MBC is Not a "Journey"

MBC is not a journey, it is a disease. And I am not fighting it, I'm being treated for it. I am not battling it, I'm dealing with it. My 20yr old DD, on the other hand, likes the terminology of "fighting" - she says it feels stronger to her. I told her she can use whatever terminology makes her feel better. She never says to me "you are fighting this", the terminology is for herself.

I like calling it a chronic disease, since that's part of my coping mechanism. I don't kid myself that it's like diabetes; it's more like serious heart disease in the "chronic" scale. I have a friend who has been dealing with heart disease for over 20 years and believe me it's been extremely difficult for her.

Leah

I'm guilty of saying  "journey" , but when I think of that road, it isn't an adventure like the El Camino de Santiago trek. It's more of a "yea, tho I walk through the valley of the shadow of death" kind of journey and there are man-eating potholes and crumbling edges. I don't mean to offend others if I refer to this rotten journey (that sucks donkey balls, as Moiralf so aptly phrased it).  I do feel my hackles rise though when I hear the fighter/warrior kind of words. The "fight like a girl" shirts are popular in their bright  pink camouflage patterns. I won't be wearing one of those. I find those pretty offensive on more than one level. I'm enjoying reading everyone's take on this subject. Interesting. Good luck finding a common ground here, Moderators

"Journey?" Ugh.

@surfdreams, don't feel guilty about using journey. It may not be a hot button word for you and that is perfectly ok! And good luck to the mods, indeed!

@sinsin, so sorry about your recent dx. Were you dx'ed with metastatic disease right away? Clearly you understand that for us, this journey, weird trip or whatever we call it will only end one way. Yes, you are right that people don't understand bc in general but, as you will discover, mbc is even less well understood. I know you are just recovering from surgery but when you feel up to it, check out the threads on the stage IV forum that deal with your specific mets. Stage IV stinks but we are a great group!

Wow, I really hesitated in responding because of my site
name, but I have to explain why I chose it. My name doesn’t just reflect my
experience with breast cancer, but my health issues for years. I have had
symptoms dismissed and illnesses missed and have been chastised, demoralized
and patronized by certain members of the health industry. I have been told I have mild MS and
fibromyalgia years ago and since then have had to have emergency surgery for
narrow angle glaucoma (almost lost my eyesight) and had a slight stroke BEFORE I
was first diagnosed with breast cancer. Two years later I was diagnosed with it
to my sternum. Two years later I am dealing with it possibly in my adrenal
gland. (surprise, surprise)

When I was first diagnosed I had been going to the doctor
for two years saying something was wrong. By the beginning of 2009 I was
sleeping sitting up in bed because of vertigo, had lost 20 pounds, was dizzy
(there is a difference between dizziness and vertigo), was exhausted, and had
vibrating vision. Every morning I got up something else would go haywire.

Through a lot of divine intervention and meeting the right
people at exactly the right time I am now, after almost 5 years, feeling MUCH
BETTER than five years ago. It has taken 45 radiation treatments, 14 rounds of chemo, alot of Neupogen and Herceptin as well as relentless research and many
appointments with my wellness team to get to this point. I still have some
health workers treating me cruelly to the point I have almost walked into a
neighboring river after one recent appointment. But I have to remember that I
have people who believe in me, lift me up in spirit, and those are the ones who
have helped the most.

I could have picked a name to signify this “trip” like maybe
LSD would have been a good one, but I chose journey because it encompasses my
path to healing. The word clarifies the significance for me and I have come so
far from where I was. I can make myself a sandwich, dress and feed
myself, go out for a good time, walk, and just enjoy life. I have a sister who died
of MS 12 years ago and she couldn’t do those things.

Both of my parents lived through opposite sides of World War
II-my dad in the Royal Airforce as a navigator and my mum as a teenager in
Berlin. They had to live with the PTSD
from their experiences-my dad developed OCD and had shrapnel in his head until
the day he died. My mum lost a brother
and another was captured. Her father was in both World Wars. He was a doctor of
philosophy at a school and would have exchanges with English students. With
every fibre of his being he wanted peace.  My family has been devastated by the
effects of war and for that reason I dislike any terminology associated with
it.

I am grateful for each and every day, be it sinking into a
valley of despair or having an epiphany and feeling like I’m on top of a mountain. When doors have been slammed shut in my face I
have found the help I needed at the right time.

I dislike that I have metastatic disease and am playing the
real life game of Survivor where I have to outwit, outplay and hopefully
outlast the games this illness can play, and my road has taken many twists and
turns. I am going through some difficulties right now and am scared…….but I am
alive and I am blessed.

I'm sure I am guilty of using terminology that could hurt someone out there who is dealing with this devastating disease.  I have words that are turn-offs for me too, but I won't list them right now.  In general, though, I don't like it when people tell me I'm "incurable".  That's the word that doesn't sit well with me.  Who has the right to tell me that I won't be one of the few fortunate ones who "wins this fight"?!  Okay, I get saucy when I'm healthy, like I am right now, so hopefully I won't offend anyone who hates those words!    

Bestbird, I hope you don't mind if I share a poem I wrote right when I was in the thick of treatment.  I almost lost my life during chemo and was hospitalized for about a month, away from my hubby and four small children.  When I got home and recovered for a few weeks, before starting chemo again, I went out on a little walk/run on a beautiful day.  It was the first time I had the energy to do that in a long time, and I came home inspired to write a poem.  (I don't normally write poetry).  I'm not saying it's a great poem or anything, but it just flowed out of me and was exactly what I had been feeling, and I felt fully satisfied with it when I was done.  A lot of analogy in it, but I think many of you could relate.  I will share it for those of you interested in reading:

Mother of Four Battling Metastatic Breast Cancer:

I stepped out into the world
one day to go for a run. I was eager to
try out my brand new running shoes. The
sky was brilliant as the sun rose over the mountains. I breathed in the fresh crisp air as I laced
on my shoes. I was ready for this
run!

It was hard to contain my
energy and strength as I bounded out onto the pavement. I smiled at the little flowers I saw blooming
on the side of the hill. It was almost
effortless to glide forward at a nimble pace.

Sometimes I accelerated
without even noticing. Other times I
stopped and dawdled at the side of the road.
Frequently there were others around me.
We ran together for a while and compared running shoes. We gleefully splashed through puddles, and
trudged up steep hills together. We held
our arms up in the air as we recklessly sprinted down the hills and into the
valleys.

Soon one was running beside
me. He made my heart pound deeper. My steps grew in rhythm with his. We turned onto a new path together. It felt familiar. It was our own.

Our new path was
narrower. It was a lovely winding path
with playful white flowers freckled along the side. We splashed in the cool mountain stream that
bordered our path. We climbed a tree to
get a better view and chartered our course.
Our shoes were slightly worn now, but we had taken good care of them,
and knew that we could run many more miles on them. We loved our new path. We vowed to run on it together forever.

We decided to share our path
with four new runners. We were so
excited to show them everything. We
laughed as they marveled at their new shoes.
We taught them to lace up their shoes, stretch, and run, run,
RUN!!!!! If they fell, we picked them up
and brushed the dirt from their knees.
“Your wound will heal” we said, “It is not so bad. Now get back up and run!“

It was hard to keep up with
them sometimes! But other times they lay
peacefully in our arms as we reverently watched them sleep. They were amazing.

We held hands and ran slower
so that we could all stay together. A
steady pace forward and side by side was our goal. The radiant sun was still high in the sky.

Suddenly a thorn shot through
my shoe and tore deeply into my foot. I
was stunned at first and stumbled. I
could not get the bleeding to stop. I
fell and cried. The wound was too deep
to heal, I was told. I could see the wound, but I couldn’t feel the pain.

Someone cries beside me. He takes my hand again. We are wounded together. We are lost from our course. How could we lose our beautiful path? This was not what we planned.

We tell our little runners
that it will be okay. It will heal. Then we continue to run on our new path as
the sun begins to hide behind the mountain.
We quicken our pace to beat the setting sun. We hold each other’s hands. Our little runners can feel our grips
tighten.

When I am too weak to run, he
carries me for a while. I try to smile
and I run when I can. Our path gets
steeper and darker. I try to move
forward on my own, and our hands lose contact briefly. I can feel the pain now. Our little runners cling to us and stumble
when we do. We reach out to find one
another again and turn the corner. The
path is unfamiliar ahead.

If we cannot get back onto
our beautiful path, can we make this one ours?
We decide to recharter our course.
First we must stop and remove the thorn, we decide. It will hurt, but it must come out if there
is any chance for it to heal. We let
ourselves believe that it can heal. We
cannot remove my shoe completely or I will have to go home right away. We know that we will both end our run at
home, but we want to enjoy the path together as long as we can. We try to remove all of the thorn. We don’t want to leave any part behind.

I sob with pain as it being
removed. Sometimes I stop and take a
deep breath. “We have to continue“, I
say. My will to be rid of the thorn is
increasing. I want to believe that my
shoe can be as good as new. Our little
ones play alongside the path, unaware of the thorn. I want to watch them grow into strong
runners. There is so much for me to
teach them before we go on separate paths.
They come over to us when they see the clouds darkening, and we tickle
them and tell them to go play by the stream for a while. This will just take a moment longer.

We struggle to get rid of the thorn.
Feeling weak, we cry out to God.
“Please heal this wound!!” Others
encircle us and lift me to my feet. “If
you do your best to repair your shoe, I will take care of your foot” comes the answer.

We summon all our strength
and pull as hard as we can on the thorn.
It comes out but leaves a wound
in my foot and a hole in the shoe. We
ask others for help to repair the shoe.
We want to do the very best job we can so that the shoe will last a long
time. We have to use what is around us
to repair it. The repair job seems
solid, but the shoe will never be completely the same.

I look at all who have
gathered around me on our path. They are
telling me that it will be okay. They
encourage me to keep running. I don’t
like this path as much as the one I started on, but I am not alone like I was
at the beginning of my run. I decide
that my foot needs to be stronger if my shoe is weakened. I did not start this run only to go home
early. I will run better than I have
ever run before!

I take his hand again with
renewed energy. I can feel my foot
healing already. We take our four little
runners and begin again. The path takes
us around another corner, and the sun is still shining. We only thought the sun was setting because
of our place on the path. My shoe is
working well, but we know that all of our shoes will wear out eventually. Then we will go to our beautiful home and
rejoice at the new shoes that await us there that will never wear out.

But in the meantime, we look
around and notice that the path is much more interesting than we thought. The shadows only make the sunlit parts look
brighter. There is still a long way to
go on the path before we reach our home.
We will never be the same as we were before the thorn. In many ways we are stronger. We are more aware that our run cannot last
forever, but we are not afraid. We vow
to run our best, to splash in the stream, to raise our hands in the air and run
recklessly down the hills, to lift those we see who have fallen on the path, to
tickle our little runners, to teach them all we know, and to hold hands all the
way home.   

Thanks for reading

deniseneish.com

hi all, 

I am newly dxd as MBC it is a reoccurrence of ILC , i understand that some words are offensive to us. But i also understand that most people don't make the difference in cancer terminology. I believe they are trying to help and give strength. They mean well , so i am not offended , i smile . Even though MBC is a devastating disease and terminal , there are also a lot of stories and hope , and there are people living more or less normal lives and longer lives. It is definitely a deadly and un curable disease but with new treatments it is sometimes manageable and controllable. But so are all cancers. Please check other threads like stage IV forum people with multiple mets , these ladies were dxd stage I and  II yet it came back with vengeance to either stage IV or metastatic. O focus personally on the little hope there is, and don't give much attention to terminology and stuff. I keep the faith as do a lot others and some of us actually make it. I hope you are not offended by my response and i do wish you all better days and a lot hope and faith. 

I think one of the reasons I don't like the word journey is that I feel like my life has become much smaller since my MBC dx.When I think of journey, although there may be low points and a meandering path, there is always the possibility of things getting back on track or even better. That will never be the case for me.

 I don't have the energy for all the things  I did before, I need to schedule my life around appointments and how I'll feel after treatment. Making long term plans is difficult (or pointless in the case of very long term plans as I won't be here.)

To me it has a context of trying to make others feel better about our sucky situation. Well, I feel like cancer has become my life and how I am defined now. Calling it a journey just amplifies that feeling and gives it even more importance and that what came before is over and not how I am viewed by others anymore.  

As to the battle/warrior terminology, I'm not crazy about that either. I don't mind 'fight' so much but I would cringe if someone called me a warrior. 

All that being said, I may not use those words, but when other people with cancer or their families do it doesn't bother me. If it works for them that is great. It doesn't affect me. It's like the 'dumb things people have said to you thread'. I've had a few doozies, but most were from a place of people trying to help, so while I may shake my head at those comments, they don't make me mad. Of course comments that are not well intentioned or from medical professionals who should know better are a different story. 

definitely...

Brava! I love it.

Right now, I think my obituary is going to read more like this:

"At first she carried on normally but as the months went by it began to sink in that she had the disease that she dreaded. She was ok with the daily medication since it wasn't harsh at first, but she dreaded the treatments that were necessary every 4 weeks and the quarterly scans because up until she was diagnosed with cancer she was hardly sick a day in her life.  Honestly, she was the picture of health. She felt betrayed by her body and soon, she felt defeated by this disease so she began crawling up into a little ball on her "spot" on the couch in the den. There wasn't a day that went by that she didn't cry.   She spent many hours looking feverishly for a cure and after eating a mainly raw vegan diet and drinking her share of wheatgrass juice she succumbed to this horrible disease." 

I am actually very grateful for all the wonderful things in my life but (and you knew that there would be a but) I would have loved several more cancer free years then what I have been given.  My heart truly goes out to anyone who has had to deal with cancer or any disease at young age.

I actually hope that I become as strong as all of you and that my obituary can read more like the one that EnglishMajor posted.  My glass is half empty now...it was always half full before but I never faced this big of a challenge before. 

I am going to look for my 85% dark chocolate right now (I have managed to keep it on my diet).

Thanks you guys for making me feel better. Bestbird, I have to say that I have some of your posts bookmarked from Inspire.com and you have helped me alot in my experiences. 

Annie62 I understand your point of view. I don't think any words can make us feel better about our situation. I feel that we are more than survivors-we are courageous women who get out of bed each day (because sometimes it would be so easy to stay there) and we face whatever that day will bring. We go to the doctor, go to the doctor, go to a treatment, go to a scan, go to a doctor, on and on and we keep our heads up even though we may be terrified and try to keep our hearts and faith strong. I would never have wanted to be part of a stage 4 group but I would like to say that I am proud to be in the company of so many resilient women who go above and beyond whatever is thrown their way and have so much strength in the face of adversity.

Caryn, You never upset me (no apologizes), I wouldn't post my opinion if I wasn't ok with hearing everyone else's opinion too. 

I hope everyone is well today, well you know what I mean...

Hugs to everyone!