Here is another outward-focused cancer blog.  This one has the courage to look outside national boundaries.  Cancer affects everyone everywhere.  I have seen and talked with its victims in many areas of the world – Latin America, Europe, the Middle East, and Asia.  Terri Wingham has written a book.  She also writes her blog, A Fresh Chapter

“It’s the possibility of having a dream come true that makes life interesting, he thought, as he looked again at the position of the sun and hurried his pace.” – One of my favourite quotes from The Alchemist by Paulo Coelho.

This morning I woke up after an incredibly vivid dream. So vivid, I could swear that right now, sitting at my laptop in my sweatpants is a dream and last night, meeting Oprah for the first time and telling her about my new Big Hairy Audacious Dream was real….

For those of you who have followed A Fresh Chapter for awhile, you know cancer turned me from a pragmatic realist into a dreamer. In my old life, I wrapped my fingers, like the sucking tentacles of an octopus, around anything I thought could control. I thought if I could work 60-80 hours a week, juggle my schedule to try to make other people happy, and earn a six figure salary by the time I turned 30, someone would give me the key to a mystical place where my worries would disappear and I could finally relax.

Then, October 27, 2009 arrived and as I sat on a scratchy purple couch outside the doors of one of the cavernous conference rooms at the Vancouver Convention Center, a doctor’s voicemail pried the fingers of control open and I watched life as I knew it, slip right through.

Some of you know the rest of the story…18 months of treatment including 3 surgeries, 4 round of chemotherapy, baldness, a flat chest, hot flashes, depression, and disillusionment….what a ride. But, then…on New Years Day of this year, the heavy fog surrounding my heart lifted and for the first time ever, I listened to the Hell Yes in my gut and came up with a crazy dream to go to Africa.

With your support, I raised the money to participate in a six week volunteer program in the Townships of Cape Town. Some of you came along as I crashed into love with a group of mischievous 1-3 year olds, met women my age who had lost entire families to AIDS, and saw more joy on the faces of people who struggled to provide their families with the basic necessities of life, then I ever felt when I earned my six figure income.

Now, it’s time to share my next dream with you, but before I do, I want to ask you what your dream is? It doesn’t have to be a massive, change the world kind of dream. It could be anything…maybe it’s a dream of running your first 10km, or going to a yoga retreat in Thailand, or saving to buy your first home. What would happen if you started to tell people about your dream?

If you have visited the My Story page on this site, you have read my (still unanswered) email to Oprah and know about the book I am sweating through writing. But, today, I want to tell you about a different dream, a MUCH bigger dream that might involve you or someone you know. If I can just get past the anxiety building in my chest and string letters into sentences so I can share it with you, I know I will get one step closer to making it a reality.

I can hear you saying, as you think of all of the other things you need to do today, “C’mon already….what’s the dream?”

So, here it is.

I want to start a not for profit organization to help other cancer survivors volunteer internationally. If you have a few moments, please come visit my new page entitled My Big Dream where I tell you more about why I think this experience might heal other survivors in the way it healed me.

I would love to hear your thoughts, positive or negative, about this idea because I don’t pretend to know what will work for everyone. Each of us who have faced cancer have handled the experience in our own way and come through it with a different perspective about what we need to move forward. This idea is still a red faced, naked, newborn baby and I know your input will help shape it through the sleepless nights and dirty diapers of its infancy…

In order to start making this dream a reality, I am officially giving up my apartment in Vancouver on September 30th, lending or giving away almost all of my worldly possessions and packing my bags for a trip around the world. As I write these words, the old me wants to drop-kick the new me and wrap my arms around everything I own and refuse to let go.

But,  every time I feel the old tightness of fear clamp down on my chest, I look at Mark Twain’s quote, written on a card, and stuck to my fridge: Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines! Sail away from the safe harbour! Catch the trade winds in your sails! Explore! Dream! Discover!

I’m not suggesting that all of us should quit our jobs and travel the world in the hopes of starting a not for profit. But, I would love to bring you with me as I figure out a way to partner with a volunteer organization and then raise awareness for this new venture by traveling the world, volunteering in Asia, Africa, and maybe even South America and then putting the structure in place to help other people dream big, post-cancer, reinvent your life kind of dreams.

So, what do you think? I know as soon as I press publish, my mind will want to jump on the hamster wheel of my Hell Yes post. So, if you’re feeling ballsy and want to join me on my limb, I dare you to share one of your dreams in the comments section of this post. Or, send me an email to share some of your fears about a change you are about to make in your life. Perhaps together, we can support each other to sail away from the safe harbour! Besides, last night in my dream, Oprah told me how fantastic the idea was and how much she would like to support it…so I am telling myself to C.T.F.O. because you never know where your dreams might lead.

If you want to get involved or have any ideas around shaping this not for profit, please email me. I would LOVE your support and to hear your feedback. I have no idea how to make this happen, but recent events in my life have taught me that Courage is Not the Absence of Fear and if I dream a big dream, anything is possible.

~ from A Fresh Chapter

Lori Marx-Rubiner, MA, MSW, describes herself as a Breast Cancer Coach/Advocate.  She has started a new blog that combines her personal and professional roles.  This particular post was written by her son Zach. – regrounding | of chemo, cancer and red, red wine

Surviving Someone Else’s Cancer

I have been reading a lot about the recent book “The Emperor of Maladies: a Biography of Cancer.”  Then I ran across this new breast cancer blog The Cancer Culture Chronicles.  I like the take Anna Rachnel, the blogger, develops around the book.  She is also an exceptional writer.

Is Cancer The New Normal ?

I’m on a lovely vacation this week and have been catching up on all of my reading, sun worshipping (yes,yes..with SPF70) and partying like it’s 1985. Well what’s a girl to do when she’s on a little break from treatment as she ponders the next step ? Drink a lot of mojitos and spend a lot of time not actually making a decision about what to do next. But that’s the subject of another post soon to come. So let’s get back to this one.

I was reading an excellent book review entitled “Cancer World” by Steven Shapin in The New Yorker of “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee. A very comprehensive and well-written review and I highly recommend you read it. After you have read this post, obviously. But it was Shapin’s last paragraph that really struck me and got my old brain ticking over. He writes:

“….”Cancer,……is my new normal”. A world in which cancer is normalized as a manageable chronic condition would be a wonderful thing, but a risk-factor world in which we all think of ourselves as precancerous would not. It might decrease the incidence of some forms of malignancy while hugely increasing the numbers of healthy people under medical treatment. It would be a strange victory in which the price to be paid for checking the spread of cancer through the body is its uncontrolled spread through the culture.”

Well dear readers, I don’t know about you, but it already feels like this has happened in the world of breast cancer. So many times I hear breast cancer being talked of as though it’s a chronic disease (even though the dirty little secret is that it isn’t) and the pervasive culture that exists around breast cancer is one that seems to promote normalization with the unintended consequence of desensitizing the masses to the seriousness of the disease. The hope for a cure or prevention entirely is shrouded by the vagaries of yet more “awareness” campaigns and more incremental drugs whose success is judged on how much time they buy, not eradication.

And certainly in breast cancer parlance I hear a lot of talk about the “new normal” and the importance of finding your “new normal”. You can find plenty of information on this topic by simply running an Internet search. Now quite frankly, most of the websites that I found covering this particular topic are of the type that make me feel like I’m sitting in a darkened room on a floor-ful of sequined cushions listening to a New Age therapist with flowing grey hair named Dandelion making ohm-like soothing noises whilst simultaneously cleansing my aura and negative cancerous energy with her toolkit of polished rocks masquerading as healing crystals.

Apparently, according to an example of a Dandelionesque website……

“The search for what is your “new” normal is the culmination of your breast cancer experience. It can define your identity and the path you take on your journey to recovery. It becomes a chance for you to make some choices and take charge of how your life goes while you’re in the recovery process.”

Pardon me, but this almost sounds like something I’d want to buy tickets to. And invite my friend Deidra who’s always looking for new positive life-affirming experiences.

But then Dandelion’s tone takes on a slightly more ominous tone. Ah yes, the metastatic breast cancer “survivor”. Not much to be said for these poor unfortunates except this:

“However, if you are a survivor living with metastatic breast cancer, “new” normal has a whole other meaning. It’s about adjusting to living with cancer every day, managing your ongoing treatment and maintaining your quality of life. And, unfortunately, a “new” normal in this case isn’t always as positive as it is for a survivor who has completed treatment.”

Quite right Dandelion, metastatic breast cancer does suck, (this is exactly what Dandelion said but I said it much more succinctly), but please just remind me again, what is it that we have survived ? And should we really be even trying to apply the term “normal” to the ordeal of living with metastatic cancer, Dandelion ? Because let’s face it, there’s nothing about it that even resembles a little bit about what I remember as being normal. But hey, if it makes everyone else feel better then go right ahead.

After trying valiantly to convince herself that the experience of living and coping with metastatic breast cancer can be magically transformed into normalcy, Dandelion starts feeling a major downer coming on. And so she reaches for the uppers. In this case her drug of choice is the intertwining of the “new normal” and “survivor identity” concepts.

After snorting her feel-good cocktail of cancer cliche’, Dandelion leaves us with this uplifting thought:

“Defining your “new” normal and your survivor identity are synonymous. They both can open up a world of opportunities if you embrace it.”

Really Dandelion ? A world of opportunities ? Embrace it ? Let me just think on that a little more as I embark on yet another round of questionable chemotherapy, contemplate being bald and sick for the rest of my life, and am left wondering what happened to my world of opportunities after breast cancer rudely barged into my life.

But seriously Dandelion. Let me just say this. There is nothing new or normal about having cancer. And we better start embracing this notion very soon, or I fear the result as predicted by Shapin’s book review. That cancer just becomes an acceptable part of our culture. And that’s not my idea of normal.

~ The Cancer Culture Chronicles

The disability folks at Unum are really serious.  In the mail yesterday I got a heavy packet of material from them.  They say they will be requesting information from five additional physicians that I see – urologist, ENT, primary care physician, and dermatologist.  I am not sure that anyone but my eye doctor (and my transplant doctors) can offer an opinion regarding my disability (I have acquired monocular vision, i.e. I lost sight in one eye due to infection).

The also need for me to fill out a “Work Experience & Education Questionnaire”.  It asks me to list job experience,  degree of education, and formal computer training.  This is pretty self-explanatory.  Since it asked about specific types of nursing experience I have had, the questionnaire seemed customized to my situation.  But, if that is the case, I’m not sure about the intent of the question asking do I “have any experience in home or door-to-door sales of products and services such as kitchenware, vacuum cleaners, cosmetics, computer technical supports, etc.?” Are they planning my next career?

Next is a Consent for Release of Information from the Social Security Administration.  Half my disability payments come from the government, half from the insurance company.

Then there is a Description of Daily Activities with spaces for the number of hours per day and per week for each activity.  Part II of this is a handy seven-day log.  I fill in my activities according to the time of day: early morning, late morning, early afternoon, late afternoon, early evening, and late evening.  The emphasis seems to be on what I can do rather than what I cannot.

Part of the four-page cover letter are lengthy explanations of legal and contractual definitions.  I am still trying to figure out indexed monthly earnings.

All in all this is pretty educational.  I have answered disability questionnaires dutifully and truthfully before, but never with so much attention to detail.  I now remember an Unum represesentative telling me some years ago that the company encouraged me to explore even small, part-time employment much like, I suppose, my present job at the wine shop.  The folks at Unum were anxious to see me succeed.  I guess my measured success at working three 3-hour stints at a wine bar has motivated Unum to put even more energy into helping me reach my full potential.

If you check out comments on my “Bits…” post last week, you can see that other cancer survivors have had experiences with Unum.  If you have your own story about disability or disability issues, please comment below.  I’ll keep you posted.