At 28, I had just moved into a small apartment with my husband of four years. We sold our car and were enjoying city life. He was starting his first job after graduate school, and I was working whatever administrative temp jobs I could get. We often walked to the local Italian market and to campus to look around in the CD store (back when those still existed). We were considering having children and had just regained insurance coverage, so I was already thinking of getting a check-up. That's what life was like when I was diagnosed, but I guess I should back up a bit....
I believe my story started three years before my diagnosis when I was working out at the gym. While switching from one piece of workout equipment to the next, I slammed my right shoulder joint into the handle of a machine. The pain was incredibly sharp and knocked me to the floor. A soft lump developed almost immediately, and I was in a good deal of pain for several days. The pain went away, but the lump never did, and it eventually hardened. It felt like bone to me, and when I looked around on the Internet I discovered that there is a benign condition called myositis ossificans where bone can form in a muscle after an injury. I decided that whatever was in my arm was probably harmless (note to self: self-diagnosis is not necessarily a good thing). Once I even made an appointment with a doctor to get it checked out, but I cancelled it.
In 2003, three years after the initial injury, my friends started to notice the lump in my arm and urged me to get it checked out. My husband and I tried to decide if we thought it was growing or not, and we finally realized that we could feel an uneven edge along the bone of my arm running down to my elbow. Soon after we realized this, I began experiencing odd twitching and "freezing up" in my right hand. I could also feel a strange "snapping" at my shoulder when I moved my arm in certain ways. But it was the hand pain and freezing up that finally convinced me to see a doctor.
I wish I had known when I was diagnosed what my life would look like nine years later. It would have helped me so much to know that the severe pain would get better, that I would have a job again, that I would have a child and be able to hug her tight (even if it is an odd looking hug) and lift her (all 30 pounds of her!). I wish I had known that I would get so hopeful that I would feel that I could have a child and might even live to see her 20th birthday. I wish I had known that everything would be okay. - Mary
My GP appointment led me to a sports medicine doctor. When he saw me, the sports guy thought I had some sort of muscle tear that had not healed correctly, even though I kept telling him: "I am pretty sure my bone is growing." He looked at me like I was nuts, but after an exam he had no idea what was going on, so he ordered an x-ray.
He disappeared for thirty minutes when going to get the results, and he returned to apologize and tell me that he and the radiologist were having a long discussion about my x-ray. There was definitely bone growing in my arm, but they weren't sure what type of "lesion" it was. I was referred to an oncologist and was told, "Don't go looking this up on the Internet because it will only scare you, and you'll think that they are going to cut your arm off."
As you can imagine, those comments made me anxious to learn more, so I researched on the Internet and came to the conclusion that things could be worse. I figured I had parosteal osteosarcoma. I was the "typical patient" with this rare disease - a female in my late twenties with a slow-growing mass. Research on the Internet also showed that more than 90% of patients with bone tumors were eligible for limb-salvage surgery (instead of amputation), so my research actually made me feel better, not worse.
It took several weeks to see an orthopedic oncologist, and several weeks after that to have a surgical biopsy and finally receive the diagnosis of parosteal osteosarcoma. During this time, I had a few different scans, and a surgery date for a humerus resection was scheduled six weeks after the biopsy results came in.
The Worry, the Wait and the Surgery
Waiting for surgery was nerve-racking. A big question hung in the air before surgery: Was the tumor still low-grade, or had it become aggressive (which would mean major chemotherapy and a much worse prognosis)? My oncologist said there was a part of the tumor (the newer part near the elbow) that was troubling, and the odds were 50/50 that it was higher grade, and he wouldn't know until after the surgery. The chemotherapy protocol for high grade osteosarcoma is, quite frankly, terrifying. Between the pain and the worry, I did not sleep well during the six-week wait for surgery. But my husband and I did book a last-minute trip to the Bahamas to live it up!
The other big question we faced was: would my arm work after all of this was over? I did a lot of research on limb-salvage surgery and was concerned that my tumor was 11cm - large and taking up a lot of the joint space. I had to choose between an allograft composite or an endoprosthesis without an allograft. I chose the allograft, and in the end I'm not sure it was the right choice. [I had a lot of burning pain at the top of the allograft area for years, and a musculoskeletal ultrasound about a year after surgery showed that a lot of small bone fragments were coming off of the allograft and splintering into my muscles, probably causing the burning pain. The radiologist who specialized in musculoskeletal ultrasounds said that my shoulder was "a mess." Ha! He came in and talked to me (highly unusual) and seemed to really care but had no idea what could be done.]
Limb-salvage surgery took more than seven hours...the surgeon spent several hours trying to do a reconstruction and "stitching things together" because so much muscle was lost. I remember the relief I felt waking up when I realized I could move my hand! I also remember my complete shock as the nerve block wore off and the pain got worse and worse. Getting out of the hospital with my own bottles of medication was the best thing ever.
Seeing the final pathology report at my check-up after the surgery was such a relief. All areas of the tumor were low grade, so no further treatment would be required.
One of the most frustrating things about recovering from this surgery was that no one, not even my surgeon, could tell me what to expect. He sent me to physical therapy for an undetermined amount of time, and my therapist had never seen anyone who had this type of surgery. All we knew was that 70% of my muscle had been removed, and I was in a lot of pain, so the next year and half was full of trial and error. Often my therapy visits were nothing more than a heat wrap or an ice pack and some encouraging conversation. Other times, we tried all kinds of fun exercises to increase my function. In the end, I didn't gain much function in my shoulder, and my pain level improved significantly when I stopped doing PT exercises. Basically, we had been trying to heal up a shoulder that was not very "heal-able." But no one could tell us that for sure, so Brenda (my therapist) and I kept trying!
During this time, the pain in my shoulder never went away, and it ranged in intensity from moderate to severe. I had no idea how to mentally cope with that much pain. My GP made some very insensitive comments (oh, it's not that bad, you're lucky to be here) that were quite upsetting. Finally, we moved and signed up for a PPO insurance plan that allowed me to choose a specialist and go see him. I found a pain specialist, a caring neurologist, and we found that Baclofen and Lyrica seemed to take the pain level down more than anything else. The pain was chronic and difficult for more than three years, and then, for no apparent reason, it gradually went away.
Since 2007, my arm has been nearly pain-free. My body seems to have finally adjusted to the allograft and my limited abilities! In 2010, seven years after my diagnosis, my husband and I took the plunge and had a baby! Our life took a detour for a while, but we are very happy to be parents now. I have to limit how much I hold our little girl (she's' 30+ pounds now, and my surgeon recommended limiting lifting to about 5 pounds!), but I am still able to hug her and teach her and do all of the living I'd like to do. Sometimes I have dreams about swimming - the feeling of my right arm reaching over my head and stretching out in the cool water is amazing, even if it's only in a dream. I cannot work at a desk, but am able to do quite well on a laptop, and I love what I do. Life is FULL and RICH and AMAZING.
My "bionic arm" is now almost nine years old, and I haven't had any further surgery. I've started having some more painful episodes that make me think revision surgery may be around the corner. That is to be expected with these artificial parts, so I'm going to pick a surgeon and hope for the best. There is a chance that revision surgery may even improve my function, which would be great, but simply saving the use of my hand is what I value the most. Two hands can do so many things! :) I have to admit that for years I have feared losing my arm, but now that I've encountered Bryall, Cari, Olga and the other survivors I've met along the way, I'm not scared of that anymore.
Thoughts for New Patients
It is okay if there is a part of your life spent in doctors' offices, pain clinics, and hospitals. It is okay if you are scared, angry and upset. A diagnosis can become a part of your life...just a part of it instead of all of it. At first, nobody wants to be in "cancer land," and all you want is a way out, but this diagnosis will be a part of the rest of your life. That is just the nature of sarcoma.
At times you will have to advocate for yourself and learn to communicate well so that you can get your needs met. Speak up for yourself! Take care of yourself! If you are not happy about something, do something about it! Empowerment is about having the tools you need to live your life well, and you can be an empowered person dealing with this disease.
The unknown will never go away. When dealing with an unpredictable cancer, there are two ways to cope well. Either we find a way to be comfortable with the unknown (which is harder than it seems), or we learn to assume the best. For most of this journey, I've tried to embrace the unknown. There was no way to know if the pain would get better or if I'd have a recurrence, so I tried to focus on the moment, to appreciate all of the good in my life, and to accept that things could change (for good or bad) at any time. Now that it's been nine years and things are going well, I wonder if it would have been easier to just assume that things would get better. But "better" was hard to imagine for the first few years. And that leads me to my last point...
This could be the biggest challenge of your life. Go easy on yourself. You will face some significant obstacles, whether it's pain, limitations, the effects of treatment, or the great unknown. You might have to fight with an insurance company, drive your nurses crazy to get help, put your career on hold, and call on your friends and family for support. You may need to do your own research, travel for a second opinion, or find a counselor. Just to be clear - a sarcoma diagnosis is a huge challenge that might require all of your resources, so step up and do whatever you can to make your life better as you go through this. Let others help you. Speak up and let them know what you need. And be a good friend to yourself.
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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.
For the past two years, I have juggled two roles that often feel like polar opposites. I imagine that many of the doctors, nurses and advocates dealing with sarcoma live a similar "double life."
As a new mom, I spend my evenings and weekends with my 1-year-old. She is unstoppably alive. In her world, suffering is a fever that she doesn’t understand, and comfort is being held for hours until she feels better. Whether sick or well, awake or asleep, Adele’s little body is a picture of life at its simplest: learning and growing with the help of her caregivers only steps away. When the milk spills, she laughs and rubs her hands in it. When she accidentally kills a bug with her curious fingertips, she has no understanding of "dead," and she moves along to the next adventure.
As a part of the Liddy Shriver Sarcoma Initiative, I spend my days (and late nights) connecting with people who are dealing with a painful, relentless disease. Sarcoma enters lives unexpectedly, and it often presents a serious threat. Whether you are an average person who has never heard of sarcoma (like I was at diagnosis) or a physician who works with it every day, it is difficult to imagine a disease like sarcoma entering your happy home, or God forbid affecting your precious child…it’s unthinkable. Still, none of us is immune to suffering.
The more I deal with sarcoma, the more I see that it makes heroes of those who can simply smile. The Faces of Sarcoma gallery is so powerful because we know the "beast" that each of those smiling faces has stared down. But if we are honest, most of us will admit that pain can get the best of us (or of those under our care). Pain, whether from disease, its treatment, or watching a loved-one suffer, is exhausting. It takes much of our energy and focus away from the things we'd like to do and shifts it to the signals of pain. That is the experience of pain, and suffering usually follows when we cannot accept the changes and limitations that pain brings. We wrestle. We question. We get angry and overwhelmed. Most of us have an incredibly difficult time accepting that life can be so painful. In fact, if I refer my friends and family to this piece of writing, I imagine that some of them will stop reading before they get to this paragraph. Most people don’t want to think about pain, much less experience it.
I remember a deep conversation that I had with another osteosarcoma survivor. We were sitting next to each other on a plane headed for Camp Mak-A-Dream. We were both in a great deal of daily pain that was made worse by sitting in cramped quarters and rushing from gate to gate. Though we had medications, they came with side effects and didn't make traveling much easier. We knew that accepting our pain and physical limitations would probably help us find more happiness - or at least contentment. But after much introspection and expression, the conversation stalled and quietly ended when both of us agreed that we could not accept how painful our lives were. It just wasn’t right. We were young; we were survivors. Life had to be better than this.
Still, we were on that plane, living as fully as we could. And as our conversation lingered, unresolved, in the air, I pulled out a notebook and brainstormed about making our online support group better. Helping others with sarcoma felt like my calling...it made sense. And I think for many of us, doctors and nurses, patients and caregivers, living authentically and reaching out to others is all we know to do in the face of suffering. We attempt to connect with and help others, and we try to live fully in the moments when we are away from the disease. Surprisingly enough, there is much happiness in this "double life," even though suffering is so intermingled with it.
November 3, 2003 - Five days after diagnosis
hope remains undeterred.
she pulls on her jeans, ties her boots
and walks out the door for another test.
she glows below the autumn trees
feet hitting pavement as they’ve always done.
hope is my best friend,
sometimes i’m unsure if she’s beside me or within me
if these boots are mine or hers.
November 7, 2003 - Eight days after diagnosis
I am pacing, have been pacing beside this lake for hours, for days. The water is black; the grass beneath my feet is green. There are pine trees lining the banks across the way, and a few limbs hang high above my head. At night, the stars are bright and clear. During the day, the sun shines as through binoculars.
The pacing has me tired and out of breath; my chest feels tight. I am scared of the water, even though it’s warm outside.
The surface of the lake holds all of the colors of my life, and most of the colors mark specific moments and people. In those colors I see friends, loved ones, special events. Certain people have their own section of the lake’s surface, with their own unique colors. One of the memories stands out…it was July 4, and I was swimming with three friends. Fireworks were blazing in the distance, I could hear the water lapping in my ears, laughter bubbling occasionally.
Other parts of the lake are things that will happen in the future. Intuition has given me a glimpse of them, possibilities, probabilities, and definites. These things are cause for the pacing. They are real, and I am scared.
I become convinced that even though some of the lake’s surface is painful, it’s all supposed to be there. And I realize that the different sections need something to bring them all together; the lake is waiting for something to make things complete.
And I know I must jump in and swim, swim for hours or days…feel the cool wash over me, feel the uncertain depths below me. Swimming will mix the colors all together perfectly. The surface of the lake will be a watercolor, and I’ll float just like when I was a little girl.
My need to pace disappears, and I am swimming.
Now I can sleep.
so this is it, my battleground.
i don't want to be here.
the fog was just starting to clear
when i realized where i stood.
i've been here a few days
soaking in my own sadness.
this earth feels so foreign to me
the words they use make my mind race
grasping to comprehend connotations.
the strength rises within me
and i want to fight...but what?
they keep telling me to wait
a few more tests, a few more days
but what if it kills me?
no one understands the urgency;
people sitting in chairs see me as a chart
a collection of papers.
i dutifully walk from one doctor to the next
keeping appointments, writing down questions.
does anyone know how this feels?
i want my life back.
January 28, 2004
i am more
than your diagnosis, your stack of papers
piles of images of the inside of me.
i am more than a patient,
bigger than this disease that is not me.
my soul is growing faster
than that which drains me,
my spirit is rising quicker
than the painful days are passing,
this seed of strength deep down
that feels so small
is harder than everyone thinks,
and my smile is more resilient than this wall.
watch; i'll show you.
i'll get my life back.
October 31, 2004
the year of surgeries and scans,
margins and morphine, is gone!
another October is here
with its pumpkin memories
baking cakes and blowing out candles.
i love to celebrate my birth
and all of the friends i've loved
as the leaves began to fall.
and now there is one more piece
to the best month of my life,
in 2003 i had cancer
and in 2004 it was gone.
Fall in New Haven
November 3, 2004 -
In physical therapy, working full time, happy to be alive,
daily pain with hopes that it will improve
the leaves are spinning today,
bright yellow pieces
of my favorite shirt
fall to the road,
blowing in circles
i wish i could give you
today in new haven,
something you’ve never seen.
the cold breeze,
the smell of these trees and the
last burst of life
’til the freezing of time.
November 14th, 2004
maybe my feet will fly
out from under this desk
i’ll grab my bag, get my keys
and run grinning from this gun shop.
give me cancer
and i’ll give you a run for your money.
as long as i have this arm i’ll
take a thousand pictures of this planet,
write a hundred verses just to
celebrate these sightings of you.
February 25th, 2005 – Realizing that over a year of physical therapy has done little for my arm.
it could be a while.
i’m sitting here staring at a broken basket
and all the precious eggs on the floor.
it was never strong enough for them, but the only way to know was to try.
i tried so hard.
April 25, 2005 – Disability and pain
i do not know how to live in this place
between hope and ache.
in one moment i receive a gift
then feel fresh what has gone.
it is gone, torn away from me
while i was helpless asleep
and i am left holding my hope,
bleeding, up in the air.
How Much it all Meant
May 15th, 2005 – for my physical therapist who became my friend
too many pictures to fit into rhythm and rhymes
they just keep falling and i keep trying to catch them
and arrange them here to show you
how beautiful they were falling.
it doesn’t matter if you never know
never know how much i loved you
how much it all meant
how you helped me get my life back.
August 14th, 2005 – The renewal of an old friendship helps heal my heart.
i snapped a picture with my lungs
filled them up with the air of that place
with the rushing of warmth
under climbing pine trees,
with the smell of old chains
and black plastic seats.
and the print i hold now
shows the back of two souls in a blur,
with black boots on the left
and bare feet on the right,
August 15th, 2005
fade to glass…i will be at peace.
and right now, knowing that
makes it all the more fun
in this pond.
September 3rd, 2005
When I sit here with this blank page, things make sense again. My body falls into place around my centered soul. There is no fear, no anxiety. Do you know this place? This is where you pray your best prayers, where kisses mean something, where you know who you are.
It’s easy to love here, because you stop trying to fix people and make excuses. Things are…as they are. This is where your past and present blend together in seamless understanding.
It’s so easy to get lost.
November 16th, 2005
yesterday, you flooded me with reasons to live,
and a lifetime of things to do.
in a moment you lit my potential
and i finally wanted to be here.
everything made so much sense
that i forgot to write it all down.
but the pain keeps coming,
and it reeks of fear
of limits, and years
once you wrote your promises on my heart
but this burning ache has worn them away…
carve them deeper so they’ll carry me through.
this is so much harder than i thought it would be.
January 31st, 2006 – Flights booked to go out west and meet two sarcoma survivors, excited to be living so fully, worried that pain will overwhelm me while far from home. Three years since diagnosis, often feeling trapped in a painful body, having unexplained nightmares.
There is something beautiful beyond the fear. I am on my way to find it.
The path is anxious, like eyes are watching me outside the kitchen window. It is dangerous, like someone is intent on harming me while I sleep. It is covered with mud and I don’t know where to step. My arms are tight at my sides, as if restrained, and I walk facing the ground. I hear violent threats against me and the ones I love most. And it is so dark that even the light flickers dim. It is lonely. And silent.
But this is my path. I know I was not meant to live here, just to pass through it
toward the beauty.
And there I will drink freedom
in such great expanse of possibility
that my arms outspread will not begin to touch it all.
That is where I’m headed. I’m not stopping here.
A new lump
March 21, 2006
so i stand.
holding my hope
that life is more than all of this
because it is.
March 22nd, 2006
there is nothing to see but endless wheat, dirt roads, circling sky
and tiny me in the middle, twirling in freedom from pain.
and in my heart this is forever.
It’s a vision, I tell you. In heaven there will be a time when I’m ten years old, making myself dizzy because there is no hurt. And if I look far enough, I’ll probably see you in another field doing the same thing. Let’s meet up at the peach trees or the swing set, okay? We can have a birthday party.
So many people will be there…Julia and Aunt Les and David Shuler…and we will all be ten. It’ll be so much fun! If you get there first, save me a place.
13 Days Until Denmark
June 17, 2006 – before my Team Sarcoma adventure
sitting on the floor, writing notes, stuffing envelopes,
a stamp here, a picture there,
maybe a glass of wine to celebrate
an unbelievable summer.
i blame cancer for this, all of it:
the friends that keep me laughing at 1am,
the motivation to help, the excitement of success.
i blame it for the change in me,
for the ability to live years in a day without looking back,
for loving deeper, for opening up
and taking a risk.
July 27, 2006 - Those with friends in online cancer communities
know the feeling of reading with hope, fear and prayer....
it just keeps grabbing and tearing at you
so i keep throwing more paint on your internet walls
whatever will stick, dripping colors
to show you this fear is eating me too.
i want you to stay.
i keep visiting, scanning for good news.
i long to type until your faith becomes your healing.
you are part of my day,
Line of Sight
July 29th, 2006
I used to write. there was room for the words to play around in my head, and there was little to keep them from settling here.
It was like putting socks on my feet, pouring myself into clickety keys. The thoughts were eternal, but the words kept time like the pulse underneath my skin.
Lately it’s been pale and bruised; when the doctor saw me, he wanted my blood. And he gave me new pills for the pain and reminded me a lot of people live like this. Don’t let it get you down. You survived the sarcoma.
My problem is that i am honest with doctors. The newspaper says: "she fills the air with positive energy that makes it hard to believe she had cancer." But there is a desperation that comes through with the doctors, and it doesn’t matter.
Because this isn’t about doctors. It’s about finding the strength to know joy. No one can give me that. No one can give me my writing back.
Looking in…looking up.
October 5th, 2006
i will be that tall.
cracks and all, i will be strong,
steady…and stone cold.
no, i think i will be a tree instead.
February 22nd, 2007 – For a friend whose sarcoma returned for the third time.
sometimes i just pray more light your way.
and i look back missing the break that you had
the lifting of the weight, your drive out west.
and i know it doesn’t matter what i want, but
i really wish you weren’t sick.
April 14, 2007 – Feeling alone in pain
You walk around in your big boxes. I peer out from my tight quarters and wonder what it’s like to be you. You barely notice the corners beside you and the lid above you. You only get blisters if you run a few miles. And you slip into your cozy dreams and awaken refreshed.
Sometimes all I do is bang my head against my box.
But I see miracles. I breathe hope.
April 26th, 2007 – starting meditation, realizing the struggle is useless
The good and bad have gone; it’s all just experience. Take the constructs, tear down the frames until i can smell the trees and see the sky. Then send the air inside and the space around, and there I will be, baby-new to the wide-open world again.
I used to bang my head against a box. Today I stepped out of it.
Take it, quick. I don’t want to get back in.
Four years after diagnosis.
Cancer is nothing; cancer is everything.
See the contrast in the flashes of
malignant difficult breath,
This body is arched in shadow, spirit hidden
from pounding, pummeling force.
Then, one day
I am still
here. warm. safe.
Sarcoma saunters out of sight,
leaves me standing on the sidewalk
holding the damage.
it seems like forever.
And I remember my feet
skipping away. free.
But I am still standing there.
A footnote from Mary: Four years later, I am in graduate school. I am a jogger. And I don’t need pain pills! At the edge of all this hope, I dangle my legs and kick the rocks and take in the scene. My fingers are loosening their grip on my story. The introspective rhymes in my mind are giving way to new knowledge and understanding. There is so much to learn, and one day I will help others with their stories. The only way to that place is through this…transformation. Just as I begin to feel free, I rediscover the healing loop. Even freedom is a circle. And so I am reminded of a poem I wrote long ago.
if you’d just hold your head back
throw your arms out and
those circles would be
your freedom instead of
I can still twirl.