but after struggling to do one side, I gave up.
Good thing I don't have a big ego about how I look! I did
lose about 40 pounds starting after the surgery and
continuing through the chemotherapy. When I started
radiation, they told me they didn't want me to lose weight
while I was getting the radiation treatments. I shouldn't
have listened to them...I stopped eating five small meals a
day and went back to the old two or three bigger meals and
while I haven't put the entire 40 pounds back on, I
immediately began gaining weight and have now put 20 pounds
back on. D
ang! I've tried to get back to eating five small meals a
day, but so far it hasn't worked. Double dang!! Well,
guess I'll just have to try to be happy just being clean
and hopefully neat although "cool" is more
important than neat--yep, still having hot flashes which
means I must be setting a world record or something since
they began in late 1985 (within a few months following my
first mastectomy). The first time I had radiation, it took
me 2 years before I got any energy back and I was only 31
then, wasn't overweight and didn't have fibromyalgia. I
am still hoping that it will only take 2 years to start
getting my energy back even though I'm a lot older now, am
about 90 pounds overweight (I started putting on weight
after the first series of radiation treatments in 1981), and
have fibro., diabetes, the beginnings of osteoarthritis,
etc., etc., etc. The good news is: I'm still alive! As
many of you know, when I was first diagnosed with IBC, the
statistics said that
the 5-year survival rate was only 40%. It is my belief
that the survival rates are inching upwards thanks to all
the new chemotherapies they are coming out with now. I've
been lucky so far (yes, I know, three breast cancers isn't
really super lucky, but having caught them fairly early is
lucky), and I'm hoping to not have any recurrences. To be
honest, they (the doctors) do think the IBC will recur as
that is the nature of the beast. If and when it does, I
will deal with it then. In the meantime, I'm counting my
blessings (mostly small ones, but very important
nonetheless), the biggest of which are my family and
friends--without you, I probably wouldn't still be here!
So, thank you all for your help and your prayers over the
past 2 years.
Love, Jean
aka "Jean, 57, No. Calif."
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