t's funny how things work out sometimes. Yesterday, I was reading Minerva's latest post, where she was debating whether or not to take up an opportunity to spearhead a cancer awareness project. Last night, a similar opportunity fell into my hands--I've been offered an unpaid Health and Wellness columnist position on an up-and-coming e-zine/collaborative blog. And while I'm thrilled about having a new opportunity to tell people about what it's like to have cancer when you're in your early twenties, I'm a bit apprehensive.

I feel that people need to know about what happened to hubby and I--but at the same time, I don't want to contribute to the "survivor worship" mentality that is so prevalent. I don't want our story to become one of those "human courage" crap-stories that downplay the devastation that cancer breeds.

I want no part in the devaluation of other's feelings--the worst thing to me is when someone says, "Oh, well, so-and-so got through this just fine, and you will too." Every person's experience with this disease is unique. Each patient should be allowed to work their own way through the effects of a cancer diagnosis, and their reactions and emotions should be justified by those who support the patient.

And so, while I am so excited about raising cancer and survivorship awareness to a new audience, I have mixed emotions about this new opportunity...

posted by amanda @ 10:00 AM


At 1/18/2006 11:51:00 AM, Blogger coachhope said...

Why not use this to give your perspective & realistic view; maybe that is why they asked you, not because you & hubby are survivors but because you have been honest & sincere in the way you have approached this & not sugarcoated. Surely that is the reason you have been asked

At 1/18/2006 12:39:00 PM, Blogger tablefor4 said...

I totally agree with you "coachhope". They saw something in you that they like, and would like for you to share it with others. I think it's AWESOME.:-)

At 1/18/2006 03:51:00 PM, Blogger Being Made said...

You're honesty and integrity in portraying it when it comes to the realities of cancer are exactly WHY you would be a perfect person to do the column.

If you continue to be as honest as you have been here then I don't think that there's anyway that you could contribute to the devaluing of anyone or any situation. Rather, I think you will be a voice that people will respond to saying, "I feel that too... I thought I was the only one."

That said, if your gut says don't do it, then don't. You have enough on your plate without having to worry about a column that you are feel questionable about.

I think it's AWESOME That you were asked. Congratulations!

At 1/18/2006 05:26:00 PM, Blogger Jeannette said...

I'm with them, Amanda. What you wrote is precisely why you need to do it. Well, if it fits in your schedule and you really want to do it, that is. We need people out there who sell the truth ("sell" was intentional). Everyone wants the Lance Armstrong story, but he's one of a kind. Admirable, yes, but that is not my story or my reality. We need a voice. We need someone to keep it real.

At 1/18/2006 07:39:00 PM, Anonymous your hubby said...

This is such a great thing for you! Your thoughts and opinions have made an impact on many people already. Who knows how many more people you could inspire and give a voice to. You are an incredible woman. Your no BS aproach was one of the many things that kept me going throughout the transplant process. What you have done for me can be just as helpful to others :)

At 1/18/2006 08:12:00 PM, Blogger amanda said...

*tearing up*

now you all know why I do what I do. Eric, you are the best.

Everyone, thanks for your support.

At 1/18/2006 11:50:00 PM, Blogger Jackie said...

comming to this post a little late, but I agree with everyone, it's YOUR view that they want, the positive and negitive, and you need to be the voice to spred the word!

At 1/19/2006 06:50:00 AM, Blogger Sandy said...

I think you just wrote your first column.

The beauty of being a columnist is that you have the power to convey the message you feel needs to come out. Use this opportunity to do exactly what you said here. Educate on what it is patients AND their support system need. People say those useless yet 'meant well' things because they feel they need to say something but don't know what that is. Take this chance to tell them.

Good luck!

At 1/19/2006 12:30:00 PM, Blogger Minerva said...

Wow, Darling, just wow...and I agree with everyone else..You give so much by giving the completely honest opinion...Carry on giving...
but only if you have the energy. ~You and hubby must come first..


At 1/19/2006 12:47:00 PM, Blogger kenju said...

I'll say the same thing to you that I said to Minerva; only you can decide if you are up to the task, if you want to do it, and if you have something valuable to say. Good luck!

Michele sent me.

At 1/19/2006 04:16:00 PM, Anonymous Dalene said...

Your voice of realism is an important one, as there does seem to be a prevalence and pressure of "positivity" to the whole cancer experience. It even carries across the board to include some oncologists treating cancer patients. There is a pressure to have a "positive attitude" and if something goes wrong, it will be placed on the patient's shoulders. A real life example is my own. My first oncologist was a woman, who drove me nuts, and I felt she was not in touch with my reality. I told you about the Lemony Snicket t-shirt incident. Two other significant incidents were: I was scheduled for 8 rounds of chemo. After the second round, I had lost over 30 pounds in 3 weeks, and I had few red blood cells, I was very very sick. Even the oncology team felt that chemo was going to kill me before cancer did. However, my personal oncologist took the opporunity to 'share' with me that this was an unusual reaction to chemo, after all, most of her women patients asked if they were getting any drugs during chemo because they felt no ill effects from the treatment, that ALL her other patients were doing just fine and she had to reassure them they were getting the maximum dose of chemo. She fell short of suggesting my hair loss had something to do with my 'attitude', and good thing, because I was ready to ask why the yellow Mr. Smiley Face, the icon of optimism, has no hair. Then, during the first year of Tamoxifen, I gained over 50 pounds. Once again, my oncologist refused to accept it might be due to the drug, as ALL her other patients lost weight on the same drug. Well, a year after going off Tamoxifen, guess what? I was back to my original weight, and have since learned that the drug does indeed cause weight gain. This went on and on, until I had to be my own best advocate and realize I needed a new oncologist. I believe there is a huge divide between optimism and hope. You have to have hope, and fill your life with that which inspires a sense of hope for your future. I believe the will to live is interwoven with hope. But optimism, the 'positive attitude' I believe does more harm to a cancer patient than not having the 'positive attitude' ever will. Get real, Be real, stay real. There is nothing welcome about cancer, the horrific treatments, the long term after-effects, nothing. As for non-paying work -- depends on what your long-term goals are for your self. Will this help you reach those goals, or is it something off the beaten path of where you want to be down the road. Your journal here is excellent and stands on it's own, and would be more than enough to achieve an awareness of cancer realism. The opportunity in front of you, is more about your future goals. There's my two cents.

At 1/19/2006 08:12:00 PM, Blogger Minerva said...

Could you email me? The link is on my page as I would be interested to see if you have been contacted by the same people I have...


At 1/19/2006 08:34:00 PM, Blogger kontan said...

a decision only you can make. hope is an important factor imo, so is realism. the words of experience may be very helpful.

clicked from michele's

At 1/19/2006 08:48:00 PM, Blogger Joe said...

Very powerful blog. I am sure others can take hope from your family's stories. I am going to add this blog to my links.

Here via Michele.

At 1/20/2006 11:46:00 AM, Anonymous debutaunt said...

Hey Amanda,

Take on what you can. But from my perspective, facing the transplant within a few months, I read stories of devastation and death nearly every day. It is so discouraging. Beyond discouraging. I'm at the point where I just can't handle them. So when I read one bad one like that, I force myself to find at least ONE good one.

You don't sugarcoat it, but it does give me hope and keeps me from being depressed and makes me want to fight as hard as I can.

I love to read stories like yours. They aren't Lance Armstrong, but they do make me see that living is possible. Getting through it is possible. And the power of love. I truly believe in that.

Just my two cents. Much love, Debs

At 1/20/2006 09:45:00 PM, Blogger chronicler said...

Honesty. It's why I come here. Amanda I am a stranger to cancer. I feel compelled to come here and read, becuase I want to know how to respond in the event this disease strikes someone close to me.
Honesty. You keep it real. Do it your way and lift others.

At 1/21/2006 08:37:00 PM, Anonymous ivy said...

I'm here b/c Michelle sent me..
I think you should write about exactly what you just said. Give those exact people a voice that tells them its okay to feel what they are feeling instead of that they are going ot be fine whic seems to be what everyone else is going to tell them.

Good luck in whatever you decide.

At 1/21/2006 08:39:00 PM, Blogger Killired said...

i think this is my first time here.. from michele's of course... but i would say as long as you 'keep it rea' like chronicler said then you will be fine! don sugar coat or make it all sound like peaches n cream! be honest and truthful and it will get you far! good luck! i will book mark you so i remember to come back... since playing michele's game, i think i have a million bookmarks of blogs... not really a million... but close :)

At 1/21/2006 08:41:00 PM, Blogger kenju said...

I read what Dalene said, and though I have no experience in any of it, it sounds good to me.

Michele sent me back, Amanda.

At 1/21/2006 11:00:00 PM, Blogger annie said...

Wow, I really like your realistic attitude.
I only have the experience of my friends, two lived, one died. There comes a point sometimes where it's not at all about courage and surviving, and...I don't know how to put that into words.

My dad also died of cancer, but his case was hopeless from the beginning and we all knew it. (He was older, 62, it was a tiny bit more acceptable.) I would get so pissed off at people who said he could fight it. We didn't even need to hear that.

Anyway, it sounds like you know something about that and I really think you should say it.

At 1/21/2006 11:26:00 PM, Blogger Lisa said...

That is a tough decision.... Follow your heart.

Michele sent me

At 1/22/2006 11:17:00 AM, Blogger Radioactive Jam said...

(Hi) I find myself in complete agreement with your last sentence. This *is* a conundrum, with no universally applicable resolution.

This time last year my wife started treatment for breast cancer. I later wrote several posts about her experience, partly to raise awareness but mainly as a tribute to encourage her. What I wrote might be a "human courage" crap-story to some readers (no offense taken, honest); that's okay. Someday she or I will write a different story - or rather, tell her story in a different way - with an Awareness focus. The current "version" does encourage her so it serves its purpose as far as I'm concerned.

I'm sure you'll find the balance and focus you seek. Looking forward to reading more here, both old and new.


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