CLOUD 9 WALKERS
The picture of a Cancer Survivor!
(UPDATE) Taken 10/12/07 in the mountains of Kentucky, on my horse "Dakota".
It's My Turn Now
"I'LL BE BACK!!"
My last wonderful, fantastic, incredible weekend before surgery, in the sunshine in Lake Sam Rayburn. This was taken on Saturday, 9/30/06 by my son, who came home from college for the weekend. A day from heaven! (And yes, I was so happy, grinning so big that a few seconds after he snapped this picture, I caught a 9-lb. bass . . . it just up and jumped right up out the water into my big mouth! lol) Click on this picture ABOVE to see our wonderful day.
As some of you know from my website, my mother died five years ago from colon cancer, and I have dedicated part of my website to hopefully warning people to be tested early for this treatable and curable disease.
I was tested recently, and while I will admit it was not a pleasant experience, it was not as bad as I thought, and I did have a clean test -- no colon cancer for me.
However, I recently (in July) had surgery to remove fibroids (which most women have whether they know it or not), and two weeks later I went in for my first post-operative checkup. My doctor walked into the exam room, and when she asked me if I had brought anyone with me, my heart stopped. I knew in that moment, my life as I had known it, was over.
The pathology report indicated a malignancy, yet the source was undetermined. In laymen's language, I had cancer, but nobody knew exactly where it was.
The problem in this day and age is that it doesn't really matter how worried you are or how severe your problem is -- you simply have to wait your turn to see a specialist. I asked my doctor to refer me to M D Anderson, where I had spent many hours with my mother years ago, because I knew this institution is number one in the nation for cancer. For some reason, she didn't seem inclined to honor this request, but wanted to refer me to another hospital and oncologist, citing probable rejection, since I had not been formally diagnosed yet. I restated my preference, and then begged her staff not to make me wait a week to hear back from them, but after two days, I called and reminded them to please set me up with MDA. After two more days of not hearing back, I called MDA myself, and after a 30-minute discussion with receptionists, finally got through to the proper person and made my own appointment. The next day, my original doctor's office called to tell me that they had an appointment set up for me at the "other" hospital. I told them to cancel it, that I was now in control of my own care.
Unfortunately, I had to wait three weeks to get in to the first doctor, only to be told, after examination and consultation, that I was not his department, and he referred me to another specialist. I had to wait two more weeks for that appointment, and then was told that I was in the wrong department again, that I was in the "benign" department; however, they got me in to the "malignant" doctor that same day. After examining my records and my body, he denounced me, also, and referred me to the third specialist. His nurse gave me a card with the phone number on it, and told me I would be receiving a call within a couple of days to set up an appointment. I told her that that wouldn't be necessary -- I was going to go back to the 7th floor and sit in their waiting room until they came out and personally confirmed my appointment.
During all this time, I had done HOURS of research on the Internet on my suspected cancer, which was terribly frightening and depressing, but it was almost morbid fascination -- I HAD to have some answers while I was waiting and waiting to get an answer from someone -- anyone! I suspected appendiceal cancer. Sounds harmless, right? We can all live without our appendix. However, this cancer is so rare, that not only is it hard to find a doctor specialized in it, but it has no symptoms, and it is rarely discovered until it has already left the appendix and spread to other organs. In a nutshell, this means catastrophic surgery (referred to as "MOAS" -- "Mother Of All Surgeries"), because the appendix has to be removed, any other organs affected (ovaries, uterus, spleen), usually your omentum is removed (lining off your stomach), and your entire right bowel. The preferred treatment afterward is heated chemotherapy applied directly into the abdominal cavity during surgery, and 50% of patients lose their hair afterward. Fortunately for me, MDA performs this procedure, but even Sloan-Kettering in New York does not offer this method yet. All the research I had done stressed that successful cure was directly related to the experience level of the surgeon.
I was so desperate for answers, now that months had passed since first hearing the news from the pathology report, that I did go sit in the third specialist's office. Since MDA is a three-hour drive from my house, I didn't want to have to come back soon or wait by the phone. My research had turned up Dr. Mansfield as the preferred doctor for my condition, but much to my dismay, when his assistant came out to help me (after waiting an hour), she informed me that he had a three-month waiting list to get in to see him. She did set me up with his colleague, Dr. Laura Lambert, and I reluctantly agreed. What to do? Wait for the most experienced doctor and take a chance on the cancer spreading more, or go with the less experienced doctor and just trust blindly?
I had to wait yet another three weeks to get in to see Dr. Lambert, and while I was waiting, I went ahead with life, flew to Montana for the training class I had already planned. Life sure looked different now . . . experiencing turbulence on the plane was not the least bit scary to me. I would much rather go down on a plane than suffer a lingering death like my mother did.
In my research, I met a wonderful, caring nurse named Carolyn Langlie-Lesnik, RN BSN who has set up a very informative and helpful website at www.appendix-cancer.com and in addition, spends hours on the telephone with patients across the nation, trying to educate and give inspiration and consolation to those of us going through this disease. She is particularly inspirational because she is a 5-year survivor, herself.
I am scheduled for surgery on October 6, 2006 and will probably be in the hospital for almost a month. Best case scenario is that they remove all signs of cancer, kill the unseen cells with the chemo, and life will go on. They are telling me that it will be at least four months before I am able to ride, and since I don't represent horses that I don't ride and trust myself, I won't be doing horse business until next Spring. It's time for me to let go and let God.
I am setting up this page as a blog to hopefully be helpful to others who find themselves in this situation. Although a rare cancer, there are many out there suffering with it. If you are interested, check back from time to time to see how things progress.
Thanks to all of you who have included me in your prayers, and to the Powells: I LOVE my new pink leather bible!!
Big Bend in March, 2004 -- notice that the blue bonnets were already in full bloom!
My favorite iron horse, an '88 Softail. Hopefully, I'll be back on it soon!
9/30/06 overlooking Lake Sam Rayburn, on the horse I can't seem to part with "John Wayne".
September 21, 2006
I got to MDA at 11am Thursday morning, 30 minutes early for my lab work appointment, and they got me in and out by 11:15. My next appointment was 1:30 with the anesthesiologist so I had lots of time to kill. MDA is a virtual hub of drama, and I have found that when I go there by myself, I get wound up emotionally in the people I see.
Awhile later, I was sitting in a crowded waiting room, realizing that appointments were running over an hour late, a frequent occurrence, I am finding, in a hospital with many, many sick people from all over the world. My heart was aching for a young father and his small, bald wheelchair-bound daughter, whose big eyes were staring out through bifocal glasses from behind a mask.
Years and years ago, my mother was diagnosed with leukemia
(CLL) and had to undergo occasional bone marrow tests. The first time, she
had no idea, and went by herself. The doctor got up on the table,
straddled her chest and plunged a needle into her breastbone to draw the marrow
from. It was terribly painful and traumatic for her, and when it came time
for a 2nd test, I insisted on going with her. This time, they drew it from
her hip, and I insisted on them giving her some Demerol. As they prepared
her for the test, I held her hand and I could tell she was in 'lala' land from
the Demerol, but when I heard that needle (that looked about the size of a
sewing machine shank!) crunch into her hip bone, I slowly began to sweat, get
nauseated, and pass out.
I'm not sure if this is the reason that I have a phobia
of IV needles now, but when I have to get an IV or donate blood, I break out in
a sweat, get nauseated all over again. I find it terribly embarrassing and
Thursday, I had no problem when they pulled my blood for lab
work -- I didn't like it, but the needle is so small and it's over so quickly.
However, my blood donation appointment was another three hours away, so I took
the luxury of using that time to fret and agonize. I stopped by the blood
bank and asked if they could use Lidocaine on me to lesson my anxiety level and
they said no. I entertained the idea of begging my doctor to let me out of
the commitment to donate my own blood for the surgery.
My anesthesiologist appointment was next, and he turned out
to be a really, really nice, compassionate man. I explained my fears, and
he addressed them all. I told him that I understood that he would be
performing an epidural on me, and I had made up my mind long ago that I would
never let anyone do that to me, because if anything slipped, I would be
paralyzed. He explained to me that he had done thousands of epidurals with
no trouble, and that with this dangerous and painful surgery, I would need an
epidural. We discussed colostomies and my aversion to them, and he said
that he used to be a surgeon and that I needed to understand that if the doctors
thought the colon needed to have more time to heal, that they should absolutely
do a colostomy, and that it could be reversed later. I almost cried.
This all felt like standing in a line in a war camp, waiting for the guns to
fire. Then I told him how foolish I felt, but that I was about to have a
nervous breakdown anticipating my blood donation after I left his office.
He threw his head back and laughed and laughed, not really at me, and not
offensively, then he took my hand, held it and apologized. He said he
thought he might have been insensitive to be laughing, but that he could help me
get over that phobia. Then he started the standard "think of the
beach, think of the waves, count the ceiling tiles" speech. I told
him that I might need to try out LSD or heroin to distract me, and that I wish I
had taken Valium or Xanax to relax before my appointment. He asked me why
I hadn't? I told him that I thought it would interfere with the blood, and
he said no, and prescribed one single pill for me to take. I ran to the
pharmacy, got the pill and took it, but it must have been a baby dose, because
it did nothing.
When I got to the blood bank, I started my whining all over again, and the supervisor laughed, told me that the nurses there were very good at their jobs. He offered to kick me in the shins to divert my attention, put stickers on my forehead, tell me his life's history, whatever it took. He made me smile.
Then I had to be examined by the blood bank doctor, and when
I told him my 'problem', he laughed, too, and said that he would help me through
the experience. Before he started the "think of the beach, count the
ceiling tiles" speech, I told him that the only way to get my mind off the
needle was to bring in 5 big Hawaiian guys to fan me. He laughed again.
Meanwhile, three college students had come in to donate blood
for a friend's mother, and that made me almost burst into tears. What a
compassionate thing to do! My faith in America's teenagers was
renewed. How could they be so brave and me be so foolish about this?
And they did it without the help of any hula girls!
When the time finally came, the doctor spent 15 minutes
standing over me, pampering me with his full attention. The nurse who was
supposed to draw the blood kept getting sidetracked with the college kids, so
the doctor stopped him and made him dedicate all his attention to me. The
supervisor disappeared, then came back wearing a ridiculous shark hat on his
head, and I felt like crying again, that these guys were trying so hard.
My cell phone rang, and the doctor told me to answer it, grateful for yet
another distraction. The call was my daughter, and when they heard me
telling her that I was about to get the needle and I would have to call her
back, all three of them shouted in unison, "NO! Keep her on the
phone!" Now I was ashamed that I had FOUR people pampering me!
The guy put the needle in, and it hurt like the dickens, but
magically, there was no sweating, no nausea, and I survived!!! I asked for
all of their names so we could repeat this performance next Thursday, and they
all agreed, except the nurse -- he covered up his nametag and said that when he
saw me coming, he was going to hide!
Each person who donates blood gets a really pretty t-shirt
with a beautiful drawing on it, which was created by one of the kids in the
hospital, like the Christmas cards they create. The nurse was still trying
to make me feel special, so he told me that I deserved a better gift than the
t-shirt, and he brought out an MD Anderson tote bag. He held it in one
hand and the t-shirt in the other, and asked which one I preferred. I
looked at both, flashed back to my negotiating training, batted my eyes at him
and said, "Wasn't I a good enough girl to get BOTH gifts?"
He looked around the corner to make sure the doctor was gone,
then 'secretly' stuffed the t-shirt into the tote bag and gave them both to me.
Big sap that I am, I almost cried again!
I traveled to Montana on a business trip for a week-long training class,
thinking I was going to enjoy a 'mini vacation' at the same time. My fellow
classmates also flew in from several states, and we discovered the very next
morning that our days would begin at 6am and not end until 9 or 10 at night.
We were in class by 8am, out by 6pm, but then we regrouped and networked at
dinner each night, so there was no time for vacationing. Since none of us
were teenagers, it didn't take long to dread that wakeup call each morning!
After seven consecutive days of sitting in the same room, listening to speakers,
being issued group challenges and pop quizzes, we could feel the effects of our
lack of physical exercise. By the end of the week, I was more exhausted
than I would have been if I had competed in a triathlon!
last day of our classes, our hosts took us on a 'field trip' to tour some of the
beautiful Montana sights, which included a nature park on the Yellowstone River.
We stepped off the bus into the sunshine and I knew immediately that whatever
lesson was being taught that day, I was not going to be capable of absorbing.
Mother nature had captivated me.
on the gulf coast of Texas all of my life and being used to walking out the door
each morning and instantly gaining 10 lbs. from the sticky humidity, I wondered
how I could bottle this glorious Montana day and take it home! The
September sun was shining, the temperature was 68 degrees and the humidity level
was about 17%, making me feel 10 years younger.
having been one with patience for structured tours, I seized the first
opportunity to slip away from the group and explore on my own. I could
hear that river calling me, but on the way, I spotted a deserted playground with
several swings, so I kicked off my sandals and took a seat, pushing off and
leaning back into each swing, gazing at the sky, making me feel 20 years
younger! I found the biggest thrill was digging my toes into the soft sand
underneath the swing, drawing faces with my toes and flipping sand in the air.
After my little carefree workout, I sat for awhile listening to the wind blowing through the magnificent giant cottonwood tree tops, mesmerized by that same breeze which was caressing my face, my hair, and tickling through my toes. My joy was abruptly interrupted by a jolt from reality, as I reflected on how fragile life is. I had just been diagnosed with a rare cancer a few weeks before, and after being transferred around to different doctors, none of which could tell me where the cancer was, the waiting for a diagnosis, prognosis and plan of treatment was agonizing. I was not only facing a very dangerous surgery and chemotherapy, but also my own mortality. I found myself choking up frequently, desperately trying not to break down crying in public, since this situation was on my mind constantly.
broke out of my trance long enough to remember the Yellowstone, so I put my
shoes back on and took a ten-minute hike to the bank, where a posted sign
stated: "Approach River At Your Own Risk". The reason for
the sign was a visibly fast current in the middle, but the first 2 or 3 feet was
crystal clear and calm enough to see tiny minnows scurrying around over the
glistening smooth pebbles and rocks. I could not resist the temptation to
wade in, and the water was so cold that it took my breath away. After a
torturously exhilarating 15 seconds of icy heaven, I acclimated (or became numb)
and waded out farther, wetting my Capri jeans to knee level. I could still
hear the cottonwoods singing in the wind, harmonizing with the gurgling of the
water rushing over the rocks, and I had to resist the urge to just dive in.
around for awhile chasing minnows, I managed to put my misery aside and began to
feel absolutely at peace, just me and my own little secluded slice of Montana.
I hunted for the most beautifully polished river stone with iridescent stripes,
and put it in my pocket to cherish when I returned to Texas. I imagined
that the only way this experience could possibly be better was if my kids were
there to share it with me, and wished desperately that I could see into the
future, to know how much time I might have left to spend with them.
Smiling at the thought of their company, I dug into my pocket, flipped open my
cell phone and called my daughter while the clear cold water flowed across my
legs. Since she didn't answer, I left her a voice mail, telling her that I
was standing knee deep in Yellowstone River and that it was the highlight of my
year. I snapped the phone shut, reeled myself back to reality and hiked
back out of the river, up the bank to rejoin my classmates on their tour.
I felt so refreshed now that I believed I could have probably taught a class
that night, when I got back to my hotel room, I logged online and found an email
from my daughter telling me about her frustrating day. Everything had gone
wrong, it seemed, and then she had started a new job that day with better
benefits and insurance, but discovered that she had taken a substantial pay cut
from the job she left. Waiting on a list for an opening in a training
program in the medical field, she wasn't sure how she was going to get by on
these reduced wages. Then she told me that she had barely missed my
"river" phone call and had tried to call me back, but couldn't get the
call to go through. However, she said that hearing me sound so happy made
her bad day good, and that she loved me.
that moment, I discovered that a simple email could be as powerfully moving as
the mighty Yellowstone River.
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