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Come as You Are: Living in Stage Four

Posted on June 10, 2013, 7:45 AM
Come as You Are: Living in Stage Four

By Mary Elizabeth Williams

Everybody loves a winner. And when I first got cancer, I was such a winner. I had faced a malignant melanoma diagnosis, a difficult, permanently scarring surgery, and a painful recovery with flying colors. I was, both friends and strangers alike told me admiringly, a “survivor.” Then a year later I was rediagnosed. Metastatic this time. Stage Four. And suddenly I wasn’t a winner any more.

Growing up, I was always the kid picked last in gym class, the one nobody really wanted on their teams. When I got Stage Four cancer, it was a lot like that. I wasn’t the popular survivor any more. I wasn’t a feel good champion of pluck and survival. Some of my friends looked awkwardly at their feet when I came into the room. Others told me – with great authority – that I just needed a positive attitude and I could beat this thing. Some flat out dumped me. It was a lonely, weird place. But you know who needs a team most? It’s not the popular kid. It’s the scared, lonely one in the back. I never needed help and support and basic kindness more than I when I was at Stage Four, and yet I never felt more invisible. And almost as deep as my fear of the cancer that was growing within my body was the profound sense that I had somehow let everybody down. That I was a disappointment.

Fortunately, soon after my devastating news, I joined a local cancer support group. Even before my first meeting, I knew it was the right place for me because of its simple four word slogan. “Come as you are.” There, it didn’t matter that I was Stage Four, that my odds were slim. There, I didn’t feel like I was on death row, I wasn’t a failure in my personal version of “Survivor: Cancer Island.” In my support group, I could just come as I was, every week, with no expectations, no performance anxiety.

People with metastatic cancer tend to be ignored in the public discourse of cancer. We don’t fit the profile of the upbeat warrior, triumphant and bald. And so, we often remain unseen. Mysterious. Definitely a little spooky. I certainly didn’t know much about what the terrain was like until I found myself on it. All I knew was that it had to very, very bad for there to be no Stage 5. And so, when my oncologist told me I was Stage Four, I was, unsurprisingly, deeply distraught. Yet as I sobbed to my doctor she told me, “Stage Four isn’t what it used to be.”

She was correct. Stage Four is no longer an inevitable rapid countdown to dying. A growing number of cancer patients are now living longer – sometimes for years at a time – at Stage Four. Even more amazingly, there are more and more people like me out there now – patients who’ve had inoperable, metastatic cancer and have been successfully treated. Thanks to an incredible immunology clinical trial, a fantastic team of doctors, and the pure good luck of my body’s responsiveness, I have now been cancer-free for a year and a half. And just the other day, I was quite happy to correct an author who’s just written a children’s book about metastatic cancer about her unfortunate use of the word “incurable” to describe it.

One tiny number, one little word like “metastatic,” can’t possibly articulate the experience of millions of people living with a variety of cancers. So when you hear it, whether as a family member or a friend or as the individual who’s sitting directly across from the person with the stethoscope and the difficult news, I hope you remember that. I hope you will not be like the folks who get up and leave the show while the houselights are still down. Trust me, however the story unfolds, it doesn’t end at the diagnosis. There is more to come. As the great philosopher Yogi Beara once said, it ain’t over till it’s over.

I have seen the effects of metastatic cancer play out in many different ways. Some of us get better. Some of us hold steady. And some of us die, because mortality is an inevitable side effect of living. And it doesn’t mean we didn’t try, or that we “lost a battle.” The last time I saw my friend Will, he didn’t look like a loser at all. He looked beautiful.

We had run into each other at the farmer’s market on a Saturday morning. We smiled at each other, just a pair of Stage Fours, one who was getting better and one who wasn’t. On that day, surrounded by a swirl of people rushing around, we stood still, because if you’ve ever faced the possibility of not having much more time, you treat time a whole lot differently. We talked about our families and our health, about hope and also acceptance. We were as much alive and as present as anybody else at that market that day. Maybe even just a tiny bit more. That’s the gift of the journey. We weren’t invisible. We definitely didn’t feel doomed. And if the people bustling around us didn’t notice us or felt too uncomfortable to look, cloaked as we were in our Stage Fourness, they missed something pretty great. Because, no, we hadn’t exactly been winners in the game of cancer. But we sure were dazzling.

Mary Elizabeth Williams is a senior staff writer for Salon.com and the author of “Gimme Shelter: My Three Years Searching for the American Dream.” She is currently in a clinical trial for advanced melanoma, and has been cancer free for over a year.


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Comments

Posted by howard mark | June 11, 2013 5:46 AM

You hit the nail so perfectly on the hed. My GBM is inevitably what it is, yet it’s my “negative attitude” which will shorten and extinguish my numbered remaining days. I just heard that from one of my weekly blood suckers and the social worker at our Brain Cancer support groups. I told them both off in the most positive way possible. I’m wearing a TTF so I might squeek out a few more months out, connected to the end with itchy and sore electrodes taped to my scalp. If this doesn’t exhibit hope,I’d be a freer and more mobile pessimist. There are better words, or middle fingers, that can respond to the “positive attitude” cheerleaders. Mary Elizabeth Williams has said it as it is and I wish she were heading Our support group. So far I have held my ground at my Group. While I am still able to do so, I will. I have explained that my graveyard humor is my way of making this manageable and laughing in the face of the inevitable. If anyone gets that, you’d think being in a room of doomed might find that more comforting than the stale cookies she puts out every meeting. I like the fact that these support members all have slogged through the shit and still find the energy to show up and be among the walking dead. I find myself among the Warriors. The Proud, The Noble, The Very Few. Informed and each with their own horror story, these are now among my most supportive friends. If I need to make a joke about searching real estate property during my rare walks through the neighboring cemetery, and it gets a laugh,I’m going for it. If the social worker Is right, and my shared laughter is negatively ending my life by a few breaths, I hope I’m taking that breath with a few funny folks hanging around, leaving me with a pleasant smile on my face, whether a positive or a negative one.

Posted by geetika | June 15, 2013 5:27 AM

All I can say is wow! U give people like me hope as my cancer has reached a stage where allopathy or surgery can no more treat it thanks to the chemotherapy ruining my kidneys to a v large extent. Well this is one part the other is me itself fighting when the docs have given up. I am 23 years its been almost 3 years fighting cancer with my moments of oh she is a warrior to oh what now? Hi5 to you!

Posted by Judy | June 15, 2013 5:32 AM

You are both truly inspirational.  I lost my sister to Leiomyosarcoma and you wouldn’t believe some of the stuff people would say.  I realize they were just uncomfortable, but sometimes it’s best to keep quiet and just give a hug.
Prayers to you both.

Posted by John Cotter | June 15, 2013 7:58 AM

Thanks, Mary Elizabeth, for such a well worded and heartfelt post.  Your reflection is universal for all people who suffer with some form of physical disease and mental illness.  My take on you post is life is about not losing hope for a better time.  Yes we will all die.  That is out of our control.  What counts to me is how we spend the time we have.  Can we leave a positive legacy to those who matter to us?  Can we encourage others with their path by the way we live our path?  Your post has encouraged me to refocus on my path and how I can be of service to others in some way.  Thank you.

Posted by Saire | June 15, 2013 10:00 AM

Dear Mary Elizabeth, Well done. It is for this reason that my husband with Stage IV melanoma, has decided not to tell most people in our immediate community of his diagnosis. He doesn’t like the feeling of being treated like a disease, to be avoided. Even the expression of sympathy can create a divide between people, as if we are mere mortals, and they are still immortal.Thank you for your beautiful essay.
The Laundry Thief
http://www.thelaundrythief.blogspot.com

Posted by GrandmaMissHelen | June 15, 2013 10:21 AM

Dear Mary;
Thank you so much for sharing from your heart all you’ve suffered and all you’ve learned in your fight against cancer.  I’m praying God will be your closest companion and trusted friend through all of your sufferings and victories.  Our lives are in His faithful hands and He’s worthy of our trust.  Even when others don’t understand, He does. May His love lift you and His peace keep you,  May all sin and condemnation be washed as far as the East is from the West, and may you sleep well with the knowledge He’s cradling you in His tender arms and covering you with His compassionate mercy and generous grace, whatever may come.  You are never alone in Christ, dear one. 
Blessings and love to you, sweet sister.
GrandmaMissHelen

Posted by Brian | June 15, 2013 11:08 AM

Nice blog. Congratulations and kerp kicking asd. I am m a stageIV survivor since 11/06.

Posted by Mark Williams | June 15, 2013 11:47 AM

Well done my friend (as always). You put into words what many of us can’t. Remember Grandkid pics smile. DON’T STOP BELIEVIN’

Posted by my name is Rick, my wifes name is Carol | June 15, 2013 4:45 PM

my wife has stage 4 metistatic melanoma, she was diagnosed with it over 2 years ago. they told her she had 3 - 6 mths to live in the beginning. just goes to show ya only God knows your time to go.
She had breast cancer first in 2008 and beat that. then in 2010 she helped deliver her first grandbaby. while doing this she heard someone ask her if she would die for that baby. she told him of course she would. when she turned around to see who said it there wasn’t anyone there. tat very night she noticed a knot under her arm. 3 months later it was so big that i couldnt put my hand around it. the melanoma got in her lymphnodes, lungs, liver, and eventually her brain. we went threw a treatment called IL2, it had a 5% chance of working and it did. Thanks to the wonderful people that prayed for her from all over the world. We believe it was by the grace of God that she survived and is still surviving.
My wofe Carol is the toughest woman i have ever met. she broke her back in a 4 wheeler accident the day we met, then got breast cancer and worked every day with me doing electrical and plumbing. but after she got this stage 4 matistatic melanoma, she decided to retire. it hasnt stopped her from enjoying life as much as she can. the day she came home from the hospital from surgury she had to go play in her garden lol. then after having brain surgury she had to go right out side and hoe her garden. she hit her head a couple times that day right where she had surgury. but it allways seems to work that way it seems lol. if ya hurt a part of your body you are gonna bump in to some thing right in that spot lol.
but any way…. i pray for all those of you that are going threw this terrible thing called Cancer. I hate it.
I have spent every day with my wife threw this. and know that nobody should be alone. God bless yas all

Posted by Enoch Ejukorlem | June 15, 2013 5:13 PM

Thanks for this encouraging read. It gives me hope for my girlfriend who is stage 4 but holding strong. I trust she would win this fight, and pray she does.

Posted by Marianne | June 15, 2013 5:22 PM

Thank you!!

Posted by Rick Stebbens | June 15, 2013 8:17 PM

I was not a stage 4 but a 2.  After 19 years I was told maybe it has gone into my brain.  Oh boy here we go again.  I thought different this time and I was going to act like nothing is there till I’m told different.  Then the phone rang at 9am and I have the all clear nothing in the brain. Cancer does it really ever go away?  Yes, if you let it. I look in the mirror everyday and see one of my two scars and live the day like it is my last.  You are a new hero of mine and a survivor congratulations you know how to live.

Posted by Lisa | June 15, 2013 8:18 PM

That was such a great, beautifully written post. I’m so glad you found a support group that helped and uplifted you. I’m also glad you had that wonderful moment with your friend at the farmers’ market. Hugs, prayers and positive energy to you. grin

Posted by Denise Hetsko | June 15, 2013 8:38 PM

So glad you told your story.  I too have Malignant Melanoma stage 4, 1992 1st removal in Dr. office followed through, thought I was good to go.  2007 I had a GM seizure which set the ball rolling, tests revealed lung and brain tumors, Dr. said “get your affairs in order you have 6 months to live”  After a few treatments of this and that and Thanks Be To God,here I sit, scans pushed back to every 6 months, only meds. now are for seizure (focal seizures) and vitamins.  So keep truckin on to those who feel like their on death row THERE ARE exceptions to the “rules”.  6 years later still waiting for the other shoe to drop, but I have FAITH IN THE LORD AND WILL NEVER GIVE UP!

Posted by ken forbush | June 15, 2013 8:57 PM

my wife recently passed on from melanoma.  she was alive till she died.  that’s how I always treated her.  of course the love we shared expressed itself in some unusual ways, some of them a sign that she was weakening.  my favorite story of her life in the end was how she was consuming fruit sickles, for they were fruit, not just sugar, they were cold and wet.  Nothing else seemed to help her eat, and toward the end she was struggling to lift the fruit sickle up to her mouth.  she was taking a long time.  when her daughter moved toward her to assist her she used her free hand to shoo away the assistance, and in a very weak, but determined voice said “myself”.  she was alive till the end, and lived to the new start with her savior.

Posted by Dawn | June 16, 2013 1:25 AM

A truly inspirational and realistic account of living with cancer.. I’ve been living with multiple myeloma and ongoing treatment for 7 years I’ve needed to adjust my life to manage the side effects of treatment. However it has made me stop and think and act upon what is really important in my life my family friends my health and to live each day. Something I now know I was neglecting prior to diagnosis.  We all have different journeys whilst living on this planet and accepting that this is my journey has been the most difficult to adjust to especially if you surround yourself with people who aren’t living with cancer however blogs like this support groups and even going to the hospital shows that you are not different and helps with acceptance.

Posted by Janis | June 18, 2013 8:02 AM

Inspirational! And every word so true. Thank you for reminding everyone that every day of life is a gift. God Bless.

Posted by Michelle | June 18, 2013 2:21 PM

Hi. You have said it perfectly. I too am Stage 4, metastatic renal cell. It began back in 2006 with right nephrectomy, then 2011, they found more (sx Jan. 2012) then again more and another sx July 2012. At my first staging in November, BAM! It had spread to the liver and to my left leg in two spots. (My leg had been hurting, but thought I just pulled a groin muscle- turns out, two spots were mRCC and causing the pain.)
I will say that the ONLY thing that I am thankful for with this terrible invader of my cells is that I have been brought closer to God. I feel a tremendous sense of relief just knowing that He is on my side and right here with me, every step of the way.
I don’t necessarily believe in ‘luck’, but I do believe in Him and His plan for all of us on our journey in this temporary home on Earth.
I have to reach out and try to get connected with a support group. To be honest, I was afraid of what one poster commented about blood suckers- and the sadness of the other stories of those less fortunate than me.
I have come to think of my illness as a chronic illness that I must learn to live with. Yes, I am in pain, but I am still alive and here to enjoy our children and husband and family/ friends.
That is another bonus of knowing that you are ‘sick’. It MAKES you slow down and appreciate what is really important in life. Priorities are made more clear.
No one but God knows how long we are here for. That saying ’ One day at a time’ has a greater and new meaning to me.


While I know that everyone is truly concerned and their love for me- the ‘how are you feeling?’ gets old. I get tired of saying ‘okay, just my leg hurts’ or’ nausea today’ etc.

I also wish the doctors were more friendly. You would think they would be more so, but not necessarily the case.

If anyone knows of a 41 year old or any age with mRcc, please let me know. I am a rare case apparently. Lucky me! :(

May God continue to bless you and all of those on this board and touched with this monster of disease invading our bodies.

Have a good night!! smile

Posted by Inge Scott | June 21, 2013 2:02 PM

I was diagnosed with Stage 4 rectal cancer. I am cancer free 2 years now. You are right about everything you said. I volunteer with a man who is 10 years cancer free from Stage 4 melanoma. I decided to start a blog…rectalcancermyass.com/ to help those diagnosed with cancer. Medicine has come a long way baby! Happy to hear you are cancer free and sharing your story of hope.
Namaste!  Inge

Posted by Rick | June 21, 2013 8:33 PM

it amazes me how some people with this terrible thing called cancer can hide their feelings and emotions so well.
My wife is a prime example. She has stage 4 metastatic melanoma and those people that don’t know she has it untill they are told she does are so amazed at her. She doesn’t let it keep her down hardly ever. she does everything most people do plus more. matter of fact, after she broke her back in 2000 and the dr said she would never walk again, she proved him wrong by walking out of the hospital. Then in 2008 after going threw breast cancer she would drive to the clinic about 40 miles away to get her radiation treatments then come back to work with me wirering and plumbing houses. then in 2010 she got melanoma. she did retire from working but it didn;t stop her from working out in the yard doing her gardening and all the other things she did inside. like dishes, washing clothes, mopping, dusting, (Housework in general) I know shes in alot of pain most of the time, but it doesnt stop her from what she wants to do or feels like she should do.
she got a tummer in her brain about a year after her IL2 treatment. she had it removed and the day she came home the first thing she did was go weed her garden and walk around to see how every thing was growing lol, she bumped her head a couple times where she had surgury too. but it didnt stop her from doing what she wanted to do. My wife is the toughest and strongest woman I have ever met.
I know some people that whine and moan over every little thing, but not my wife, I think she;s really superwpman lol, or maybe the 6 million dollar woman. She is pretty close to that actually lol. after all the hospital bills from cancer and breaking her back. Heck!!!!!!!!!!!! I bet I even complain about my aches and pains more than she does lol.
The thing I really wanted to get across is this. We are who we are and if we end up with Cancer its just another part of our journey in life. we all hate it and wouldn’t wish it on our worst enemy. If we sit in a dark hole and dwell on it that won;t take it away. It won’t make our life any easier either. We can die from this disease, But we can get hit by a car or struck by lightening too and die. Its a fact, each and everyone of us are going to die some day. Nobody wants to hear about death I know. But we cant stop living because we have cancer either.
Trust in Jesus, live your life like theres no tomorrow, but love like there will never be an end to life.
I pray for each and everyone of yous that are going threw this in your life. Don’t let life get ya down. Enjoy it the best ya can. May the Lord bless yas and protect byas and make you as happy as you can be.

Posted by Scott Land | June 29, 2013 9:33 PM

Excellent article. I think all of us stage IV’s have had to deal with this. We run the gamet of emotions while battling this horrid disease. I find that it is very therapeutic to write about what I’m going through. I tend to deal with this as I deal with anything else…with humor. Laughter is a powerful medicine. If you can laugh in the face of death, you’ve won the war even if the battle is lost.

God speed and may God bless you.
Scott Land
http://scottscancerjournal.wordpress.com

Posted by ThereseD | November 06, 2013 1:44 PM

I have stage IV breast cancet and over the past two years have had complications.  Doing OK at the moment.  Have been shifting focus to living joyously. This is working better than the anxious how long do I have.

Posted by Amy | November 07, 2013 8:00 PM

As another Stage 4’er, I thank you for this blog post, even though it’s several months old.  I am in weekly chemotherapy (tomorrow is #15), my hair thinned so much that I finally had it all buzzed off last week, and i still hope.  I know there isn’t a cure when you’re stage 4/metastatic, but my goal is 3 good years, to see both of my children graduate college.
and you’re right… people don’t know what to say.  so they say nothing.  and it makes for a very lonely existence.
i’ll keep you in my thoughts, that you have as much healthy time, pain free, as possible.

Posted by HeatherAnn | January 03, 2014 2:14 AM

Hi I am living with stage 4 breast cancer. I used a modality called Psych-K over the past couple of years. You can listen to the founder Rob Williams on YouTube. It is fantastic as not only do you get clarity on how you want your life to be you also get to tune into your body and get the message from the disease. I sorted out many issues. I’m still on the road to realising my dreams. I know that if I hadn’t tuned into the messages from my body, if you think of the disease as a means that the subconscious can communicate with us, I wouldn’t be here writing this. It’s not about one treatment being better than another - it’s about finding out your individual needs and life path. Cancer is a very individual thing so it makes sense. I know how tough this diagnosis is. My children were young at the time. At the fist diagnosis of breast cancer I was already stage 4. I’ve been through aggressive chemo and radiation and also ‘alternative’ holistic treatments. I was close to God prior to this experience however feel that what ever happens that it is according to a perfect plan. We don’t know why some of us have this cross to bear. We don’t know why some of us are taken from this realm on earth earlier than others. Faith has helped me a lot as I feel no matter what happens that I am part of His plan in some way, even though I don’t understand it fully. Has anybody tried EFT? It is a system of tapping on acupuncture points on the body, It can change the energy around emotions and thoughts. It’s helpful as thoughts send chemicals into each cell and we want to keep those chemicals has health-building ones - not damaging ones such as cortisol. Yes - i agree with one post above where the wry sense of humour enables us to laugh at the macabre - even though it is seen as negativity by some! The case-worker who said that really doesn’t understand. I think it’s brave to create a humour around this. We are all going to die so instead of living in fear those of us with stage 4 have to come to terms with it realistically… even if we can find a cure - we are still going to face that last breath one day! Has anyone heard of ‘epigeneitcs’? It’s a new form of biology taught by science guru Bruce Lipton. He explains that WE control our genes rather than the genes controlling us. We don’t have to be ‘victims’ of genetic traits. VERY interesting idea - when I learnt about it my whole concept of cancer changed. That was nearly 3 years ago. Thanks for the blog. I’m in the throes of starting my own one.

Posted by Heather Morella | January 07, 2014 9:12 PM

I appreciated your comments on stage 4 cancer. I have bladder cancer and it rapidly went to stage 4. I have never felt so isolated and when I needed friends they ran away. Even obtaining resources I was told no funding, you don’t have the popular cancer. As a nurse I always tried to help and listen to my patients concerns, but unless you have family and a big support system, you fall on deaf ears. All patients going through treatment need support and not treated as a statistic. I realize my treatment is palliative and have made it a point to spread the word about research and funding for a disease,that was considered an old man disease. It is frustrating when the media doesn’t want to cover it unless your famous. I will keep on using you tube to educate. I wish all best of health and god bless. Heather morella

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