March 17, 2007 - A Day with Daughters Note: Due to limitations of time and energy,
I stole this entry from an e-mail to a friend; it's a trick I learned from
another (now deceased, unfortunately) cancer blogger.
I took Autumn and Lacey shopping
for prom dresses today. Yes, I even drove! We went to a local store downtown
called Trinkets and Treasures. They carry costumes for all occasions, tuxedo
rentals, wedding attire, and right now about half of the store is covered
with prom dresses. It is a fun, fun store! The ladies who work in there
are so nice. They bring dresses to the girls to try on, and then help them
choose jewelry to match. They even have a stage in the store with a three-way
mirror for the girls to check out their dresses from every angle and get
comments from the other shoppers. Autumn and Lacey both tried on quite a
few different gowns before they decided. I told them to forget the price
tags and look for the dress of their dreams. (Fortunately, I could do that
in this store because the prices are not astronomical. We ended up spending
$400 for two dresses and matching jewelry. Actually, we used their layaway,
so I paid half today and will pay the other half and pick them up next month.)
I know we are on a tight budget, and managing money is important, but it's
not everything. How many times in their lives will they be 16 years old,
shopping for a prom dress? And the best part of all is that I am still here
and able to be a part of that with them.
We also had lunch together, stopped by the video store, took Autumn to have
her hair trimmed, and went to Wal-mart for a couple of things. I dozed in
the van while the girls went into Wal-mart. The pain in my side and back
didn't bother me too much, but I was exhausted!
March 13, 2007 - Results In, Plans Coming
Soon Sometimes
I truly believe that no one even reads this blog, and I am just typing for
my own benefit. That's fine, too, since I guess all blogs are ultimately
for the benefit of the author. At any rate, I am in the process of adding
the ability for readers to comment on my blog, so if you're out there, you
will soon have a voice on here, too.
Anyway, I finally got the results
of the bone scan today -- a day late, because the doctor was out yesterday.
The GOOD NEWS is that there is no additional cancer anywhere in my bones
other than the hip/femur. The damage there, however, is too extensive for
my current os. He wants to refer us either to an os in Knoxville (if that
doctor wants to tackle my case), or to the orthopedic department at Vanderbilt
University Hospital in Nashville.
Hopefully, we will know more tomorrow,
after he consults with the doctor in Knoxville.
March 11, 2007 - Tomorrow and Tomorrow
and Tomorrow The pain in my left side is relentless today. It
alternates (and sometimes synchronizes) with the pain in my left back muscle.
I've tried thermal (lidocaine) patches, ibuprofen, ice packs, heat pads,
tylenol, and even a pain pill, but nothing seems to help. I've also tried
a million different positions, stretches, and upper body exercises to strengthen
the muscles in that area.
Whenever my pain worsens, I worry
about new metastasis. If the cancer has spread throughout my bones, could
it be causing the rib pain? Did the cancer start growing with a vengeance
the minute the chemo stopped? I'm gripped by so many fears. Tomorrow we
will finally get answers.
Recently, I've been morbidly fascinated
with cancer-related blogs: the courage, the euphemisms for pain, the firm
belief that he/she will overcome, the macabre parade of chemo, radiation,
surgeries, and other torturous treatments, the many humiliations of living
in a body that is slowly disintegrating -- followed by the inevitable post
of friend or relative to convey the sad news of his/her passing.
Is that what I'm doing? Am I just
harboring my own false hopes that someday, somehow, I will be strong again?
Even worse, is this as good as it's ever going to get? Am I stuck with the
pain and all of these physical limitations forever?
The worst part of the blogs is
reading about how the spouse or family has moved on since the death of their
loved one. I know that this, too, is inevitable. I see it all the time among
people that we know. Two or three years down the road, the spouse has remarried
and the children have relegated their dead relative to the pages of the
past. Is this what I really fear? That life, and Don, and the kids, will
go on without me? The truth is that they MUST go on. It is the natural order
of things, the circle of life.
It also really, really stinks!
March 10, 2007 - Fun with Friends I
feel like I often post only when I am depressed or feeling dreary (after
all, this is a cancer blog), but this is actually a positive note.
Don and I went out tonight with
some of our very best friends in the world. We went to dinner and then to
one family's house. I was hurting a little, but not enough to keep me from
having a great time.
I always end those rare occasions
with the same thought: we don't get out often enough!
March 5, 2007 - Bone Scan Today It
was off to the giant Healthstar conglomerate building today for the bone
scan. It depresses me to go near that place! There were walkers and canes
and oxygen tanks and wheelchairs -- mine included, of course -- everywhere.
I don't know what bothered me more: the sterile impersonal whiteness of
the nuclear medicine machine rooms, or the strange intermingling of young,
healthy, upbeat health care workers with frail, elderly, disabled, and sick
patients.
I was injected with an isotope
at 11 a.m., with instructions to drink plenty of fluids and return at 2
p.m. for the actual scan. The machine is much like a CT scan machine, except
that the part that goes over me is flat and looks like an x-ray cartridge
instead of the round arc of the CT scan. The bed is as uncomfortable as
all of the others, especially because I have to lie flat on my back. It
took about 20 minutes, and thankfully my face was not under the machine
long enough to get claustrophobic. I have had bone scans before, of course,
but this is the first one I've had that covered head to toe.
So now we wait for the results
next Monday.
March 4, 2007 - Dealing with Pain I've
been having a lot of pain in my left back muscle and around to my rib cage.
It's a familiar pain, caused by the fact that I have to throw all of my
weight onto the left side while walking to protect the right side. The intensity
ranges from aggravating to nearly debilitating, and gets worse at night
like all pains do. I've tried heat, ice, pain pills, and lidocaine patches.
So far, I haven't found the magic combination to quell the misery long enough
to sleep.
March 3, 2007 - Why? Why
is it that this man -- the one who paid $15 yesterday to buy me a gallon
of strawberries from Florida -- must suffer? He has done everything he can
for me, and has stayed right by my side through all of the tests, surgeries,
radiation treatments, and chemo sessions. He helps me bathe and dress and
get around in the house and out in public. He cleans up after me when I
vomit or lose bowel/bladder control, and fixes me whatever food I think
I might be able to eat. And then, even though he is just as afraid as I
am, he holds me at night while I cry and promises me that everything will
be okay.
What will his reward ultimately
be? The loss of his wife, his lover, his soul-mate, his best friend. The
thought of his suffering is as hard for me to reconcile as the thought of
actually dying. I know that I will be in a better place, with all of the
pain and suffering behind me. He will still be here, burying me, sorting
through my belongings, raising our children, marking the months and days
since my passing.
He will be alone again, this wonderful
man who was 32 when we met to my 23. He had despaired of ever meeting the
right woman, and I, freshly divorced with three small children, did not
plan to marry again. I am sure that God was smiling on that night when we
met on a blind double date. He took on the role of both husband and father
at the same time, and never complained about all of the long hours he worked
and I worked to support us.
All lovers are eventually separated,
either by life or by death.
March 1, 2007 - Mind over Fear? Where
is the bulk of the battle fought: in the body or in the mind?
Right now, pre-surgery, it is mostly
in my mind. I try to will myself past the surgery and into the healing period,
and then to console myself with the fact that we have done the hospital-bed-in-the-family-room
routine twice in the past two years, for a total of more than seven months.
We know a lot of tricks for keeping me comfortable and -- more importantly
-- safe during the early days of recovery.
Sometimes I think about being in
the hospital, and I get that same smothery feeling that I had when I sat
awake in the middle of the night before a chemo treatment. A fear that leaned
toward sheer panic interrupted my sleep and took my breath away. Sitting
on the side of the bed, I reminded myself that if I can do one cycle of
chemo, I can survive another and another and another. Or, I would calm myself
by reiterating in my mind that the choice is mine and mine alone. I can
stop chemo at any time. I can refuse treatment at any time. I can quit the
fight and accept the inevitable at any time. At the end of the day (and
in the dead of the night), the decision is ultimately mine to make. And
the consequences are mine to suffer.
It is during those late night sessions
with myself that I realize most clearly that I walk through this world alone.
Others can pray, care, hope, love, and help, but they cannot suffer for
me or take my place. This is MY valley, and my fight.
February 23, 2007 - Tears, Idle Tears I
cried today over a pair of flip-flops.
Lying on the floor, they just seemed
to represent everything that my life can't be right now: carefree, simple,
easy, happy.
How did things get so complicated?
I've always been a very simple person, easily satisfied by the long, lazy
days of summer. I love to walk barefoot in the grass or on the beach or
in the house. My shoes were always quickly shed when I got home from work,
or under my desk at work (which got me in trouble on more than one occasion,
when I headed for the copy machine or bathroom without remembering to wear
them).
When the pavement is hot or bare
feet are "prohibited", I love a pair of flip-flops. I love the
sound of them clip-clapping on the sidewalk, the whoosh of air on my toes,
the joy of flinging them off of my feet when I come through the door. Now,
like everything else in my life, shoes are complicated. They must be practical,
non-skid, wide enough to accommodate the swelling, and equipped with a 1/2
inch lift for the right leg. No more sandals or flip-flops or girly shoes.
Oh, and what I wouldn't give to
walk again! Right now, I walk only in my dreams. I also swim, run, drive,
dance, and move with the ease of a sunny summer day in flip-flops.
Then I wake up.

February 19, 2007 - We Can Put Humpty
Dumpty Back Together Again We saw Dr. Bratton this morning, after
waiting through a LONG weekend for the opportunity to ask him a million
questions.
He believes that he can repair
my hip and leg using an allograft -- cadaver bone and metal prostheses.
He says that it will be a major surgery with a long, hard recovery period.
He also believes that he can get all of the cancer out this time. (This
is no doubt local spread from the cancer in my femur bone two years ago.
He was NOT able to get all of the cancer out during that surgery.)
The bad news: he sees some "suspicious
spots" on my LEFT hip that might be cancer.
I will have a bone scan on 3/5.
If there is cancer in the other hip, I will probably need radiation before
surgery. I will see Dr. Bratton again on 3/12.
If the surgery goes well, with
no rejection or infection, I should be able to walk again with my artificial
parts. If it is successful, I should also be able to swim and even climb
steps again.
For right now, I'll be doing a
lot of sitting, waiting, and praying.

February 15, 2007 - The Sky is Falling,
Again The
telephone rang early this morning when I was getting dressed for my trip
to the chemo lab. It was Patsy, Dr. Doddabele's nurse, and she sounded grim.
"You need to stay off of your right leg. Your hip is broken."
I cried while I got ready, made
a few phone calls, and then raced to the chemo lab to get the details /
have my treatment. When I arrived, the nurses predicted -- correctly, that
he would not give me a chemo treatment with a broken hip. I guess my "chemo
break" is here early.
He came over to us, and I said,
"So I have a hairline fracture?" (I was still thinking this was
in my femur, even though she said 'hip'.)
"No," he said, soberly.
"It's gone."
"What's gone?"
"Your upper femur and your
hip. The cancer has completely obliterated them. The neck of what's left
of your right femur is fractured."
Then he sent me home with strict
orders to put NO weight on that leg and an appointment to see Dr. Bratton
on Monday when he returns from vacation.
Here we go again ...

February 14, 2007 - Love, Love, Love Don
and I went to Justin's for a nice, quiet lunch today. It was really nice.
My appetite was reasonably cooperative; I had beef tips and a baked potato,
and Don had steak and french fries.
We also had brownies and ice cream
for a family celebration.
I finally had that x-ray done of
my right hip and femur today. I was a little concerned at the way the x-ray
technician seemed *SO* sympathetic toward me. She kept asking me if my leg
was worse than it had been in the past. I explained that no, it is not feeling
worse, but I am trying to more with it in physical therapy. I should get
the results tomorrow when I go for chemo.

January 30, 2007 - Ups, Downs For
the past few days, I have been trying to stave off a terrible bout of depression
and helplessness, fueled primarily by being stuck on a chair because of
my leg, and made worse by teenagers who seem to have forgotten that friendliness
and human kindness are necessary even at home, as well as the drearily cold
weather we've had lately.
I realize that it takes a great
deal of self-denial to get through any day. I must constantly pump myself
up with "happy thoughts", such as "things will get better",
"you will walk normally again", "a cure is just around the
corner", "you don't look bad just because you are bald, wrinkled,
overweight, scarred, and have tumors bulging all over your body", and,
my eternal favorite, "finances will better next month". The moment
that I stop airing myself up with positive self talk, I deflate like a rubber
raft on a pile of rocks. My mood tanks, I get weepy and cannot stop the
tears, and soon my energy is gone and I am just desperately depressed. Since
I can't stand myself that way, I try to pull out of it as quickly as possible.
Our fifteen year-old son announced
to us today that we do not do enough to "make him happy", and
that he is completely miserable living here. When I pointed out that we
provide shelter, clothing, food, summer pool membership, cable t.v., high-speed
internet, computer privileges, etc., he countered that those are just "the
basics", and do nothing to assuage his unhappiness. I very gently explained
to him that while we are responsible for his provisions, we cannot ensure
his happiness. He must choose to find satisfaction where he is now, and
to make plans - short and long term - to pursue his dreams in the future.
I know, of course, that this is also true in my life: I alone am responsible
for my own happiness.
It's a matter of perspective, mainly.
I need to feel like I am making forward progress, so setbacks send me reeling
into self-pity. I need to comfort myself with the fact that I am strong
and resilient, and cancer cannot take these away from me. It can wreck my
body and rattle my nerves, but it cannot change the part of me that IS me.
Maybe there's still a little fifteen
year-old left in me sometimes, too. It's time to count my blessings again,
and to remember a saying that my mother taught us many years ago: "I
cursed God that I had no shoes until I met a man who had no feet."

January 28, 2007 - A Step Backwards On
Friday morning, I noticed that my lower right leg was VERY red when I got
out of the shower. I had spiked a fever of 103 degrees on Thursday night
and had been vomiting -- even in the shower! I assumed that the redness/swelling
was caused by skipping my coumadin Thursday night (due to nausea).
When Kelly came to do my pt, she
saw my reddish-purple, blistered leg and said that she didn't think it looked
like the normal blood clot/swollen leg. She thought it might be cellulitis,
which develops inside the cells and works its way outward. It can be dangerous
if it spreads. Dr. Doddabele wanted to admit me to the hospital for i.v.
antibiotics, but agreed to try the treatments here every day for seven days.
If it gets worse, or my fever spikes really high, I will have to be hospitalized.
The home health nurse says to keep
it elevated and walk on it as little as possible. SIGH ... I hope I don't
lose the progress that I have made in leg strength the past few weeks.

January 23, 2007 - The Results Are In! I
got the results of my CT of chest, abdomen, and pelvis today. After 4 1/2
cycles of Gemzar/Taxotere (the 1/2 cycle was Gemzar only), my results are:
STABLE with slight shrinkage of
lung tumors and NO new growth anywhere!!!!!
The plan now is have 2 more cycles
(I had a treatment today of Gemzar, so 1 1/2 more cycles to go) and then
a break, followed by close monitoring with CT scans for any new growth.
It is the news we were hoping to
hear, and I am relieved and thankful.

January 13, 2007 - That Feeling of Falling About
three days after my double chemo treatment, I get a bad case of "the
miserables". It's really hard to explain; I'm not sick or nauseous,
but I feel like I have been plastered to my chair. There's just no energy
anywhere in me, physically or mentally.
When this happens, I get a dizzy
sensation of the world whizzing past me. Everything seems to move too fast,
and I just want to SLOW DOWN for a while.

December 30, 2006 - Going, going ... Well,
here we go! I'm strapped into the seat of the roller coaster, gripping the
handbar for dear life. Ahead, I can see the hills, valleys, loops, and curves
that await. I feel both terrified and exhilarated at the same time.
When my sister and I were young,
we lived within walking distance of the annual county fair. My mother would
take us there on a footpath that cut through the swamp. As we whirled around
on the scrambler or the ferris wheel or some other ride, I would think,
"We are really here. This is happening right now." (I know; I
was a strange child.)
That's true of life, too. My body
isn't perfect, and some days are better than others, but I am here. I don't
want to mask the pain or sleep my life away in a fog of medications. I want
to feel the wind on my face as I careen through another year of highs and
lows, mountains and valleys. I want to feel every minute of it!

December 25, 2006 - Merry Christmas
to All! Tomorrow
morning at 6:15 am marks the one-year anniversary of my fall from the spinal
tumor. It's really hard to believe that it has been a year! I couldn't feel
my legs, I lost all bowel and bladder control, and the doctors gave me a
20% chance of ever walking again. I came home from the hospital on New Year's
Eve, weak and terrified. For a while, I really wanted to die. When it became
apparent that this was not an option, I decided to climb up out of that
hole one way or another.
The Lord has really blessed me,
because I have suffered a lot this year but I am ending it in much better
shape than at the start of 2006. It's hard to describe all of the blessings,
small and large, that have helped me make it through this year. There were
the kind health care workers - nurses, ambulance drivers, home health nurses,
and my physical therapist who helped me find the courage to stand and eventually
walk again (Thanks, Kelly!). There were the school teachers and staff, churches,
and neighbors that brought meals, food, household supplies, school supplies,
and gift cards. There were so many cards and letters from our church, our
friends, and our relatives. Later this year, I discovered Chemo Angels,
and my new friend Lorie has sent me so many kind gifts and cards that I
can't list them all. Of course, there's Don, the love of my life, who has
taken care of me and helped me become more independent. Most of all, there
were the prayers offered up on my behalf from people all over the country
and even around the world. I KNOW those prayers helped me through the darkest
days of this difficult year.
I'm the eternal optimist, so I
have high hopes for 2007. I'm looking forward to a new year!

December 19, 2006 - Cancer, Cancer,
Cancer I
haven't written much lately because, well, frankly I am sick of talking
about cancer. I'm sick of thinking about it; I'm sick of dealing with it;
I'm sick of my whole world revolving around it. It reminds me of the year
that Josiah turned three years old. He didn't like the fact that he and
Autumn were born on the same day, one year apart. He said, "If I share
my birthday with my sister this year like a big boy, next year can I have
my own?"
I know just how he felt. Sometimes
I just want to say, "Lord, I've handled this cancer thing the best
that I can. For the past six years, I've tried to keep a good attitude through
the horrors of medical testing, surgeries, radiation, chemo, and the rude
stares of strangers when I go to town. I've given up walking, working, HAIR,
and much of my prized independence. Can I have a break now? Please?"
Unfortunately, Josiah could not
have a separate birth date, and I cannot have a break. This IS my life,
and changing the year on the calendar isn't going to change a thing. But
I CAN take a break from thinking about it so much, can't I?

December 16, 2006 - Starers - UGH! What
in the world is wrong with people? Haven't they ever seen a bald woman (with
head covering) in a wheelchair before? I'm going to get a t-shirt that says,
"Keep watching ... my head does tricks."
We went to IHOP a few days ago.
A woman in a booth stared at us until her eyeballs nearly popped out, then
whispered something to her companion. He then turned and stared, too. I
checked to make sure that there wasn't snot hanging out of my nose or blood
gushing from an orifice, but I could find no offense other than just being
me. If one my children stared at someone like that in public, he/she would
be very quickly corrected. And these were adults!
I don't want their attention, and
I definitely don't want their pity, because I am NOT pitiful. I just want
to be left alone to enjoy feeling well enough to be up, dressed, and out
of the house. They would REALLY stare if they could see me at home, sitting
around in my gown with my bald head shining, peeing on myself while I throw
up in my ninja turtle bucket. Maybe I need a 24/7 web cam of my lift chair
-- "Cancer Cam". That would be hilarious!
Yes, there are many helpful people,
too, who hold doors open or move obstacles that are in my way. I really,
really like those people. They make the world a better place. A little kindness
goes a long way.
Hey, and just for the record, I
am not QUITE bald. My hair grows back some between treatments, so there's
a little peach fuzz up there. My eyebrows, however, are almost gone, and
their absence makes my face look ghostly white.

December 4, 2006 - 18 Months Since Leg
Break! Today
marks the 18 month anniversary of the day my femur bone broke. Physically,
other than the chemo, I am in great shape now compared to those dark days.
(Of course, little did I know that a spinal tumor six months later would
make the broken leg seem like a walk in the park.)
I think I have finally turned the
corner from the last treatment (11/30). I actually did not throw up at all
this time (hallelujah!), though I did feel nauseous and have limited interest
in food. My main side effect has been overwhelming exhaustion that just
renders me completely useless for a while.
I've also been having some sharp
chest pains, especially after exertion. I am going to talk to my doctor
about it on Wednesday morning. Hopefully it's just indigestion or some thing
minor, but chemo can have cardiac side effects so he might want to check
on it. Believe me, after the whole spinal tumor disaster last winter, I
am all for checking things out! By this time last year, I was in so much
pain that I could not leave the house or even sleep in my bed. I remembered
that tonight when we went to school for Autumn's French Club banquet. I
asked Andrew if he came to it last year, and he reminded me that he had
performed in it. I was not able to go anywhere at that time because of the
unbearable pain. I had gone to UT Hospital the week before Thanksgiving
for CT scans, and I cried like a baby because I was hurting so much. When
Don went to get the truck, a woman came to me in the waiting area and asked
to pray to me because I was in obvious agony -- and believe me, I am a private
person. I don't broadcast my suffering, because I believe that everyone
has a burden to bear. Mine is no better or worse than anyone else's. We
all share in the suffering of this old world, and (as Christians) long for
the comfort of Heaven. Anyway, I was hurting so much that I called my doctor's
office and begged them to see me that day (while I was already in Knoxville).
They said there was no way, go to the ER, etc. I should have done just that,
but the thought of a four or five hour wait in such misery was more than
I could bear. Also, it was almost time for the kids and I did not know who
I would get to watch them.
I wonder, if I had gone to the
ER that day, would things have turned out another way? Or was I destined
(don't really like that word, but you know what I mean) to lose the feeling
in my lower body and to experience the challenges (what a euphemism!) of
this year? I don't know.
Andrew said that it was okay that
I missed his performance, but it made me really sad. He's out of high school
now, as you know, and he'll never be the child again that he was one year
ago. This stupid cancer has stolen so much!

November 23, 2006 - Happy Thanksgiving! I
did not have a treatment yesterday, so I'm planning to eat until I pop!

November 20, 2006 - Another Week, Another
Day I
am in the throes of the usual post-treatment misery, but I'm not letting
it get me down.
If the blood work done today shows
no problems, I will complete this cycle on Wednesday, 11/22. And yes, I
will be THANKFUL to get it behind me.

November 16, 2006 - Cowabunga, Cancer!
Yes,
I did get over my moodiness that spilled over in the blog one week ago.
I have my moments, okay?
I was pondering the meaning of
life today while I was hunkered down over my ninja turtle bucket. (Have
I told you about my bucket? It's my constant companion on those nauseous
days. It was actually a popcorn bucket, then a mini trash can, and now it
serves as my close friend in times of trouble. Since I am not very mobile,
I can't get to the bathroom quickly, and somehow vomiting on the carpet
doesn't do much for my positive outlook on life. Hence, the bucket ...)
Anyway, I was thinking about when
our oldest two sons were small. They loved the ninja turtles, and they were
convinced that the turtles lived under every storm drain in town. They would
stop at each metal grate to stare and call for them, hoping to catch a glimpse
of their heroes. Finally, anxious to get the errands behind me, I would
tell them that the turtles were probably out for pizza. They would sadly
agree, and we would go on about our day. Now, I wish that I could have freeze-framed
those moments, and that I could still be standing beside them, their 3 and
4 year old selves, as they searched intently for those turtles. I would
wait with them forever, if I could.
Why does life become so complicated?
Now they are young men, and they can barely spend a few minutes with me
per week. Where did the time go? Where did the youth go -- theirs and mine?
I find myself increasingly sentimental for the "good old days".
Ugh! This is how it starts, isn't it? I've got to stop looking back, and
start looking forward -- but to what? I can't do this to myself! There are
still many good days ahead of me. I need to work on my goal of walking (unaided)
again. I need to think about spring, vacation, and my goal to swim again.
I need to live without regret, without reflection, without hesitation.

November 9, 2006 - Warning: Moody Rant
Below! I
am completely exhausted -- physically, mentally, and emotionally. It seems
like each cycle is requiring a longer recovery time, with less "feel
good" time left before the next onslaught. It gets harder and harder
to force myself to go through it again, when I KNOW what's coming. Lucky
for me, I am the eternal optimist. (I will NOT throw up; I will NOT throw
up; I will NOT throw up; okay, maybe I will throw up, but just this once;
honey, where's my bucket?)
Right now, I am really down about
the quality of my life. Chemo has really kicked my butt lately, and it seems
like I am getting less and less willing help from the kids. (Hey, I warned
you that this would be moody!) In fact, they take advantage of my weakness
to do less and try to get by with more nonsense! Now, you have to remember
that when you are dealing with older adopted kids, you are dealing with
a sackful of issues that tend to pop up over and over. I understand that.
And you can't expect more than each one is capable of doing. I understand
that, too. But in a house with 7 teenagers and only 2 younger children,
it IS reasonable to expect more help. I spend the whole evening correcting,
reminding, cajoling, explaining, and repeating myself. Ugh!
To make matters worse, I have been
missing all of things I have lost to cancer: working, walking, driving without
help getting into and out of the car, going places alone, taking a five-minute
shower, taking a three-hour bath, swimming, using my sewing machine, climbing
steps, volunteering at the schools, being involved in church, standing over
the stove or the sink, MY HAIR!!!!, and a body that does not FEEL 100 years
old! I miss being YOUNG: lighthearted, fleet-footed, and blissfully happy
for no reason at all! I don't want to spend all of my waking hours either
fussing at the kids or vomiting in a bucket.
The fact is, I want more. There
HAS to be more, or what's the point in trying so hard to stay alive? I want
to have plans, to have dreams, to have SOMETHING besides my health as the
constant center of my life. I want to look in the mirror and see ME again,
instead of the scarred-up, tumor-laden, bald-headed freak show I have become.
Life, chemo, and stress have sucked all of the joy out of me, and the resulting
exhaustion has made me weepy and sad.
The bottom line is that there is
no happy ending. If the chemo works, they will want to keep me on it. If
it doesn't work, they will want to try something even stronger and more
toxic than this one. Or, I can take my chances with the cancer itself and
hope that it -- combined with a now-weakened immune system -- won't throw
me another curve ball like the spinal tumor and land me in the hospital
bed for another five months (or worse).

October 20, 2006 - Welcome Back, My
Friend The
main good news is that I have only thrown up ONE time from this round of
Gemzar, and that was on Monday night. I have been tired and sluggish for
several days, but not vomiting. Hurrah!
This afternoon, I turned the corner
on this treatment. I know this because my appetite came back. All of sudden,
I was ravenously hungry. I ate a side of beef, ten pounds of potatoes, and
six oatmeal cakes. Okay, okay, I actually had a frozen pepperoni pizza,
but STILL it was a wonderful gift to have an appetite and to WANT food again.

October 16, 2006 - Letting Go ... One
thing that I have realized about myself is that I like to be in control.
When I was having physical therapy in the hospital, it scared me when they
wanted to do things TO me. Instead, I insisted that they SHOW me what I
needed to do, and then I did it myself. I guess that make chemo harder for
me. I feel like a sheep at the slaughterhouse when I sit there, poison pumping
through my veins, knowing that the unpredictable yet predictably horrible
side effects will show up for days or weeks to come.
Dr. Doddabele predicted that this
round will take my hair, and, like clockwork, it started coming out today
in hunks. There are no bald spots yet, just a lot of thinning. I feel so
helpless when it happens. I don't want to be bald. I've never been bald
-- okay, Mom, put away those baby pictures -- and it scares me. It feels
so out of control, so scary. I KNOW it's only hair; that's what everyone
says, but until it's your hair, it's hard to understand. Maybe I need to
look up the guys from my graduating class; they could probably sympathize
with me! :-)
The main goal right now is to finish
this round (10/25) and the next one so that I can have CT scans done of
my lungs. Only then will we know if all of the suffering has been worth
it. Dear Lord, please let it be worth it!
I wonder if my mustache and chin
hairs will go, too?

October 4, 2006 - So Far, So Good ... I've
been a little tired, especially late today, but I'm still not sick. Of course,
it usually hits me the 3rd or 4th day, which would be tomorrow or Friday.
I took the Emend on Monday, had to get insurance approval so I couldn't
take it yesterday, took it again today, and will finish it up tomorrow.
After that, I will take the Zofran and we'll see what happens.
Also tomorrow, I will be getting
evaluated to start PT again. I am really excited about getting more strength
in my right leg, and maybe even working on walking better with it. I would
also like to increase my upper body strength to the point that I can pull
myself back up into the wheelchair if I land in the floor or get in the
swimming pool again. Finally, I need to strengthen those back muscles near
the site of my spinal surgery so that they do not ache so much late in the
day.
It's nice to have something to
work on that is not directly related to chemo and cancer (although the damage
was caused by the cancer). I just hope that I can stay well enough and strong
enough to handle chemo and PT at the same time.

October 2, 2006 - End of Chemo Cycle
2 Today
I spent about 7 hours at the hospital's chemo center for my double treatment
(Gemzar and Taxotere). So far, I feel great. The nausea usually hits about
three days after treatment, but I am trying a new combo of anti-nausea meds,
so maybe ...
The chemo center features a wall
of windows, but not really a panoramic view. You can see the construction
of the new Endoscopy center, complete with construction vehicles that would
really impress my seven-year-old son. It's not near the ER or main part
of the hospital, so there are not a lot of vehicles or pedestrians. Once
in a while you can see Lifestar's helicopter leaving overhead, and once
a beautiful Monarch butterfly soared past the window. While I was sitting
there, I was thinking about the fact that this months marks the six-year
anniversary of my diagnosis. I thought back to the day that Dr. Gordon called
me in (one week after the first hysterectomy) to tell me that the biopsy
had found the cancer. She tried to convey to me exactly how rare ovarian
leiomyosarcoma truly is (about 3 or 4 dozen cases in documented history),
but the rarity and gravity of LMS did not sink in to me until much later,
after I did my own research on the computer.
As I was remembering all of this,
I realized that wet tears were rolling down my cheeks. I had no idea on
that day that my health would decline like this and my life would change
from working and running to struggling to visit the potty without help and
needing assistance with most of my daily tasks. I didn't cry at that time,
and I have not cried many times over the years. No one wants to see me cry.
I guess it makes them feel helpless and sad, but don't I have the right
to cry about everything that I have lost and all of the medical horrors
that I face? I should be able to cry freely, or scream, or whatever.
At any rate, I am finished with
Cycle 2. I will have a Neulasta (white blood cell) shot tomorrow (10/3),
lab work (10/9), and then my next treatment of Gemzar alone will be on 10/16.

September 30, 2006 - Wow, Where Did
September Go? Today was a pretty good day, except that my appetite
is terrible. Nothing tastes right, and I can't even stand the thought of
most foods. For some reason, I can eat a regular Arby's roast beef sandwich
when I can't eat anything else. My daddy brought me one (in fact, he brought
them for the whole family), and it tasted really good. The crushed pineapple
that I had this evening also tasted good to me.
I've had a lot of energy today,
too. That makes me dread the treatment on Monday, after which the roller
coaster ride starts again. Still, I want to keep going with treatment.

September 29, 2006 - Blogging Again! I've
decided that I am going to start blogging again. I don't why, except that
I have too much time on my hands and more things to say than anyone here
seems to want to hear. What is it that makes people want to blog, anyway?
What happened to diaries that you guard furiously from prying eyes and then
bribe your siblings not to disclose their contents after a breach a privacy?
I guess I'm like a tiny ant stomping my foot in the desert, screaming to
the universe that I exist. Maybe we think that flinging our sorrows out
for the whole world to see (though it's likely that I'm the only soul who
ever travels here) somehow validates them.
Anyway, I was eating a Hershey
bar a few minutes ago. That doesn't sound very important, but after four
days of nausea and vomiting from that last chemo treatment, even WANTING
a candy bar feels like a victory. I held it in my mouth for a bit and marveled
at the texture of it - so smooth, so chocolate ...
We (and I don't know why I say
"we", except that maybe I am wanting to spread the joy) are going
to try another treatment on Monday. I really don't want to think about that
right now, since I am going to make pancakes because I am craving them.
Here's hoping my appetite holds out until I can get them done!

April 25, 2006 - One Giant Leap I
took seven steps on the walker today.

April 23, 2006 - Goals and Accomplishments Slowly,
slowly, life returns to normal. I am sleeping in my own bed again. It feels
wonderful to leave this room has become like a prison for the past four
months, close the door, slide onto my comfortable mattress, and put some
soft music on the stereo.
I also went to church again, and
this time I was able to shop and even have lunch (in the van).
It seems like I am able to endure
a little more each day. Of course, this week's PT goal is to WALK again.
I'm really, really afraid, but I'm more afraid of never walking again ...

April 16, 2006 - Easter Sunday My
stamina is finally improving, and I decided a couple of weeks ago to try
to go to church on Easter Sunday. Debby offered to bring her van, and we
borrowed a folding wheelchair ramp from the place I got my Jazzy. Don wheeled
me into the middle of the van after removing the van's seats, and I rode
that way to church and back home again.
We also decided to host an Easter
dinner at our house. We had over 20 people all together, and the ham dinner
was delicious. The kids had colored eggs and were able to hide and hunt
them out in the yard because the weather was absolutely perfect that day.
I realize that I am able to be
out of the bed for longer amounts of time now, and it feels great! Next
week's goal is to sleep in my own bed again! :-)

March 16, 2006 - Home, Sweet Home! Well,
I made it home from the hospital tonight after a long day of rehab evaluations
and medical horrors. In between the long sessions, I was lambasted by every
doctor and social worker they could find for my decision to leave rehab
prematurely and come home. I just could not take the loneliness and homesickness
and medical molestation any more. I want to be home; I NEED to be home.
I heal better at home.
In the end, I was given a "reluctant"
discharge rather than leaving AMA (against medical advice). They wouldn't
even let Don and his friend bring me home because we hadn't reviewed vehicle
safety during my stay. I came home by ambulance, and the girl who rode in
the back with me told me that I was the happiest person she'd ever seen
in the back of an ambulance. This may be true; I smiled all the way home!
:-)

March 1, 2006 - Stupid Human Tricks
Meet Raw Determination Yesterday Don wheeled me outside to the
truck and we tried at least a dozen times to get me into the truck. I was
able to stand solidly and even grab the handle inside the truck, but I just
don't have enough leg strength to pivot enough to lean against the truck
seat. We tried everything we could imagine, but it just didn't work out.
I came back into the house very discouraged, and even cried a little. I
wanted to go for a ride so badly! I haven't left the house (except by ambulance)
since a week before Christmas.
It really bothered Don that I was
so disappointed, so he was determined to work something out for me. He talked
to his dad about the ramp that they made me last summer. They decided to
add guard rails on the side and make the top of the platform bigger so that
we can wheel me to the top, turn the chair, and use the slide board to get
into the truck.
I DID IT! It was a little scary,
but I slid right into the seat in my blue nightgown! Don drove around and
I inhaled the warm air (it was a beautiful day) and enjoyed the sights and
smells of town. I panicked a little when we were figuring out how to get
the wheelchair back down the ramp, but it worked out okay. I think I was
just tired and little overwhelmed -- and happy, very, very happy.

February 27, 2006 - Adventures in Physical
Therapy I
did the "stand and pivot" today! I pivoted to my wheelchair for
the first time since all of this happened.
I don't want my PT to end this
week! It's the one thing that I've had going for me these past 8 weeks.
I'll have to keep motivated on my exercises so that I don't just shrivel
up again.
Hopefully Dr. Bratton (my orthopedic
surgeon) will order me a brace and another round of PT when I see him next
week. I really don't know if I want him to say yes or no about the radiation.
I'm really torn on that one.

February 26, 2006 - Two Months Since
"The Fall" I was a little bit sad today on the two-month
anniversary of my legs giving way beneath me. It has been such a tough time,
but I have come a long way since that terrifying morning. I was completely
helpless when I came home, and now I can move myself around the bed, stand
for short times with the walker, and spend several hours in the wheelchair.
Kelly (my physical therapist) even thinks that I can start trying to WALK
(with a walker) if Dr. Bratton will order a brace to support my broken leg
(and another round of PT sessions).
Still, I have lost two months of
my life to this crisis. What would I have done with the time if this had
not happened? We had plans for the days after the kids returned to school.
We were going to paint the kitchen, clean out the clutter left over from
Christmas, and make all of the usual new year's resolutions.
Instead, we have dealt with bed
pans and leg spasms, nursing visits and physical therapy, sponge baths and
medications. |