Kelly & George

“The thing you need to know about me is that I am George Corrigan’s daughter…” So begins this dual-cancer narrative by Kelly Corrigan, a professional writer amd a breast cancer survivor.  In the book she will intertwine the stories of her own cancer as well as her father’s concurrent battle with late-stage cancer.  In reflecting upon cancer memoirs, it is always interesting to note whether the survivor is a writer professionally.  Cancer effects everyone regardless of occupation.  So it bounds to strike writers periodically.  And for someone who engages with the world via writing, writing about cancer is a natural outlet.  I have found that cancer memoirs written by writers are marked by a certain easy eloquence with language.  Expressions are quotable.  Emotions are captured with a certain lightness and precision.

Corrigan sets out to write her tale in the very specific context of being the only daughter of her bigger-then-life father.  In order to do that she chooses to constantly weave the present tale of her battle with cancer with past tales of growing up in the Corrigan household.  While this does much to elucidate how one’s bringing up influences our response to cancer, some readers, anxious to proceed with the cancer part of the narrative, will find these discursions an interruption to the flow of the story.

As we have seen in a number of other cancer books, setting the current battle with cancer in some family context is not uncommon.  In Corrigan’s case her ongoing relationship with her father overshadows her cancer story. In other narratives family history is just part of the setting.  George Corrigan is a natural salesman, a more fulfilled version of Willy Loman (Arthur Miller’s Death of a Salesman).  People gravitate to him.  He dominates the room.  He assigns nicknames not only to his family and friends, but to everyone he daily encounters – waitresses, clerks, and gas station attendants.

“He defined me, as parents do.  Those early characterizations can become the shimmering self-image we embrace or the limited, stifling perception we rail against for a lifetime.  In my case he sees me as I would like to be seen.  In fact, I’m not even sure what’s true about me, since I have always chosen to believe his version.”

The discovery of her lump is casual, as it must be for many breast cancer survivors.  The initial confirmation by a physician and the follow-up guided needle biopsy are also familiar territory.  What doesn’t always get mentioned is the “perverse” wish for a cancer diagnosis, if only to affirm our hypochondria in seeking medical attention.  Equally familiar is the immediate impulse “to take back my perverse thoughts and promise whoever may have heard them that no matter what flashes of curiosity I may have had, I definitely, definitely, don’t want cancer.”

When she first tells her father of her diagnosis, he responds in an affirmative way, “I’m just saying you can do this, Lovet.  You’re special.  I’ve always said it.  You’re a very special girl, that’s all.”

At a recent cancer book club I attend, some members thought that Edward, Kelly’s husband was neglected in the telling of this tale.  The occasional attention he does receive in the narrative is positive.  In a shower scene after Kelly has gone through the public ritual of cutting her hair before it falls out, he tells her “I’m serious … you can do this … you have such a pretty face.” She reples,  “You’re such a good husband, and that is such an important thing to be.”

Next Reading Assignment” Chapters 15-28, to page 187.

Discussion Questions: Continue to focus on relationships.  What are your thoughts on how Kelly responds to her father’s cancer situation?

The Middle Place

cancer

This week I found a pretty funny post dealing with the anxiety and “Murphy’s law” kinds of things that happen before a big follow-up test.  Our guest blogger, Jen, a survivor of primary mediastinal large B-cell non-Hodgkins lymphoma, offers some pointed insight into the experience.  She writes at Jen’s Cancer Fight.  The main post was written last September, the follow-up post at the end was published just last month.  I know you’ll enjoy both – for different reasons.

Surfing the web and just answering email, have led me to new cancer sites.  I would like to share a few with you.  My Life Line. Org is a service similar to Care Pages and Caringbridge. This site is devoted entirely to cancer patients and helping them to set up simple, journal-style blogs.  All of these sites are useful in getting information about your treatment and progress out to friends, family and interested others.  They are also ways to get your feelings and frustrations out.  Starting out one of these mini-blogs is as easy as signing up.  With My Life Line friends can also post messages of love and support.  You can store up to 100 photos on your site, as well as set up a calendar for important events such as surgeries, tests, physician appointments, end of chemo, etc.  Inspirational quotes are provided when you visit your site.  There is also the option of setting up a page to seek financial donations for your treatment, etc.  The home page of My Life Line is well-designed and easy to navigate.  Free cancer support, cancer patient, cancer information, free personal website, caregiver

In researching new links for the blog list this week, I ran across a site in the UK called BT Buddies.  The BT stands for “brain tumor”.  Although this is a UK site, members listed were from the USA, Australia, and New Zealand.  Bt Buddies provides information about high-grade brain tumors, treatment decisions and treatment courses.  Stories of Hope and a book store are also provided.  The section on financial and practical help seemed particularly useful.  This is a site for a group of people that get less attention than other cancers.  It is a cancer that offers very specific challenges for those affected.  About BT Buddies

Last week I received an interesting email from a woman named Susan.  She wrote “I am an oncology nurse and breast cancer survivor. I was diagnosed in 1992 and elected to have a mastectomy and full course of chemotherapy. Out of that experience I created a business to help women experiencing cancer and undergoing chemotherapy and radiation treatment. … We see many women immediately after they have been diagnosed and help them understand there is are wonderful resources for them to meet their new norm.” From her site you can purchase items like skin care products, gentle cleansers, hair alternatives, wigs, turbans, hot flash wear, swim wear and intimate apparel.
You can shop at SusansSpecialNeeds

Another email comes from a woman providentially named Lori Hope.  Lori is a blogger and author of the book Help Me Live – 20 things People with Cancer Want You to Know. I will be reviewing her book in the coming weeks. Meanwhile her book if featured on our Book List under the new “Books By Bloggers” section.  Her blog What Helps.  What Hurts. What Heals is actually a CarePages feature that offers advice, mostly, as in her book, directed at the others in a cancer person’s life.  What Helps. What Hurts. What Heals. – CarePages Check out her book on Amazon Help Me Live: 20 Things People with Cancer Want You to Know

Finally the reading assignment for this month’s Being Cancer Book Club.  “The Middle Place” by Kelly Corrigan.  Read Chapters 1 thru 15, to page 91.  Focus on the author’s relationship with her father.  What are your thoughts?  What did you think about the structure of the book?  How do her relationships with her mother and her husband compare with that with her father?

cancer

Last night I had the opportunity to address a group of breast cancer survivors at their regular support group meeting. (That and the 3-hour season premiere of Lost explains why I am late getting this post up.)  The meeting was held at the cancer center where I used to work.  That alone brought back some strange feelings and memories.  Wandering around the place before the start of the meeting, I encountered several nurses I did not know, asking if they could help me (i.e. “Who are you and why are you wandering around my workplace?”)  How could I adequately explain?  It’s been almost six years.  How could I explain that this was my familiar territory just as it was theirs?  How could I explain that it was just really…what, a few weeks ago, well maybe bit longer?  How could I explain that this was once a place in which I not only earned a paycheck but also the respect of colleagues and the gratitude of patients?  That this had been a home to me.

Maybe it was too long ago.  And now I just missed it so.

But the reason I was there that night was to speak to survivors, another familiar role for me.  The last time I spoke to a group of breast cancer survivors was in Panama City, Panama.  Despite the cultural and language divide, we all were crying the end. Today I would speak about my favorite topic (other than Sophia, Isabel, Gemma and Molly) – cancer blogging.  I passed out six pages of writing by Amber, Alli, Christine, Karen, and Marilou – passages pulled from our Cancer Blogs lists.  My point was that other survivors out there had found their voice.  They had found truth and wisdom, courage and fortitude, and searing honesty whether expressed as fear, anger, despair, gratitude or hope.  Cancer bloggers had found a voice for all of us, resolutely surviving a hundred kinds of cancer.

I think they went away impressed by the writing.  Several times I made the point that these were not professional writers, but only people like us who had discovered a clarity of vision and an eloquence of the pen (or keyboard).

I told them finally that I am planning a new project.  I am working on a book that would be composed of some of the best writing from our community.  The book will attempt to examine this unique 21st century phenomenon of cancer survivors publicly sharing their pain and triumphs.  Who are these people and why to they expose themselves and their cancer experience to the world of unseen doubters, sympathizers and fellow travelers?  This will be a book in which one can share the journey not of a single survivor as in many praiseworthy cancer memoirs, but rather a book offering intimate glimpses of perhaps a hundred different journeys.

Life is a journey, but cancer is one hellavuh ride.  With our blogs we follow one another on our separate journeys.  I have long invited all to follow me on mine.  If any of you are interested in accompanying me on this new book journey, please write.  In each of our own blogging spaces we have found strength.  In pulling together we can be even stronger.

cancer

Updating my blog listings today, I found a thread.  And that thread ran deep.  It led me to a whole cache of blogs by brain tumor survivors. This is a mixed bag of folks as the different diagnoses run the gamut.  The group is also divided between adults as well as children, each group with its specific tumor types.  You might also want to glance at the section to see what I am trying to do to improve the Blog Lists, adding specific diagnoses, date of diagnosis, and other details.

So I thought it would be appropriate to select one of this week’s Guest Posts from the group.  This blogger writes from Canada on her meningioma experience at Taking It In Stride.  In this post she recounts what living the past year with a brain tumor has meant to her and her family.

I know one is supposed to update one’s blog more than say once in three months. I know this. But is seems like I got to the one year anniversary of my craniotomy, and life moved on without all things meningioma constantly on my mind. I guess I was just enjoying having other priorities and a normal life, although for some reason I spent an unhealthy amount of time feeling guilty for having made it to the other side without too much long-term or permanent wear and tear. Unlike many others I’ve come across on various meningioma-related websites, mailing lists and blogs.

However.

It’s a nice feeling, realizing that you no longer think constantly about this horrible mess that happened to you and that you no longer feel like you’re constantly looking over your shoulder, waiting for the friggin’ thing to re-grow or some other horrible thing to happen.

This is not what things were like at the beginning of last year, that’s for sure. Back then, I had just returned to work a few weeks earlier and had just passed the 4 months mark

Things improved as the year went on. I eventually was able to sleep through the night again. My energy levels went from frantic to what was normal for me before I ever began to be affected by the meningioma. I began to obsess about deficits, something I no longer spend a lot of time on. Yes, I can’t smell and sometimes it bothers me (a lot), and yes I have a bald spot – but mainly I’m back to living my life in a way that is probably very similar to how I would have had I never gotten sick. Most importantly, my kids have made it through this mess okay. I cheered the first time I actually forgot one of my monthly surgery ‘anniversaries’ – such a relief to not have all things meningioma front and centre for once! Things were going back to normal, for sure. So much so that I tried, albeit unsuccessfully, to ignore my very first craniotomy anniversary.

Just like everyone else who’s ever had a craniotomy, I also got a dent on my head at some point last year. Not exactly on the scar, but in its vicinity. I still don’t know why this happens, and have heard various theories around it, with the most common being that it’s due to muscles having been damaged or contracted. It doesn’t hurt and seems to be a normal development, so it’s almost like the secret handshake that firmly puts you into the post brain surgery world.

Early recovery was nerve-wrecking, exciting, and slow, very slow – but over the course of the year, the immediate physical and raw emotional aspects started to be replaced by the returning feeling of normalcy. It’s not that I’m feeling 100% normal all the time and never think about this mess anymore. I do and sometimes also worry about future MRIs, but it’s become just one part of my whole life and is no longer that over-arching shadow I can’t get out of. I also still get unpleasant and unexpected reminders that emotionally I’m not entirely past this, but overall, I’m back to living my life. My life that happens to include a meningioma, not my meningioma-ridden life. This was, of course, helped along by having a clear MRI and a very uneventful appointment with my Dr. Hotshot, but probably also by the mere passage of time.

It took a while for us to get back to being the tight little family unit we were before this begun, and especially our little one had problems. But now things are pretty much perfect with us – our eldest sometimes still talks about the time she spent with the grandparents when “Mama was… you know, when she had that meatball in her head”, but matter-of-factly, not upset or freaked out. She seems to have retained some fond memories of the time she spent with her cousins during that time and continues to be much closer with her grandmother than she was before. She’s no longer scared that I might not come back to pick her up from daycare one day and is doing well in JK. The little one no longer is upset when I look after him rather than Papa, and finally got over his reluctance to spend any time at all at his grandparents. He spent the better part of 2009 being scared every time we went to visit them and wouldn’t let his grandmother, the person who cared for him the most in that first horrible month after my surgery, come near him or even look at him. Yet when we went this past Christmas, he was perfectly fine there and no longer cried or came running every time she came near him or tried to talk to him. A return to normal relationships for him, and this, more than anything, makes me happy.

The one thing that I still do think about a lot because I notice it on a daily basis is that my memory is definitely not what it used to be. It started out with word finding issues. Not severe enough to really cause problems, but noticeable to me. That seems to have gotten better recently, but it also has been replaced with not remembering people’s names. Not my friends, family and co-workers, but names of authors I like, news anchors, actors, more distant acquaintances, etc. According to the nice oncologist who facilitated the quality of life focus group in which I participated to help big fancy hospital sort out what exactly happens after skull-base tumours are removed, I am not yet old enough for this to be the normal effects of aging. My hope is that since the word finding troubles seem to be gone, the name finding issues will also resolve themselves. On a similar note, I spent the better part of the year having weird very quick-onset headaches. Sharp shooting pains that never lasted for long, but still brought back reminders of the time immediately prior to diagnosis and then surgery. Fear of recurrence, as well – but these days they happen less frequently and I can go weeks between them, when it used to be daily or at least a few times a week. So at least there’s hope that this is also something that may be temporary. But who knows, this whole recovery process seems to be a bit of a mystery. It goes very differently for everyone, the healing process takes time (and I’ve heard everything from a year to up to 4 years, so I’m not even sure as to how much change I can still expect), and you just don’t know how you’ll end up.

So yes. I now know that there is life past meningioma. It wasn’t always easy to get here and I know I have been lucky, very lucky. But I am here. I am here to see my kids grow up, to be a mother to them. I am here to be a friend and a partner to The Husband. I am here to be a friend, a daughter, a sister. I am here to be… the list could go on and on, but you get the picture. I am here. And not only am I here, I am better than I have been since I first started, unknowingly of course, showing signs of this thing in my head.

Life is good.

from: Taking It In Stride

cancer

Mondays are book days.  Most of the time we feature the Being Cancer Book Club.  I am experimenting with a three-week instead of a four-week format.  But my other task is expanding the Reviews section. Thus today’s offering.  I chose this book because I am adding a Books By Bloggers section to our Book List feature.

The Adventures of Cancer Bitch by Sandi Wisenberg

A person’s response to cancer reflects that person’s personality, their upbringing, and their culture as well as their biology.  These differences are what we find interesting about their stories although it may be the universality of the cancer experience that we hope to discover and, in doing so, find affirmation of our own.  Cancer blogger, Sandi Wisenberg, happens to be a professional writer.  Not all cancer writers are.  She demonstrates her talents easily with phrases like – “It’s the subtlety of it, as cruel as a mean girl’s gossip, almost not there but there.“

Her “Cancer Bitch” reads like someone who has thrown herself open to the experience, emotionally and intellectually buffeted by the currents, recording everything just as it washes over her.  She takes us through the drama of her diagnosis of breast cancer, her mastectomy and aftercare, fussing with drainage tubes and specialty apparel.

“The Adventures of Cancer Bitch” took an atypical route for cancer memoirs.  The tone is very straightforward, cynical at times, whimsical at others.  It is largely an unsentimental telling.  The author does not appeal so directly to our emotions.  Nor does the success of the book depend upon humor.  Indeed the prominent variations found in books about cancer experiences fall into either the “cancer profoundly changed my life for the better” camp or the “I had to laugh so I wouldn’t cry” school.

The author’s strong political convictions prompt her to question the purity of motive of big corporations acting as sponsors for cancer fundraising events, the well-publicized, media-blanketed events that allow everyone to feel good about the ’cause’.  Where do the dollars go?  research into more effective drugs with ever-higher profit margins? or prevention and early detection efforts? or solving the even more politically treacherous questions about what factors of modern life (shampoos, deodorants, food additives) contribute to cancer risk in the first place.  Still…they are raising money to combat the cancer lurking so threateningly in her body. Her political reaction is conflicted.

Later she deals with the issue of pain. “The topic for today is pain and pain – pain that causes weeping and pain that comes from weeping, and how difficult it is to tell the difference between the two.”  And the pain of depression, “soul corroding depression.  The kind of depression where the world seems like a vast desert and there nothing to connect to, to hold onto, that every human in the universe is just a little desperate bucket of misery just going after distraction.  And you carry on a conversation in the midst of this depression, but the conversation is going on in a parallel, pretend world, what’s real is the feeling underneath you can’t shake, that nothing matters.  And you can’t stand it.”

Her anxiety sets in motion a confluence of both suffering and depression.  “Underneath the suffering was psychic pain, which is an entity, but I can deal with an entity, it is better than the erosion created by depression, which is more absent than absence, depression is the oxygen-gulping aridness of the world…So there is no part of you left that can slither its way around and get its interest quickened by an idea or person or mind or glazed Moroccan tiles.  There is no room for beauty … There is only the ash that’s left after a fire, after a long, long rain.”

Everyone deals with cancer in their own way.  The way we respond to the experience of cancer is very much mediated by our character, personality, upbringing, and other important life experiences.  The author has found an original voice to tell her tale.  The author’s unique persona is exemplified by the section near the end of the book titled “An Accounting”.  Many cancer accounts include a “what I have learned” section and “Cancer Bitch” is no exception here.  But even here she avoids sentimentality, hilarity, and “tired inspirational quotes”.  There is real, honest, hard-earned advice here.

“Some people don’t know how to react to a cancer diagnosis and will disappear”  Many fellow travelers have confirmed this to me. “Don’t think about people who died (of cancer)”  Your friends will avoid this topic like the plague, and instead will only remind you of all the people who did well.  “That you can switch oncologists” is advice that some of us could have, should have taken but for our fear.

“That the person with whom you were friendly, who was there when you received the cancer phone call, will be decidedly unempathetic and in the course of a year, will never ask how you are doing.”  This may sound cynical, even anger, but honest it is.  Too often we do not talk about the anger we are feeling because of the cancer.

When I asked her about her “Cancer Bitch” tag, the author told me in an email “it has allowed me to be more arch and sarcastic in my writing, while at the same time being self-critical. This is especially so when I write about Cancer Bitch in the third person.”

“That you prefer medical care by women.” It is certainly easy to imagine that, especially for breast, gynecological, and even prostate cancers, the sex of the practitioner might be relevant in how comfortable we feel.

Though Wisenberg does not try to make humor a theme in her writing, she doesn’t lack a sense of irony.  “That in hospitals they still wake you up to see how you are doing.”  “That you sister will call you after every chemo” suggest both irony and understated gratitude.

The author ends the book with an account of participating in a cancer march.  She suggest that the sponsoring institution might well have a double agenda – not only to honor the survivors but also to advertise its role in combating cancer.  Is this cynical?  Maybe, but having been on the corporate aide of healthcare, I can attest that visibility at such public events is essential to the public relations concerns of healthcare systems.

In her closing paragraph Wisenberg, again in the third person, refers to herself as “a cynical Cancer Bitch.”  She resents the fact that no one at her treating hospital “had done anything to commemorate my last round of chemo.”  But then she imagines that at next year’s march, she might bring all her “chemo escorts” to march beside her.  “It might be meaningful.  It might be festive.”                                        Order from Amazon: The Adventures of Cancer Bitch

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~ Wit, directed by Mike Nichols, starring Emma Thompson, HBO 2001

I was attending an oncology nursing convention the first time I saw this film shortly after its release.  My  best memory of it was that it was the most searingly honest portrayal of a person with cancer that I has ever witnessed outside of hospital.  It was also the most powerfully honest portrayal of a nurse that I had seen in any media.  My recent second viewing only confirmed those impressions.

Wit is based on a play by Margaret Edson who at one time in her life worked as a unit clerk on an oncology ward.  This teleplay was written by Mike Nichols and Emma Thompson, both Academy Award winners.  Ms. Thompson inhabits the role of Vivian Bearing, a British professor of English, specializing in the poetry of John Donne.  Bearing is a brilliant scholar, aloof, and demanding as much of her students as she does of herself.  She is both feared and revered on campus.  Then she gets diagnosed with Stage IV advanced ovarian cancer and is enrolled in a very difficult eight month course of an experimental chemotherapy regimen. She has never married, has never had children, and has accumulated more rivals than friends in her academic career.

Nearly the whole action of the film takes place in hospital.  In transposing the piece from theater to film, the director retains the device of the character speaking directly to the audience in extended monologues.  Though not a properly cinematic device, it works perhaps even better here than on the stage because of the camera’s ability to frame Thompson’s face in close-ups that convincingly capture her deteriorating appearance and her growing desperation.

“Wit” can be defined as a form of intellectual humor.  The monologues demand careful listening, part of their power stemming from erudite puns and other language tricks and paradoxes.  This makes repeated viewings fresh and engaging. Wit is also the basis of style in metaphysical poetry such as Donne’s, a contemporary of Shakespeare.  This “wit’ along with Donne’s obsession with the intersections of love, death, and religion become central to Bearing’s metamorphosis.  Over the course of treatment her health declines.  The tumor shrinks but metastasizes.  She comes to realize that she has devalued love and affection in favor of reason and intellect.

Her doctors are more academic researchers  than dedicated clinicians.  They are drawn to the science rather than the art of healing.  There are certainly oncologists with more empathy and better bedside manner than seen here.  But the portraits are focused rather than exaggerated.  Their determined, exacting approach to science mirrors Professor Bearing’s own approach to literature.  Of all the hospital staff, it is her nurse, Susie Monahan, who most keenly recognizes and respects the humanity of this dying woman’s situation.  Actress Audra McDonald (who would be later cast as a physician in TV’s Gray’s Anatomy) manages to play Susie as an authentic human being without falling to sentimentality or stereotype.  The scene in which she sits on the patient’s bed in the middle of the night, sharing a popsicle, struck me as something I would have done as a nurse.

This is possibly Emma Thompson’s best screen performance.  She is totally convincing as a cancer patient, whether she is enduring intractible nausea and vomiting or hoarsely whispering poetry through a great veil of pain.  Having spent two decades working in hospital, I judge the entire production to be very realistic and true in both form and spirit. Medical procedures, staff interactions, power differentials in the hospital hierarchy, nurses working to advocate for patients are presented as background rather than highlighted as the drama proceeds.  The “Grand Rounds” scene would be funny if it weren’t so sad.  “That was very educational” Bearing says to the camera, “I am learning to suffer.”  The contrast between the necessarily indelicate realism of the resusitation (Code Blue) scene with the ethereal beauty of the ‘runaway rabbit’ scene that precedes it is powerful.  That scene of Bearing’s friend and mentor reading the classic childrens book will bring tears and remain in memory.

Wit” remains one of the very best examples of this genre, perhaps the best “cancer” movie to date. It is brilliantly informative at both an intellectual and emotional level.  I would recommend it to anyone, but especially to anyone close to someone dealing with cancer.  For persons with cancer, watching this film can be an enlightening though painful journey of self-exploration.   ****

Available through local libraries, Netflix, or Blockbuster.  Or buy it through this site.  It’s a keeper.

Purchase from Amazon: Wit

cancer

On Death

Life is a funny thing. I find that it likes to slap us around a little. I suppose that is what we get for taking it too seriously sometimes. Last Friday I was going in to the hospital to find out if my leukemia was in remission or not. Always a fun day. Physically I had felt pretty good for the previous week and I went into the hospital thinking everything was going to be fine.

After enduring the hospital waiting game, which at times can be worse than any disease, I got called in…Being eager as I was to find out how my counts were doing I looked at the sheet. Shit. Hemoglobin was lower than before. My first leukemia, AML, was the type that dropped your hemoglobin (red blood cells). The other counts looked good but my red blood cells, oh no!

The human brain jumps to the worst possible scenarios: “Oh god, AML is back, I am fucked.” and “This cancer is too aggressive, I will be dead in a year…” At the same time though, there was a strong feeling of calm or acceptance. I was afraid of death and I really didn’t want to die when I was going through AML  back in January. I pulled through that though and felt like I was given a second chance at life and I rebuilt my body with care and hard work JUST to find out that cancer was back again. I went through something big though. You see, when the same leukemia returns within a short period of time, it is very aggressive and wants you dead. In my grief and sadness I became comfortable with the idea of death. Then I found out it was a different cancer, a childhood form of cancer (ALL), that has an extremely high remission rate.

I like to believe that life, or the universe, or whatever god you might believe in, they all bring us things we need to grow. In my mind, we come as souls to this planet to learn and ultimately evolve. My mom used to refer to earth as a boarding school for souls. You come here to learn and leave when you are done or if you lose your way. And I find comfort in the belief that souls can return to this world as many times as it takes to achieve the learning. But I’m digressing…

Back to the hospital room – sitting there waiting for the doctor with these fearful thoughts running through my head and a little sadness around the idea of dying. Sadness yes, but not fear. I don’t like the idea of leaving so many good, amazing, and loving friends and family behind. Sure my troubles will be over when I die but what about everyone else? I went through hell when my mom died, it sucked! So a few minutes go by like this and then my doctor passes by and peeks at my blood counts as he’s going to another appointment. I laugh a nervous kind of “I’m fucked” laugh as he pauses. He then says “looks good” and moves on.

Waves of relief rush over me. All that worry, all those fearful thoughts of AML returning, having to go through the intense chemotherapy again and forever, doctors giving up because my disease is too aggressive, so many fearful thoughts all washed away. Ahh, I did it again. I fell into the trap. I forgot to trust!

You see, as I said, life likes to slap us around a little. Where there is potential for fear, one will usually experience it on very intense levels before it has even happened! Then, when it does happen, it is never as bad as you would have thought. In fact it is usually the opposite and you walk away from the experience with new insight or even joy. This is why it is so important to try and keep your mind in the present moment. I won’t go into all the reasons why, Eckhart Tolle writes volumes on it. Keeping your mind in the present helps you avoid so much anxiety, so much negative thinking. It helps you overcome fear.

Along with “being in the now” it is also important to take a non-judgmental attitude towards everything that happens. Try not to view things as bad or good. They are what they are. The “best” things in life can often lead to being considered the most disastrous and at the same time the most “horrible” things in life can become the most beautiful.*

Only 40% of A.L.L. patients survive passed 5 years. And A.L.L. has the highest rate out of all the blood cancers. It is quite possible that I will die in the next few years. Although death does not scare me anymore (it is the big unknown but everyone has to face it some time in their life) I do feel a great deal of grief around possibly leaving so early. In my belief, souls leave when they have learned what they need to learn from that lifetime, or if they have become too caught up in the illusion of life. A soul, especially a soul that has seen many lifetimes, that sets out what it wants to learn and then gets too distracted or scared to accomplish that goal while in a human body, will most likely leave and start again in another form. They are here for the human experience!

What we must always remember, what I must always remember, is that we are always safe. There is really nothing to be afraid of and all spiritual masters know this. Death to me is so unknown. Perhaps we are just purely biological, bunches of moving matter with big brains that one day will cease to move and breathe; lights out, finished. But that is a boring perspective. I prefer the view that in death we transform to our purest, highest evolved self, the soul – the light – the love, and that we return to our source of such warmth and joy as never experienced in a human body. There we can remain or we can choose again to re-enter the playground that is life and incarnate into a beautiful baby. Millions of souls always coming and going, always interacting with one another, bringing each other the experiences we need to grow, to learn, to love. This perspective feels right to me.

On a less morbid note I encourage everyone to always face their fears. Fear is a powerful force that can work against you and possibly leave you crippled but like everything else it is only there to help. Charge headlong into your fear and it will evaporate and leave you feeling so much better and more powerful than before. You will find new passion, ambition and joy for life and in return get a richer and fuller experience. Trust in life. We are always safe!

from: Cancer: A Spiritual Journey

cancer

I found it a little difficult to decide where to go next with tackling our cancer resource list.  So far I have presented the two “mega-cancer” sites – the American Cancer Society and the National Institute of Cancer.  I thought I should diverge a bit to look at a different group of sites.  So I’ll start with breast cancer.  No surprisingly with over 30 sites, it is one of the largest site-specific categories.  Today we’ll review the sites of four different breast cancer organizations.  (photo – Deena Metzger)

Susan G. Komen for the Cure

Susan G. Komen for the Cure seems a good place to begin as it has become perhaps the most visible and vocal organizations dedicated to the fight against breast cancer.  It is clear from the home page that it is primarily an advocacy and fundraising group.  And with multi-shades of pink graphics the focus of the site cannot be mistaken.  Four buttons in the left header allow quick navigation depending on whether you identify yourself as a patient, friend of someone with breast cancer, someone wanting to donate or be an advocate, or someone who just wants to share their story.

Just under the header is a traditional menu with drop-down selections.  The first is entitled “Understanding Breast Cancer” with content that rivals that of ACS and NCI.  In fact the use of illustrations propels it beyond those two sites.  Besides the expected “Diagnosis,”  “Treatment,” “Clinical Trials,” subject areas, the menu will also lead you to an interesting section called “Getting Good Care”.  The “Resources” section is extensive but I was particularly impressed by the “The Questions to Ask the Doctor About Breast Cancer” series that includes 14 topic cards on a variety of breast cancer issues. Each card contains pertinent questions to discuss with your doctor regarding a specific breast cancer topic. You can download and print the cards and bring them with you to your next doctor’s appointment.

The “Get Involved” menu invites visitors to participate in a range of different programs.  It is nice to see a “Research and Grant” section displayed so prominently on the home page.  “ShopKomen.com” allows visitors to demonstrate their loyalty to the cause with a variety of fitness apparel and other gifts and accessories.  The home page is well-designed and balanced graphically, albeit a bit busy.  I almost ended the review without seeing the tiny link to “Message Boards” at the extreme top right of the page.  Clicking the link took me to a very vibrant and active discussion feature with seven general areas of discussion divided further into 25 different topics.

Komen is a major player among healthcare charities.  Their site reflects that level of commitment and professionalism as well as reinvestment of its fundraising successes. Susan G. Komen for the Cure

National Breast Cancer Foundation

The National Breast Cancer Foundation has a more limited mission than Komen, dictated perhaps by its more modest profile in the cancer fundraising community.  The home page design is clearly feminine but with a less overwhelming pink theme.  Dr. Phil offers a video-message on early detection on the opening page.  In fact most contributions are focused on early detection programs including free mammograms.  The site does not have the same visual range of buttons and interactive menus.  Dropping down to the bottom (footer) of the page, you do discover an array of different sections including another on-line video stream, Beyond the Shock, a step-by-step guide to understanding breast cancer, a nice feature for a newly diagnosed visitor perhaps too overwhelmed to do the copious amounts of reading required at other sites.  There are nine different forums for discussion groups with thousands of threads.  The NBCF can be proud of the features offered on their site.  Breast Cancer | Breast Cancer Awareness | National Breast Cancer Foundation

Inflammatory Breast Cancer Research Foundation

A number of Being Cancer Network blogger identify themselves as suffering from inflammatory breast cancer or IBC.  It is fitting that there is an organization devoted to this unique variant.  The IBC Research Foundation does a good job of distinguishing this cancer which is not characterized by a lump in the breast.  The median age of diagnosis is lower than traditional breast cancer. The site is somewhat succinct and focused.  The menu is placed below the header.  Sections are generally one page and include Research, Awareness, Symptoms, and Diagnosed.  There is also a Pictures feature which involves clinical photographs of relevant material.  While not nearly as broad as other programs, there is no need here to spend funds in order to duplicate educational and support efforts that can be offered more effectively  by larger organizations.  The IBCRF has stated out their unique territory with appropriate economy.  The IBC Research Foundation

Sisters Network, Inc – A National African-American Breast Cancer Network

While the IBCRF above addresses the needs of a cancer subset, then Sisters Network provides a similar service to a sometimes disenfranchised minority population.  Even though the overall incidence of breast cancer is lower among black women than white, mortality rates are higher, 5-year survival rates lower, and incidence among woman under 40 is higher.  Further aggressive characteristics of breast cancer appear more often in black woman than in their white counterparts.  Sisters Network offers a number of outreach and assistance programs.  It has 44 local chapters in 22 states.  The site is modest though inclusive in what it needs to cover.  Graphics are attractive and the pink theme subdued.  Navigation is easy from the home page.  A social network is offered in increase the sense of support and sisterhood.  Sisters Network Inc. : A National African American Breast Cancer Survivorship Organization

... dark waters ...

I found out about this blog from friend and fellow “Cancer Warrior” Mel Majoros from a post on Facebook.  (I really need to learn how to use this iconic resource more effectively.)  It is written from the viewpoint of an elderly renal patient’s son and daughter.  As this blogger writes in his introduction, “As he reaches the end of his life, he is denying his current situation and lashing out at the people around him. This is a blog about our experiences with dad and how we are coping with the situation as he approaches the end of his life. We love dad and want what he has said he always wanted: quality time with the family.  However we are at a loss for how to do that given his rage and anger towards us. We hope others that have gone through this situation before and people going through it now will find some solace in our stories and comment on how we can better deal with dad.” I thought that this approach is somewhat unique in our world of precious cancer blogs, not that dysfunctional anger rarely happens but rather people rarely have the courage to write about it. Dealing With Dad