Come as You Are: Living in Stage Four
Posted on June 10, 2013, 7:45 AM
Reblooged from Stand Up To Cancer Blog
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……………
Read more by going to… Stand Up To Cancer — Come as You Are: Living in Stage Four.
Watch this Video on A Better Way To Fight Harmful Free Radicals
I red this post and had to repost as it really brought up a bunch of feelings in me.
To Mary Elizabeth Williams I say Great Post! I loved when you talked about feeling invisible. No longer the winner.
I have stage 4 prostate cancer and am getting androgen deprivation therapy. Just recently It started not to work as effectively as it had been after just a year. My oncologist is adding Zytiga and I hope to see my PSAs falling again soon.
She brought up some weird feelings in me. First since I am not skinny or losing my hair people don’t seem to really believe me or get the seriousness of the situation. I am not what a cancer warrior on tv looks like so people are not sure how to handle the news. People who know about prostate cancer know that it is very slow growing and is, relative to other cancers, fairly easy to treat. I happen to be in the 4% bracket of those that get highly aggressive prostate cancer and somehow it traveled into my bones making my cancer stage 4.
I am not looking for pity here, it is just that this article brought up the weird place I seem to find myself in. A kind of weird, will I or won’t I be around for awhile?
I also am very uncomfortable telling people as I always get that really sad face and the big “Awwwww… but your getting better and doing alright? Right?” And I feel like I have to let them off the hook and say yes of course I am doing great and feeling wonderful even though that is not necessarily the truth all the time.
You should see the relief that comes over them. It is uncomfortable to hear that someone is in trouble or in grief.
I have also been around other stage 4 patients and at first I made a mess of it. I once met another guy with my same or at least similar diagnosis (as it turns out no two are exactly the same) and boasted about how my treatment was doing so well that my PSAs were down to an awesome .06! He answered good for you my PSA is a 2.6.
My heart sunk and i felt awful. Some people are fine about things and other just are not and they just don’t want to hear that you are doing better than them so I realized that I had to watch what I said. I have learned to listen first and only answer questions. It really has helped me keep my foot out of my mouth.
On suggestion I can make to many of you. When someone gives you the news of a terminal illness or great loss. Don’t say things like all things heal with time or you just need to keep a good attitude, etc. I have worked with others in grief before and have learned that there is no perfect thing to say to someone. You just have to be there for them.
I also get really bummed out at having to listen to everyone’s advice about my attitude and diet and super treatments I can only get via their network marketing business. I know everyone is just trying to help, but it just puts you in this weird place where you have to let them down with a no thanks or say thanks and possibly lie to them about what your going to do with their information. Remember there is no winning here. I have received some great information from others, but mostly from others that have been in similar circumstances.
A friend that died from Leukemia just before I got diagnosed said to me that he regretted the 3 years he spent in fear and desperation looking for a cure (faith healers, chickens swung over his head, countless herbs supplements and whatever) and wished he had that time back to spend with his family.
All this to say thanks for this post and letting me vent a bit. I have only been dealing with cancer for one year so I am a newbie to the whole ordeal. I word every day at looking at where I want to go and not where I am. I am not sure of my outcome, but I will fight to stick around and try to leave this world a bit better than it was. I will do this by striving to help others, appreciate those who love me, be ever grateful for all my wonderful blessings and by believing in something greater than myself.