Hi Char !
Bookcrossing is a great place to ask for help!
Take a deep breath and relax, the next period of time till your friend has
either past the 5 year mark or until she dies will be hard. You can help.
My name is Marsha and I was diagnosed with breast cancer in September 2004.
The post surgery report showed that my cancer was aggressive and had spread to
ALL my lymph nodes in my armpit. I thought I was dead meat at this point! I
had 3 surgeries in six weeks, moved 3000 miles, followed by 4 months of intense
chemo, followed by six weeks of daily radiation. Radiation finished at the end
of June last year. I'm still tired (although part of the problem is I hurt my
knee just before chemo and it hasn't been fixed yet so no exercising). I have
a 40% chance of being cured, there is no test to tell whether I still have
cancer, so I take one day at a time and am catching up with all the things I
put on hold.
Preliminary diagnosis:
When i first found the tumor my husband was 3000 miles away so i had to go to
the doctor alone. I was very scarred. It would have been nice to have someone
with me during these visits, but everyone was 300 miles away. During this
period all diagnostic appointments should be scheduled within 3 days if they
are not push for your friend! I didn't know this so when all my appointments
were marked "normal" instead of "high priority" and booked two to four weeks
out i didn't complain. During this period, from the time I noticed the lump
until my first surgery 16 weeks passed and my tumor doubled in size!
Surgery:
She will want to sleep after surgeries at least the first day till the drugs
wash out of her system. What help she needs will depend on what surgery. Mine
wasn't bad. I just needed someone refilling my ice bag the first day while i
slept and washing my hair for me since I couldn't raise my arms and couldn't
take a shower till the drain tubes came out. Fortunately my husband was there
to help with that.
Chemo:
There are various aspects and mini schedules involved in this. Alot depends
on what chemo drugs the doctor gives your friend and how she personally reacts
to it. If your friend doesn't have a husband who can attend the sessions with
the oncologist you might consider volunteering (there are usually 8 visits
while she is actively getting chemo). The reason is her brain will be
partially fried and even if she thinks she is doing ok she will realize later
that her brain wasn't functioning normally so if you could be her brain . . . A
good question to ask the oncologist is what are the typical side effects and
what do you do to cure them. I could have bought heart burn meds early and
been ahead of the game. A chemo session starts with checkin, blood test,
doctor visit (about 5 minutes- I never undressed - just answered questions ) IV
and preliminary drugs and then the chemo. The length of time depends on the
drugs she is receiving say 2 to 6 hours a visit. I felt well
enough to eat and visit during these sessions although some are given Benedrel
and fall asleep. She might like a picnic lunch, card game, visiting, or a
movie. It shouldn't be gross or painful for you. When chemo started some of
the things that almost took me out were secondary things (nuclear heartburn - I
could only eat about 3 - 6 spoons of food a day and couldn't sleep, my brain
wasn't functioning well enough to think to call the doctor (I kept thinking I
didn't want to bother him!). It would have helped me if someone close to me
had taken the iniative to call my oncologist - the fix was simple. I think I
came the closest to dying from a sinus infection that started me coughing until
i couldn't get enough air to breathe. This was the only time I vomited! I
survived the night but suffered from incredibly low blood pressure that caused
me to pass out the next morning. Another thing that would have helped during
this time was someone being my liason with medical
insurance. Remember my brain wasn't functioning, my husband was stressed out
and the short term leave insurance guy kept calling and sending me piles of
paper I couldn't deal with. Also the oncologist sent me to the radiation guy
and I needed to go back to my primary doctor for a referal but I thought it was
taken care of, NOT!
Radiation:
Most people can drive themselves (except for the ones with brain tumors - Drs
take away their driver's licenses!). The waiting room I was in had puzzles and
I enjoyed working puzzles with other patients and visiting. I would go Monday
through Friday and see the doctor one day a week. Like I mentioned earlier she
can probably handle this by herself unless she has a brain tumor.
General hints:
I was blessed with a number of concerned people who wanted to help. The
things that I appreciated the most were: prayer, people sitting with me during
my chemo infussion sessions ( I had eight two weeks apart and was able to have
multiple people with me) and bringing me lunch, cards, letters, visits (during
4 months of chemo I was too focused on pain management so the best here was
someone who could help with housework or errands and was willing to sit with me
and read a book quietly). Chemo does funny things to you, I was in constant
low grade to high grade pain, my short term memory was gone, I couldn't
remember anything I read, but I was happy staring at the wall all day every day
for four months. Weird but true. Do keep in mind that my knee was so swollen
I only walked when I had to. If my knee had been in good shape I might have
liked walking with someone. During chemo I was on a two week cycle, Day 1 was
chemo infusion and I felt pretty good that day and the
next, Day 3 the pain would hit and I would be down and out until about Day 12.
I was too tired to socialize, all my energy went into pain management. I
began to be social about 3 - 4 weeks after my last chemo session. I enjoyed
going to social events that others planned and executed, I was too tired to
help. I appreciated others helping me achieve things that I had put on HOLD
for so long. 1. I got a cat 2. I went to the UK with my husband for our
25th anniversary (my sister and siter-in-law did all the planning and joined us
for part of the trip). 3. I started paino lessons 4. I got my ears pierced.
5. I'm currently planning a week summer camp for my nieces and nephews for
this summer. One friend gave me a hand knitted shawl that had been prayed over
by the priest at her church. I wore it to my first chemo session when I was
scarred. My sister-in-law Julie gave me a tiera and I wore it around till my
hair fell out.
Diet:
One of the easiest and possibly most helpful changes she can make is to start
using Mangosteen juice. Preliminary paperwork at the FDA shows it killing
breast cancer in a petre dish, helping people with diabetes, etc. Costco sells
it for about 50 cents an once which is the best price I've found. It's 100%
Mangosteen juice and doesn't taste good so mix it with other juices. have her
drink at least 2 + ounces a day. Most oncologists don't know about this yet.
I have an inside line at the FDA.
Wigs:
I could have used help getting a wig. I went out one day on crutches and
bought a wig at the first place I checked out. I just didn't have enough
energy to go any further and was afraid to go around bald. My advice -have her
get a knitted cap to wear, by the time my hair fell out I didn't care. I was
given a free knitted cap at the chemo place, volunteers knit them for the
patients. The knitted cap will stay on when she lies down and gets up.
Scarves tend to be slippery and fall off even though they look nice. When i
got to the point of caring again it was six weeks after my last infusion. I
had a five o'clock shaddow on my head. The wig I bought when I still had hair
didn't fit right, I was missing the cap you put over your scalp under the wig,
so it's loose and turns around or slides off the back. I was self-conscious
when I wore it. If you could take her out wig shopping after her hair falls
out, that would be helpful. You might even wait till chemo is
finished. You can also mail order inexpensive wigs from TLC.
Feel free to write me anytime! about anything
Marsha Russell
aka SaintMargaret
---------------------------------
Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+
countries) for 2ยข/min or less.
[Non-text portions of this message have been removed]
Have you told a friend today? http://bookcrossing.com/tellafriend
Archives and email list settings:
http://groups.yahoo.com/group/BookCrossing
Yahoo! Groups Links
<*> To visit your group on the web, go to:
http://groups.yahoo.com/group/BookCrossing/
<*> To unsubscribe from this group, send an email to:
[EMAIL PROTECTED]
<*> Your use of Yahoo! Groups is subject to:
http://docs.yahoo.com/info/terms/
