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These four pages document a personal experience with breast cancer and 6 weeks of radiation therapy. Linda's Journey is the diary of a very special woman's personal experience in facing her greatest fear, and confronting her breast cancer with courage and strength. You will find it both moving and triumphant. She and her husband Charlie shared their journey with many of us on a public forum. We travelled along with her, cried with her, laughed with her, and cheered for her. I hope as you read her beautifully written story that you too will be as moved as we were. And that you will share her words with your mothers, your sisters, your daughters and your wives. Linda has taught us that facing our fear is the only way to defeat it.
October 28, 1998...
 I met with the radiological oncologist yesterday to have my many questions answered about radiation therapy. I have to tell
you, although the Cancer Center is a warm, cheerful place, with elegant, non-hospital furnishings and a "homey" atmosphere, it
was so sad to be there. Those few people I saw made my heart hurt. I know they save lives, and the staff are very warm,
caring people, but it really hit home yesterday afternoon that I'm not waking up from some bad dream....that I will have to be
here for the next 6 1/2 weeks of my life....and I'm one of the lucky ones. The oncologist explained the immediate side effects of
radiation therapy: fatigue and possible irritation of the area being x-rayed, dry skin, a possible rash. They may have to interrupt
the therapy to allow the rash to clear. The long term effects: scarring of the portion of my lung exposed to radiation, brittleness
of the ribs exposed, and lowered blood count. They monitor the blood count every week, monitor the irritation to the skin and
take appropriate measures to ensure my health. There may be some short term swelling and edema, but that should clear up
soon after the treatment is finished, and that also is closely monitored. Tomorrow I go to have my *ahem* personal part
"tattood". They place a series of dots to guide the x-rays. Since these will be permanent, I had to sign a consent form. I guess
my eyes got rather big at the mention of a tattoo, because she laughed and said "No, no roses or anything like that." Well,
shucks...I would've at least opted for a little one.
I actually had three options; a lumpectomy alone, a lumpectomy with radiation, or, in my mind, the last resort, a mastectomy.
I've already had the lumpectomy, now I'll have the radiation. She explained that they assign 3 levels to breast cancer based on
the size and number of cancer cells in the area, with level 1 being the lowest, then level 2 and finally level 3 being the highest.
Mine was a level 3 cancer. The good news in this is that mine does not spread to the lymph nodes, into the surrounding tissue,
or into the bloodstream; it stays local. Although it was a level 3, it was caught at stage 0....very, very early and very small. In
this case, they always do radiation therapy after a lumpectomy of a level 3 cancer (I think I've got this right!). The radiation is to
kill cancer cells in the breast too small to detect through mammography, or palpation. The prognosis is not good if a
lumpectomy alone is performed. My prognosis is very good...however, if the cancer recurs in another duct in this same breast,
a mastectomy is performed because you can't do radiation twice in the same area. Along with the cancer cells, some healthy
cells are also killed...so it's not feasible. Trust me, I asked.
My radiation therapy starts Monday. I asked if I needed to have someone with me to drive me home and the oncologist said
no, that I would be okay. I asked if I could begin the treatment late in the afternoon, so I can keep some semblence of
normalcy to my routine, and they were very accommodating. Their busiest time is in the morning, so this will work out well all
around. I'll be able to continue to do my job, leave late in the day, have my treatments and go home and if necessary, have a
nap and get some rest.
I'm very optimistic about all of this...when she showed me, on a ruler, how small the cancer was, I said a silent "Thank you,
God!"
Charlie has been by my side through all of this, and will walk with me, as has been my dearest and closest friend Connie. He's
been very supportive and open to discussing the options, the prognosis and just letting me talk and cry my way through this. I'd
be lost without him. Connie has helped through some pretty lonesome times in this.
And all of you, my friends, have been so wonderfully supportive and caring. Being able to come here and say those dreaded
words and seeing your responses have helped me "look mine enemy in the face and know that I will vanquish him". If you don't
mind, I'd like to keep you all posted on how things are going. If posting here about *my* experience with this helps one person
pick up the phone and schedule a mammogram, or persuades one person to see a doctor about something that's been
bothering them, then it was worth it. I'm normally a very private person; almost a "loner". It took a lot for me to type those
words and place them in an area that was so very public. I hope it has helped.
October 30, 1998...
So, yesterday I was ready to go for my simulation, ask additional questions that came to mind and set up my appointment for
radiation. I was up early, stopped and got myself some breakfast, parked the car and started eating my bagel & cream cheese,
and doing crossword puzzles. Checked the watch and took another mouthful of coffee. Rats! I dribbled coffee down the right
front of my white shirt. Heavy sigh.....get out of the car, walk into the Cancer Center, sign in and ask if there was a ladies room
close by. Go to the ladies rooma and try to sponge the coffee stain out of my shirt. Now I have a big wet spot with water
dribbles down my right front. I hold my folder with my information up and walk out of the ladies room. I sit down, open the
folder to read the information I should have read two days ago, take a sip of coffee and look down....awwwwww maaaannnn!
A coffee dribble on my *left* front. Sit coffee cup down, walk over to sink in waiting room and try to sponge coffee stain
out....well gee, now I have matching wet spots! I sit down, and open the folder again to read what I'm not supposed to do
without checking with the therapist or doctor first and my name is called. I say "Here I am" and she walks over to me, glancing
quickly at my soggy chest, apologizes and tells me the machine is broken. They had tried to reach me before I got there, but
being mildly anal-retentive, *I* left early. She asked me to call later in the day and she'd set up another appointment and asked
if I could come back yesterday afternoon and I told her no, I had too many meetings scheduled. I stopped home to change
shirts because I wasn't going to sit in meetings with people staring curiously at my chest and the stains. I ended up grabbing the
first shirt I came across...so now, I'm dressed in dark blue slacks with a bright teal top. Ahem......
I called at 11 or so and the machine still hadn't been repaired, so we set up the appointment for this morning at 9:30. Last night,
as Charlie and I went to feed the strays, I discovered my lunch still sitting in the front seat of my car...no wonder I was
hungry!!!!
Okay....I'm up early this morning because I'm nervous and a little scared. I find myself starting to tear up in the shower because
I'm thinking "This is it, this is where it all starts...first the simulation, and then the therapy"
I stop for breakfast and take my time because I'm pretty early...I also am wearing black.....just in case my "drinking problem"
recurs. Well, unknown to the technician and I, the radiology oncologist has a new patient scheduled at the exact time I'm
supposed to start my simulation. The technician apologizes profusely for the delays. The equipment is kind of big and a little
intimidating. They place you on a table, with your upper torso raised, and in my case, my left arm over my shoulder gripping a
handle. They use semi-permanent markers to basically draw a map of where to position the equipment for the therapy. They
use lasers to make sure you're straight on the table, properly lined up and the markings and measurements are accurate. It's a
tedious process and can stiffen the arm a little. I feel sorry for those people who are older and perhaps not as limber as I am.
It's got to be very uncomfortable for them. The room is kept chilly because of the equipment. They position the x-ray machine
at different angles, take measurements, move the machine some more, take some more measurements, mark the breast with an
orange marker, move, mark, and so on until they have all the figures they need. In the meantime, you're not allowed to move at
all, because it will throw the measurements off. The next to last thing they do, is place some kind of strip of material soaked in
plaster of paris, across the chest area. This conforms to my body shape, hardens and will be used along with a computer and
the measurements, to calculate dosage and strength of the radiation. Then the technician darkens the road map (I have a circle
with an x in it....no, I didn't ask....I was afraid of the answer....like maybe it was ground zero or something!), and places two
permanent tattoos on either side of my left breast....helps me up, calls to set up my appointment for Monday, and I get dressed.
The simulation is done, the real stuff starts Monday.
Before I got dressed, I looked down at myself and just stood there for a moment...I could feel the tears starting....I didn't figure
the markings would be this extensive, or bright. I find they bother me....the fact that they're there, and what they stand for. I
have to be careful when I bathe to not scrub that portion of my body and if they begin to fade, I have to let the technician know
so she can darken them again.
I informed my two bosses when I got into the office earlier of what was going on, what the prognosis was, what the treatment
entailed and request that they keep it private. It's my choice to let people know, not theirs. They agreed with my decision and
will work with me however I need them to. I've only told 3 close friends here what's going on.
November 5, 1998...
I spent Sunday shopping for 100% cotton bras. I was reading the papers on Friday that I had to sign and hand over, and they
stated that I couldn't wear a bra. *That* really upset me, because I'm generously endowed, work in a job that has high visibility
and interaction with the college president, several deans and various other "important personages". Walking into their office with
my boobs banging my knees was *not* an option! So the simulation technician told me I could wear all cotton, and to make
sure they were a little loose. Oh sure, I can legitimately sag then! Charlie kept telling me it was only temporary, in six weeks I
could go back to wearing the underwear I was used to. Well, finding 100% cotton bras was an adventure in and of
itself....finding my size was like the ultimate scavenger hunt. When I finally found several, I felt like I wanted to shout...I got
'em...their mine....I got 'em!. Jeez.
On Monday, the day of my first treatment, I watched the clock stop at 2:30 and not move for what seemed hours and hours. I
was leaving at 3:00 to get to the Cancer Center in plenty of time. I *hate* being late...for anything. I find a parking place and
walk to the Center. It's a busy place, lots of bustle. I walk up to the desk and sign in, then go sit in the waiting room. Jerry
Springer is on....we won't go into what the discussion was, suffice it to say there's was lots of punching, name calling and face
smacking. At 3:30 my name is called and I followed the technician back through a hallway, around a corner and then am asked
to sit for a moment because someone is using the room. They have two therapy rooms, with huge doors on rollers. More than
likely lead lined to keep any radiation leakage down. An older gentlemen walks out of the room with help from an assistant. I
go in, undress from the waist up, put my very inadequate hospital gown on and climb onto the table. They ask me to scooch up
as far as I can get, bend my knees and lie back. A wedge shaped pillow is placed under my knees to hold me in position. The
first session is a little longer than usual because they have to check the measurements and calibrations for the machine. In my
case, they also have to redo all the markings. Cleaning house and bathing has washed almost all of the orange off. They use
bright royal blue. I can feel myself getting upset at how much of me is marked up, and with bright royal blue at that. They use
lasers to guide the positioning of my body. They move me around and turn my hips to the correct angle. The room is dark when
they do this, so they can see the laser beams. When they start the treatment, the lights are on. They leave the room, take an
x-ray and then move me around again, check the numbers and take another x-ray from a different angle. When they leave the
room, I hear a strange noise. They walk in, move me just a smidge in one direction (all the while, I'm holding onto a grip with
my left hand, above my head), tell me to be very still, that this will be the first part of my treatment. They walk out of the room,
I hear the strange noise again and realize that it's the door to the room being shut. It's on big wheels, and they have to roll it
closed. The machine comes on and makes a medium pitched whining sound. It stops, the aperature opens a little wider, the
machine starts again. The technicians come back into the room, read the numbers, and move the machine to another angle. The
first treatment has the machine on my right side, angled down, the second treatment has the machine below my left side, angled
up. The actual treatment takes approximately 10 minutes. I realize I've had a death grip on the handle above my shoulder and
my fingers are cramped. I'm allowed to breathe normally, but not move at all. I try to flex my fingers without moving anything
else. The techs come back into the room, darken my marks again, help me off the table and ask me to get dressed. They walk
me to the door leading into the waiting room and say they'll see me tomorrow.
I get home and change clothes, and look down at me. I'm bright royal blue, I'm tired and a little nauseous. I fix myself a cup of
tea and start to cry. I don't know why, but I can't help it. Bless her little heart, one of the black kittens, Tess, hops onto my lap
and starts rubbing her head against my chin. Well, I start crying harder now. I lost my Mom two years ago, but right there and
then, I wanted my mother badly. I wanted to be able to pick up the phone and talk to her, to have that voice that always told
me it was going to be okay, tell me that now. I'm 55 years old and I wanted my mother.
When Charlie came home, he asked how I felt, and since I'd calmed down considerably, I told him a little tired, but okay. I'd
gotten through the first day and could face another one. He did everything he could to make me comfortable, and we watched
*Cats*.
Tuesday
The day goes a lot faster, because I'm busy. At 3:00 I head for the Cancer Center, sign in and wait to be called. There's a man
in the waiting room and he seems to be agitated. His wife's on the phone, and he's pacing back and forth. (No Jerry Springer
today - rats!) I overhear him say to the receptionist that he doesn't understand why he's here in the Cancer Center...where's his
doctor? What's going on? I feel sorry for him. I can empathize with his feelings. You feel like you're dreaming and any moment
you'll wake up...you hope. The man is getting more agitated by the minute and his wife is now trying to calm him down. They
call my name and I follow the tech. This time, during treatment, they put a measuring device on the treatment area to check the
dosage of radiation. They tell me what it is, and I ask what it does, and they explain that it measures the dosage. The technician
also tells me that I'll be seeing the oncologist on Mondays after my treatment, and on Fridays they give me a request to have
blood drawn, to check the platelet count. The treatment goes quickly and well. It takes me longer to get undressed and
redressed than it takes for the treatment to happen. Conversation between the technicians kind of flows around me, like a
stream of water flowing around a rock in it's path. They're very nice young women, willing to answer any questions I ask,
cheerful and pleasant. As I'm getting dressed, I notice what looks like helmets sitting in these niches on a huge bookcase, with
lead ingots beneath them. I've got to ask what they're used for...each one has a name and a number on it. It's obviously for
some kind of treatment, but what? I go home and wrap myself in a quilt with my pillow and watch a little television. Once again,
Tess is in my lap, and is joined by two other cats. I guess I look like a big pillow, and it's unusual, because I'm *never* home
this early.
Wednesday
This is the day I have to be there in the morning. It's 5:30 and I'm up and getting showered and dressed. On Wednesdays,
radiation therapy is given from 7:30 a.m. to 12:30 p.m. on a first-come, first serve basis. I pull into the parking lot and get out. I
walk up to the doors of the Center and see it's dark inside, but the doors, which are automatic, open to let me in. I find one sign
in sheet, put my name and the time I got there (6:50 a.m.!!!), find a spot that has some light, and try to read a magazine. No
one else is there, including staff. Great.....talk about being the early bird!! About 7:10, an elderly gentleman walks in and starts
flipping lights on, spots me and says Good morning, how you doing this morning, ain't it cold outside, and did the weatherman
call for sleet? I answer his questions, and he walks behind the reception desk and starts rummaging for something....ah...sign in
sheets. He can't find any. He decides to make a pot of coffee, but can't find the filters. In the meantime, another patient comes
in and looks for sign in sheets. They decide they're going to start a pad since they can't find the sheets...I get anxious, because
I'm afraid the technicians won't see where I've signed in and I'll lose my turn. The old guy finally finds a batch and they sign in.
He starts rummaging for coffee filters again, mumbling about talking to those "girls" about the coffee supplies...he needs his
coffee in the morning and they know that. The third patient comes in with her husband and tells the old guy to fix her husband a
cup of coffee because she didn't have time to...again the explanation about no coffee filters, no coffee and they all go back and
forth about that, her husband claiming he can't drink anything cold in the morning because it upsets his stomach. In the
meantime, in walks the receptionist. The old guy asks for coffee filters, she unlocks a file cabinet and hands him some limp
white things. He makes the pot of coffee. A technician comes out and asks who was first, they start pointing at each other and I
speak up and say I was. She checks and says "Yes, but you're on the other machine". Oh, okay...I didn't know *that*, I was
under the impression it was first come,first serve, period. I'm grumpy too...I haven't had *my* first cup of coffee either!
Between the technician and the three other patients a "you go first, no you go first, well how about I go first because I've got a
lawyer's appointment on the other side of town, and they all agree" My name is called, I walk down the hall, go into the
treatment room and get undressed. Five to ten minutes later, I'm up and getting dressed. I ask what the helmets are for. The
tech explains that when they have to do radiation on someone's head, face or neck, the helmets keep their heads in place, so
they don't have to mark the skin anymore. She says it's kind of scary the first time, because the material is plastic and it melts to
conform to the shape of that particular patient's head. I walk out and drive back to my office. I managed to last until 1:00 and
then gave it up and went home. I was too tired.
Continued.....
Page 2 - Week 2:Fatigue, "demons of doubt", I've lost my sense of humor, I stand in the middle of the kitchen and scream...Charlie's thoughts: Why Her? steel magnolia, how can I help her?, frustrations, a scare...
Page 3 - Weeks 3-5:understanding the process helps to alleviate some of my anxiety, getting to know the Cancer Center regulars, weathering no estrogen replacement...getting in to a routine, skin irritation and tenderness, a laugh about red & green markers for the holidays and being a Christmas ornament, coming to terms, staff and patients as extended family, I find a guardian...family stress, more fatigue, worsening skin irritation, the "simulator", the bra dilemma reminds me of a cartoon...a reaction to the radiation therapy, treating the infection...
Page 4 - Week 6: December 21, The Final Treatment: the infection is clearing, about courage, knowledge is power, Charlie by my side, friends, a *very* special Christmas for me...a second chance at life....
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