The Journal Project:
Light Against Breast Dancer
scripted by Lisa McKhann
from journal excerpts of
nine women cancer survivors
writing online as a group
summer, 2011
© Project Lulu, 2011. All rights reserved.
Journal entries gathered here were written online using Projet Lulu’s
JOMMA: Journal of My Medical Associations.
More at: www.projectlulu.com
For information about this script, recordings from the reading, or
JOMMA, contact: Project Lulu, 218-349-9121
email: [email protected]
Light Against Breast Dancer
The Journal Project:
Light Against Breast Dancer
Project Lulu
2011
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The Journal Project
Acknowledgements
These writings are excerpts from personal journal entries, written during six weeks in the summer of 2011. The writings were made anonymously in an online group called JOMMA: Journal of My Medical Associations. Here, nine women breast cancer survivors journaled andshared
with each other. Some wrote more than others. All wrote withgrace and
power.
I am immeasurably grateful to these women. The JOMMA Pioneers
opened their thoughts and feelings to the blank screen and the unknown sisters just beyond it. Their writing time was often exhilerating,
even breath-taking to me as a reader, a true gift.
The pioneers also gave me permission to share select excerpts with
a slightly larger audience. On October 23, 2011, a reading from this
script, The Journal Project: Light Against Breast Dancer, was held in
Duluth in the August Fitger Room. Area actors joined with original writers to read, breathing to life these words. My gratitude to the original
readers: Alane Davis, Kathy Dodge, Jan Karon, Ellie Martin, Anne Pilli,
Cathy Podeszwa, Julie Vehuizen (some read for two writers).
Here’s to the power of language and self-expression.
Lisa McKhann
October 21, 2011
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Sunshine
I love the sun and how it makes me feel.
Freedomgrl
I’m sure the people around me felt relieved that they didn’t have to
worry about me any more. Things could go back to normal. I hoped
they would. So, life is going on, but am I really moving forward?
Fibber
We ate a rice and mung bean mixture three times a day, melted ghee in
the mornings, showers and tub soaks daily. I never have spent so much
time on myself. This is something I am finally learning to do. I don’t
know if it is my age or the cancer thing.
KMarie
Twelve years ago this morning, a nurse gave me the news that my
nodes were negative. . . . Lots of details have faded in the 12 years,
but I remember her.
Superpea
Who am I now? Who was I supposed to be? Would I even recognize myself anymore?
Maggie
Crap . . .I just had a phone call and now my concentration is whacked.
OK. I just sat down and the phone rang again . . .
Farrah
By the Way, I NEVER spell canser correctly. It doesn’t deserve to be
spelled correctly.
Hatdis
After cancer, I want to crack my lenses and question all the old assumptions and truths.
Wink
My friend lost her aunt last night to breast cancer. She told me her
story about the struggle. . . I actually felt pain where my breast used
to be. I cried. I cried more for me than for my friend or her aunt.
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Journaling
Superpea
So, journal writing is something I have tried off and on for EVER! I have
wanted to put my thoughts and experiences into words, but . . .
I have, on my computer desktop, a file that was meant to be a repository for my writings. I was sticking a stake in the ground and saying,
“Here is where it will all be put down. Here is where I will write.”
Sadly, a few measly paragraphs are all that have lived in that desktop
folder for a year. Now, it is a constant reminder of the slipping away
of time, the slipping away of thoughts, the unwritten memories, the
words left unsaid.
I think I’m scared.
Maggie
My life is busy, my mind is cluttered. I feel like I am trying to shove a
whole pile of stuff through a little funnel and it won’t run through fast
enough.
Sunshine
I’ve never been really great at just letting the words flow. I’ve always
kind of felt like I needed to make sure that I filter what I say or write.
The thoughts are in my head, but sometimes getting them out is not
that easy. I always feel pressured to have everything correct. I guess
that’s why cancer was kind of an awakening for me. It just didn’t feel
right or correct.
Freedomgrl
With everything I let out, a little twinkle returns to my eyes. Woohoo! I
get excited about things again!!
Fibber
From my diary 13 years ago: I’m writing. I haven’t been and I don’t
know if I will continue to do so, but it’s recommended. Hopefully, I will
feel better and writing will make my cancer go away. I’m positive it has
left and so is everyone else. I’m about ready to shed the baseball cap. I
haven’t written about my cancer because I don’t want to read about it
later on. . . . When I write, cancer comes out.
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Sunshine
I regret not keeping a journal as I went through my chemotherapy and
radiation, but I can now see that I was in “survival” mode at that time.
Wink
I feel better. I feel my muscles relaxing, my mind slowing down. I
shouldn’t have waited to journal. Make time for the right time.
The Sisterhood
Fibber
31st of May. Once a month for most months, four of us dine at Timberlake Lodge. We all are in the same “graduating class” from the support
group I joined when I was diagnosed with breast cancer. Most times,
we don’t talk about the big C, but last Wednesday one of the women
shared her latest bout with cancer. She had a pain in her neck. It got so
distracting, she saw her doctor. Well, one thing led to another, and no
one thinks it looks good. This is something we all did not want to hear.
Selfishly, we have been living it good for about 13 years, and now we
are faced with her potential diagnosis. The group pain is palpable and
we are waiting and hoping.
KMarie
June Four. Today has hopeful anxiety. My friend and breast cancer
sister finally had an appointment for tests and a biopsy. She has a
fracture at T2 and a suspicious MRI. She’s been going through an awful
dance of confusion in getting the appointment, and has been waiting
about 10 days--which is a lifetime. So, hopeful that the test is scheduled, but anxious about the results. Apparently T2 is a most challenging place for a biopsy. She’s a great friend.
Fibber
We have not heard from our friend since last Wednesday. We know she
is occupied with all you have to do to advocate for the best treatment
possible. You have to be your best to find who is the best to help you.
I also know that the general public tends to bring out the black crepe
when one receives a diagnosis. I have sat with many women who were
absolutely at wits end. I could say to them, “This is a chronic condition
that gets bad press.” I hope I am right.
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KMarie
June Eight. Monday I subbed at the Women’s Cancer Support
Group. Haven’t been there for a long time, but saw some familiar faces. I was subbing for a friend who’s off having tests. So, first I share
that news. Some women are long-term survivors, some new, some inbetween; some feeling good, some trying to be positive although cure
is not in their future. Things have changed; things are the same. We all want reassurance
that the treatment choices we made were the right ones. “What did
you do for...?” A new round of hot flashes--probably drugs. Nerve pain-maybe drugs, maybe cancer. Really tired--treatment effects or old
age? Acceptance and mutual support is a good thing, as is some of the
humor. One thing that seemed different was that there were a few women who
were stronger advocates: (chorus)“Fire your oncologist if you don’t like
him.” And that’s a good thing. What was best of all was seeing the connection between the women; most don’t see one another away from
the group, but for that one-and-a-half hours, they are close, a true
sisterhood.
Fibber 11th of June. Our little four-member support group is waiting word
about one of our member’s visit to Mayo yesterday. Fallen soldiers.
KMarie
June Fourteen. My friend is off to meet with oncologists to see what
treatment her future holds. After 17-and-a-half years, her breast
cancer came back in her spine. So much for the radiologists telling me
that 12 years looked good, trying to reassure me that it wasn’t likely
to come back. I try to keep the fears pushed away and mostly they are
floating out there, vague whispers when I have an ache or pain, but
never completely gone. I try to be moderately healthy, but I was that
before I got sick . . . .
June Seventeen. Went to a dinner for cancer survivors and friends and
family--59 survivors with 617 years. That is encouraging. One woman
is 47 years out. Life After Cancer is filled with ups and downs. I have a
pain –“Oh woe!” I feel great—“No worries!” (almost). Then I talk to a
friend with lots of health issues, but no cancer, and am very grateful
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for all the worries I do not have. I am happy for low blood pressure,
normal cholesterol. I meet women for breakfast and we enjoy eggs and
hash browns.
Fibber
7th of July! Thank you. After tender and loving care that involved radiation and cement in her bone, things are looking good. This disease can
be fixable and days that looked dim now look downright celebratory! Be
vigilant. This gives me hope and I am so happy for my friend. Cancer is
a chronic disease. Thank You.
Sunshine
As I sit and read what others have written about their cancer experiences, I can’t help thinking that “I felt that” and “That’s how it was
for me.” I realize that everyone’s experiences are different, but I
feel this definite connection with others that share the diagnosis of
breast cancer. Picking out the wig. Putting on the positive face and
dragging myself out of bed when that was the last thing that I wanted
to do. Dealing with the heartburn and constipation from chemo, the
tears, and the extreme fatigue. I was forever doing my mental countdown after each chemo and radiation treatment: “I am 1/4 of the way
through, I am 1/3 of the way through,” and then “1/2 way through.” I share the feelings of anxiety when there is a new pain somewhere in
my body, the What Ifs.
Wink
Recognize and celebrate our sameness. When we share ourselves, we
are bonded. Bonding combines our strength.
Birthdays & Anniversaries
Farrah
Today I turn 48 and I never thought I’d be looking forward to getting
older... Cancer changes all that-doesn’t it? I now have 2 “birthdays”.
Although the day of my diagnosis isn’t as happy—It is a life-changing
day. I am grateful for every day I get to wake up on the ‘right side
of the dirt’ and can take in a long, beautiful breath of fresh air. So
“Cheers” to all my Survivor peeps! ;-)
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KMarie
Our group celebrates milestones as no one else can.
Sunshine
Happy birthday to me! (singing) I used to try to not make a very big
deal about my birthday....that is until my 50th birthday two years ago. I was a couple of months into my chemotherapy treatments. I had
made it through my 4 rounds of Adriamycin and Cytoxin and was ready
to start 12 weekly rounds of Taxil. As I went to have my lab drawn
through my port catheter, I was greeted by the same smiley face that
had already “connected” me for my lab draw on several occasions.
When she wished me a Happy birthday, I informed her that it wasn’t
exactly how I planned to spend my 50th birthday and that it really
wasn’t a big deal. She kindly informed me that every birthday was a
“gift” no matter what. And she was definitely right about that. I now
embrace my birthday and pretty much say “bring it on.” Here’s to sharing experiences with others as I celebrate turning 52!
Wink
May 30th. It’s my year of first anniversaries. A year ago today, I was a
scared little girl. I was afraid of my “nothing monster”, fear of the
unknown. My first chemo appointment was scheduled and approaching
fast. My goal of living in the moment is hard. As each anniversary date
approaches, my mind cannot stop from comparing today to a year ago
today. I think it’s good to visit the past, and embrace that moment. June 11th. Vacationed in Minneapolis this past weekend. I’m a Huge
Minnesota Twins fan. I didn’t get to see the new Target field last year,
because I was doing chemotherapy, and I wanted to go when I could
have a dog and beer. So, last weekend, we sat in the rain and watched
the game, and I have to say, That was the BEST dog and beer, hands
down! There is always a part of my day when I feel the joy of the small
stuff. Hot dog!
Superpea
There are certain times in life that are ripe with memories. Most of
these are obvious times: birthdays, any sort of celebration really, but
sometimes I am surprised by the moments that are unexpectedly hard.
It’s tough to find myself in the middle of a happy moment, while others
revel around me, only to feel like my guts have been torn out.
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Wink
I think it’s good to visit the past, and embrace that moment. Sons, Lovers & Fathers’ Day
Superpea
The times that really get me aren’t special times at all. Often it is your
grimace upon waking, the way the sunlight lands on the side of your
cheek, or overhearing you laughing in that wonderful way of yours with
someone else, someone who is not me.
Fibber
Sustained Effort. When I was dealing with chemo and the chunk taken
out of my breast that made it look all black and blue, I stopped thinking of myself as attractive. I am beginning to feel good about myself,
body-image wise, after 13 years. My husband did everything possible to
tell me I was beautiful. He never convinced me, but it was a sustained
effort on his part.
Superpea
My son wrote a poem for me. Wow. Sometimes my kids amaze me. They
often prove that they really do “get it”, when I’m not sure they’re paying attention at all. This proves to me that, even though it’s been years
since my diagnosis, the pain can still cut like a knife. The emotions, the
fears, they can still be as raw as ever. I really knew this was true when
I watched my husband read this and saw the sadness hit him like a slap
in the face. Words are so powerful.
“Mother, you never surrendered. You never surrendered to omnipotent
dark. You kept strong in your fight and always looked forward. You had
the need to stay and finish your journey through life on your own terms
and still feel the sun’s rays. You were still too damn young. You had to
stay by our sides and see all of us through ‘til final words are sung. You
shall forever be what inspires me most. Mother, thank you so much for
refusing to leave.”
Maggie
June 17th. So much is going on in my mind. I know that it is all pretty
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minor, but even little things add up. I am trying to get my house ready
for relatives visiting this weekend. My son just graduated from high
school and we are going to have a barbecue. I guess I am happy that I
feel so caught up on things that I can find the time to sit and write this. So, part of my frustration is just getting ready for this weekend. I feel
like I have done so much around the house (cleaning, shopping) and no
one seems to notice! I try to get input from everyone and they just
stare at me. Then, if I make a decision on something, I feel like I get
the third degree. Last night, as I was trying to get dinner on the table, my son says,
“HURRY UP!” EXCUSE ME! What the fuck!?
It also seems like my family isn’t sensitive to my feelings regarding
my son’s graduation. I had to explain to him that his graduation was
important, not only because he is graduating and I am a proud mom,
but also because there were two times when I thought I would never
see this day!
Superpea
It’s a big day today. My youngest is graduating high school. It’s impossible to harness the swell of emotion that comes. So. Let the tears
come. Let them wash out of me like a cleansing rain. Let the choking,
breath-taking moments of feelings as strong as steel grip me. Let them
rock me like a child. Let me dwell in past times, good and bad. Let me
feel the presence of the unknown, and be glad. Let me swell my chest
with pride. Let the pain and fear and anger sit alongside the joy and
celebration. Let them grow together like two vines among stones. Let
them blossom with thorns and fragrance. Let me celebrate life; complicated, frightening, raging, quiet, colorful life. Let me be taken to my
knees with the sweet and bitter of it.
Sunshine
This is good. As I celebrated Father’s Day with my husband and children, I reflected on the life of my father. This would be my second
Father’s Day without him. My father was a quiet man, one who never
looked to be in the limelight. He was a World War II veteran who
“stormed” Omaha Beach on D-Day, yet never talked much about that
until his later years. He worked hard all of his life to support and raise
his family. He lived in the same town his entire life and actually lived in
the same home with my mother for 60 years!
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My Dad spent the last 2 years of his life in a nursing home, he had Alzheimer’s disease.
Dad never complained even during his last
years. When asked how he was doing, he would start at his head, saying
“This is good”, point to his shoulders and say, “This is good” and would
continue with his arms, hands, legs, and down to his feet, telling us,
“This is good.”
It was difficult to go through my cancer treatment and not be able to
share with my Dad what was happening. It was hard for my mom, too,
as she worried about me but was unable to share her fears with her life
partner, the one who had always comforted her. Ironically, as I was going through chemo, on one of Mom’s visits, Dad
said he wondered how I was doing and called me by my name! So in a
way, I believe he knew. I know now that Dad is looking out for me and
always will be. And I know that in the words of my Dad, “This is good!”
A Trio of Bra Burners
Fibber
I went for an ayurvedic consult and learned that an underwire bra can
prohibit the chi from appropriately circulating in your body.
KMarie
I have to find a new bra. The style I have been wearing no longer exists. First I thought the store was out of my size, then, that the store
quit carrying that style, finally a visit to the company website revealed
the news--it no longer existed. Oh woe! The dreadful search for a new
bra. This never was easy since I have quirks--I’m sensitive to labels, lace,
etcetra, so the bra has to be soft and smooth; I can’t stand underwires,
but based on my size, the companies have decided that I should wear
an underwire. “These are really padded and comfortable. You won’t
even notice the wire and it will give you great support.” I’ve heard
comparable advice more times than I care to remember, but now I no
longer believe it.
Sunshine
Imagine my surprise when I had finished chemo and went in with rib
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pain, convinced that my cancer had spread. And then, my relief, when I
found out that I should try a bra without underwire.
Fibber
I went bra shopping. Yikes. Who are we kidding? I decided to treat myself and hit up the intimate apparel section of the downtown Macy’s.
Wouldn’t you think you could find an organic cotton bra or at least a
cotton bra with no underwire? Tough to come by. The place hung with
hundreds of bras, all shapes, sizes and colors, beginning price at about
32 dollars. I found one cotton bra that was really ugly and expensive.
KMarie
They may have possibilities in the store, but I have learned that at
home, they will hurt, itch, or cause some other difficulty. One drove
me crazy by 10 AM on the first day I wore it! I tried to figure out how
I could leave work to go home and change. Not wearing one is not an
option, at least not in a work setting. So when I find a bra style that
I like, I stock up. I had a really comfy style when I was going through
treatment. Unfortunately the goo that I smeared on my breast to
prevent radiation burns messed up the bra fabric. When I was finished,
I decided I needed a few new bras. Alas, not my familiar favorite. This
time, not only was the style not available, the company was in receivership or some such thing. Isn’t that a bit extreme just to keep me
from a favorite bra?!
Sunshine
I am now of the belief that there will never be a bra that fits me comfortably. By the end of most days, I literally want to take scissors and
cut off my bra.
Fibber
I found more choices for 1/2 the price. I used to hate the bras that
were padded and shaped, but now I have no choice. One breast is
about an inch shorter than the other, with a big, gigantic dimple in its
center. These bras help.
KMarie
Then I found a great bra, cheaper than the former bras, really comfortable, and didn’t even require a trip out of town. So, I stocked up and
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was happy for at least a year. Then that bra went away, replaced by a
style that was supposed to be “new and improved,” but they didn’t ask
me about that. I bonded with the new style and the memories of the
previous two favorites faded away.
Sunshine
I recently went to the mastectomy store and tried on about 25 different styles of “soft” bras and came home with 3 different styles. Unfortunately, trying them on in the store is not quite like wearing them for
a 8-hour-plus work day.
Fibber
Like most women, I never liked my breasts. Often I wonder if my insecurity about them gave me cancer. I didn’t love them enough. I was
about the third girl in my 6th grade class to start wearing a bra. Not
only was I the tallest, I was also voluptuous, and I did my best to hide
it. Boys on the playground had been known to pull on the back of a bra
and run. That might go over these days, but I was mortified back then.
Maybe if we loved our bodies more, we could avoid these diseases. Just
a thought.
KMarie
I also look for a bra that helps my breasts look symmetrical. As
I’ve gotten older the loss of tissue to the lumpectomy is more pronounced. For a long time there was some residual swelling and scar
tissue; that seems to be gone. The surgery left the breast a bit perkier
but a bit smaller. I wonder if other people notice? I put on a t-shirt or
sweater and wonder if I look odd. I’m very grateful to be healthy, even
if I am a bit lop-sided, but sometimes the view is funny.
Sunshine
So, two out of the three feel OK. The other, I am not so sure about. The saga continues. . . I am off to take off this bra!
Low Tide Days
Freedomgrl
How do I tell? I’m so tired. Why am I so tired? All of the time. Is my
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body just needing time to heal? It’s been a year. If I’m thinking that,
surely everyone around me is expecting more out of me. What if I’m
depressed and I don’t know it? Something’s got to change. How do I
tell?
Superpea
Today I will retreat Into myself Until I am a small seed. I will curl a
shell around me Tight against the world. I will ask to be carried gently
In the cup of a careful hand. I will stay warm against the cold Blind
to the sun And dry against the rainstorm That is sure to come. I will
be brown And hard With only a small green heart in my center Hidden
behind thick nut And tough husk And bitter shell. Today I will retreat.
Hatdis
In my family, if you tolerated pain or disappointment without complaint, you were praised. Fibber
I need to share the story of how I got to Zoloft, my antidepressant. I
knew about the dreaded end-of-treatment angst. I wouldn’t see my
wonderful oncologist for 3 whole months. Intellectually I got it, but
emotionally, it snuck up on my me by way of obsession. I was convinced
I had a growth in my neck, although I didn’t want to admit it. I felt silly
talking about it.
When my husband and I were about to take off for our cabin, it all hit.
He was in the shower, a perfect time for me to start bawling into the
folds of my pink, terrycloth robe. Problem was, I couldn’t stop crying,
and he knew. I could not go on with this obsession and try to enjoy a
vacation. I was embarrassed to admit my weakness of giving in to the
disease. The doctor was so kind. I got xrayed and poked and prodded.
No lump in my neck. She kindly suggested that an antidepressant would
relieve my anxiety.
I happily took Zoloft for one year and weaned my way off of it. Last
year, I was 13 years out from the initial diagnosis and asked to take
Zoloft again when I completely compressed over an ovarian cyst that
needed to be biopsied. All docs I deal with “get it.” I am so lucky to
have their support and understanding.
KMarie
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I saw myself wasting away, being miserable, looking awful, having my
friends sick of me because I complained. I had a horrid picture. . . I
would not be one of those brave, cheerful people that everyone loved.
I would not be the Movie of the Week.
Farrah
Tired of being sick and tired... Bronchitis-again, last time was early
November of 2010. Can’t help but think of “it” whenever I get sick
like this and wondering, “is it just bronchitis”?! Fear of reoccurrence,
always ‘back there’, but glad not too close to the surface. Being sick
has a whole new meaning since my diagnosis, more ‘fear’ than before,
and I’ve always been a bronchitis girl since I got it back in the late 80’s. Ahh, deep breaths, Relax “cough cough” it’s ‘just bronchitis, girl’!
(note: read cough cough aloud, no sound effect)
Sunshine
“Anxiety” - I really didn’t know how that felt until I was diagnosed
with breast cancer. It seemed at first to be always present. Always
the worst in the early morning, or whatever time I woke up during the
night. The first thought to pop into my head was the fact that I had
cancer. My heart would race, my mind felt cluttered, and I felt overwhelming fatigue. Just trying to figure out how I was going to keep my
life “normal” was so overwhelming that I would feel the panic rising
in me. At this point, as much as I wanted to think I was in control, I
really wasn’t. So much for organization, scheduling- that was all on the
back burner for now and my life was a series of doctor’s appointments,
labwork, chemotherapy and then radiation treatments. I had to learn
to be OK with the fact, that all my usual tasks were not my priority at
this time.
Freedomgrl
I guess it is time that I start getting some of this off my chest. As I
write this, I’m on hold, waiting to change my address to my new home
here in Minnesota. I thought I was on the right track to becoming financially independent again, but didn’t realize that my recovery would get
worse before it got better. It really pisses me off that I am so tired all
the time. I got to the point where I was so exhausted that I called Kim,
crying, and asked if I could move in with her. She had wanted me to
move back and live with her ever since my diagnosis. Now, here in Duluth, I feel like I can really concentrate on healing and putting my life
back together. I’ve been through so much. It’s almost like a really bad
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dream that I want to wake up from and have a real life back. I liken it
to having my life in my hands and having God just whack it out of my
hands with one fell swoop. Job, health, memory, strength, independence – GONE.
KMarie
This dreaded disease that can cause such havoc in lives, in communities. Not fair! Not fair, too, that so many people worry about medical
care for their cancer and after-care. Cancer is enough to worry about.
You shouldn’t have to worry that you won’t be able to pay for the drugs
that may keep it at bay. Not fair!
Wink
My friend lost her aunt last night to breast cancer. She told me her
story about the struggle she had deciding if she should go to her aunt’s
bedside, what a loving and kind experience it was, looking at her aunt’s
breast . . . . That’s when I left being in the moment. My brain started
to think about me, about how blessed I was that my family didn’t
have to struggle with feelings about my death, yet. I actually felt
pain where my breast use to be. I cried. I cried more for me than my
friend or her aunt. Fibber
When I had radiation and took those daily trips to Hibbing, I lost weight
for some reason. Chemo didn’t do it, but radiation did. Ever since,
when I shed a few pounds, the fear comes back: “Why am I losing
weight?” and I back away. . .
On the way to Hibbing, we passed the cemetery on the edge of town. I
would look out the car window and wonder how long it would be before
I was there. Sooner than my loved ones? That still happens when I see a
cemetery. When I told my husband this, years later, he was moved and
sad.
Superpea
Who am I now? Who was I supposed to be? Would I even recognize
myself anymore? Instead I am stuck. Stuck, frustrated in this new mind,
this new psyche...trying to get comfortable. Like trying to fit into an
old pair of pants I’ve outgrown. Trying to understand my place in the
world, the place I am not sure I am supposed to be in. I honestly didn’t
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prepare to be in it. I claimed it, a distant hope, but what do I do now
that I’m still here? Angry, out of place, irritable. Lost, lonely, confused.
Grateful, yes, but sometimes not as much as I should be. And then
the guilt comes like a punch to the stomach, a slap to the back of the
head, a hard shake to the shoulders. Wake up! Look around!
Be
grateful and quit complaining! And the worst, “How dare you?” All of
these in my own voice, my own finger pointing at me, a disapproving
look, frowning, and ashamed. No wonder I can’t sleep.
Freedomgrl
I realized that I had emotionally flatlined. Nothing really upset me.
Nothing really excited me. I didn’t look forward to anything. I didn’t
really dread doing anything either.
Fibber
I drank a lot of wine last night as we entertained, tiny bits at a time. I
know I am not supposed to do that, but it’s fun for me. I do everything
else: Eat right, exercise, green tea, yoga, but on certain occasions . . .
. Damn, I wish I didn’t have to think about every thing I do as relative
to my survival. Can I have down time and survive? This nagging “LiveRight-and-You-Will-Live” creeps into my thoughts.
Farrah
Loss is so many things... Today I remember and grieve the loss of the
my Dad ,15 years ago today. He died on my front porch from a heart attack and I had to do CPR on him. That was hard. I thought of that event
the day I got diagnosed, and one of my thoughts at the time was: “I
made it through that... I can do this”.
And now I struggle with the lymphedema in my arm from all the nodes
that were taken. I now grieve the loss of being able to paddle competitively with my friends and teammates as the pain from that is too
much, and I have to ‘move on’.
I grieve the Loss of so many amazing women that I have known now
to Canser. It is in their memory that I keep going on and remember to
honor them in the reality that I’m alive to do so... Those nodes taken
out? All Clear. ;-) THAT is what I need to remember. Yes, Loss is broad
and encompasses so much. But I will always try to find Hope and the
ability to pick myself back up.
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Strong Body – Go Do
Freedomgrl
I feel good today and it feels good to feel good. I will never take that
for granted ever again. I woke up this morning after a good sleep and I
felt refreshed. I have lots of energy. I feel like I can do anything today!
Wink
Dig it. On the North Shore of the big lake, May showers bring June flowers. Time to plant the flowers, sow the seeds, feel the dirt under my
finger nails. Dig it.
Fibber
I am here at Chito Beach Resort thinking about the beauty of this spot
we have picked out. We are in a tiny cabin, so small we have to plan
our movement. Our couch looks out on the Strait of Juan de Fuca and
the tide is slowly rolling in. When I was in treatment, I drooled over
outdoor catalogs, imagining myself being able to scale walls, ski, climb
mountains, paddle on canoe trips. I envied the virile. One year after I
completed treatment we backpacked the Cotswold. I felt so good and
healthy. I was coming back into my old self again.
Farrah
“I got a new attitude – ooh ooh ooh”--the Pointer sistahs! That wonderful song keeps going through my head! And given the scope of songs
out there today, it could be a lot worse!?! I’m off to paddle in Wisconsin with amazing peeps! Wishing I was healthier--am at my heaviest
that I’ve ever been, yet still very active. I’m going to be around some
of the best paddlers and instructors in the country this weekend--such
talent. I am missing my dragon boat team a lot these days. So this
will be wonderful! Bringing my fun, new lymphedema sleeves--to
amuse, but also to help me deal with the pressure of paddling. Ahh,
the joys of post-canser and reconstruction. Glad those 20 nodes were
clear, but dang I’m missing those little buggers! Amazed, too, how sore
I get now at my scar sites and pecs in general, especially after a tough
workout. I’m really focused on figuring out what my ‘new’ 48-year-old
bod is doing these days with my metabolism. And REALLY ready to go do
some ‘yakin’ this weekend!
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Sunshine
Feeling Pretty. I have never thought of myself as being a “pretty”
woman. I’ve never had a lot of confidence in myself as far as my appearance goes. I know that I am a fairly smart person and it has always
been easier for me to accept a compliment regarding that.
When I was going through chemo, beside the obvious of not having my
own hair, I also had to worry about covering up my chemo port. It made
dressing for summer a little difficult. I needed to stay covered up and
avoid the sun. I did not feel pretty at all at that time. So, I started wearing bracelets, something I had never done before. I
started out with a small, colorful collection of bracelets. It was my way
of saying “I can be pretty too.” I find now that I dress with much more
color and I like that so much better. I never leave the house without
one of my bracelets and have expanded my collection. I am now able
to see the “pretty” in me.
KMarie
Yemen was my “I’m Alive Trip”. I had just finished radiation, was trying to adjust to hot flashes, and to put “cancer” into perspective. M
called and said they were going to Yemen for Thanksgiving and wanted
to know if I wanted to go. I asked for no details and did not hesitate
in saying YES. It was dusty, primitive, exotic, unhealthy and the most
interesting place I’d ever seen. We rode around in Land Rovers, walked
up steep paths, toured ancient ruins, stayed in a resort that had been a
sultan’s palace, got dustier and dirtier than I have ever been in my life,
had the best shower ever, ate unknown foods, did not drink the water, soaked up the wonder of it all, and felt HEALTHY. Sleeping was a
struggle, because of hot flashes, and walking in the sun triggered more
hot flashes. But I felt fabulous. I felt strong, I didn’t tire any more easily than did my friend, and no one mentioned my health. I was ME.
Wink
Dreams are spirit filled. They are gifts to encourage us. My dreams
today are meant to guide. Success in anything comes step by step. I’ll
follow my dream to rid my body of my cancer, one step at a time.
Coming to Terms
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Sunshine
“Survival mode” is how I now refer to that time in my life.
Fibber
My husband and I adopted the term “cancer voice.” You have to hear
it. It was the voice of deep concern, but still with avoidance of the
topic.
Superpea
I called them through my treatment ‘high Tide” or “Low Tide” days.
High tide meant it was a good day, low tide meant that it was not. I am
still blindsided by low tide days, even though I try to remember when
they are coming. Sometimes, though, you don’t even know why it’s a
low tide day. It just is.
Farrah
By the way, I NEVER spell cancer correctly. It doesn’t deserve to be
spelled correctly.
Hatdis
While reading, I recently came across the term “aspirational clutter”.
Aspirational clutter is all the things around the house that you keep because you planned to do something in the future. For example, I keep
a bunch of cross-stitch projects in my closets, even though I haven’t
completed a single cross-stitch project in my entire life. I love the
idea of sewing a beautiful picture or pillow, but never seem to be able
to get started - let alone finish!
The author who coined the term “aspirational clutter” wants to tidy
her environment because she thinks that will increase her happiness. So, will getting rid of all the bits and pieces of projects that never
seem to get done add to one’s happiness? I’m not sure. Yes - having
a clean and tidy house adds to contentment. But I love the idea that I
will get to those projects - organizing the photos, learning how to crochet, completing a cross-stitch pattern. Maggie
Maybe part of this process is that I shouldn’t try to think too hard about
it.
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Light Against Breast Dancer
Fibber
My line: It’s a chronic condition. Get the word out.
Wink
Living ‘in’ cancer and living ‘thru’ cancer are two different challenges.
Living in cancer, it is me, me, me. My focus was to heal my mind, body
and soul. Now, living through cancer, I need to live ‘normal’. Who we
are is who we need to be.
Brand New Possible Truths
Superpea
Let me celebrate life; complicated, frightening, raging, quiet, colorful
life.
Fibber
Anyway, I am doing all I can, but I know some days it is a crap shoot
and I try not to dwell on it.
Superpea
Giving up being the center of the universe is something I have to get
used to, too. If I want to be truly human again, not living with one
foot in cancer world, I have to let go of the spotlight and just be like
everyone else. Forgettable... or at least willing to go unnoticed. Boy,
that’s the hardest step of all. Allowing myself to be taken for granted
will mean I’m truly free of the fear. I’m still working on it.
Wink
I’m trying to appreciate the gifts of bad times, as well as the periods
of rest. The sorrows along with the joys help me gain new insight. The
need for care and guidance keeps me humble.
Hatdis
I’ve been thinking a lot about the idea that our reality is distorted by
the lenses of our past. As a child I was told to be quiet, to be unobtrusive and most definitely not to toot my own horn. In my family, if you
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tolerated pain or disappointment without complaint, you were praised. However, if you were a show-off or thought too much of yourself, you
were promptly put in your place.
Having cancer makes me question many ideas I have considered true. Is it really better to be quiet and to take up as little space as possible? Is it really better to suck up pain and disappointment - or is it better
to express it and to let it go? As I start to question whether my ideas
and beliefs are really true or just distorted ideas from childhood, I feel
uncertain, but also excited about all the brand new possible truths.
Super pea
It’s been days of hard work, weeks after weeks really. Sometimes its
hard to see the point. Is this what life is about? Is this what I’m surviving for? The answer never comes. It’s in those in-between moments,
when life quiets briefly...sort of the flat water between the ripples
when the thought comes to me. Life can be humming along, seemingly
with a power of its own, headed toward an unknown destination. And
then the in-between moment arises. A pause between breath and I am
reminded of the question: Is this where I want to be?
I have to remind myself to kick and swim, not with indirection but with
purpose. To relax and breathe in rhythm with my strokes and find a balance...to enjoy the swim, enjoy the stroke, enjoy the breath and know
that I am living, without pause.
Freedomgrl
My mom passed away way earlier than she should have, at the age of
55. I was 28 years old, just a kid. So many people showed up to her
funeral. So many went out of their way to say what a wonderful, giving
person she was and how she touched their lives. Afterward, I thought
to myself that she would have really enjoyed hearing those comments
herself, though she would have been modest about any praise.
That experience stayed with me. When I was diagnosed, I was living by
myself. I was states away from my family. My friends rallied around me,
took care of me. Weekly deliveries of nutritious food. Company while
I recovered from each round of poison. My grad school friends had a
silent auction for me. Family and friends held raffles to help me pay my
bills. My city friends chipped in and got me one of the best wigs money
can buy. I worried about nothing but getting better. I think back on all
of that and realize that I have a pretty good idea how my funeral will
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look. I am so lucky to have such great family and friends. I will never
take them for granted again.
Sunshine
My personality has changed after my diagnosis of cancer. I am much less
controlling, more quick to say Yes to doing something, and less likely
to cancel out on plans. I am more likely to go with the flow. I like the
person that I have become.
Fibber
I was gone three days, where not a soul knew I ever had cancer. I didn’t
run into anyone who talked about cancer. I was “cancer-free” for three
days. I am even scared to type that. Yikes!
Maggie
A lot of times, when a mom is diagnosed with breast cancer, we say to
ourselves, “I hope I will live to see my kids graduate from high school.”
Of course, if an older woman is diagnosed, she may say she wants to
live to see her grandchildren get married!
Wink
Recovery is change. It means changing my lifestyle. It means reaching
out to others. As I nourish myself, I grow. I recover.
Freedomgrl
With everything I let out, a little tWinkle returns to my eyes. Woo-hoo.
I get excited about things again.
Hatdis
Though I haven’t completed a single cross-stitch project in my entire
life . . . I love the idea of sewing a beautiful picture or pillow.
The End.
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