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Lydia
Hi folks,
I read an email topic that said "Share Your Story". I suppose
the person who asked for us to share our story meant a brief description.
This is not brief so I won't be surprised if you all pass on it. I
wrote this a year ago just to have a record of it all.
If you do read it, I apologize in advance if I offend anyone.
- Lydia
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TWO
I don't know if it is because I am trying not to believe it, or if I’m
just so used to hearing that I am going to die soon that it doesn't
affect me anymore. When they say children’s sensitivity toward violence
is dulled when they see a lot of violence on TV or in movies, I really
believe it now. I was told after my first surgery for colon cancer by one
of my doctors - "You better do everything you can this year." He said, "I
don't think you'll die this year (it was December 24, 1999). I think he
meant he thought I probably would live through 2000, but not much longer.
Needless to say, I didn't like hearing that. My surgeon said, "You have a
fair chance." I hung on to those words. My primary doctor (PD) said, "It
is in the lymph nodes, think of it as pollen floating through your body
looking for a place to land and to grow." Hmmmm, I didn't like that one
either.
The same week I had the colon resection, I was introduced to the doctor
who would be my oncologist. I took one look at him with his dark
eyebrows, gray temples on black hair, actually quite distinguished
looking, and forever after will think of him as "The Grim Reaper". He
said, "You have no choice, but to take chemo." I was not happy.
Just before I had my colon surgery, I knelt down before a picture of
Jesus and asked him,
"Please don't let the cancer be in my lymph nodes." When I was told that
it was found in two of my lymph nodes, I said, OK, well, that’s not so bad.
In fact, in the picture of Jesus I had been praying to he is in that pose
where he is holding up two fingers. I decided that’s what he was telling
me all along. That it was in two lymph nodes. Wrong.
I know it sounds crazy for me to think that Jesus was actually sending a
message to me through a preprinted picture, but I think when a person
faces their own mortality strange thoughts come into their minds. Maybe
not everyone, but I've talked to some who have dealt with fighting cancer,
and they tell me some pretty strange thoughts have gone through their
minds as well.
I'll tell you why I was wrong about the "message" I believed Jesus was
sending me in a minute. But first:
OK, I agreed to take the chemo. "I had no choice", so to speak. I showed
up for the first visit, and the Grim Reaper’s partner, another oncologist,
was scheduled to see me that day. He came in munching on a slice of
chocolate cake and without looking at me, began to read my pathology
report. He told me it was a "crapshoot" on whether I needed chemo or not.
He said it was up to me. He said, "It probably won't make any difference
in your prognosis if you take chemo because you only have two lymph nodes
positive".. I was confused, to say the least..
My husband, Mark, thought this doctor may be trying to get rid of me and
save his practice some money on treatment, instead of treating me. That
troubled him. As my 20-year-old daughter and her boyfriend sat with us
eating dinner that evening, I mentioned my dilemma. Chemo or no chemo. I
was definitely leaning towards "NO CHEMO". I had seen my PD right after
the visit to the oncologist and told him about the decision I had to
make. He said, "You have to take the chemo." I didn't want to hear that.
I said to him, "Why should I take the chemo now and feel sick now and
then feel sick later and die anyway? Why can't I just be sick later when
I am dying? He was not amused.
He said, "If you won't listen to me, I will call one of the most
respected doctors in cancer treatment and ask his opinion. In fact, I
will call now." He stood up and got on the phone. Sometimes I hate my
overly efficient primary doctor. I heard him talking about me and sure
enough when he got off the phone, he said, "You have no choice, you have
to do it." DARN!! Another one for that side. Back to the dinner with my
daughter and her boyfriend: Her boyfriend said, "I think you should talk
to my friend’s father. He is the leading cancer specialist here in
__________. His name is ________________." "Hey! I said, That’s the guy
who our doctor spoke with earlier today. I already know what he'll
say."
My daughter’s boyfriend told me the "leading cancer doctor" (LCD) was no
longer seeing patients, but was doing "research only" at this time. He
said he would talk to him and ask if he would see me as a favor so I
could ask more questions and get a full explanation as to why I must take
chemo. Well, my daughter’s boyfriend did have connections. The next thing
you know, I was sitting in "the leading cancer doctor’s" office.
The LCD read over my history and looked up at me with a pained look on
his face. "I know your daughter, she’s a very lovely girl," he said to
me. I knew he felt bad, even if he had seen thousands of cancer patients
before me, I know it still bothered him.
He explained it all to my husband and I. The statistics, the benefits of
chemo, the side effects of chemo and even outlined what he thought was
the best course of chemo for me to take. I thanked him and walked out of
his office knowing, "I had no other choice."
I showed up at my oncologist’s office a few days later and told him I was
ready to do chemo. He then told me that since there had been no studies
on people who had started chemo in the time frame I would be starting (I
was a few weeks past what the studies had been based on), he couldn't
tell me if it would help me at all. In other words, we don't want to
spend the money on you if we don't have to. Oh, these HMOs. Mark read the
prescription the "LCD" had given us, and the oncologist said, "Where'd you
get that, off the internet"? "NO", was the emphatic one word reply from
my husband. Mark was not at all pleased with the way these doctors had
handled me, and he showed it.
Meanwhile, the LCD had sent a letter to
these two oncologists (the Grim Reaper and his buddy) telling them it was
inexcusable that they had told me not to receive chemo. He told them some
other stuff, too. Like you better shape up, or you will be OUT. So.., all
of a sudden I was going to receive the unnecessary chemo with no problem.
Well, no problem about their agreeing to give it to me anyway. The next
problem was how they decided to give it.
A nurse did the first treatment. She was not an oncology nurse (that one
had quit earlier in the week). She was a regular nurse filling in. OK, it
wasn't her fault that she had trouble starting the chemo into a vein in
back of my hand. There was blood everywhere. All over my clothes, too.
She "hung a line" as they say, and finally got it in. The doctor decided
to keep a port in my hand because he did not know if he would have help
the rest of the week. I was going in five days straight for one week then
three weeks off, for a total of six months. I got through the first day,
but I was in agony because of the pain in my hand from the port.
The next
day, there was no nurse. So doctor decides he must administer the chemo.
He does not hang a line. He gets the tube of chemo and begins to inject
into my hand directly into the port. Mark says, "The nurse hung a line."
The doctor says, "Oh, that was unnecessary." He proceeds to do the "push"
and "OOOOOOOOOOHHHHHHHHHH, dear, dear, dear, did that hurt. He stops as I
groan in agony. He says, "I must have hit the wall." Well, you hit
something all right, you jerk, I am thinking to myself. He gives in and
hangs a line. For the next two days he hangs a line, and I am OK.
Then
Friday oncologist doctor is "out for the day" so Grim Reaper oncologist
gets to give me the chemo. Grim reaper takes the tube, lifts my hand, and
before either Mark or I can say STOP, he is pushing the chemo directly
into the port. Mark says, "No, hang a line, that will hurt her." Grim
proceeds to push it in at full speed and says, "I don't need to hang a
line, there is more than one way to skin a cat." It went in OK, but it
scared me. As I walked to the car after this last day of the first week
of chemo, I hung my head and cried. I don't know if I can do it, I tell
Mark. It’s one thing to take chemo, but to have to put up with these two
so-called doctors is almost unbearable.
Mark agreed, and that night he talked to my PD; and they decided that I
must be moved to another oncologist. Mark wrote a letter to my HMO
describing the whole mess in much detail, and our PD took it to the board.
Within the three-week break between my first and second chemo treatment,
I had a new oncologist!!!! Thank you, Mark. Thank you, PD. I am worried
about all the other patients Grim Reaper and his partner treat. Mark is
worried, too. He hopes his detailed letter will help to get these guys in
line.
I meet Oncologist No. 3. She is very attentive, very kind, and she
thoroughly explains once again why I am taking chemo. I meet the oncology
nurse. By the time a few minutes pass, I know she knows what she is doing,
and I am relieved!!!! I continue taking the course of chemo and
experience the typical nausea and tiredness. I found that keeping
something in my stomach at all times is imperative to lessening the
nausea. I put a piece of fruit or a dish of fruit cocktail by my bedside
each and every night because I wake up nauseated and just a few bites
really help. My hair does not fall out, but it does get very dry. I can
live with that!!! I am so happy that my hair is still on my head, unlike
some poor ladies I’ve seen who have lost their hair.
Finally, finally, after six months I have finished my treatment!!!! I am
so happy about this that I buy some candy for the oncologist’s office, and
I tell my husband we must celebrate!!! I have done it. I have gotten
through the chemo, and now I can try to get back to normal. It shouldn't
take too long to get my strength back, right? Everyone I know is happy for
me. You did it; you were so brave, they say. I am secretly pleased with
myself.
A week later I am watching Larry King Live on CNN. His guest is Diahann
Caroll, the actress who was the character "Julia" in the 70s. She is
telling Larry about her breast cancer. There is a doctor on the show with
her. Larry asks, "So do you think there are women out there who have
breast cancer right now and are unaware of it?" "Oh yes," replies the
doctor, "probably hundreds." I think to myself. I am so lucky I didn't get
breast cancer because even though I have a scar below my belly button
from the colon resection, I still have my nice looking breasts. 36C is a
good breast size, and I can still look good in underwear and a bathing
suit. Boy, was I patting myself on the back. It’s as though I was thinking
I had had a choice between cancers and chose colon cancer because it was
less obvious.
During the last weeks of my chemo for colon cancer I had felt the same
feeling as when I was pregnant and the milk came into my breasts. It was
sort of a tingling feeling, but a little painful. I made a mental note to
get my mammogram as soon as I finished the chemo. So two weeks after my
chemo treatment ended, there I went, just like a good little girl, to
have a mammogram. After a few x-rays of my breasts, the technician said
she needed more of the right breast. This didn't concern me because I
have always had to take numerous x-rays since, they tell me, I have dense
breasts. She took a few more shots. The technician asked me if my nipples
had always sort of inverted like they did now. I said "Yes" as I never
really had pronounced nipples.
A few x-rays later the doctor walked in.
She said, "I don't want to alarm you, but I think I see cancer." I said,
"How sure are you?" She said she, of course, was not 100% sure; but she
really thought it was cancer. Geez, I said, I thought because I was on
chemo for the colon cancer, I'd kind of be protected from getting another
cancer at the same time. I explained that a year ago I had had a fluid
filled cyst in this same breast, and it had been aspirated, and the
pathology report said no cancer. Because of that I was even more
surprised. The doctor said she has learned in medicine that anything is
possible, both good and bad.
She said she wanted to set me up for a core
needle biopsy to be sure. So in three days I was taken into a special
room and asked to remove my blouse and bra. I had to get up on a table
that had a hole cut through it. My right breast went into the hole as I
lay on my stomach with my head turned to the side. You must lie very
still as the doctor gives the injection in your breast and then the
computer does its work. It’s really quite amazing how this works. The
doctor inserts the data into the computer, and the computer sends the
needle into your breast exactly as programmed and removes tissue. It
really did not hurt, it just seems like a long time to lie still.
Well, three days later our Primary Doctor called my husband with the bad
news. I called my husband at work, and he said he was leaving to come home
to be with me and "yes" I did have cancer. My husband and I spent a
little time crying together and feeling sorry for ourselves. I was still
hoping that the cancer wouldn't be too advanced, and I wouldn't have to
have chemo again.
A couple of days later I was in the surgeon’s office again. He said he
was sorry I had to go through this again; but maybe I had caught it early,
and it wouldn't be too bad. He said he would do a lumpectomy and remove
some lymph nodes, hoping to save my breast. He noticed that my breast was
red and swollen. He thought perhaps it was because of all of the x-rays
and the biopsy. I was scheduled to have the lumpectomy later that
week.
I arrived early at the hospital breast center. I was asked to disrobe and
put on a gown that opened in the front. The doctors looked at my
mammogram x-ray and told me they would be inserting some markers
(needles) in my breast (a procedure called wire localization) to help
guide the surgeon during the excision procedure. I told them to do what
they had to do, but I would be looking up at the ceiling the whole time
because I was very squeamish and did not want to see them stick the
needles in.
They were very kind and gentle and inserted the needles. I
felt like a porcupine. They had to take more x-rays to make sure they had
inserted them in the correct spot. They reinserted some. Every time I had
to stand up to go to the x-ray machine they guided me because I was not
about to look down at my breast. I have been known to faint. Finally,
they felt everything was in place and removed the needles, telling me a
small piece of the needles had been left inside my breast to guide the
surgeon during surgery. I was glad that part was over.
I was taken into the main hospital to be sedated and prepared for
surgery. The nurses remembered me and said hello. In came the
anesthesiologist and before I could say "I feel sleepy", I was under.
About three hours later I woke up and felt my breast. It was still there,
and I was so relieved. My underarm really ached from the lymph node
removal, but that was no surprise and so I was glad it was all over
with.
The surgeon came to see me and said, "It didn't look good." He explained
that he could find no clear margins and so he was going to have to see
what the pathology report said before he could give me any further
information. Oh dear, dear me more bad news. Well, I’d just have to wait
and find out.
On Friday the 13th (I had heard that Friday the 13th was a bad day for
superstitious people, and I am a "superstitious people"), I got the call
from my surgeon. "I am so sorry to tell you this," he said, but I think
you have ‘Inflammatory Breast Cancer’. This cancer in your breast is not
related to the colon cancer. It is a completely different primary cancer.
It is very fast growing, and 10 lymph nodes were positive. I have
contacted your oncologist, and you will have to take a high dose chemo to
see if we can get the tumor manageable enough to take the breast."
"Oh
golly gee whiz, please get me out of this nightmare," I thought to
myself. Mark had listened on the other phone as the surgeon gave me the
news and within a few seconds of the surgeon's call, my parents and my
sister happened to knock at our door. I could hear Mark telling them what
the doctor had said. I ran downstairs and cried out loud and told them I
just wanted them to know I had been very happy in my life. I really felt
as if I was going to die so soon that I wanted them to know I was
thankful for my life.
I told them I was right again. I told them I had
asked the surgeon if it could be IBC, but he was hoping not. "Oh no, he
had said, let’s hope the inflammation is just a reaction to the testing
you've been through." I told them how I sensed it was colon cancer when
no one else did and I felt this was IBC when no one else did.
My father
said, "Now it’s time to get some good positive thoughts in your head and
think yourself well." I know he was hoping I somehow had some control
over my body and the cancer. I did know I had some control over how I
would live with the cancer. I sat and stared at everyone and tried not to
cry anymore. Now I knew what Jesus was telling me. He was saying, "You've
got two cancers, lady." It was kind of funny.
Chemotherapy Phase II for IBC was started the following week. I would
get one treatment that would last about 2 hours followed by three weeks
off. Back I was seeing my oncologist. She tried to tell me some good
news. Like even though the cancer is a fast growing cancer, that is the
type that chemo is most effective on. She told me I would lose my hair in
about three weeks.
I took the first dose and felt like I really just
wanted to get into bed when it was over. That first night was the most
physically horrible night I have ever been through in my entire life. I
cannot even describe the painful headache (so much worse than a
migraine), or the feeling in my body that I am so sick that I welcome
death. I prayed for God to take me. I didn't even care if my children
would lose me. I thought to myself, "They'll be OK." Never had I dreamed
I could have those thoughts in my head, but I did.
Two days after the
chemo I went to a scheduled appointment to see my oncologist. I told her
I was in so much agony that I would like to just stop the chemo and
didn't care, in fact, welcomed death. I could barely keep my head up. She
examined me and told me I would be receiving some "Nupogen" shots and she
would change my anti-nausea medication. She told me I must try this to
see if it made things better. OK, anything to make it better. She was
right. After several hours I felt a dramatic improvement. I knew now I
could go on with the chemo.
I have a cousin I am very close to, and when he heard of my cancer, he
gave me a gift of a trip to Las Vegas. My parents, sister, cousin, and
best friend came along with Mark, my daughter and my son. On the second
day of the trip my hair started falling out. Large clumps of hair come
out in your brush as you brush your hair. I put a scarf on my head and
enjoyed that week in spite of myself. I see the pictures from that week
now and think that it must have been scary for my family to see me as I
looked very pale, weak and strange with those scarves on my head. They
never said a word about the way I looked. They just helped me have a good
time.
I continued my 4 treatments, staying away from crowds at certain times of
the process to limit my chance of catching a cold or flu. My oncologist
said my breast showed improvement, and the swelling was down. I met with
my surgeon (I figure after a few operations I could refer to him as "my
surgeon"). I told him I wanted both breasts removed. He explained to me
that the other breast did not have cancer in it and that "Whatever time
you have left on this dear earth, is already decided by this breast with
cancer." I asked him what the procedure would be if I did in fact get
cancer in my other breast later on. He said, "You know, depending on what
stage, etc., lumpectomy, lymph node dissection, maybe breast removal,
maybe chemo." I asked, "With no breasts do I still get mammograms?" "No,"
he smiled. "Well, then that settles it, I want both breasts gone."
A week later I was sitting up in the hospital bed with what felt like a
"straight jacket" wrapped around me. I knew my breasts were both gone
now. Actually, it did not hurt very much. I walked the hospital corridors
with my IV and visited with my family. It was not as painful as the
lumpectomy with the lymph node dissection. I suppose there are not as
many nerves in the breast as under the arm. I had two drains on each side
of me to collect fluid. These were only a nuisance. They do not hurt, but
being the squeamish person that I am, I didn't like to see them. I felt
like a cow with dangling udders. I was able to go home after one night in
the hospital. I was supposed to leave the bandages on for one week then
go to the surgeon to have them removed. To take a bath at home, I filled
the bathtub half way, put a soft hat on my head, and safety-pinned the
drains to my head to take my baths. This cancer is hilarious
sometimes!!!!
After 6 days I decided to do the "unveiling" myself. The bandages were
really falling apart all around me anyway. OK, so I stood in front of the
mirror and cut the bandages off. Standing there staring back at me was
this chunky bald person with scars across my slightly sunken chest. A
flash of my former "young" self came into my head (you always imagine
yourself at your best ever at times like this). In my mind was a memory
of myself at 28. I think that’s when I looked the best in my whole life.
Geez, how did that person in my mind become this person? It was so sad it
was funny. I remember thinking that I desperately needed lipstick.
Lipstick!! That’s all I could think about. I had to put some lipstick on
if I was going to look at myself ever again. I took out my most expensive
lipstick by Revlon and applied it. This felt much better. I made a
mental note to get myself some more Revlon. Strange how a little thing
like lipstick can make such a difference at a time like this.
I had
decided not to have reconstruction because I felt like it might just
prolong my healing time. I was thinking I probably would only live a year
or two anyway with these two cancers, and I didn’t want to put myself
through any more trauma. I also knew radiation was coming...
On my next visit to the surgeon’s office, he took a large needle and
drained some of the fluid build-up around the scar. I didn’t feel a
thing. He said I would only get partial feeling back in time. A week
later I went in to see him again; and as I bit on my sweater, he pulled
the drains out. It hurts, but it’s over in a second.
A few weeks later I went in for the radiation set-up. I would be having
33 treatments.
Of those, the last 5 were called "boosts". It took less then an hour to
get my chest marked and the plates ready for my treatments. I was going
to have radiation in the shape of an iron but much bigger, extending from
the middle of my chest to my underarm. After a few treatments I really
did look like an ironing board where someone had left an iron sitting for
too long. After all, I was flat as a board! The radiation treatment
itself takes only a couple of minutes each day. It is painless while it
is being applied. It is only near the end of treatment when your
radiation area begins to blister that you have pain.
I was given a solution to apply each day and that really helped, but I
couldn’t move my right arm very much during the last few days of
treatment because that would just make the skin open up and irritate the
whole thing. Just the simple act of stirring a pot of pudding had really
aggravated it. So I was on vacation from doing any work around the house
until the healing was well underway. I had my last treatment on a Monday,
and that was one of the biggest reliefs of my life.
Within two weeks, the
blistering healed; and I could look forward to getting my prostheses.
Luckily there is a store in town that specializes in prostheses for
cancer patients. I was taken to a dressing room and several different
kinds of false breasts were put on the table so I could have a choice. I
decided I wanted to be a 34B from now on. I thought my clothes might fit
better. Hey, if you can remake your own body, may as well do what you
want. I tried several bras on that are made to hold the prostheses and
several different kinds of prostheses. I had had no idea there was so
much to choose from. I spent a good amount of time in that dressing room.
The women who worked in that store were absolutely kind. I thanked them.
I mentally thanked the prosthesis and bra makers for doing such a good
job. I decided to wear them "to go", just like you do when you buy a pair
of new shoes sometimes. I walked out of that store feeling whole again. I
walked out with hope and a determination to live.
Maybe it’s not good for some people who are just about to begin therapy
to read about what I went through. I guess my whole point of writing
about this is to tell people what I found out through my experience. I
found that even though the road of treatment is tough and sometimes you
think you "can’t" do it, that you have inside of you so much strength
that you never guessed you had, and you can, and you will get through. You
will get through to this other side that I am at now.
That is the time
after the treatments have stopped, and your hair grows back, and your
physical strength comes creeping back into your body. You don’t have to
think about getting needles stuck in you very often. As time passes, when
you wake up each day, you begin to think of other things besides the
cancer. You live and you enjoy living. You no longer worry about things
that once would have made you so miserable. Even if the cancer should
return, you know you can face that and deal with it because you’ve
already done it. You are thrilled to have this time of feeling good. You
realize that life is all just a great big blessing and you will enjoy
whatever amount you can have of it, and you go on. I never took life for
granted before, but I smile a lot more now.
One more thing, in the time that I have been fighting cancer, my son, John,
(now 16) has been fighting right along with me. He became involved in our
City’s Relay for Life program to fight cancer, raising funds and
participating in our yearly community fight. He created our City’s
website.
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