Diana Raab

Following up on our interview Monday, today you can read Diana Raab’s thoughts on the healing effects of writing.  During her career she has shared these ideas with people enduring a variety of life’s challenges, not just with cancer.  As you know, Being Cancer Network rests on the premise that writing, particularly in a blog format, promotes both a degree of self-healing but also, as a consequence of its shared nature, contributes towards the healing of  other cancer survivors and their loved ones.  If you are interested in hearing more about Diana Raab, you can visit her website Learn more about author Diana Raab, author of Regina’s Closet. From here you can link to her writing blog.

How Writing Heals

When life takes an unexpected turn, writing can be a beneficial form of release from stress, due to either emotional or physical factors. Writing grounds you and gives you a reality check. It brings you face-to-face with your own truths, and in the end, it is the truth which will set you free from pain.
From a physical standpoint studies have shown that therapeutic writing, such as journaling, can decease anxiety and the incidence of depression and can also increase your immune response.
Journaling has saved my life on many occasions. The first time was at the age of ten when my mother gave me a journal to help me cope with the loss of my grandmother. I poured my grief onto the pages of my journal. Writing then helped me navigate through a difficult adolescence and then years later, a high-risk pregnancy. Eventually that last journal evolved into a self-help book for other women also having difficult pregnancies. The book has recently been updated and is now called, Your High Risk Pregnancy: A Practical and Supportive Guide. And, my most recent book, a self-help memoir, Healing With Words: A Writer’s Cancer Journey is a self-help memoir which also began on the pages of my journal.
Many famous writers, such as May Sarton and Anaïs Nin have used their journals to pull them through difficult times. In her book, Recovering, May Sarton chronicles her battles with depression and cancer. Anaïs Nin used her journals to write to her deranged father who left the family when she was young. In Nin’s case, her journal entries became a springboard for a four-volume collection of her diaries.
Writing provides an opportunity to vent both small and large issues, from problems with your boss to the death of a loved one. It takes a great deal of energy to be angry at someone; it’s much healthier to drop it, as one would a suitcase full of trash. If you must express your feelings, better to do so first on the pages of your journal. My attitude is: “Direct the rage to the page.” Then you can see about talking with someone you are angry with.
By writing down our fears and concerns it forces us to release them. Once we are able to let go, it’s easier to gravitate to the joys in life.  In addition, the act of moving the pen across the page can be meditative.
At an Associated Writing Conference a few years ago, Dr. James Pennebaker, the author of Writing to Heal said, “Writing dissolves some of the barriers between you and others. If you write, it’s easier to communicate with others.” He does have one rule that he calls, “the flip out rule,” which proclaims that if you get too upset when writing, then simply stop. Pennebaker believes that there’s a certain type of writing which erupts when we’re faced with loss, death, abuse, depression and trauma.
Learning to open up about issues from your past and present lives doesn’t happen over night, but it’s all a part of the healing process. Author Louise DeSalvo, also advocates writing for healing, began writing her own memoirs, Vertigo and Breathless as a result of coming to grips with her own pain.
Whether you’re affected by change, loss or illness, finding the time to write is critical to your healing process. Some people prefer to journal about their experience, while others may lean toward fiction or poetry to help them escape their own realities. Whatever your choice, once you try it, you’ll see that writing, in any form, can be healthy and empowering.

Good reasons to keep a journal

To discover about yourself
To vent frustrations and express joy
To record and remember events
To fine one’s purpose
To plan for the future
To tap into your intuition
To build self-confidence
To allow self-expression
To uncover secrets
To improve communication skills
To improve mental health

10 Tips on Writing For Healing

Find a quiet uninterrupted time and place to write

Choose an inspiring notebook and pen

Create a centering ritual (light a candle, meditate, play music, stretch)

Breath deeply

Put aside your inner critic

Date your entry

Begin by writing your feelings and sensations

Write nonstop for 15-20 minutes

Save what you have written

Write regularly

Last month I was contacted by a representative from the website WOW – Women On Writing ( WOW! Women On Writing Issue 40: The Fiction Writer’s Toolkit.)  She wrote to inquire if I was interested in interviewing the author of a new book on breast cancer by Diana Raab.  Before she turned to writing and teaching writing, Diana was a nurse.  Her passion has always been journaling.  Her professional focus has been to champion the healing attributes of writing.  Healing With Words: A Writer’s Cancer Journey is the story of her successful battle with breast cancer in 2001 and her diagnosis, five years later, with mutiple myeloma.

Today you can read my interview with Diana.  Wednesday will feature an essay by her entitled “How Writing Heals”.  On Friday I will publish my own review of her book.  In the future I will try to incorporate more interviews with persons transformed by cancer.

Having been a nurse for over 20 years myself, I know that the experience of nursing has caused my own life to intersect at critical moments in the lives of my patients.  I was wondering how your own background as a healer and as witness to human courage and suffering informed your experience as a cancer patient?

I could probably write an entire article on this subject, but the most important thing I learned was to take one day at a time and to live in the moment. I also learned about the mind-body connection and the importance of keeping a positive attitude.

Perhaps the most unique aspect of your memoir was your invitation to readers to recount their own illness experiences on paper.  How did you formulate the idea for reader interaction and what kind of feedback have you received?

As a journaling instructor and nurse, it was simply intuitive for me to make this a self-help memoir. I have received very favorable feedback in regards to the journaling prompts at the end of each chapter as well as the appendices which offer kick-start ideas on journaling.

It was perhaps inevitable in this internet era of personal blogs that cancer (as well as victims of other illnesses) survivors would begin to share opening with the world the tale of their ordeal and reflections on how it has affected their life.  My own blog, Being Cancer Network has catalogued almost 1000 personal cancer blogs.  What observations might you offer regarding this phenomenon, both from the viewpoint of a fellow cancer traveler and of a proponent of the idea of journaling?

Perhaps with cancer more than with other chronic illnesses, the experience is frequently transformative.  How are you a different person today from having had two primary cancers in your lifetime?

Being diagnosed with cancer is a riveting event. It makes you realize not only the fragility of life but the value of it. After receiving a cancer diagnosis, you tend to view life differently. One thing I realized is that in order to maintain my health it was necessary to remove all toxic persons from my life. I only wanted to surround myself with those who make me feel good about myself and those who keep my spirits up. As much as possible, I have removed myself from those who bring me down.
As I said in the last chapter of my book, “There is no doubt that having been diagnosed with two cancers in eight years has cast a new light on my life. My goal is not to let these health issues control how I live, but rather to allow them to add to it. I want to continue being productive and making my loved ones happy and proud. This is a choice that I promise to live up to.”

You have had the benefit of graduate education related to writing.  My own experience in reading the accounts of hundreds of cancer bloggers shows that people from all walks of life and people without the benefit of formal training can often write with extraordinary eloquent and heartfelt candor.  In that context how do you view the process of writing?  and how do you mentor others who might think that they lack the necessary skill to journal?

Writing is a passion like any other passion. When you are passionate about something you are typically good at it. What I tell my students is not to write what sells, but to write what you are passionate about.

I have been writing since the age of ten when my mother gave me my first journal to help me cope with the suicide of my beloved grandmother. Writing has helped me heal through difficult times. The fact that I completed an MFA in Writing was only icing on the cake and a means to make me a stronger writer, but the passion had been there for a long time. Passion cannot be taught nor acquired, I believe you either have a passion for writing and reading or you do not. Journaling is another story. Journaling is typically not for publication, it is for personal reasons. Anyone can journal. Grammar and spelling don’t matter, nor does eloquent writing style. In either case, the more you write and read and pay attention to what you write and read,  the better writer you will become. An analogy would be that just because you enjoy playing basketball, does not necessarily mean that you will be in the NBA.

For those who have difficulty starting to journaling, I offer journaling prompts, some of which are mentioned in Healing With Words.

Many years ago, when I first started nursing, before the time when every other woman under 35 wore a tatoo, back when among men it was just sailors and bikers who sported tatoos, I had an elderly woman patient.  She was on the ICU on ventilator support – she could not talk.  This woman was covered head-to-toe in tatoos.  Her chart said that at a young age she had run away from home.  She had joined a traveling carnival.  A man convinced her that she could make a lot of money as a tatooed lady.  This would have been in the 1930’s.

I always wanted to talk to her about that experience and about her colorful life.  But she died while still on the ventilator.  So I never had the chance.  I still regret that.

I have added more blogs to the lists this week.  Three of them are by family survivors of loved one’s (husband, fathers) that lost their battles with kidney cancer.  What one of them writes in her introduction encapsulates the reason many of us blog, whether about our own struggles or about someone else.

Nicole Onesti writes in Bumps in the Road.  “This blog is medicine for my soul. I like to use it as a tool to keep remembering and talking to my dad.”

See also Beauty for Ashes and Tales of a papa’s girl

Ana Marie continues to write about her father and his year-long battle with kidney cancer. These reflections are from her blog Tales of a papa’s girl

comming home…

i have been home in Ariz. for a few days now…i will be the first to admit i was quite nervous… this is the first time i have been home since my papa passed… i worried about how i would feel being in the house… seeing the sink we spent hours at… seeing his recliner… seeing all of the empty space he left…. while it has been hard it has also been healing.. we have been able to talk about him.. not always accompanied by tears.. we have laughed.. cried.. and shared…
being in his truck was hardest.. it smells like him… like work.. like desert dust…
it doesn’t help that my brother in his masochistic style.. insists on listening to dad’s music at most times…
i have yet to visit the grave site… more apprehension… not knowing how i will react is the hardest part… odd that reacting is the easiest, most natural thing to do…
i have done very well, considering… and i was thinking about it.. more than likely while i was supposed to be listening to someone…i apologize in advance for being a bit spacey, as i have a lot to contemplate… but i digress… i think i have been able to simply feel because he is very much a part of us.. and the house… i know my dad is in paradise.. more than likely cooking fish over a camp fire… but he is here as well.. in the form of memories… my papa wore hats (ball caps) all the time.. and there is at least one hat in every room.. as if he left them there…
i also believe… as many people remark on how well we are doing as a family.. that it is a testament to my papa.. we were not left with hurt feelings, regrets.. ugly memories… he truly left us in tact with beautiful memories and knowing with all our souls that he loved us…
here is hoping i can remember this when i visit his headstone….

“Cynthia Chauhan has compiled an excellent and very readable book of essays on kidney cancer called “Incidental Finding”. The contributors are a mix of researchers and physicians from the Mayo Clinic and kidney cancer survivors who tell their own personal stories. Cynthia is making the book available without charge to kidney cancer survivors/caregivers who request it. A generous contributor is allowing ACKC to distribute the book without charge as well to residents of North America.

Cynthia, as well as being a kidney cancer survivor herself, is a clinical social worker in private practice in Wichita, KS. She has extensive experience as a group worker including support group work with kidney cancer patients. She is a member of a number of professional organizations including being on the Patient Advisory Board of the Coalition of National Cancer Cooperative Groups. She has also published in professional journals.

We thank Cynthia for making her book available to a broad readership. The more knowledge we have about our disease, the better we are able to fight it. The book is dedicated to Steve Dunn, who was the first and most eminent kidney cancer advocate until he died prematurely in 2005, at age 49, from meningitis. Steve was the creator of the CancerGuide website and the ACOR Kidney-ONC listserv.”

If you want a copy of the book, go to  Contact ACKC page and enter your name, address, email, and note “CHAUHAN BOOK”, and allow a couple of weeks for delivery.  (from Action to Cure Kidney Cancer)

Here is an interesting post from a blogger who describes herself as “SWF. 23 years old. BRCA 1 +. I’m looking to open up a dialogue for young people like me.” She discusses her choice of anonyminity as a cancer blogger.  I thought this might be a good topic for discussion.  My own experience is that most of the 900 cancer bloggers listed under Cancer Blogs are open about their identity.  Indeed many blogs are designed specifically to distribute current information about their condition to friends and relatives.  On the other hand, the need for privacy, even in the context of a blog, can be a legitimate concern.  Our anonymous blogger writes at The BRCA Diaries

Who you gonna tell?

So the other day my boyfriend and I are in my apartment entertaining my aunt and cousins, and they see a poster that I happened to receive at the Fox Chase In Our Shoes event. My aunt says, “That’s a great poster, where’d you get it?” I was about to blurt out “Oh, Fox Chase at this BRCA event” but then I realized… SHE DOESN’T KNOW. And I don’t exactly WANT her to know either. So I said something about an event that was for women at high-risk for cancer, thinking that sounded like anyone, and she didn’t question it. My boyfriend on the other hand started to press the issue… saying something about how I got it free because I was speaking at the event… TMI.

So it got me wondering… why NOT tell my aunt? I mean I’ve got this friggin blog out there for all the Internet and their moms to see, and I won’t even tell some of my own family members? I didn’t tell my grandparents either. My immediate answer is that they’re very prying people, and I don’t necessarily want to explain it to them. Also, it might freak my grandparents out… they’re old and decrepit and have their own health problems to worry about. So i’m protecting them, maybe even protecting myself from having to explain the whole thing. Saving my own breath. Maybe not the best reason, but my reason nonetheless for the time being.

I think the issue of who to tell is a hard one. If you want to be an activist, you’re going to have to tell people. You’re making the news public so you can encourage the public to care (which I’m all for, they totally should). But you have to be ready for what that means for you.

And then there are some people you have to tell for the good of your relationship with them. Your husband or serious significant other, for instance. Your parents, probably. Maybe your best friend? You want the support of these people, so you should let them in.

But I think it’s ok to keep it a secret from some others. I don’t think i’m a bad person… maybe a little bit selfish, but it’s where I am right now and I understand that and I’m at peace with it.

Oh… and on the issue of writing a blog, I’m here to connect with others who might share some of my sentiments. Not to publish personal information. And I’d like to think this is a little bit anonymous… I mean I’m not posting pictures of myself (YET) or giving out my address.

Joannah writes of her husband’s battle with kidney cancer and of his passing last March. She writes at Beauty for Ashes

Five Months

Today it’s been five months since Michael went home. I can hardly believe it’s been that long already. Time flies even when you’re not having fun.

Grief is not about time standing still.

Michael is continually in my thoughts as he has been for so many years.

Grief is not about forgetting.

Sometimes I’m still incredulous that this is my reality. How can this be? It doesn’t seem possible.

Grief is not easy to wrap your head around.

I wake up each morning with a bit of anxiety or disappointment that I’m still here, that I’m going to have to live through another day without Michael. It doesn’t last long. I try and take those anxious and disappointed feelings to the Lord in prayer right away.

Grief is not just present in the darkness.

I long to go home myself. Please don’t be distressed about that confession. It is very normal for grieving people to feel that way. I know the number of my days has been determined by the Lord, and I respect that. But I do look forward to the glory of Heaven, being in the presence of the Almighty God, a happy reunion with Michael, and to finally be set free from the troubles of this life. This isn’t all there is, and losing Michael and drawing closer to God have given me a different perspective than I had before.

Grief can help you see what’s eternal.

In the meantime, I do have things I want to experience. Of course, I’d love to get pregnant as a result of this next IVF. There’s nothing more I’d like to do than spend the rest of my life watching Michael’s children grow. I think that would bring a lot of joy back into my life.

Grief can’t keep you from enjoying your future unless you give it the power to do so.

Somewhere on the road

I find it gratifying that Being Cancer still get over a hundred visits a day even when I don’t write new posts for days at a time.  Of course, the most popular feature of this site is the list of personal cancer blogs, my mega-cancer blogroll that has become a unique resource on the web.  This feature takes a lot of time and energy to maintain and build.

So I would like to make a special appeal to blog visitors to help me to build and expand this list.  Please refer me to blogs that are not yet on my list.  The most convenient way might be to copy and paste the URL or web address.  Or else you could just refer me to the blogroll on a particular website.

As the summer winds down, I plan to wind up my efforts to build the Cancer Blogs lists.  My goal is to build past 1000 cancer blogs.  I will probably break the feature down into three or four separate pages to make them easier to navigate, maybe even changing the tabs to reflect on which page a particular cancer can be found – i.e.  Cancer Blogs A – D, E – K, L – O, P – U.

Halfway through the history of this blog, I changed my criteria to include cancer blogs which were no longer active but were still published and accessible.  Blogs can cease to be active due to the death of the blogger, but also because the blogger is in remission and no longer feels the need to blog.  These blogs are still valid and useful as legitimate, honest histories of persons who endured specific episodes of cancer.  Nonetheless, I will strive to include the status of each blog, the date of diagnosis, and the specific sub-type of the cancer.

We are all in this together.  Together we can do things that can’t be done individually.  Take care, Dennis

Back in March of 2004, I walked out of the cancer center where I worked.  I had just found out a week before that my leukemia had returned.  I did not know that this would be my last day as an ‘employed worker’.  I went on medical leave to endure a second round of treatment.  That treatment was successful but we knew that the disease would return, probably sooner than my first 26 month remission.  Again we faced the decision of a bone marrow transplant.  I was two years older now.  Second remissions are harder to achieve as the leukemia cells that survive and sanctuary in the body are the most resistant ones.

I was transplanted in August 2004 with stem cells from my brother, Mark.  The rest is a story of survival from then til now, punctuated by a long series of infections that robbed me of my sense of smell and of vision in my left eye.  Three years on prednisone for GVHD (graft-versus-host disease) left my body weak and vulnerable.  But the important point was that I survived.

I puttered around, developed and discarded various hobbies.  Occasionally I gave presentations for pharmaceutical companies.  I spent time in the hospital two or three times a year and was sick with fevers a half dozen more times each year, spring, summer, winter or fall.

It wasn’t until this spring, after I saw a newspaper ad for part-time sales at a gourmet wine and spirits store, that I seriously considered returning, at least symbolically, to the working world.  The manager agreed to my stipulation that I probably could only work 10-12 hours per week.  I reckoned that it would be good for me to get out in the world on a more regular basis.  Blogging and its ethereal patterns of communication can keep one safely in seclusion.  A few extra bucks would be nice to.

Returning to work has mostly worked out well.  Pouring wine and ringing up whiskey on the cash register are not taxing.  The store has a relaxed atmosphere so it is generally a low stress environment.  My shifts are generally late afternoon to early evening, usually only about three hours long.  My co-workers are friendly and interesting.

My thought was that I could recast myself fairly readily into the role of a gainfully-employed person.  But I discovered that this reinvention of self would necessarily pass through the filter of my altered self, my survivorhood and all the baggage it entailed.  The first week I broke two bottles of wine due to my lapse in peripheral vision and general clumsiness.  The same vision issues show up each time I need to search for a particular bottle among the racks and stacks.  The skill of scanning  items, whether on a grocery store shelf or in a junk drawer, is handicapped by my acquired monocular vision – no depth of field so that things appear flat and do not stand out from the background.

On my first day of work I was instructed to hang around the tasting bar and spend some tasting tasting the wine, beer, and spirits available there.  I needed to begin to develop a descriptive vocabulary and discriminatory palette.  I needed to be able to give personal recommendations, to able to freely throw out suggestive terms.  The store’s recent newsletter contains phrases like”the nose is full of leather and sherry notes…Lots of chocolate and caramel with a lovely long finish” and “a subtle Reisling with aromas of lime, green apple, apricot, and undertones of fine blossoms.  A distinct play between sweetness and acidity.”  These are the words that afficiandos use to communicate.  They express both the real and perhaps imagined experience.  But viral infections over the past several years diminished my sense of smell and, thus, taste.  So I can tell sweet from sour, harsh from soft, bitter from smooth, but only in the broadest sense.  The subtleties of taste and smell elude me.

I was surprised then that, at least for this particular job, my recently acquired disabilities, afflictions that I normally try to minimize, so obviously hindered my development as a gourmand.  I had only succeeded partially in achieving that longed-for sense of normalcy.  I did not feel so much a normal person with a new job as a slightly disabled one surprised at the struggle to adjust.  This is not to diminish the great pride I felt when I took my check to the bank, physically depositing most while keeping a little cash for myself.

Then, as I have written over the past few weeks,  I was overcome by one of my periodic “viral episodes”.  I had to call in sick two days before I had even been on the job for two months.  I returned for one partial shift but felt weak, short of breath, and dizzy.  On my next scheduled day I had to call in once more.  With my continued hypotension and anemia, when I did finally return to work, it was again in a diminished, half-strength capacity.  One of my fears about returning to work was just this, that I would be chronically sick, calling in, unable to accumulate sick time or other benefits.  Of course with a ten-hour a week schedule I did not expect benefits.

The people at work have been understanding.  My six month evaluation is months off.  My identity as a “sick” person persists, defying any impulse to feel normal again, to feel unscathed.  But such impulses are probably ill-considered.  The message plays over and over in my head that I should feel totally gratified that I am even still alive.  I do, well, perhaps not totally.  Life goes on and that is the singularly important point.  My next shift starts in two hours.  I can only hope that I don’t break anything.