My cancer story unfolded in most
unexpected ways. April 7, 2010 my father died; April 8 I was diagnosed with
ovarian cancer. What emerged from this painful sequence of events was
unexpected and extraordinary. What emerged was a love affair with my family and
friends.
I used to think the Internet impersonal;
now I know intimacy can be created anywhere. Intimacy is created by the
intention of the writer to connect just for a moment...and to have that moment
make a difference.
Below is a copy of a year long webpage from
CaringBridge.com journaling my experience with ovarian cancer and
ultimately—recreating wellness. I share this with the intention of contributing
to others in their journey with a life threatening illness.
May God bless you.
Julie
P.S. A friend created the CaringBridge
webpage to keep my family and friends informed on the status of my health. I
took over the writing as my health improved. The act of writing and receiving
notes from so many turned the webpage into a true lifeline. As I connected, I
healed. Prayers, good doctors, family, friends, and self-expression appear to
have been the right combination for me.
______________________________________
(The webpage started a week
after diagnosis.)
WEDNESDAY, APRIL 14, 2010
4:32 PM, EDT
Family and Friends: Generally, I'm in
very good health. I don't have any underlying health problems such as diabetes
or heart conditions. This will enhance my body's efforts to recover from the
surgery and the chemo and contribute to the long-term prognosis.
I am strong mentally, emotionally, and
spiritually and plan to come out of this healthy, hearty, and with a very flat
stomach! Who needs all that complicated plumbing any way?
FYI, the Hollings Cancer Center is a
designated cancer center by the National Cancer Institute (NCI) the only
NCI-designated cancer center in South Carolina, and one of only 65 in the
country.
I have never had a serious health challenge before and have
always taken good care of myself, but it turns out that there are no warning
signs and no tests for ovarian cancer. Joe and I are looking at this
as a big speed bump in the adventure of our life together.
WEDNESDAY, APRIL 14, 2010
10:02 PM, EDT
The only new information I have is that I
am scheduled for my initial assessment visit to MUSC Wednesday, April 21, at 1
PM. At that visit, my surgery will be scheduled. I was feeling real rough
earlier today, but now I have drugs and I FEEL MUCH, MUCH BETTER!
Julie
THURSDAY, APRIL 15, 2010
11:28 AM, EDT
Wednesday, April 22, Joe and I will meet
with my surgeon, Dr. Jennifer Young, at the Medical University of SC (MUSC)
Hollings' Cancer Center for the initial assessment. At that meeting she will
schedule the surgery.
In preparation for that meeting I have to have both a
mammogram and a colonoscopy (the fun never ends). I had the mammogram earlier
this week and its comparison to a previous one shows my ta-ta's to be beautiful
and healthy. Blood work is indicating the cancer has not spread to my lymph
nodes. So, right now I'm batting two for two. Clear ta-ta's and clear lymph
nodes.
My colonoscopy is tomorrow, so those of you who've been through this
truly neanderthal ritual know that while I will be drinking heavily this
afternoon and evening...I won't be enjoying it. Will let you know the results.
Julie
SATURDAY, APRIL 17, 2010
1:58 PM, EDT
Yesterday Julie and Joe went to her
colonoscopy appointment. Prior to that appointment, as any of you know
that have had this procedure, you must drink a wonderful tasty cocktail to
cleanse your colon. Our dear sweet quiet Julie HATED it and only managed
to get half down while screaming and kicking! Then before the procedure, the
doctor decided they need to drain fluid from her tummy. She was not happy
about that either. More curse words and yelling! After the needle
in her stomach removed 3/1/2 liters of fluid (about 7 pounds) she was looking
for someone, other than herself, to suffer.
THE GOOD NEWS
Her lymph nodes are good, her ta-tas are
still good and her colon is just fine. Now the doctors are reviewing the
results of all her test and will decide next Wednesday on whether to do
radiation in an attempt to shrink the 9.9 mm (about 4 inches) mass or to go
ahead with the surgery. I talked to Joe last night and Julie this
morning. Apparently she was hilarious after she was sedated for the
colonoscopy. Things I better not repeat. She really enjoys the notes
and support all of you are sending to her. Keep them coming! More
later. Marti
WEDNESDAY, APRIL 21, 2010
8:44 PM, EDT
Today Julie and Joe went back to MUSC to
have a consultation with her two surgeons. Julie and Joe were very
impressed by Dr. Rebecca Wineland and Dr. Jennifer Young.
Speaking of "young" according to Joe neither of them looked old
enough to be doctors let alone surgeon's. I think that is what happens as
we get older. But I digress.
The fluid they removed from Julie's
abdomen last week did not contain any cancer cells but the doctors feel the
original diagnosis of ovarian cancer is still accurate. Rather than do
radiation, in an attempt to shrink the mass, they have decided that surgery is
the way to go.
Julie and Joe go back to Charleston on
April 27th and spend the night. On Wednesday the 28th she goes to MUSC
where at 830AM they will drain more fluid from Julie's abdomen and her
lungs. They will also do a chest Xray. I got the impression that
this is to cover all bases and to rule out any additional issues prior to
surgery. At 1PM she starts all the pre-op procedures. Her surgery is
Thursday the 29th in the morning. During the hysterectomy, a port will be
installed that will allow chemotherapy to be administered directly into the
area where the mass was. Chemo is to occur after she has
recuperated from the surgery.
Her doctors said she would be in the
hospital no more than 2-3 days. The recuperation period is 3-4
weeks. After that they will decide on chemo.
There is a clinical trail that MUSC is
doing with 2 new drugs that are not FDA approved yet but have a lot of
promise. The trial is a blind study where one group gets regular
chemotherapy with the other getting the new drugs. Julie and Joe talked briefly
about it and the decision to participate has not been made and probably won't
for another month.
Both Julie and Joe have been thankful for
all of your kind messages and prayers. They appreciate the outpouring of
support and it is being helpful to them while going through this difficult journey. Marti
FRIDAY, APRIL 23, 2010
10:53 AM, EDT
I received a call from Julie at 7PM last
night. She sounded a little loopy (drinking??). Nope, actually she
Missed MUSC sooo much that she decided she wanted to check out the emergency
room and their drugs. She had severe back and abdominal pain Wednesday
evening and Thursday morning. She contacted her surgeon and Joe took
her to the MUSC emergency room. She arrived around 12 noon and they
decided to keep her overnight.
It turns out that Julie has a urinary
tract infection plus the fluid in the area of her lungs. They planned to
drain the fluid while she is at the emergency room and have given her medicine
for the infection and pain. This combination should relieve her
discomfort. She talked to her surgeon and the CT scan taken during the
last visit was clear. More good news.
While there was some discussion of moving
up the surgery, at this time it appears the date is staying as planned. Marti
FRIDAY, APRIL 23, 2010 9:41
PM, EDT
While Julie was still in the emergency
room, the doctor decided to do the pre-op procedures for next week’s
hysterectomy. This which an EKG and an x-ray of her legs to make sure there
were no blood clots. She expected to leave the hospital at 530PM today
but was delayed until the hospital figured out why the fire alarm system was
going off. NO ONE could leave the hospital???? I thought the alarm meant
evacuation. Oh well. The operation plan has not changed and will
occur on Thursday. Marti
SUNDAY, APRIL 25, 2010
10:43 AM, EDT
Greetings Earthlings from Julie herself!
I have returned from two days in hell
(aka MUSC emergency room) Thursday and Friday, and came out with no NEW bad
news. The pain I am experiencing apparently comes from the fluid buildup
associated with the abdominal mass. Right now it's a matter of managing the
pain with drugs (the good stuff) and waiting for my surgery Thursday,
4/29.
One unexpected bonus from our adventure
to the MUSC emergency room was that they were able to complete ALL the pre-op
for surgery I would have had to do Wednesday. All I have to do now is show up
early Thursday AM.
Right now I'm in the #1 slot at 6AM
Thursday as it was explained to me I'm the sickest patient that day. Not sure I
like knowing I'm her sickest patient, but I will definitely be glad to go in
and get this part over.
For right now, this anti-meds,
pro-natural healing, I-don't-like-doctors girl is happily taking my meds,
drinking my nutrition, sleeping, occasionally getting on the computer,
sleeping, reading, and sleeping some more. (I would be a very happy camper if I
could simply go to sleep now and wake up in October in time for my
birthday...with all this nuisance gone.)
To clear up the fire alarms at MUSC.
There was one each day I was there. The procedure in a hospital is different
from the procedure in an office building. Since most if not all of the patients
can't be taken out, the simply close off the floor of the suspected fire along
with the floors above and below it. That means everyone on at least those three
floors are in lockdown until the alarm is cleared. I just considered the fire
alarms as an added, but not needed, drama.
Also, cudo's to Mickie Deline who wrote
about the alternative to the God-awful, neanderthal-tasting liquid before
colonoscopies. I didn't get to take advantage of that before my colonoscopy
(that might have saved me a bunch of projectile vomiting, sorry to be so
graphic). But I will be able to take advantage of it this Wednesday when I
clean out my colon in preparation for the surgery Thursday.
Joe and I thank each and every one of you
and want you to know your prayers and love are being received in our
hearts. Our love and prayers go out to each of you and especially to those
of you who have other family and/or friends suffering in any way.
There is great love for you here,
Julie
TUESDAY, APRIL 27, 2010
9:24 AM, EDT
Greetings Earthlings!
If you are wondering why all of a sudden
you are "Earthlings," I'm not sure. Perhaps because in Gene
Roddenberry's Star Trek movies, each character was very different (to say the
least) and their differences were valued. But, whatever the reason,
please be assured that "Earthlings" is meant with great affection for
each of you.
Since April 8 when I first learned of the
"mass in my left ovary," I've gone from shock and a complete
inability to conceive that this could happen to me to understanding that this
IS happening to me and surrendering to the medical processes necessary.
All of you know I believe in preventive
healthcare and staying as far away from the medical profession as possible. You
may not know that I also always felt there was a time and a place for
traditional healthcare. As far as I'm concerned, it's time for both for me. I'm
happily wolfing down my pain meds right along side massive doses of nutrition.
Yum.!
I am in remarkably good spirits. I am
blessed with a profound sense of life that extends far beyond the physical
world. I'm not afraid. I think of God as Love and knowing that the eventual
outcome of my surgery & chemo and the rest of my life is in Love's
hands leaves me in a very peaceful place.
My surgery is Thursday, April 29, around
8 AM. Joe and I thank each and every one of you for your prayers and the
prayers of the organizations and churches you belong to. I look forward to
writing again...
Julie
FRIDAY, APRIL 30, 2010 1:12
AM, EDT
Joe called this afternoon. Julie
came out of the surgery well. They found 4 tumors one of which was
attached to her lung. The mass had blocked the view of the
tumors. Results of the surgery....She is tumor free. The mass was 8
cm but we do not know what it was. She goes back for chemo in 3
weeks. The fluid removed from her lung and one or more of the
tumors had cancer cells. Joe has further questions he will
address with the surgeon tomorrow.
Marti
SATURDAY, MAY 1, 2010 1:07
PM, EDT
Joe called yesterday
afternoon. Julie has been up and out of bed. Now that the surgery is
over she is more upbeat. It was a relief for both of them to have
the mass and tumors removed.
Jule will be walking the halls today
and will probably go home on Sunday. The doctors are examining the
tumors, fluid and mass removed to determine what stage cancer she has. This
will dictate what chemo regime she will follow. Marti
SUNDAY, MAY 2, 2010 4:22
PM, EDT
I just talked to Joe. Julie is
still in the hospital and will probably be released Monday. She is doing
well from the surgery and has been walking the halls of the hospital. She
is anxious to get home, and I am sure it will be a big relief to Joe. Marti
WEDNESDAY, MAY 5, 2010 1:20
PM, EDT
Just a note to let you know I returned
from the hospital Monday, 5/3, and slept most of the afternoon. Tuesday we're
not going to talk about.
Except for the overnight stay in the MUSC
Emergency Room the Friday before, I had never spent a night in a hospital or
had surgery. To say that I was unprepared for the experience would be a
whopping understatement. I would have been perfectly happy to have gone my
whole life without either. As you can imagine, I don't feel like the old
perky girl of the past, and, indeed, am quite weak.
My hero husband is working overtime to
make me as comfortable as possible. Before the surgery, he installed a
handicapped toilet seat (so I wouldn't have to lower myself down so far). Since
Monday afternoon, he's installed a long hose on the shower so i can sit and
shower myself comfortably. Plus, he went out and bought and installed a TV set
for the bedroom (which I had always resisted) so I can entertain myself from
the comfort of my bed.
In his spare time, he's been grocery
shopping, fixing my meals, mowing the grass, and...what am I forgetting...of
course, cleaning house. (I think the monotony of the hospital routine for 4
days got to him.)
I am OK but in need of company to keep my
mind positive, so for those of you close by, please call and come for a visit.
I may be sitting up or I may be lying down, but I can talk from either
position.
Thanks to each of you for your many
moving and thoughtful notes of encouragement, for the flowers, the calls, and
lastly to my sister-in-law for the sexy bathrobe. Julie
SUNDAY, MAY 9, 2010 10:39
AM, EDT
To my Family and Friends,
It's Sunday, Mother's Day, and I am
sitting outside on our patio. Right across the golf cart path is a 6 foot
alligator (with mouth wide open) lazing in the sun. She and I are worshipping
nature together.
Physically, I'm doing pretty well. I've
got "big girl" clothes on again. I've started short walks outside,
and I can eat whatever I want. I, of course, tire easily and it's a good thing
I enjoy naps and lots of reading.
Speaking of reading, my friend, Ronda,
sent me a book (Defy Gravity) by Caroline Myss, a well known medical intuitive
and author. Myss believes real healing is a function of the Soul. She must be
right, for I can tell you that I am having some very intense conversations with
my Soul right now.
Lisa and Dalton dropped by yesterday and
after some quite enjoyable political sparring with my ultra-conservative 17
year old friend, Dalton, Lisa referred to my current situation as an
"interruption" in my life.
I have, of course, written about my
illness as a speed bump which to me was something to navigate and put behind
me. But the term "interruption" actually served to interrupt my
thinking, and I realized Lisa had just shared some wisdom with me.
An interruption. A break. An
intermission. Interesting. I didn't know I needed an interruption, but the
obvious fact is I have one. So, I find myself "introspecting"
(kinda like prospecting for gold). So, I've moved on from whining to my Soul on
how unfair all this is, and I find myself conversing about the "gold"
in life, and in particular, my life. Interesting.
Before I close, let me get back to the
physical world for a moment. Wednesday, 5/12, Joe and I go back to MUSC in Charleston
to meet with my surgeon. We assume we will be given the details of my
chemotherapy at that time, and I will keep you advised.
REQUEST: If any of you know women who
have been through ovarian cancer and chemotherapy, I would very much benefit
from talking to them. Give me a call or email me.
For now, thanks to everyone for your
outpouring of love and support. It's working. I could never have gotten through
the surgery without your love, and I'm confident I will draw upon it through
chemo, and for the rest of my life.
There is much love for you here,
Julie
WEDNESDAY, MAY 12, 2010
6:09 PM, EDT
Dear Family and Friends,
Joe and I met with my surgeon, Dr.
Jennifer Young, at MUSC in Charleston today, so I have information to pass
along. Our overall reaction is that while chemotherapy will take a lot longer
than we had anticipated, the result should be worth it.
Pathology showed I have stage 3B fast
growing papillary serous carcinoma high grade cancer. Before you have a heart
attack, however, we were told that fast growing cancers are incredibly
responsive to chemo. This translates to fast growing = good. Bet you didn't
know that.
Stage one of chemo will start in 2-3
weeks, once a week for 4 1/2 months. Each treatment will be 3-4 hours. I will
participate in a clinical trial that utilizes 2 of the best tried-and-true
drugs PLUS a new drug that has already completed an initial 10 year study and
shown improved results when used in conjunction with the other two drugs.
Stage two will be maintenance chemo and
will last 11 months, once every 3 weeks. Each treatment will last 1 1/2 hours.
The good news from my standpoint is that
Dr. Young (bless her heart) promises she can keep me comfortable. They have
great anti-nausea drugs now, and she will start me on the cadillac version
(probably because I whined so pathetically?). I will likely be very fatigued
days 2-4 after a treatment but it looks like I'll have 4 days a week to kick up
my heels.
Sandy and Marti, no problem with our
September plans. They can work around our dates.
As to my condition today, if you saw me
you would probably not even know I had had surgery. Gone is the old lady slump
protecting my innards. Back are my brightly colored clothes....and makeup is
back! I'm taking small walks outside all by myself. And...I bought a really
cute wig yesterday that you won't believe is not my own hair.
I still tire easily. I had my hair cut
yesterday followed by 3 visitors during the afternoon. Today I was wishing I
could just curl up in a little ball. That's my big plan for tomorrow. Yeah!
In closing, your prayers and energy are
sustaining me on many levels, and I adore each of you. Being the recipient of
so much love is truly a transformational experience...and you all know how much
I love transformation.
LOL,
Julie
TUESDAY, MAY 18, 2010 11:30
AM, EDT
I am recovering nicely. Joe and I go to
MUSC in Charleston tomorrow, Wednesday, for pre-chemo baseline testing. As you
may remember, I will be participating in a clinical trial. Actual chemotherapy
will start Wednesday, May 26.
My doctor has promised she can keep me
comfortable as far as the nausea goes, and, believe you me, I plan to hold her
to that. As I mentioned earlier, I already have a wig you won't believe. It's
just like my natural hair (well, ok, thicker), so I don't expect any trauma
there.
Joe is also recovering fine. He's simply
amazing. I've tried talking to him about taking care of himself during this
time. I've tried to get him to go out on Fridays to our regular watering hole.
He assures me he is NOT going through anything. He's just doing what needs to
be done. He teases that he's just trying to make sure he doesn't get any
bad reviews on my webpage! As if I could say anything bad about my hero!
Again, before I take leave, your messages, cards,
flowers, food, and visits have served to remind me I have the courage and
the strength to heal.
Joe and I cannot thank you enough for your outpouring
of love. We love you all back equally.
Julie
THURSDAY, MAY 20, 2010 1:48
PM, EDT
Here's what I know about my upcoming
chemotherapy to date.
I will participate in a clinical study at the Hollings
Cancer Institute at MUSC in Charleston starting 5/26. The treatment will
consist of 2 well known and effective drugs along with a 3rd drug that has
already been tested in a 10 year blind study. This new study, among other
things, will evaluate different delivery methods.
I will have an intra-peritoneal (IP) port
placed under the skin in my abdomen and will receive treatment directly into my
abdomen. In addition, I will also receive treatment intravenously (IV) in my
arm. I know. Sounds disgusting. But my surgeon has assured me I will be
comfortable, and with my newly focused, more than normal self-absorbed
perspective, THAT'S ALL I CARE ABOUT RIGHT NOW!
So, Monday, the 24th, we will travel to
Charleston to have the port inserted (again my surgeon assures me she'll keep
me happy and I've already made myself clear about how I feet about that), and
then on Wednesday, the 26th, I'll start treatment.
Joe and I were hoping
I would be placed in the IP group. Apparently, there's no clinical evidence
that IP treatment is more effective yet, but IP is certainly of particular
interest to my surgeon.
I love you all. Stay tuned to my next message. I
have a surprise for you.
Julie
THURSDAY, MAY 20, 2010 2:09
PM, EDT
A FUN ANNOUNCEMENT!
Over the years many friends have
encouraged me to write and share my thoughts with others...and I completely
selfishly and ungraciously ignored them.
Now with the experience of writing for
CaringBridge and receiving your love and encouragement not only for my physical
well-being but also for my writing...I've decided to...of all things, WRITE.
So....I've started a personal blog online
with the help of my dear friends Ronda and Reya. While I, of course, sill
continue to focus on my physical well-being, my blog will allow me to share the
non-traditional, ideas, feelings, and images that make up my spiritual
understanding and philosophy. (All of which feeds into my physical well-being,
of course.)
The blog is titled "A Woman's Search
for Meaning." The address is ASoulConversation.blogspot.com. If
this speaks to you at any level, I hope you will join me there as you have
here. If it does not speak to you, I completely understand. Different strokes
for different folks! I will continue to keep this site up for updates on my
physical well-being.
LOL to everyone,
Julie
THURSDAY, MAY 27, 2010 3:15
PM, EDT
You will be happy (but not nearly as
happy as I) to know that I made it through my first chemo treatment yesterday
in fine style and am feeling normal today! YEAH!
I had every intention of writing
yesterday during treatment with some pithy, insightful, humorous
observations...BUT...they gave me 50 mg of Benedryl and I slept most of the six
hours. What I do remember is I was in a large cubicle by myself with my own TV
and a curtain that could be drawn for privacy. Joe stayed with me until I
felt comfortable, brought me some lunch, and then went out to prowl around
Charleston.
The first hour was Benedryl (to handle
any allergic reaction I might have to the chemo meds) and the nausea
prevention. After that the real stuff started and I went to sleep. I woke up
long enough to nibble on lunch and occasional snacks.
Joe returned having spent the afternoon
in an Irish bar choking down two Black and Tans (beer), grazing on Irish food,
solving the problems of the world with the bartender, and reading. I know. It’s
a hard job, but somebody’s got to do it. I, for good measure, slept the two
hours home.
Now to get serious for a moment. When I
think over all that has happened in the last 2 months and how well I’m doing, I
want to take this opportunity to acknowledge where my strength comes from.
My always-present connection with my
Creator and my Soul, without which I would be truly be a lost woman,
My love and admiration for my husband,
Joe, without which my life would have little meaning,
The love and support of two long time
friends, Linda and Ronda, without whom I would be a crazy woman,
And finally…YOU…my family and friends all
over the country. Your prayers, energy, good wishes, flowers, cards, night
gowns, lotions, food, books, webpage comments, and music have all served to
remind me that I am loved and I am a strong woman.
Receiving your love in it's many
expressions the last 2 months has been and continues to be one of the greatest
gifts of my life. Whenever I am anxious or afraid of what’s next, I think of
you and your belief in me and I instantly pop out of that nasty fear place and
return to a loving place where I am aware once again of my strength and courage
and my place in this changing world. Now there’s a gift worth receiving! My
loving thanks to each of you.
There is much love for you here,
Julie
THURSDAY, JUNE 3, 2010 9:02
AM, EDT
Last week (Wednesday to Wednesday), was
my first chemo treatment. Wednesday thru Friday I felt just fine. Saturday thru
Tuesday I was very fatigued. Got up with enough energy to walk but that was the
high point of my day!
I was discouraged because I had been told
that my fatigue would most likely be days 2-4. When I didn't have fatigue by
day 3, I thought I had it made! Not to be.
We did have a highlight on Sunday,
however. Joe and I when to a Memorial Weekend pool party and stayed for 4
hours! (Our hosts graciously gave me a bed to lie down when needed.) It was
great to be out, enjoying good company and food, and, most of all, watching my
beloved Joe have a good time.
Yesterday I had my second treatment and
got some potentially good news. My treatments will run in 3 week cycles for 4
1/2 months. The first week in each cycle will be hardest. That's when I get all
3 drugs including the trial drug. The other two weeks, I only get the two
proven drugs...AND...wait for it...most people do not experience much in the
way of side effects! YEAH!!!! No guarantees, but I feel good today!
I still can't drive after my surgery, and
it's been 5 weeks. The rule is I have to be able to stomp my right foot down on
the floor without hesitation before I can go back to driving. That's because I
have to be able to stomp on the breaks without hesitation, and if my body knows
it's going to hurt, there will be hesitation. Hopefully, one more week will do
it....it would be nice to run errands without interrupting someone else's schedule.
One last note: I've been told I will lose
my appetite...but no problem yet. I'm hungry most all the time! Joe says it's
no different than before, and he's going broke trying to feed me.
Thanks to each of you again for your
continuing expressions of your love and concern.
There is great love for you here,
Julie
SUNDAY, JUNE 6, 2010 10:36
AM, EDT
YAHOO! I hit a milestone yesterday!
5 ½ weeks after surgery, I drove my car again! Success and freedom—all in one 4
mile, 1 hour excursion to get my nails done. (Doesn’t take much to entertain me
these days!)
Today, however, I have much bigger plans.
It’s going to be a 15 mile ride to Barnes and Noble with a stop for LUNCH...all
by myself. Speaking of food reminds me of what I haven’t lost: 1) my appetite,
and 2) my hair. Thought you would enjoy knowing.
NOTE: I mentioned earlier that I had
started a new blog to express my spiritual philosophy. Below is my input for
today. If you are so inclined, please join me at
http://asoulconversation.blogspot.com/
I DEFINE ME, NOT CANCER
Every morning I
walk alone. This time for exercise also turns out to be a perfect time for a
conversation with my Soul. Today I was thinking/sharing my thoughts about
cancer and how quickly it had defined and limited my life. I didn’t like this.
From now on, I thought, I would always be a cancer patient or a cancer
survivor. I wanted to be so much more.
And then, I began to hear those thoughts
that were not mine alone. I almost always do—bless my big beautiful Soul. I
remembered that I was much more than just my physical body, that I have a
spiritual “body” also.
And so, I decided, cancer does not define
me; "I" define me.
TUESDAY, JUNE 8, 2010 8:29
AM, EDT
I'm glad to hear I'm inspiring you
guys...but the truth is you are inspiring me. I love to read your comments and
am getting quite a kick out of writing for you. Everyone knows I'm an instant
gratification kinda girl, so the Internet is perfect for me. I write. You
write. I love it.
You should know that at least for right
now I'm looking and acting pretty normal...well, I mean normal for me.
Joe thinks I'm an alien. :)
Just so you know, I get up every morning
feeling fine. I walk a mile or so. Come back and have breakfast. Write on my
blogs. Take a shower. Get pretty. Run errands (never thought errands could be
meaningful). Eat. Read. Whatever I want!
And...I have a really good excuse if
there's something I don't want or feel like doing. I just lie down......
I have my lean, svelte, body back (don't
recommend the diet). I still have my hair. No nausea. NONE. The only
things I notice different are a wobbly stripe down the center of my stomach
from my surgery (the least my surgeon could have done was made a straight line,
for heaven's sake), a sore bump on my right side where my chemo port is, and I
tire more easily.
You don't need to be worrying about me.
It could be a lot worse, folks! I'll let you know when I need (or want)
sympathy...trust me.
Tomorrow, Wednesday, Joe and I go to
Charleston for another 2 hour treatment and field trip. Last week's trip was
wonderful, and we plan to do the same. Treatment. Lunch. Bar. Drive back to our
beautiful home. Think about it.
Love to you all,
Julie
MONDAY, JUNE 14, 2010 12:09
PM, EDT
OK. I'll admit it. I've
been avoiding you. The reason? My hair is falling out. Turns out this is pretty
confronting. (You know how much I like to look good.) I'll get past this part,
but right now I just thought you would like to know I DON'T LIKE IT and the
thought of my new wig isn't helping.
I'm having a PITY PARTY…a
CONSCIOUS, time limited party, not a way of life. I learned the value of
having a conscious pity party years ago, and over the years have enjoyed quite
a few. Making my pity parties conscious keeps me from wallowing. During a pity
party, I'm not brave, enlightened, or strong, and I complain loudly.
So, I figure you might like
to see how my conscious pity party about my hair loss is going.
INTERNAL PITY PARTY
CONVERSATION
I’m angry.
I think this is totally
unfair.
I was hoping I would
somehow escape being bald.
I was delusional.
It's embarrassing.
I don't give a d__n about
my new wig. I don't want it.
I want my hair.
I don't want to look
sick.
I don't want other people
to think I'm sick.
I hate the word sick.
I WANT TO LOOK GOOD!
I’m sad.
So, I’ll let thoughts like
these flow for one week and acknowledge their validity. And then I’ll
consciously end my pity party and remember I’m not my hair.
You may be wondering how you
can help me. Well, your only job for the next week is to get how hard this is
for me. And…if you have questions about the dynamics of a conscious pity party,
let me know.
There is great love for you
here,
Julie
WEDNESDAY, JUNE 9, 2010
6:24 PM, EDT
Three chemo treatments down. Fifteen to
go. We're making good progress. Last week, I had no side effects except for a
consistent, mild, fatigue. No nausea, No hair loss. No appetite loss. No pain.
No suffering. This week I expect to be the same since I had the same 2
drugs today. Enough about how I feel.
I prefer to share for a minute about how
I THINK about this cancer stuff…specifically, MY cancer stuff.
1. I
believe I have a choice every minute of every day as to HOW I THINK about my
life (how I interpret it). I may not always FEEL like I have a choice grant
you...but eventually I always remember I do. Now I’ll admit this involves
a high level of personal responsibility, and I will admit there is good new and
bad news about this approach.
a. Bad
News. There’s no one else to blame. THIS IS BIG.
b. Good
News. Assessing blame is not the same as assuming personal responsibility.
Holding myself responsible for my thoughts means I choose to find
interpretations that give me peace (as opposed to listening to interpretations
that terrorize me).
2. Soooooo,
here’s my cancer interpretation “choices” for your reading pleasure:
a. Cancer
= a temporary condition that is being successfully treated
b. Chemotherapy
= a physical process to purify my body and return me to good health
c.
Fatigue = my body letting me know it needs me to
rest during deep healing
d. Trips
to Charleston for chemo = Field Trips!
e. Visits
with friends = a love therapy session
For
me it’s an exhilarating challenge to come up with fun, creative interesting
interpretations. Changing how I think changes my experience. If you would
like to join me in the fun, suggest interpretations for my consideration...I'm
sure I've forgotten some very important ones in this quick note.
There is great love for you here, dear
ones.
Julie
MONDAY, JUNE 14, 2010 9:11
PM, EDT
Oh, my God (OMG)! You guys are sooooo
wonderful! Your responses to my pity party update today are so healing! Thanks
for getting this is NOT FUN. Thanks for making me laugh (big earrings, that's
great, Ann), and thanks for reminding me I'm loved with or without hair!
I will finish out my PPP (Pity Party
Pout) in great style, but because of you guys, I can feel my sense of humor
returning. I think I'll go out and find outrageous somethings to put on my head
to entertain me. Anyone who wants to join me, let me know.
OR...OR...perhaps I will decide I look
like Demi Moore when she shaved her head for GI Jane...now that was sexy!
And, Sandy, you're right. I am planning
on having a thick head of curly beautiful hair when all this is over!
What a wonderful thing this webpage is
for me. All I have to do is let you know I need you, and...you're here for me.
Thank you to my sister, Pamela, who suggested it, and thank you to my friend,
Marti, who implemented it. You two have only yourselves to blame for creating
this writing monster!
I'll keep you advised on the progress of
my PPP. I love you all madly,
Julie
FRIDAY, JUNE 18, 2010 11:42
AM, EDT
Greetings! Yesterday (Thursday) Joe and I
had another field trip to Charleston for treatment. (I know. It’s usually on
Wednesdays, but I saw a different doctor [the dean of the GYN oncology dept)
yesterday because mine is out of the country.)
Yesterday’s treatment was the “big” one
that comes around once every 3 weeks. I thought they were going to be able to
reduce the Benadryl as they had for the “smaller dose” 2 weeks, but no such
luck. So, I slept a drugged sleep for 4 hours. Great. The good news is that
this time I didn’t ALSO sleep for the two hour drive home and then 10 hours
over night!
I had some interesting insights from
yesterday.
1. 1. I
actually look forward to the treatments…because it means I am checking off one
more treatment. I’ve now completed 4 of 18. Slow but steady wins the race.
2. 2. I
don’t feel sick. I have a condition and it’s being successfully
treated. So much for me today.
ABOUT JOE. There’s something you guys can
do for him. (He doesn’t read my posts or your comments, so he won’t know I’m
asking you to do this, and please don’t mention it to him.)
Joe’s commented several times lately that
while he certainly understands everyone’s desire to know how I’m doing, he’s
getting awfully tired of talking about it.
So, the what you can do for Joe is to
stop asking him about me. I hope this doesn’t sound awful, but he's getting
overwhelmed with inquiries about me. Talk to him about other subjects. You know
he loves to talk.
If you want to know more about how I’m doing than I provide
on this page, PLEASE email me directly. julieharbin@sc.rr.com.
Emails are easy for me. I look forward to
getting them, and I certainly understand the desire and need for you to make
sure I’m OK. And I love hearing what’s up with you and your loved ones.
Keeps me feeling connected. I trust you understand my request on behalf of Joe
(no matter how well or how poorly I communicated it.) Thank you all for being
here for both of us.
There is great love for you here,
Julie
SUNDAY, JUNE 20, 2010 8:33
AM, EDT
As you know, Joe and I go to Charleston
once a week for my treatments. We elected to do this in Charleston (a two hour
drive both ways) rather than in Murrells Inlet so I could take advantage of a
clinical trial.
All along neighbors have offered to drive
me to Charleston for Joe and give him a break. (This is no small offer on their
part as the trips vary from 7-12 hours by the time all is done.)
In the beginning, of course, Joe and I
needed to make these trips together. Now, a month into treatment, we are
both comfortable with the people and the process. A very dear neighbor of
ours, Nancy, volunteered to arrange and coordinate "drivers" for me.
Right now, she has the next 9 weeks taken care of for us! Can you imagine?
I've been on the “giving” end many times,
and now I'm on the “receiving” end. You wanna know something pretty neat?
The distinctions between who’s giving and who’s receiving are blurring. From
past experience, I knew that when I gave I also received. Now I know when I
receive, I also give. And that’s a beautiful thing, my friends.
Whew! It took a while today to figure out
how to put into words what I am experiencing.
There is great appreciation and love for
you here,
Julie
TUESDAY, JUNE 22, 2010 9:16
PM, EDT
Glad to have a second Week #1 big
treatment behind me! The treatment's no problem; it's the mind-numbing fatigue
afterwards that's hard to take. But...now I have 2 weeks of
"little" treatments!
Remember I told you about my neighbors
volunteering to drive me to Charleston for my treatments? Well, tomorrow is my
first treatment "adventure" with someone else than Joe. Nancy and
Bob. Bless their hearts. They're picking me up @6AM, and I'm looking forward to
their cheerful company.
See what you guys from out of town are
missing?
:)
Julie
WEDNESDAY, JUNE 23, 2010
3:04 PM, EDT
Well......a funny thing happened on the
way to chemo. Actually, not so funny. Grrrrrrrr!
Short Story: CHEMO DIDN'T HAPPEN TODAY! I
have to go back AGAIN tomorrow!
Long Story: Complicated and perhaps
TMI? If you want the details, read on. Last week's treatment #1 was on a
Thursday instead of a Wednesday because my doctor was out of the country, and
the replacement doctor only sees patients on Thursdays. I was told I would only
see this doctor once, and then would return to seeing mine on Wednesdays.
Today I learned that I was supposed to
continue this one whole cycle of treatments (#1-3) on THURSDAYS. The reason? To
give my body a full week to recover between treatments. Then after an easy
treatment #3, I will go back to Wednesdays.
The problem?
1. NO ONE TOLD ME! Grrrrrrr!
2. My neighbors, Bob and Nancy, picked me
up at 5:50 AM and drove me to Charleston for a treatment that didn't happen.
That's 4 hours of driving.
3. I wanted to chew somebody a new one!
The good news?
1. Bob and Nancy are very gracious.
2. Nancy and I shopped the Slave Market
while Bob waited in the car. (For those who don't know,the Slave Market in
Charleston is NOT where slaves were sold; it is where slaves shopped. Now it is
a delightful, open air, vendor market.)
3. Then we had a wonderful lunch at the
famous Hominy Grill before heading back.
I just love Charleston...and I love my
neighbors for enjoying the day with me! Kiss, kiss.
Your
oh-goody-two-field-trips-to-Charleston-in-one-week correspondent,
Julie
P.S. Forgot to tell you—my Hair Loss Pity
Party officially ended Sunday. But because you guys were so loving, supportive,
and funny, I had a hard time making the party last that long! :)
THURSDAY, JUNE 24, 2010
8:21 PM, EDT
Back to Charleston Joe and I went this
morning for my #2 treatment (the one that was supposed to happen yesterday!).
Everything went off as anticipated this time...except for one thing.
I slept through this morning's 2 1/2 hour
treatment, woke up long enough to enjoy a nice lunch with Joe, and then
slept all the way home. In the past, I haven't slept during or after the
#2 or #3 treatments (a fact I attribute to the 25 mgs of Benadryl I'm
given at #2 and #3 treatments vs. the 50 mgs of Benadryl at #1 treatments.
Zzzzzzzzzz).
I am proud to say, however, I have been
awake ever since we arrived home. And I’m positive a surprise comfort food
dinner brought in by friend and neighbor, Dotti, was instrumental in helping my
body recover! It may have also helped Joe recover from something for he was
certainly no slouch cleaning his plate! Jeez, you’d think his wife starved him
to death! J
Speaking of food. Those of you who know me
well know that while I may be "small" of stature, I eat like a horse.
Always have. (And I'm fully aware that some of you have a love/hate
relationship with me because I eat like a little piglet. It's actually not my
fault; it's my mother's fault. She's 91 and still eating like a horse! :)
Anyway, back to my point about food. I
was told I could expect to lose my appetite and would have to work on
maintaining my weight. Now, please don't grind your teeth when I tell you
this...5 weeks into treatment I'm still eating like a horse. I'm ravenous. And
today I learned that while many lose their appetite with chemo, some actually
gain weight! I understand it's not fair!
Now, I trust you know I’m just playing
with your minds a little here. I am so grateful to be maintaining a healthy
weight, and I pray this will continue. As I’ve said to many of you…I don’t feel
sick. I feel like I have a condition, and it’s being successfully treated. It’s
just going to take a while…
There is much love for you here,
Julie
FRIDAY, JULY 2, 2010 6:56
AM, EDT
UPDATE TIME! I had another fun field trip
to Charleston for lunch yesterday—this time with my friend, Dotti. We went to a
delightful little restaurant called “Saffron” on East Bay Street and enjoyed a
Mediterranean lamb dish. Yummy. Oh...and before hand we did make it by MUSC for
a treatment.
#6
out of 18
TA
DA!
(I'm
1/3 of the way through the intensive chemo.)
SO, HOW AM I DOING? There’s
nothing to worry about, my friends. Without exception, those who see me cannot
believe I have anything "wrong" with me. My skin looks great (if I do
say so myself), I’m holding my weight with no problem, and my wig covers up the
only thing that doesn’t look great. The only effect that’s bothersome is
fatigue—which I have in varying amounts every day, but I’ll take fatigue over
nausea any day!
It's interesting to see that my body
responds differently each time to the treatments. After the 1st long treatment,
I had 4 solid days of couch time. After the 2nd long treatment, I only had 3
half days of couch time. The 3rd long treatment will be next Wednesday. Every
time's an adventure.
After the short treatments, I also vary
in reaction. Mostly I just feel fatigued enough to sit down for 30 minutes
after being active for a couple of hours. After the 3rd short treatment,
however, I had couch time the whole next day...and then back to 'normal' for
the rest of the week—30 minutes respites when needed
Last week, however, I came down with the
respiratory crud a lot of people are having and didn't feel good all week.
Disappointing. I am happy to report, however, that the crud didn't turn into an
infection, and I didn't have take an antibiotic. Way to go immune
system! I really hate having to take an antibiotic!
As I mentioned earlier, I will return to
my Wednesday treatments next week. This one will be a long treatment day,
but I only have six of them, and this will be #3. Half way through with those
kick a__ treatments! WAHOO!
You may remember that I now have a
different driver each week, thanks to my neighbors, and I am enjoying this
immensely. It gives Joe a day to himself AND I have different entertainment to
look forward to each week!
Before I close, I know most all of you
know I was caring for my mother and brother before all this happened. I am
happy to report that both are doing quite well. My cousin and her mother (my
mom’s youngest sister) are looking after my mom and my sister is looking after
my brother. I talk to both on the phone and am able to check on them
frequently.
I feel very blessed to have family willing and able to care for
them while I focus my time and attention on healing myself. A very personal
thank you to cousin Peggy, Aunt Rubye, and sister Pamela.
There is much love for all of you here,
Julie
P.S. If you have specific questions or concerns
that I haven't addressed, let me know and I’ll be happy to respond.
THURSDAY, JULY 8, 2010 3:13
AM, EDT
My 7th weekly field trip to Charleston
yesterday will be one I'll remember for a while. Everything turned out fine—but
there was a little drama leading up to it, and I don't like drama.
DRAMA. Late Sunday afternoon on the 4th,
I found one of my port incisions was infected. Not good. A call to the MUSC
emergency GYN oncologist resulted in a visit to my local emergency room. Great.
The good news is that I got to see a
(very cute) doctor who in conversation with MUSC determined I could take an
antibiotic and wait until Wednesday for further analysis.
(Side Note: Joe is beginning
to express suspicion about the frequency with which I find cute, male doctors.
I hope this doesn't mean I'll have to work in some not-so-cute ones...cause I
really like the cute ones!)
To continue. Not knowing what impact
the infected port incision might have on my Wednesday schedule and
still feeling rotten from a 10 day old, nasal congestion, I reluctantly
called my neighbors, Cindy and Steve, and postponed our plans for them to drive
me to Charleston.
END OF DRAMA.
Wednesday was a 15 hour day for Joe and
me, but everything turned out great. We learned things like the incision
infection and nasal congestion are to be expected during treatment. They are to
be reported, treated, and monitored...but not to be worried about.
GOOD NEWS.
Blood work
good! The CA-125 ovarian cancer test shows negative cancer activity
at this point, and other tests show good kidney and liver function. This
means my body is tolerating treatment quite well.
So, the little drama
turned out positive. Joe and I are happy with the results so far, and we know
you share those feelings. We thank you again for your continuing prayers and
positive energy. I absolutely LOVE your comments.
There is great love for you here,
Julie
THURSDAY, JULY 15, 2010
8:27 AM, EDT
A successful #8 field trip to Charleston!
My neighbor, Hilda, picked me up at 5:45 AM sharp. I find this amazing for I am
so NOT an early morning riser. Neither, it turns out, is Hilda, but—we marched
forth in good spirits, accomplished our mission, and rewarded ourselves with
lunch at RB’s Restaurant at the Shem Creek in Mt. Pleasant.
My special amusement for the day turned
out to be the 4 times we crossed the Ravenel Bridge—two expected and two
unexpected. OK. Hilda and I were talking coming out of Shem Creek after lunch
and not paying attention to our way. And no, neither of us had had an adult
beverage. We just both love the Ravenel Bridge! Zoom. Zoom.
Good News
My doctor has agreed to alter my
treatment schedule to allow Joe and I to visit our daughter and grandchildren
in Maryland in August and to spend our 20th anniversary with friends in
Rehobeth Beach in September.
This is good news for several reasons.
1. 1. To
accommodate the time needed for both trips, my doctor will drop the two short
treatments planned for those two weeks. Yeah! I get two breaks!
2. 2. By
dropping two treatments, the total of my weekly treatments changes from 18 to
16 weeks.
3. 3. That
means I’ve completed 8 out of 16!
4. 4. I’M
HALF WAY THROUGH!!!!!!!
I trust this finds you treating life
well.
There is great love for you here.
Julie
WEDNESDAY, JULY 21, 2010
8:04 PM, EDT
I HAVE GOOD NEWS TO SHARE WITH YOU!!!!
My neighbor, Mary Jane, drove me to
Charleston today for what turned out to be a very successful field trip. We got
all my questions and concerns answered (and we only went over the Ravenel
Bridge the requisite two times). Seems we are an excellent team—two Type A
women types. Hard to beat!
AND...AND...we rewarded ourselves with a
delicious $9 (believe it or not) lunch of salad, salmon, and grilled veggies at
Blossom's, one of Charleston's famous elegant restaurants. Can you believe the
price?
GOOD NEWS
(not necessarily in order of priority)
1. I've completed 11 out 18 treatments. 7
weeks/treatments to go—3 long ones and 4 short ones. Yahoo!
2. Final weekly treatment date: 9/22/10!
I previously understood my weekly treatments would end in mid-October. Not sure
how I made that up, but I did! After that I will have a 1/2 hour treatment of
new drug only, once every three weeks for 11 months. Little to no side effects.
:) :) :) (ear to ear!)
3. At my request, my doctor reduced the
steroids in my healing 'cocktail.' Steroids help control nausea, but...they
also make me HUNGRY which makes me EAT and GAIN WEIGHT. And here I thought
I would lose my appetite, become a shadow of my former self, and have to fight
for every pound. HA! I will soon be rolling down to Charleston if my appetite
doesn't back off.
4. I have an appointment to see a ENT
doctor tomorrow. For 4 weeks now I've whined and complained about an
unidentified nasal virus/congestion/crud/whatever. This "whatever"
hasn't responded to OTC drugs or antibiotics and is making me miserable. If
it's not fixed soon, I plan to cut my nose off. The rest of me is doing much
better, thanks for asking.
5. My blood work continues VERY GOOD.
6. Some of the nurses have been having
trouble finding a good vein for my IVs. The last two weeks this have resulted
in my being 'stuck' 6 times resulting in bruises that take weeks to go away.
Today my nurse, Carmen (bless her heart), hit it on the first try. I'm
sure you understand my calling this good news!
Gotta go, dear ones. There is great love
for you here!
Julie
TUESDAY, JULY 27, 2010 5:19
PM, EDT
I have GOOD NEWS and I have NOT SO GOOD
NEWS. Which do you want first? The good news? Okey, dokey. (I figured you'd be
into instant gratification...)
GOOD NEWS: I was incorrect with my
numbers last week. I forgot I'm being excused for 2 short treatments. (I never
claimed to be competent with numbers.) This means after tomorrow's big treatment,
I will have completed 10 out of 16 (not 18) total treatments! Only 2 more big
treatments and 4 short treatments to go!!!! But...then...who's counting?
I have to admit this treatment s__t is
taking everything I've got physically and emotionally. I'm dragging energy-wise
and am looking forward to ditching these weekly treatments. I'm so glad I
understand ATTITUDE IS EVERYTHING!
NOT SO GOOD NEWS: I visited my mom last
weekend. She is very weak with low red blood cells and now pneumonia. Saturday
the doctor told me the antibiotics might cure the pneumonia over time but
it would not give her any quality of life back. Her sister and I made the
decision to stop the antibiotics and keep her comfortable. The doctor estimated
she had 2 weeks to live.
On Sunday she vacillated between being
happy to see me and going in and out of obsessive, repetitive behavior. Monday
I called to check on her and was told she was sitting in bed reading the
newspaper...
So, those of you who know my mother well,
know she has rallied many times before. I literally don't know what to believe
or feel at this point.
I can hear what you're thinking. What
a horrible year Julie is having! Well, it's not just me. We all have
faced difficult years, and we all have come through these years stronger and
more loving. Many of you are also facing painful personal and/or family
challenges of your own right ow. (You're just not blabbing about them on the
Internet like someone else we know and love!)
I know from personal experience that it
takes courage to be me...and from that I can extrapolate that it takes courage
to be you. You all make me proud to know you.
LOL,
Julie
THURSDAY, JULY 29, 2010
12:46 PM, EDT
LOTS OF NEWS FROM YESTERDAY'S VISIT WITH
DOCTOR.
1. I am officially in
REMISSION! YAHOO! :)
2. That doesn't mean I get to skip the
rest of my treatments. :(
3. Interesting factoid: Remember the
CA-125 test that showed no cancer activity some weeks ago? Well, yesterday my
doctor disabused me of the idea of fixating on that test result. Why? They've
found that relying on that test alone in the past resulted in much more chemo
and less years in remission. :( Now, they still use the test but rely
more on symptoms to tell them where I am. Interesting, huh?
4. My #1 long treatment yesterday kicked
my b__t. I slept through most of the treatment and the two hours drive home,
and then slept for 11 hours last night. Arrrrggghhhh! Did anyone get the
license tag of the truck that hit me? :(
5. Thank God I get to miss two treatments
(one this coming week and one the first week of September. I need a break. :)
6. My doctor said the September 22 end
date is not a firm date. It will all depend on how I'm doing. :(
Apparently, she doesn't realize who she's dealing with and that ATTITUDE
IS EVERYTHING! :)
7. My mom appears to be doing a little
better since we took her off the antibiotics for the pneumonia. Wonders never
cease! :)
8. Joe and I leave tomorrow for Maryland
to visit our daughter, son-in-law, and grandchildren. Now you may wonder why we
would visit at this time given my condition. The answer is Jenny has no baby
sitter for this upcoming week, and Joe wanted to help her. I decided it wasn't
a good idea for me to be alone for a week, so we worked out a compromise (isn't
that what relationships are all about?). Joe and I will stay in a hotel where I
can be with everyone and then retreat from the noise and get all the rest and
quiet when I need to. And Joe? He gets to play with the grandkids to his
heart's content. Pretty cool, huh? :)
I just love all your comments. Keep 'em
coming for they are like fresh water to me.
There is great love for you here.
Julie
MONDAY, AUGUST 2, 2010 9:52
PM, EDT
Just a note to let you know your comments
have saved me once again!
Now don’t get me wrong. I'm happy I’m in
remission...but...I’m not happy I feel like crap after a BIG treatment
Wednesday. It’s Monday evening for crying out loud. Now, don’t get worried. I’m
not in any pain. I just feel very, very weak. I don’t like it, and I want to
feel better.
So, in trying to figure out what would
make me feel better—I thought of YOU!!! I went to CaringBridge to write and
found your wonderful comments. You guys are the best. Here’s some personal
notes back:
____________________________________________
(Sister) Vicki: Thanks for your
enthusiasm for me and your hugs at Dad’s funeral. I miss you.
(Astrology friend) Lynn: You go,
girlfriend. The best way to honor Shannon’s life is to cram everything that
makes you happy into yours.
(Political activist friend) Pam: You’re
so cool. Dinner with newly elected officials? Sounds like a great idea to me.
October?
(Cousin) Tom: I knew all that teasing was
you loving me! Loved you then and love you now!
(Political activist) Cindy: Your taking
the time to encourage me when dealing with your mom’s cancer is simply amazing!
I love knowing you and working with you and Donna.
(Dear, dear friend) Sandy: I would look
sexy with a mop on my head! You are such a hoot and your life so outrageous. I
treasure you.
(Political organizer) Becci: Yep. This
year didn’t work out the way either of us had planned. Glad I was able to do
something to help. BTW, the Horry County Sun News called today to verify my
letter to the editor.
(Precious friend) Mickie: Love your humorous
encouragement and updates on Don and the little fuzzy daughter. You’re a hoot
along with Sandy!
(Friend-counselor-webpage designer
extraordinaire) Ronda: Your daily calls have kept me afloat. I’m so fortunate
to have you in my life. BTW, when did we get to be so smart?
(Holistic teacher-karmic
astrologer-counselor-friend) Linda: The bigger picture you provide for my life
has saved me from drowning in despair more than once…and certainly this time.
What would I do without you?
LOL to everyone,
FRIDAY, AUGUST 6, 2010
10:42 AM, EDT
Joe and I've had a very nice week in
Frederick, MD visiting Jenny, Jeff, and our 3 grandkids. Wednesday was
especially nice since I was here and...NOT in Charleston getting another
treatment!
I was in desperate need of a break as I
feel fatigued and weak all the time now. This is to be expected, however, as I
progress toward the end of my treatments. I figure at this rate, I'll be
dragging my sorry ass over the finish line. But I will drag it over one way or
the other!
Today we leave for Annapolis to visit my
friend, Ronda, and her husband, Carl. You can picture us at Galway Bay (Joe's
all time favorite Irish bar) by about 2 pm for his ritual Black 'n Tan's and
our crab dip, cakes, etc. Wahoo! We will head for home Monday.
Have a great weekend. LOL to you all.
Julie
WEDNESDAY, AUGUST 11, 2010
5:44 PM, EDT
Well...it's NEVER dull when it comes to
my Charleston trips, and today was no exception. My neighbors, Phyllis and
Larry, cheerfully picked me up at 5:45AM, delivered me safely to MUSC at
7:40AM, and by 9:30ish we were on our way out the door having been denied
treatment because my white blood cell count was way too low.
To tell you the truth, I couldn't decide
whether to cheer or cry. Should I be happy for another week without a
treatment...or should I cry because I couldn't mark off another
treatment?
And, BTW, what the heck did "very
low white blood cell count" mean? As soon as I got home, I was paging my
very own MUSC "contact" to get an explanation...and here's what I
learned:
A low white blood cell count indicates my
immune system is compromised and I am more at
risk of infection. However, I am not to worry.
White blood cell counts go down during chemotherapy and mine have been down
before...just not this far down.
I am to be careful about being with
people who are obviously sick. If I get sick, I have to report that to MUSC. If
I have a fever of over 100.5, I have to go to a local emergency room. Oh, and I
should be careful about eating raw foods that may not have been washed
sufficiently.
So, to say I was surprised with today's
outcome is an understatement. The last thing I said to Phyllis and Larry this
morning as I went upstairs to have my blood drawn was "Oh, I don't have to
worry about my blood work. It's always great." Ya think maybe I jinxed
myself? Just kidding.
Now the only thing I can do is wait and
see if my white blood cell count recovers enough for a big treatment next
Wednesday. Keep your fingers crossed because I'm close to the end of this saga
and I want to see it end sooner rather than later...
Before I end, I know you are waiting with
bated breath to find out where we had lunch. Since we were thrown out of MUSC
early, we decided to drive to Sullivan's Island where Phyllis and I had never
been and where I had heard there were some very good restaurants. Well...we
found about 8 restaurants in downtown Sullivan's Island, 5 of which were not
open for lunch. We settled on a Mexican bar and some half decent fish tacos.
The best thing about the trip was
Phyllis's and Larry's cheerful, accepting company and entertainment. Nothing
upsets those two and it was a pleasure to spend time with them!
LOL,
Julie
MONDAY, AUGUST 16, 2010
5:22 PM, EDT
NEWS FLASH! I'm
in the dumps! It's been 4½ long months since diagnosis. I hate cancer. I hate
chemotherapy. I hate being tired and weak. I hate my life. My good attitude is
gone! I exchanged it for a rotten attitude...and I’m proud of it.
Just wanted you to know. I mean, how
often in life does one get to write to ALL their family and friends at the same
time and declare their emotional status in the toilet?
(Doorbell rings…)
In the midst of this cathartic temper
tantrum, two very dear neighbors dropped by with books and food, Dotti and
Cindy. Before I knew it, I was laughing and…laughing is good.
So, I’ve decided. I could use some help
making these last 5 weeks GO AWAY. If you live nearby and can be flexible, call
me. Depending on how I feel, we can go out. We can stay in. We can play cards
or board games. We can have adult beverages. Anything to distract me from my
rotten attitude.
(Marti, Ralph, Sandy, and Jorge: You and
Rehobeth Beach will be my entertainment and distraction the first week of
September! Yahoo!)
Somewhere out there my good attitude is
wandering around…probably feeling unappreciated and pouting because I kicked it
out. 4½ months exceeded my ability to stay positive. If you should run across
my good attitude in the Universe, please find a way to keep it for me until I'm
ready for it to return.
Ahhhhhhh. Feel some better. There’s
something healing about communicating authentically (truthfully and without
judgment). .
If everything goes as planned, I have two
more long treatments (one this week) and three more short ones. 5 more weeks. I
had pictured racing across the finish line in fine style, but...it looks like I
will have to be satisfied dragging what’s left of my carcass across.
Keep your fingers crossed and the prayers
coming that I can be treated Wednesday. If I can't, it's my understanding I
will have to make it up as it's a long treatment. RATS.
As always, there is
great love and appreciation for you here,
Julie
TUESDAY, AUGUST 17, 2010
8:49 PM, EDT
Thanks to everyone who left me a message
after my last update. It works to hear from you. I am still tired of being
tired, BUT...I do have good news to share with you.
My white blood cells are back up to
satisfactory level, so I will be treated tomorrow in Charleston. This should be
my next to the last (believe it or not) long treatment.
I may be slow...but I always get there!
Julie
THURSDAY, AUGUST 19, 2010
3:04 PM, EDT
Ummmmm! Yummy! Your messages are so good
to read. Each of them makes me think of you and that makes me smile. Funny how
that works. (BTW, my wonderful brother-in-law, Randy, found my good attitude
and is keeping it for me until I'm ready to claim it again.)
OK. Time for a report on yesterday's
next-to-the-last #1 long treatment!
We left home at 6:30AM and returned
around 7PM. Long day. I had thought since my Benadryl was reduced I would be
awake more and could read and use my computer. NOT SO! I slept most of the 4
hours once again. I did remain awake enough to entertain Joey on the way home,
but then slept 10 hours last night.
My doctor was very pleased with my white
blood cell count and said that it might be down again for next week's #2 treatment,
so....
Whoever is taking me next
week, I will have my blood tested at Waccamaw Hospital Tuesday and will know
late that afternoon as to whether or not treatment on Wednesday is a go or not.
Will call you.
To continue, my doctor was very
sympathetic and understood the tears and loss of my good attitude (I got a
hug). She explained the loss was to be expected. Chemo is very difficult
especially toward the end as the effects are cumulative (increasing fatigue,
weakness, sadness, and anxiety). As I put it, it flat out takes guts to get
thru this crap.
She also recommended I start seeing a
therapist for Post Traumatic Stress Disorder! When we expressed surprise, she
noted PTSD is an anxiety disorder caused by a traumatic event where you
experience your life at risk and a loss of control over what's happening to
you. (Sounds familiar to me!)
She noted the 3 weeks of fear of the
unknown before my surgery, the shock and pain of the surgery, the 4 weeks
of fear of the unknown before chemo, and the 4 1/2 months continuous stress of
the chemo itself. Needless to say, by the time she finished her explanation I
was very stressed!!!! But, I'm not stupid. I have already scheduled an
appointment with an excellent therapist tomorrow.
One interesting result of PTSD as it may
apply to me is super-sensitivity to sounds or lights. I cannot tolerate loud
sounds and actually have to leave parties, restaurants, or bars because of the
loud noise. This is especially frustrating because I want and need to be with
people right now.
To continue on with my report, Joe drove
me and it was a long day so there's no interesting restaurant to report on. It
was Arby's drive by on the way home.
ONE LAST NOTE: We also found out that
after my last treatment 9/22, I would have a CT scan to check my chest,
abdomen, and pelvis. Assuming all is well, I go into maintenance chemo for 11
months which should be a breeze. 1 drug, once every 3 weeks, with little to no
side effects. Sounds like nirvana to me!
Bottom Line:
1. My doctor is pleased.
2. Joe is pleased.
3. I hate everything.
4. I only have 1 more long treatment and
3 more short treatments.
5. I am making good progress.
6. Randy has found my good attitude.
Keep those comments coming, my friends.
With your help I may not have to drag my ugly carcass over the finish line. I
am just be limping! :)
I love each and every one of you,
Julie
TUESDAY, AUGUST 24, 2010
8:45 PM, EDT
HELLO! I'm proud to report that my brave
little white blood cells recovered nicely, and I'm off tomorrow to Charleston
for a (short) #2 treatment! My neighbor, Myra, and I will lift off about 6:30
am. ETA MUSC by 8:30 am. Lunch—the highlight of the day (of course)—will be at
a very nice Charleston restaurant around noon. Details to follow.
Friday Joe and I drive to Rehobeth Beach,
DE, for our yearly outing with two of our favorite couples. You know. Food,
drinks, games, movies, outlet shopping, golf, etc. We will return Sept 6 just
in time for my LAST #! long treatment.
Not sure if I will have Internet access
while we're gone, so if you don't hear from me again, just know we are having a
wonderful time with wonderful friends. We will be reachable on my cell phone.
843/446-4444.
Oh, did I mention Joe and I will
celebrate our 20th wedding anniversary Sept. 1? We think it very cool, indeed,
that we not only still love each other—we also still like each other. :)
Much love to everyone. Thanks for your
comments. I am getting lots of help with my anxiety from my doctors and
neighbors, so not to worry. I have less than a month to go, and my confidence
is growing that I will at the very least be able to crawl across the finish
line.
Have a great Labor Day weekend.
LOL,
Julie
WEDNESDAY, AUGUST 25, 2010
4:48 PM, EDT
ANNOUNCEMENT:
I have 3 MORE treatments left!
One long one and two short ones.
Today my neighbor Myra, I, and my brave
little white blood cells zipped down to Charleston for a short treatment...and
then we did what all intelligent women do to keep motivated...we rewarded
ourselves for accomplishing a difficult task!
We took ourselves to lunch at Charleston's
famous Magnolia Restaurant. http://www.magnolias-blossom-cypress.com/
It's beautiful, elegant, and delicious. Myra
had the creamy tomato bisque with a chiffonade of fresh basil, roasted
turkey caesar wrap with shaved parmesan cheese,
bacon, and diced tomatoes—and
fresh made potato chips. Yum!
I had today's cold fruit soup special
(blueberries, raspberries, can't remember the rest, spices...so delicious I
wanted it for dessert too)! Oh, I also had a fresh salmon salad with
warm spinach and beefsteak tomato salad, fresh goat cheese, crimini
mushrooms,and a balsamic reduction. Yummy! Needless to say, we were sooooo satisfied
with our reward and feeling really good about ourselves.
On Friday Joe and I leave to go play with
friends in Annapolis, MD, and Rehobeth Beach, DE, for 10 days! I'm pretty sure
"play" is a not-so-secret code word for "plenty of adult
beverages!" We'll have plenty of toasts to all of you for helping me get
through this time in my life.
You will be happy to know my attitude is
getting better and my anxiety is lessening. I think Randy must have FedExed my
good attitude back without me knowing. As for the anxiety, it's great what you
can find in a bottle these days!
In closing, thank Myra for your loving
support today. You were just what the doctor ordered.
LOL to everyone,
Julie
P.S. I keep forgetting to mention that my
little mother kicked the pneumonia and is resting comfortably once again. So
much for the two weeks to live!
THURSDAY, SEPTEMBER 9, 2010
1:26 PM, EDT
TA DA!
I completed my LAST BIG, LONG, WHOPPER treatment yesterday. YAHOO!
STATUS:
I'm feeling remarkably well and hope to continue to do so this week. My
doctor was happy with my blood work and anticipates no problems in moving into
maintenance chemo Sept 29. Only 2 more short weekly treatments to
go! YAHOO!
SIDELINE: To
give you an idea of what I mean by BIG, LONG, WHOPPER treatment, I
weighed myself after the treatment yesterday and found I had gained 9 lbs (in
fluids)! Fortunately, that will be gone in the next few days.
DEBAUCHERY IN REHOBETH
BEACH: We had so much fun. We joined four
friends, Sandy & Jorge & Marti and Ralph, for the third year in
a row at Sandy's beach house.
Joe and I celebrated our 20th wedding
anniversary (Sept 1) all week long. We ate and drank (in or out depending
on our mood and our schedule). We temporarily satisfied our cravings for good
food (crab cakes in particular), good wine, and Guiness beer.
Sandy, Jorge, Marti, Ralph, and Joe
played golf with varying results. The ladies shopped at the sales-tax-free
outlet stores with great results. We came home salivating over our 'finds' and
all the money we saved! :) In the evenings we played Mexican Train
Dominoes and Phase 52 and drank (you have to do both) until bedtime.
I found I had energy every other day, so
I slept and read books when I needed to and participated when I could. By the
end of our visit, I talked to my girlfriends, hugged everyone, ate, drank,
shopped, and played games enough to make me happy, and that's what counts! It
was great to be with old friends...and it made the time fly. I returned ready
to tackle the last 3 weeks of treatments.
THANKS: I
give thanks for my own inner strength which comes from my belief in a loving
God, and the help of a loving support system (my wonderful husband, my
doctors, and each of you). I am doing extremely well and now anticipate
prancing across the finish line Sept 22 instead of dragging my ass across as
earlier predicted.
Until my next report, please know there
is much love and appreciation for each of you here. And remember how much I
love your comments. They always make me smile.
Kisses,
Julie
THURSDAY, SEPTEMBER 16, 2010
8:18 AM, EDT
A lot happened on my visit to Charleston
yesterday! I had two wonderful adventures:
1. ABDOMINAL PORT REMOVED in the morning,
and
2. NEXT TO THE LAST WEEKLY TREATMENT in
the afternoon!
STORY: Joe had long ago
arranged for four days golf this week in Hilton Head with old friends—before my
diagnosis and certainly before we knew my port would be removed this
week. I wanted Joe to have a break and some male companionship. My loving,
giving, fun friend and neighbor, Dotti, agreed to fill in for Joe while he was
gone.
Dotti and I are having our own fun.
Yesterday she picked me up at 6 AM for the trip to Charleston. We parked at the
Hollings Cancer Center and then walked next door to the MUSC Main Hospital for
the surgery. Sounds simple doesn't it? WELL...I had my blond wig on, it was a
beautiful day, and I decided it would be a good idea to walk along the outside
of the building (rather than thru the hospital as instructed).
Long story short, our walk along the
outside took us by what the public was not intended to see. Delivery entrances,
trash trucks, trash cans, construction workers, smokers, etc. We ended up
having to stop a nice lady with a MUSC badge, ask for instructions, and then
follow our new friend thru the bowels of the hospital to get to the
registration desk. Good thing we had plenty of time.
The registration, prep, and waiting for
the port removal took 2 hours. The actual surgery took less than an
hour, and then I was monitored for about an hour. 3 1/2 hours total. What took
two incisions to implant only took one incision for removal! I am amazed
with the tiny bandaid-size cover for the incision. And today, almost no
soreness...
______________________
NOTE: Before Joe
left, he instructed Dotti that I was NOT allowed to bring the handsome
Portuguese doctor from Brazil (who had implanted the port and who we expected
to remove it) home with me. Joe's instructions turned out to be unnecessary. My
handsome Portuguese doctor wasn't there...This time I ended up with a bald
rather uncommunicative head of the department. He did a fine job...but he
didn't fit my fantasy...!
______________________
After the morning's adventure, Dotti and
I walked across the street to a somewhat less than satisfying lunch in the
Roper Hospital. Then back across the street to Hollings for my 2-4 PM NEXT
TO THE LAST TREATMENT. I slept, Dotti read and dozed, and then it was
over!
Two adventures in one day left me groggy,
so I wasn't much company on the way home (I mostly slept). Dotti fed me supper,
watched TV with me, and spent the night. What a trooper!
Dotti had agreed to be with me as needed
while Joe was gone. This included spending the nights. In addition to
yesterday, she fed me supper Tuesday after Joe left and is going out to dinner
with me tonight. Tomorrow I'm thinking I'll be fine by myself, but I know
she'll be there if needed. Long periods by myself are not good right now.
Anxiety and chemo brain don't go well together. And then hubby will be home
Saturday afternoon.
Today I am sooooooo happy! There's
practically no soreness at my incision, my grogginess is gone, and I feel good.
Normal life is on its way!
BEFORE I END, let me say a little about
how I felt about asking for so much of Dotti's time. At first I thought I
should feel guilty. As I thought through this, I
realized I could be strong and be by myself (with the
exception of yesterday), but I didn't have to.
In the past I've made myself do a lot of
things alone that were very painful. This time I decided there was no need to
do that. I didn't have anything to prove anything to myself or to others. The
truth was I wanted Joe to have a break AND I didn't want to be alone for 4 days
and nights. It took courage to call Dotti and ask for so much for myself, but I
did it. And I'm really glad I did!
This whole event makes me remember one of
my favorite quotes. Pain is inevitable; suffering is optional. Don't
remember who said that to me or where i read it, but it's true. Selfishness is
not something most of us have to worry about. Asking for what we need is
uncomfortable but a good thing.
LOL to each of you,
Julie
WEDNESDAY, SEPTEMBER 22,
2010 6:00 PM, EDT
WEEKLY TREATMENTS
COMPLETED...!
FINALLY....4 1/2 months of intensive
chemotherapy fini...! Over. Wrapped up. History. Today's treatment wasn't
pretty, but Joe and I got 'er done.
Blood Work Results. For the first
time, this week's blood work showed severe anemia. Now I know why I feel
so fatigued all the time and have occasional shortness of breath and dizziness.
First of all, there was some question as to whether or not I should even be
treated today. In the end, my doctor decided to treat AND to give me a blood
transfusion for a quick boost of yummy red blood cells.
What wasn't pretty. During the
final 2 hour treatment today, for some unknown reason I felt extremely jittery
during the entire process, slept little, and ended up feeling groggy and
totally out of sorts. (Usually, I feel calm, sleep most of the 2 hours, and
end up feeling amazingly normal!)
After the 2 hour treatment, I had a 2
hour blood transfusion during which I did sleep most of the time and woke up
CRANKY, GROGGY, AND UNSTEADY ON MY FEET. Not sure why I had a bad reactions,
but I did. Not fun. Feel better mentally now that I'm home blogging on the sofa
with Joey watching the news. Hope I'll feel better physically...tomorrow?
(PERSONAL COMMENT: Bunny and
Ben, aren't you glad you didn't take me today?!)
HAPPY NOTE: On the way home, Joe and I
decided to stop for an early dinner at a Pawley's Island favorite, "Hawg
Heaven". It's exactly what it sounds like—a total dive with great Southern
food. I had never been, so we decided to take advantage of the opportunity.
Slurp! A buffet.
Juicy,
wonderful lightly fried chicken,
Delicious
shredded pork BBQ with 6 different sauces at the table,
Perfect
cole slaw (Southern food etiquette requires cole slaw on top of the BBQ),
Unbelievably
light and perfect macaroni and cheese,
Small
potatoes cooked in what looked like milk and sausage (so good they make an
all-potato diet sound like a reasonable plan),
Delicious
green, blackeyed, and snow peas, lima and butter beans,
A
small salad bar, AND
Yummy
desserts...today they had home made peach cobbler and some kind of oreo cookie
cool whip concoction. I can vouch for the cobbler...Joey practically licked
his oreo cookie concoction plate which is usually a good indication
he liked it.
So, to conclude, I hit a very important
milestone today, and I'm proud of myself. Joe and I will celebrate as soon as I
feel better. Right now, I think I'll go to bed early and hope for improvement
tomorow.
Before I say goodbye, however, I want to
share something I learned since my diagnosis in early April. I think you'll
like it. I do. When I was a child, I learned I couldn't depend on adults to
take care of me. So, I made a decision to always take care of myself.
This year as an adult I learned there are
adults I can depend on to take care of me when I need them. And I learned it's
a strength to ask for help—not a weakness. That's big.
You guys and gals are the best! Without
you I don't know how I would have made it this far.
NEXT STEP: September 29 will be the
first of 11 months of maintenance treatments every 3 weeks. They should be a
breeze. One drug instead of three, 1 hour treatments instead of 2 to 4 hours,
and little to no side effects. YIPPEE!
Kisses to all,
Julie
THURSDAY, SEPTEMBER 30,
2010 11:47 AM, EDT
"THE BEST NEWS
POSSIBLE!"
That's what my doctor said yesterday!
"The best news possible!" My blood work, CT scans, and physical exam
all agree...NO CANCER
ACTIVITY! YAHOO! Your prayers have worked!
DETAILS: Yesterday was a bear
schedule-wise, but worth it. Look at our timeline and tell me Joe and I don't
deserve a medal or something!
4:45 am Crawl out of bed, Julie gets
pretty, Joe takes a shower.
5:30 am Departure. Joe drives. Julie
dozes.
7:30 am Arrive at MUSC, Julie registers.
Joe waits.
7:40 am Over the next 2 hours Julie
drinks 2 large glasses of
"contrast" in prep for CT
scans (tasteless, not a problem). (Potty break for Julie) Joe drinks
Starbucks and waits. Good thing I don't like coffee! (Potty break for
Julie)
9:40 am (Potty break) Blood work, CT
scans, (Potty break) (Potty break) (Potty break) Joe waits.11:00 am Early
lunch. Joe eats. Julie buys food but "contrast" drink kicks in
and
doesn't feel like eating. (Potty
break) (Potty break) Wait.
11:45 am Doctor is thrilled. Nothing but
good news! YAHOO! Blood platelets a little low but finally cleared for
treatment.
1:00 pm Walk across the hall for 1st
maintenance treatment.
Register. Wait for doctor's orders. Wait
for drug. Wait.
Wait. Wait.
3:00 pm Drug finally arrives and 30
minutes later we're outta there! No more steroids! No more Benadryl!
3:45 pm Departure for home!
6:00 pm Arrive home. No problem with
rain.
9:00 pm Bed time. Exhausted.
Joe got up at his usual early hour. Julie
slept for 13 hours.
Forgot to tell you I came down with
vertigo (temporary) last Sunday. Today (Thursday) I feel mildly dizzy. Goes
well with my blond wig. Still have fatigue, numb (or stinging) toes, and
severely irritated nose...BUT...my doc says I should be feeling better in 2-3
weeks. (I thought she said months last time). YEAH!!!
HOW'S JOE? He's doing great. He's never
complained over the last 6 months, and he never complained yesterday. He has an
amazing ability to focus on what needs to be done and get the job done. He's
not perfect...but for the past 20 years you all know he's been perfect for me
and I love him!
OUR THANKS AND LOVE TO EVERYONE! Joe
and I thank each and every one of you and the many, many groups you represent
who have prayed for me, sent positive energy, flowers, cards, food, books,
nighties, given your time to be with me, or driven me back and forth to
Charleston.
I will write again soon to properly
acknowledge and thank you. Right now I'm too tired to do a very good job of it.
And acknowledgement is one of my favorite topics!
There is much love for you here,
Julie
THURSDAY, OCTOBER 21, 2010
1:52 PM, EDT
Greetings! It's been a month since my
last weekly treatment, and I was hoping to report that I was feeling much
better. However, I cannot tell a lie. I feel like crap!
Although my doctor is not alarmed, I am
not a happy camper.
1. My fatigue is continuous all day. I
wake up tired, spend the day tired, and go to bed tired. it's not fun to be
exhausted by everything I do.
2. The numbness in my toes has progressed
to include the balls of my feel and I feel like cotton has been stuffed between
my toes.
3. It's hard to walk from continuous
muscle spasms in my lower back that refuse to give up. (Due undoubtedly to
sitting on my backside for 6 months. With continuous fatigue, I don't feel like
exercising.)
4. My nasal congestion is
better...but not gone.
Speaking of gone, my patience is gone
also. MIA. Kaput. My mind is ready and willing to go; my body says not yet
you aren't.
My doctor says it takes about a month to
get the chemo out of my body...and then I will start to feel better (today's a
month). BUT...I thought she told me it would take 2-3 weeks before I started to
feel better. However, since I'm the one with chemo-brain, I suspect I didn't
hear what she said correctly. It's now 4 weeks and all I can do is vent.
In the meantime, she is going to test my
thyroid and adrenal glands next week.
IT'S NOT FAIR! I've been good. I've been
patient. I've done everything they told me to do...and everything they've told
me to not do. I'm in remission, and I'M READY TO FEEL GOOD AGAIN!
It's a good thing I like books. I'm
reading one about transitions in people's lives (written from a spiritual
perspective). What's helpful is learning about the transition process. ENDINGS
>VOID > BEGINNINGS.
ENDING: My diagnosis April 9 was an
Ending or a stopping of the life I was leading.
VOID: Since April 9 I've been in the
Void. Not a pretty word and definitely not a place I care to be. However, I
believe NOTHING happens by chance. The Void is giving me time to rethink—my
self/Self, my life,and my relationships from the physical, emotional, intellectual,
and spiritual context.
Physically, I know that I am much more
than my body—as each of you are much more than your bodies. My body is not
ready to go, hence I'm still in the Void.
Emotionally, I know that I trust
myself to express my emotions in ways that heal and are not hurtful.
Intellectually, there's a HUGE difference
between sharing my beliefs and imposing them on others. Whew! What a relief!
For me and for you!
Spiritually, I believe that God (Love)
created me and gave me the power to create my own life. My Soul and I created
an ending IN ORDER FOR me to create a new Beginning. The Void (where I am
now) is for me to stop, be quiet, examine my old life, decide what's missing,
and create a new Beginning with important changes.
With your help I've decided that my new
Beginning will include WRITING. Not a book, mind you but a webpage perhaps.
Your praise of my writing has helped me see that I am a good writer and I enjoy
writing...and out of that I see that I want to share (but not impose, mind you)
my life experiences and my spiritual beliefs. At least that's what I think
right now.
So, what can you do to help? You can pray
that I receive God's guidance and that I create a life that is fulfilling and
joyful.
I know many of you are facing your own or
a loved one's Endings, Void, and Beginnings whether through death, a serious
illness or injury, the ending of an important relationship, the loss of a job,
etc. It is helping me to understand the Ending, Void, Beginning cycle, and
perhaps this will help you also.
There is much love for you here,
Julie
SUNDAY, NOVEMBER 28, 2010
3:33 PM, EST
Greetings again to family and friends! I
realize it's been a long time since I last wrote, and I've missed you.
I am finding recovering from chemotherapy
a real bear. Somehow I figured I would recover relatively easily, but my mind
is ready to go, and my body is saying "Not so fast!"
So...according to my doctor, I can plan
on "recovering" for another 6 months or so. Joe and I go to MUSC this
Wednesday, and I plan to ask her when exactly did that 6 months start! Late
September when I finished weekly treatments? Or mid-November when she told me
about the 6 months?
On a happier note, I have had some recent
fun you might like to hear about.
1. The weekend before Thanksgiving, I
rode to Columbia, SC with my treasurer to attend a board meeting and convention
for the SC Alliance for Retired Americans. It was great being there and seeing
everyone. (I went to see how my energy would do, and I found I was exhausted.)
2. Joe and I went to Charlotte, NC
to see my mom and take her to share Thanksgiving with family in Rock Hill, SC
(30 minutes away). You may remember her doctor gave her 2 weeks to live last
summer, and now she's doing remarkably well. We also went to Clinton, SC and
visited my brother. I was predictably exhausted, but I'm glad I went.
I trust you and your loved ones had a
good Thanksgiving. We look forward to seeing some of you here in Murrells Inlet
for Christmas festivities and others right after Christmas in Florida.
Personal Notes:
Niece Susan: Let us know when you will be
back in Tampa!
Cousin Bob and Lenore: If you're going to
be in town, we'd like to see you.
Sandy and Jorge: See you in Sun City!
Lots of love to everyone!
Julie
TUESDAY, DECEMBER 7, 2010
4:38 PM, EST
Dear Ones:
Thank you for your wonderful comments
about my last posting and updates about your lives. (I'm beginning to think
of myself as the popular author of a continuing series of riveting short
stories...and you as my adoring readers! I'm pretty sure fantasizing about
one's greatness is a good thing...as long as one continues to distinguish
reality!)
So, my dear readers, here's another short
story:
Laudy, laudy, laudy. This was what my
beloved grandmother used to say when her grandchildren presented her with a
predicament. There's was much love and wisdom communicated in those 3 simple,
country words.
So...laudy, laudy, laudy is what I have
to say about my newest predicament. From the physical standpoint, I have
a really bad case of sciatica. As to what caused the sciatica, it is probably
the result of weak muscles and sitting on my arse for 7 months.
However, like many of you...I believe
there is much more to life than just the physical. I, in fact, believe in the
metaphysical (more than physical) way of thinking, especially about health.
Below are 2 examples of what I mean about physical and metaphysical
thinking.
Event: Sore Throat
Physical Cause: A cold, rainy day? A
virus?
Metaphysical Cause: Something you
don't want to say, something stuck in your throat?
(I remember having lots of
sore throats in my early childhood. Haven't had any since I grew up and
expressed myself in therapy. Wonder if it had anything to do with the fact that
my mother wouldn't let my brother and I talk about the "divorce.")
Event: Headaches
Physical Cause: Sinus problems,
allergies, stress, over drinking?
Metaphysical Cause: Anger turned
inward? Who am I angry at? Me? Someone else?
(I've had headaches all my
life. Fortunately fewer and fewer as I've practiced metaphysics.)
Metaphysics is a different way of
thinking, not "THE TRUTH." It's not for everyone, but for me
it's entertaining and enlightening. It's a way of thinking that brings the
responsibility (not blame) for my life back to me where I can do something
about it—or not.
So, physically doctors actually do not
know what causes ovarian cancer. Here's what I've thought of so far
metaphysically:
Event: Ovarian Cancer
Physical Cause: Unknown
Metaphysical Cause: Ovaries are the
physical source of creativity (babies). Is there something I want to create in
life (like my writing perhaps) that I'm not doing? (Still working on this.)
Enough metaphysics today. You may be
wondering what I've done from the physical standpoint to help myself. I have
good answers. Over the past 6 days I've done:
1. Acupuncture (3 times to include
electrical stimulation and herbal patches),
2. Chiropractic (2 times)
3. Physical therapy (started today)
4. Ice packs (10 minutes on, hour off
since last Thursday)
Keep your fingers crossed that I find a
way to let go of the 'pain in my ass' and proceed on with good health!
BTW, Joe, bless his heart, is back to
being my servant. I can't stand long enough to fix myself anything to eat, so
he's doing a good imitation of a barely-competent-but-not-complaining chief
cook and bottle washer. (I actually think it's good for him to have to fix
my green health drinks and cottage cheese and flax oil right after he returns
from wolfing down his morning coffee and doughnut(s)!)
It's been a joy talking with you today.
But, as we all know, you can't learn anything with your mouth open. So, I going
to close by saying I love each and every one of you and know that you love me
back. Mmmmmmm.
Many kisses,
Julie
FRIDAY, DECEMBER 10, 2010
12:47 PM, EST
THANKS! To
everyone for your generosity of spirit, your love, and your caring. You will be
happy to know I have had a little AAS (attitude adjustment session) thanks to
Dr. Young and nurse Cheryl at MUSC, hubby Joe, and all of you.
I now understand it's going to take
another 4-6 months to recover. Period. I have surrendered. Don't know how long
this new attitude will last, but at least I am there now.
Surrendering doesn't mean I'm not in
action, however. For the sciatica, I'm doing chiropractic, acupuncture, and
physical therapy...and...wait for it! I'm beginning to see minor improvements.
At least Joey doesn't have to haul me out of bed and off the couch any more! He
does, however, have to fix me something to eat. Standing hurts.
Just as I wrote those last two words,
this wonderful tune came into my mind... I don't particularly like the
"I'm just a woman" line, but I'll let that go for now.
ONE DAY AT A TIME, SWEET
JESUS I'm only human, I'm just a woman. Help me
believe in what I could be And all that I am. Show me the stairway, I have to
climb. Lord for my sake, teach me to take One day at a time. Chorus: One day at
a time sweet Jesus That's all I'm asking from you. Just give me the strength To
do everyday what I have to do. Yesterday's gone sweet Jesus And tomorrow may
never be mine. Lord help me today, show me the way One day at a time. Do you
remember, when you walked among men? Well Jesus you know if you're looking
below It's worse now, than then. Cheating and stealing, violence and crime So
for my sake, teach me to take One day at a time.
Cool, huh!
So many of you have left me notes, I want
to take the time today to respond.
Mickie, Don, and the little fuzzy thing:
Your notes touch my heart and make me laugh. Wish Joe and I could join you on a
trip down the Intercoastal Waterway. You could pick us up in Murrells Inlet!
Give my regards to Michele and her family. I am happy for her...and you. Give a
hug and a kiss to Don and the little fuzzy thing. BTW, the green drink is
actually not bad at all. I sweeten it with Stevia. Otherwise, it would be truly
disgusting.
Grace: Thanks for your comments on my
writing. I like your term "action-oriented writing." You are the one
I admire. If only we could get our elected officials to combine love, dedication,
and action the way you do! P.S. I will, indeed, look up The People's
Pharmacy.
Marie: I hope to see you at the Blackmoor
Christmas Party Saturday. I would very much like to go to a movie or lunch or
both next week. But then, going to the ocean and sipping a margarita sounds too
good to pass up.
Betsy: Thank you for caring. You are,
indeed, right. The body is amazing, and I need to give mine the time it needs
to heal. When I am feeling better, Joe and I want to come down and visit with
you and Gordon again on our way to the Keys. Perhaps early this summer? We'll
be on the west coast of Florida after Christmas.
David: You know me well. My mind and soul
have almost always been strong, and I've always wanted more out of my body.
So...never fear. I am keeping the faith, dear one. How's Rita? Give her my
love.
Hilda: Now isn't this something. Writing
on the Internet to my next-door neighbor. I know you and Gary are busy and
travel a lot...and when you're not traveling, we are! Thank Gary for the Cancer
Sucks pins. I am grateful both he and I received good care and are surviving to
enjoy another day! My prayers are always with you.
Sam: I'm assuming from your notes your
book is doing well, and I am happy for you. Thanks for putting me back on your
prayer list.
Rosalie: You are a tower of strength and
a source of inspiration. If you can go through what you went through for 3
years, certainly I can make a few more months! Thanks for your encouragement.
look forward to us getting together soon.
Marti: Thanks for your notes. Trust you
and Ralph had a good Thanksgiving. Joe is still talking about the one we spent
with you in Williamsburg! Something about sausage dressing...! Hope to see you
both soon.
Michele: I think of myself as a patient
person but I am, indeed, not a patient 'patient!' Congrats again on your
engagement. He's a lucky man! I miss you. Hope to see you on my next trip to
MUSC.
Lynn: Thanks for keeping up with me
through CaringBridge. I knew you would see the value in 'bitching.' I'm wondering
how you and your new horse are getting along.
Vicki: You rock too, sweet pea. I've been
wondering how you, Rory, and Jennifer are doing...and what you are doing.
Zade and Tim: Joe and I have been to
the inlet twice recently when you weren't there. Sorry to have missed you. As
soon as I'm up and around again, we'll be back!
Sandi B: You are a real sweetheart, and I
love hearing from you. I do plan to put on my big girl clothes and join you
tomorrow night—no matter how I feel. I won't be dancing, but I'll be there!
Glad to hear you've retired. Let's go out and have some fun!
Sandi C-T: I am sitting on
something! I'm sitting on my backside! Oh...you mean metaphysically! OK clever
girl. How about this? I'm sitting on my desire to share my spiritual ideas
until I think people won't think I'm weird? Or am I too late?
Clystie and Rich: Thanks for your
encouragement. Good to hear from you. How are you two adjusting to your new
digs?
Must go for now, folks. I hope all of you
will have wonderful, nurturing holidays with your loved ones. Joe and I will
have a quiet Christmas and then take off for Florida to see my niece, Susan,
and her husband, Eric in Tampa (they are expecting their first child in
January) and spend New Year's Eve with Sandi and Jorge in Sun City.
That's all for now. Lots and lots of love
to everyone,
Julie
SUNDAY, FEBRUARY 6, 2011
9:43 AM, EST
I'M BACK! When I wrote two months ago I
talked of surrendering to the fact that it would be at least May/June before I
could reasonably expect to really feel better. Remember? Well that was HOGWASH!
The truth is I haven't surrendered to any
such thing! The truth is I want to feel better and I don't. Oh, I've had three
or four days over the last 4 months when I actually felt REALLY GOOD—but most
of the time I feel like I'm carrying 100 pounds on my shoulders.
My doctor continues to be thrilled with
my progress. I am glad she's happy. Joe, bless his little pea picking heart, is
happy because they didn't tell me I had six months to live! I'm glad he's
happy. And, when I think about it, I too am happy I've come this far.
But... IT'S BEEN 10 MONTHS AND I STILL DON'T FEEL GOOD....RATS!
I stopped writing because I wanted to
report good news, happy news of super fast recovery...I wanted to continue to
be courageous and strong...taking this whole cancer thing (as I once so
stupidly said) as a "bump' in the road. Well, it turns out I'm just
as human as everyone else. What a disappointment. I thought I was superwoman...
My friend, Ronda has finally gotten me to
see that cancer and major surgery are traumatic events from which one does not
recover quickly or easily. It is perfectly normal to be upset and anxious. It
is understandable that I need support. (Actually, I have written these
thoughts where I can see them every day so maybe I can remember them!) When I
think back on other traumatic events in my life (my parents' divorce and my
divorce), I realize I did not recover from them quickly or easily either. It
actually took years.
I've been thinking I am recovering from
chemotherapy when I'm actually still in chemotherapy. Less chemo...but still
chemo. Silly me.
So. I'm writing today because I finally
remembered how therapeutic it was for me to write to family and friends who
care. It's kinda like putting soothing protective lotion on an open
wound.
Before I forget, Joe is being wonderful
continuing to take care of me, the house, and the yard. AND he is generously
running me up and down the east coast to visit family and friends to keep my
spirits up and entertained! What a sweetie.
So, I'm through for now. Feel a little
better and look forward to hearing from you. I AM going to make it through this
and your love and support is sooooooo appreciated.
Lots of love to each of you,
Julie
P.S. There is one sign of progress. My
hair is growing back and I now go wig-less!
WEDNESDAY, MARCH 23, 2011
10:46 AM, EDT
Greetings family and friends! I am happy
to report that I am FEELING BETTER! Honestly better!
I have what I've wanted since the end of
the intense chemo in September. I have SIGNS OF GRADUAL IMPROVEMENT! If
you remember, my biggest complaint all along has been the fatigue, day after
day, month after month. Now I can go along (gently) for 1/2 day to
3/4 a day. I walk, email, grocery shop, run errands..and then I go home
and rest happy that I've felt a little honest to goodness energy.
Joe and I are in Maryland right now
visiting family and friends. I'm quiet during the day in preparation for an
evening outing—or I surround an afternoon outing with a quiet morning and
evening. It is, I can say, a good life.
I do have two interesting conditions you
might be interested in hearing about. Neuropathy in my toes and chemo brain.
The neuropathy bothers me; the chemo brain bothers Joe.
Neuropathy affects my balance and makes
it difficult for me to stand for long or walk very far...when I wear socks it
feels like I'm walking in grits and there's cotton stuffed under my toes.
Uneven ground no matter how small is a big challenge.
The chemo brain makes it impossible to
recall names of people, places, streets, cities—even very well known ones. I
can picture the person, place, street, or city. Just can't come up with the
damn name. The hard part for Joe is when I tell a story from the past, mix 2 or
more events, and invent an entirely new story! But he's good. As long as it's
not important, he doesn't even tell me.
That's all for now. Hugs to all.
Julie
MONDAY, APRIL 11, 2011
11:05 AM, EDT
ONE
YEAR — ACKNOWLEDGEMENT TIME !!!!!!!!
Can you believe it's been a year since I
was diagnosed with ovarian cancer? I can! April 9. I meant to write on that
date but was absorbed with solving an email problem and—chemo brain—I thought I
couldn't write to you because my email wasn't working. Email. Internet.
Whatever...
Now that I've remembered I write to you
via the INTERNET, my correspondence can continue. I'm in a reflective mood, so
bear with me please. I have a lot to say to cover a year. :)
First of all, I want to acknowledge that
last year was the most difficult and remarkable year of my life and certainly
the most difficult of Joe's and my marriage.
I am proud of Joe and of me
for the way we worked together to get through the year in as good a style as
possible. We never gave up; we never gave in; we never felt sorry for
ourselves, and we're still talking to each other. Amazing!
Joe, as you know, has been nothing less
than superman. He has taken care of us, the house, the yard, and the community
without complaint. Only once did he admit he was tired. As I've said many
times, he may not be perfect, but he is perfect for me!
Next, I would like to acknowledge the
many people who saved my life and made last year so remarkable.
1. Dr. Tracy Nelson. My
gynecologist was the one who found the tumor and flew into action. She
drew blood that day and ordered a cat scan the next day and a mammogram and
colonoscopy the next week—all of which had to be done before surgery. She
referred me to MUSC in Charleston, SC, and I was scheduled for surgery 20 days
later—on April 29. Twenty days from diagnosis to surgery.
2. Dr. Jennifer Young. The only
female gyn oncologist in SC at that time, was and is my oncologist and surgeon
at MUSC. She is a caring, talented professional—the perfect person to trust my
life to. She, her adorable interns, her staff, and the clinical trial director
took care of every huge problem and every small concern,
and there were many. They are all amazing.
The one thing I appreciate
the most about Dr. Young is that she does NOT like to see her patients suffer!
Every time I mentioned anything that sounded like suffering, she fixed it!
(Side story. In the beginning, Dr. Young assured me she could keep me from
feeling nauseous from the chemo treatments. In fact, she said if I felt
nauseous, she wasn't doing her job right. She was right. I never felt any
nausea. None.)
3. The chemo nurses. These
wonderful women made chemo as good as it can possibly be. Knowledgeable,
professional, cheerful, attentive, and ... fun. (Chemo wasn't fun. The nurses
were fun.)
4. Medical University of SC
(MUSC). Having worked in corporate America for 40 years, I found the
MUSC culture of professionalism, skill, and caring remarkable. In an entire
year, from the young men who valet parked our car (for $5) to the
administrative staff who registered me in every visit and handled my appointments,
to the on-call nurses and doctors, to my own doctor, nurses, and staff...I
never ran into a single unprofessional, unskilled, or uncaring person. Isn't
that an amazing thing to be able to say?!
5. My cousin, Peggy, and sister,
Pamela. These two took over visiting my mother and my brother in my
absence. I thought it would be for 4-6 months, but here it is a year and I've
yet to be able to resume that responsibility. Thank you Peggy and Pamela for
all the time you've given from your busy lives and for the love and generosity
of spirit you share so willingly.
6. My friends. What to say
about you ladies and gents? One of you created this marvelous website...a site
that has turned out to be a gift to all of us! One of you called and counseled
me every single day for 9+ months. I would have drowned without you.
Some of you brought food in to share your
love and concern. Yum. Some of you came over and visited to help me think about
something else and pass the time. Some of you took me out to help keep me
entertained. Many of you sent wonderful cards expressing your love and concern.
And then there are those of you who sent
comments back to me on this website after my entries. You have no idea the
lifeline you threw to me with every comment.
All of you, in your own ways,
helped save my life. It's true I wouldn't have survived without the quick work
of Dr. Nelson and Dr. Young. It's also true I wouldn't have survived without
the care, love, and attention of each of you.
Let me close by saying that earlier I
referred to this past year as difficult AND remarkable. In a later posting, I
look forward to covering more of the remarkable part with you.
Lots of love,
Julie
THURSDAY, APRIL 14, 2011
8:13 AM, EDT
Major changes in life
became a topic of special interest to me last year (as you can imagine). It's
always been important to me to find meaning...a worthwhile purpose...a
different perspective in a difficult circumstance to help me through it. Since
everyone I know is experiencing changes in their lives and those of their loved
ones too, I want to share something I wrote yesterday in response to a friend's
painful change. When Personal Change Shatters Life as
We Know It... Today I spoke with a friend I'm very fond of but
rarely see. He quickly asked, "Do you have time for lunch? A lot has been
happening in my life." Turned out his wife has left him and their
son, and he's trying to come to grips with the pain, loss, and ugliness of
the end of a 20 year marriage while continuing to care for his young son
and manage a very stressful business.
I let him know how
sorry I was to hear about the painful changes in his life and then found myself
asking if he had the space to hear a different perspective on those changes. He
shook his head yes, and I began...
For what it's
worth, change is happening to everyone.The change you are experiencing is both personal
and universal. The only way I can explain this change to you is in astrological
terms. Bear with me here. Astrology divides time into twelve Ages corresponding
to the twelve zodiacal signs. Each Age is approx 2,000 years, and each Age
starts in reaction to the extremes of the previous Age.
For instance,
roughly 4,000 years ago the Age of Aries was a time of unrestrained brutality,
war, and conquest. In response to the extremes of human brutality, the Age of
Pisces began with the birth of Christ and Christianity—the external guidance we
needed to teach us how to behave. As "children" of God, we looked to
an external "Father" to tell us how to behave.
Now, 2000 years
later, the Age of Aquarius is saying it's time for us to develop an adult
relationship with God—to become "adult" children of God. It's time to
understand and be responsible for our own inherent spiritual heritage and that
of each human being.
To do that, to
accomplish that change, we are being asked to let go of all those things that no
longer work for us. Relationships. Jobs/careers. Geographical
locations. Deeply held opinions and belief systems. Who we believe
ourselves to be.
What's
happening to you, my friend, is that your Soul is asking you to let go of all
those things in your life that no longer work for you. To do that which
nourishes you at a Soul level and to not do that which is loathsome at a Soul
level. By going inward, by being responsible for ourselves at a Soul level, we
will be contributing to everyone at a Soul level.
Here's my perspective. I'm not saying the above is THE TRUTH. I'm not
saying anyone else should believe it. It's a different perspective that brings
me understanding, inner peace, respect for my own and other's pain, and a
desire to honor everyone's experience. Take what works for you and let the rest
go.
With affection and
understanding,
Julie
THURSDAY, MAY 12, 2011 2:34
PM, EDT
(Trumpets)I have been writing on
CaringBridge for over a year, and I am pleased...more pleased than I can
say...to finally declare my health B-O-R-I-N-G. It's BORINGLY GOOD, and
that's a good thing! TA DA! (End of Declaration)
For Example: Blood work: Perfect.
CA-125 test: Perfect. Me: Perfect. I am feeling steadily stronger. Yahoo! My
last ‘maintenance’ chemo will be 8/24, followed by a final treatment checkup
9/14, followed by a maintenance checkup every 3 months, followed by a CT scan
every 6 months. Whew! While I am still limited in physical activities, my
health is no longer the riveting topic of interest it has been.
So….(ahem). I believe it’s time to
conclude CaringBridge. Yes, I know. It’s sad. Very sad. However, before you get
too far down the sad road (more trumpets), I ALSO THINK IT TIME TO
TRANSFER THIS PARTY ELSEWHERE!
Writing and sharing on CaringBridge
opened up unexpected and welcome doors of growth and healing—not only for me
but, I think, also for many of you. My journey spoke to your journey in
profound ways. So, there’s simply no way to end a conversation as meaningful as
this—without creating something of equal or better value.
Proposal: If you would like to continue
this fun, wacky, different perspective conversation with me, and I hope you
will, I propose we move this party to my personal website. (http://godforgrownups.blogspot.com).
On my website I can write, you can write,
I can answer back, you can answer back. We can share insight. It’ll be fun
Julie
No comments:
Post a Comment