My Never-Ending Story

I've been feeling different this past few weeks. Ever since I returned from MDA and saw my local oncologist. First I want to say that the liberation until the end of July feels surreal. Almost as surreal as my first round of cancer treatment. Almost as surreal as the last 4 plus years of my life with stage 4 anal cancer. I mean I am sitting on my deck right now pounding out my emotions on this key board and I can't believe I am alive! This is some crazy shit folks. Who survives this devastating cancer in it's advanced stages. 22%, according to the stats, survive 5 years post diagnosis. Will I be among that number? I don't know because that is just under 10 months away. From where I sit that seems doable, but hell, anything could happen. I could get struck down by lightening by that time or killed in a car wreck or have a stroke or my cancer could come back aggressively and take me. All those things could happen with no regard for my plans, my family's feelings or all the work I have left undone.

Why am I telling you this? I had a meeting to today and, as my usual talkative self, I soon felt like I was subjecting all the attendees to "word vomit". I stopped to apologize several times, but it just kept coming. It was worse than a bad case of the runs or the stomach flu. "This is a never-ending story!" I thought. You know, "The Never-Ending Story". That movie with the flying white dog in it? I probably have it somewhere in a box on VHS tape on a shelf in my basement storage room. Desperation kind of takes over when I feel urgency to get my message of awareness out. My story has gotten so stinking long that it takes 45 minutes to tell the cliff note's version of it and that's without the list of things I am active in right now. Does anybody really care about all the minute details? I don't know. Sometimes I think my story doesn't make sense without them. It's like if I am in a group of people and some of them have read my whole blog since the beginning of it and others haven't read a word. The readers know where I am coming from while the non-readers think I am crazy and are concerned about why I am "disturbed" in this manner. Some, I am quite sure, wonder why I have no shame and others are caught up in wanting to know my story. I can't tell them to just buy my book. First, that's only the half of it now and second, it sounds weird asking anybody to buy anything. 

Is my story getting too long to tell verbally. When I speak I don't tell it at all. I just say I have stage 4 anal cancer. I tell how I moved passed the shame. I tell how I am held in God's grace. I tell how they can help others that have cancer. But the nuts and bolts of my disease and the nitty gritty that got me from point A to today, nope. Who has time? Who cares? I know people care but you know what I am saying. 

Okay, back to the meeting filled with my word vomit. I did say something in all my blabbering that somebody wrote down and asked me about. It is a saying that I use, and use often. It also addressed some of the strange feelings that I am having about my summer of freedom and my urgency to raise awareness. i said "We are all 100% alive right now." Those words were uttered to me by one of my doctors when I was recovering from my first round of treatments and worrying about my cancer coming back. Lamenting about my angst is what I was doing and he said that to me. It changed my very existence and I can almost see when he said it by the tone of my blogs.

Not long ago my daughter showed me "Wordle" and actually used some of my blog posts to demonstrate it. For those who don't know, Wordle is a toy for generating “word clouds” from text that you provide. The clouds give greater prominence to words that appear more frequently in the source text. You can tweak your clouds with different fonts, layouts, and color schemes. The images you create with Wordle are yours to use however you like. You can print them out, or save them to the Wordle gallery to share with your friends. She was thinking it could be fun and useful for me to display my writings. She told me that she had used it on some of my earliest blog entries and they were full of fear and anxiety and then when she applied it to the more current ones they were upbeat and happy. She was almost disturbed at how dark my ramblings were and so was I. I came from that place. That hole. I clawed my way out and stood tall and happy, defiant against my prognosis and the sadness surrounding it. I survived to tell my story...my never-ending story.

 

 

5 people like this post.
Annabelle threw a punch at your cancer.
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May your story continue to be never ending and that you can continue to be 100% alive right now! Love your blogs. Thank you for sharing your life and story with us.
4 people like this comment
:) :) what she said
Thanks Ben!
Querida, that is exactly right - make it a never-ending story, as Cherie says!!! HUGS!
Michele likes this comment
I'm sure Wordle would show my comments from the beginning of my journey until the current time to have changed in the same way. It's hard not to be doom and gloom when you first get that news, but I guess we sort of grow into it, if you will, or learn acceptance. God bless you, Michele. I know your audience can't help but be inspired by your story!
Michele likes this comment
You're truly an inspiration in how far you have come. Enjoy the summer and your loving family.
Michele likes this comment
You are so right----CANCER is a never ending story for all involved. Love reading your posts though and I think all of us feel the same way you do but just can't write it so eloquently. : )
Michele, Betsy like this comment
Happy to hear your story and that you are telling others!
Michele likes this comment
That's a fantastic quote that you shared. I can understand how it changed everything. By passing it along I'm sure it will continue to influence how we think about our experience.
Michele, Michele like this comment
That's the way it is Michele.. It must be you have a calling , within your soul.. maybe in a way to at least be able to say some real good has come out of all this and to make a difference in this world in a way that only you can. My son said when I first finished treatment it was all I talked about.. Hi my name is Sabina and I have just finished treatment for throat cancer. See how I skirt around even saying I had cancer. I am not sure I have even said it. Let's see , I was diagnosed with it, I was treated for it , I am in remission from it.. but I don't remember saying I have it.. as if saying it, like that would be the end of me.. I pick my words wisely, don't want to jinx anything right? I know I would like to curse alot when I think of it, but I just take a deep breath...part of the process .. right? , it doesn't feel like its been 2 years 4 months. Still feels raw to me but both my sons have said they really don't want to hear about it anymore. So I try not to say anything to them. No one knows, that hasn't had this experience, what all the feelings are that go on inside, continually. Each day you have to climb over yourself of any doubt, that it is a great day to be alive and to be grateful and it Really Is... Look at all the good things that have happened and the depth of the human experience that can only be reached by going through all this. You are really inspiring. You do have that really special way of saying things, Your kind of "wordie" smiles.. Michele, I am so happy your 100 percent alive and me too so we can be friends and understand each other and just be ourselves.. I think its going to be a great summer and a story of never ending love ....because when all is said in done that's what really lasts forever... hugs and love and prayers Sabina
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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

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