Guilty As Charged

I'm alive. I'm alive and doing well. This is so amazing, right? I mean who, in a million years, would believe this? I have stage 4 anal cancer with mets to the bone and most recently my lung. I have been living with this diagnosis since February 2010. They predicted my life expectancy, given the rare form of cancer and the bone mets to be around 3 years. A forecasted rough 3 years I might add. I didn't feel like I was dying on the day they told me the news and I don't feel like I am dying today, although in the last four years there have been some days I have felt I truly might expire and others where when I was going to sleep I thought it would be nice just to slip away in heavenly peace. I got through those times and have emerged on some unfamiliar shore. I live on "against all odds" survivor island. 

I have managed over the last four years to find others like me. Well, that's not entirely true. I have found others with my rare form of cancer and we have formed a kind of "Virtual" Anal Cancer support group, but there are few like me. Some of the group members have died as we "watched" slipping away from the on-line groups and forums, tweeting and texting less and less until some family member or friend informs the group that they had sucumbed. Others, like me, have had our squamous cell cancer crop up in other parts of our bodies. The support we give each other through it is second to none because so few truly understand. Rare and stigmatized cancers tend to isolate the folks that have them. I say there are few like me because despite my henious diagnosis I have really thrived. I am alive. I am alive and doing well. My virtual support group members are happy for me and I have been cited as beacon of hope for those that traverse the stage 4 anal cancer road. I love interacting with and supporting all those I have come in contact with. Sometimes this crosses cancer lines and I find myself bolstering up someone with lung, breast or colon cancer (which is totally not anal cancer by the way...colon, rectal, anal...all different). I love to do it. 

Oddly, it creates some other emotion in me that is the point of this very blog entry. Guilt. "Why would you feel guilty?" you ask me. The word "why" is at the center of it all. Why me? Why am I doing so well while I know others who have not fared like me? Why have I been able to recover, bounce back, display no evidence of disease with my treatments? I am no more important, special, loved and needed on planet earth as any other that I know with any kind of cancer. I did what the doctors told me, I prayed, I was an advocate for my own care and surrounded myself with the folks that loved me so they could advocate for me on my darkest days of treatment, I tried to stay positive and so have countless others with stage 4 cancer. Yet many of those have had their health spiral down while I stand, having done nothing extra special, strong. Survivors guilt can hang like a heavy harness around me. There are others that don't have cancer that suffer from this guilt. Plane crash survivors must. Car accident, avalanche, earthquake survivors where lives are lost but their life is spared. I am sure they ask "Why me?" throughout their lifetime. Most days I shrug free from it consoling myself with platitudes other days it seems inescapable not only weighing me down but causing me to be petrified of what may be ahead on my journey. My doctors were hugging me and laughing my last visit. Will the next hold grim faces, shaking heads and condolences? I don't want to think like that. It scares me. I refuse to let this beast scare me. I am angry, defiant against my diagnosis. I am sad at the cruelty my cancer can dole out in hefty, overwhelming doses. I work hard to appreciate the joy every moment can bring me, to be happy and stay hopeful. I focus on others. I try to help and support, keep the focus off me because right now I am okay. I need to use my time wisely, right? To do otherwise seems disrespectful to those who are not afforded it. I felt compelled to write it here so others that have the same feelings can be given a voice. Surviving and then thriving is a beautiful thing. Digging in against an opponant and giving it all you've got is a beautiful thing. Saying that enough is enough and relinquishing yourself to peace is a beautiful thing. Today I want you to know that I am alive. I am alive and doing well. Guilty as charged.<strike></strike><strike></strike>

Danean sent you a prayer.
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I am SO happy for you. Are u on a special diet? Happy New Year honey and keep up the good work. You are an inspiration.
No special diet, Laurie. Just try to eat a balance of good for me and fun foods too. Happy new Year to you as well!
Beautifully written! I have found survivor's guilt to be one the hardest emotions I've ever had to deal with. It is compounded by the fact that since I finished my treatment back in September 2008, I have done some things that completely healthy people cannot do, let alone those who are fighting the cancer battle. That defies explanation, IMO, except to say that I think cancer fortifies determination in many who get the diagnosis. A few of my recent feats were accomplished only through sheer will and determination, not because I am SuperWoman. Some people give up, others go on to thrive like never before, knowing that each and every moment is precious, tomorrow is never guaranteed, and it's now or never. Love and hugs!
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My dear Michele. You are a rare spirit, brightening the day of everyone who reads your posts. I am glad to have encountered you. As I said in an earlier message, one of the reasons that your doctors treat you with such happiness is YOU. I think hearing this diagnosis - especially one that is so hard to share, given our national prudishness - brings instant awareness that we are in fact on that final journey every day. We have a choice as to how we spend our time as we travel toward the end, and with help and determination how much time we will have on that road. I am much more aware every day when I awaken of how precious this new day is. And working to support others as you do is part of the answer to survivors guilt. We are here to help others survive and thrive. When we do, we survive and thrive. May you be strong and have a splendid day! XOXO
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I love you Helen...you know that right?
It would be my greatest pleasure to meet you...only for a physical hug. So much can be said and known in cyberspace. Thank you.
You have such a perfect way with words and know exactly how to communicate in a way that encompasses many of our thoughts and feeling but are unable to express them as succinctly as yourself. We are all fighting this battle as best we can and we fear for each other and cheer for each other at every success. You are a real fighter and we fight with you every step of the way. Hugs Annabelle PS Will there be a book 2?
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Yes Annabelle...a second edition and another book as well I think :) Love to you!
Book two! Something to wait for. Again, thank you.
I get it, Michele. My survivor's guilt is the worst when I think about the friends and neighbors I've lost who have young children. I do not have children. Those children have no mommy anymore. Why did they pass and I remain? They were more needed than I am. But the thing is, it's not like there is a set number of those who need to pass. We didn't survive at their expense. We didn't survive *instead* of them. It's a subtle point, but a valuable one to me. I hope it makes sense. I love your two lines about using our time wisely because to do otherwise feels disrespectful to those not afforded it. I agree with that. We need to help others and use our experiences to bolster the hopes of others, and that is exactly what you're doing. Be comforted by that. And know you're making a difference. You really are. Hugs and prayers and love to you, Sweet Lady. Danean
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OH, that is so well said...We did not survive INSTEAD of them. Thank you. It makes ever so much sense.
Michele, I too have been struggling emotionally lately (although I am not NED I am doing extemely well and have surpassed my 2 year prognosis by 2 months now). My dilemia lies more with not why have I survived instead of someone else, I believe it is as random as anything else in the world, but how to get meaning and purpose out of my life and how best to impact others with the time I do have left. The length of life is not guaranteed,but I am finding it most difficult to make decisions and plan for an uncertain future. I have dreams and hopes for my future but like most people they are long term not something that can be easily achieved today or tomorrow but over years. Without knowing, I have no choice but to live day to day and learn to appreciate this new reality. It has not come easily, so I it is a work in process. Always, Maya
Helen Marshall, Porter like this comment
Hugs to you sweet Maya!
We are so happy you are alive! You give hope to so many and your well written words are an inspiration.
Michele likes this comment
Beautifully said. Bravo.
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we are so pleased you are alive and doing well Michelle! keep on keeping on, please
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We are very happy to have you as part of our group. You are an inspiration to us all. Hope you continue to do well. Mari
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Michelle, As always I thank you for sharing your thoughts in your blog posts. They are always right on. I appreciate the hope and the inspiration and the dedication to "fight" on. Thank you! Cathy
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It's just not easy , any of it... but you are so sweet Michele.. take care of you.. and you still have time for others, it's a beautiful world .. especially with you in it.. big hugs and love Sabina
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I truly appreciate your articulation of what everyone feels but finds it tough to express. When I was first diagnosed and began zealously researching what type of cancer I had I was extremely fortunate to first run across your blog. After reading it I was inspired to get through treatment and I continue to be inspired by your posts. I especially love, "To do otherwise seems disrespectful to those who are not afforded it. ". Short, succinct, true! Thank you And I wish you many, many healthy years!
Why thank you Porter!
From the first time I saw "ihavebuttwhat", which made me so less self-conscious 2 years ago, and then saw you on the TV interview, and then read your experiences surmounting my profound fear (stage 4), and now fully living your life with total compassion, I knew you would be and will always be a veritable Sage in my life. You have to love this website, the internet and everything else that made it possible that we could experience you without ever meeting you. You're like a skinny little Buddha.
How kind of you to say that to me! I am glad I am able to help and inspire you...I think I just am writing my truth and hoping that in some small way I am perhaps helping others feel less misunderstood and less alone in their battle. It's my pleasure to know all of you! Hugs to you Linda, Michele
I have to confess Michele, that I read your post in the midst of a pity party, (which thankfully, I have very infrequently). Reading it set me back on track and on a path of gratitude. Embracing gratitude gives me so much joy, and thank you for such a moving post. A pleasure to read everything you write and to know you virtually. Big hug to you!
Michele, Linda like this comment
Glad you are alive! I have been struggling with the wondering why issue a lot with my 14 year old step son with a rare cancer. UGH! Cancer and death My mom- pancreatic age 59, my dad's mom - breast age 35, my mom's dad tumor on brain, age 70 and me at age 49 - but I am not dead YET and neither is Griffin - he is struggling through treatment and I am happy to be enjoying NED for now!
Michele likes this comment
Happy Birthday. Let's see another in a year..
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Happy Birthday for 31st. Have an extra special wonderful day hugs Annabelle xx
Michele likes this comment
Happy Birthday!!
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

Stats

Posts: 145
Photos: 4
Events: 0
Supporters: 214
Friends: 362
Comments:
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