Sorry but I am off schedule again.  Maybe schedules for cancer survivors should not be that important anyway!  I have been very busy this weekend, however, bringing to fruition two projects that are dear to me.  I finally got over the bugs and slugs to launch not only a new feature for Being Cancer Network, but also a whole new sister website.

Diary of an Illness

Soon after my diagnosis in 2001 with what promised to be a terminal leukemia, I began to put my thoughts down on paper, well, virtual paper anyway.  I was driven by two impulses.  First I suddenly found that my rather boring life had changed for the worse.  Almost daily there was now something to write about.  A great drama was slowly unfolding and there was a growing number of people who wanted to hear about it – friends, family, and colleagues worldwide.   So I needed a vehicle to get the daily news out.  This was before the rise of blogs, before Google even.  If Caringbridge and other like illness journaling services were available, I didn’t know about them.

Secondly, with the known world crashing about me (this was just months after 9/11), I felt the strong need to try to make sense of what was happening to me.  I was only 54, my children were just starting to move out and seek their own place in the world, and my career as an oncology nurse had been rich and fulfilling.  I had even been working on a doctoral degree in nursing science.  My grandmother was living with us, still thriving at 104 years old.  And yet I was the one that seemed closest to dying.  Stop the world!  I want to get off! I wrote.

So this urge to explore, to discover and uncover the deeper meanings of what was happening to me merged with the task of informing my small world of acquaintances of my slowly unraveling medical drama.  And what was born of those divergent goals was something new and, for me, unique.  I have always been a quiet person, not given to sharing very much about myself.  In social situations, even family ones, I feel awkward and ill-at-ease.  In gatherings I tend to slink towards a quiet corner.  It was only in the role of a nurse that I blossomed, that I was able to be more fully authentic.

So now I found myself sending into the ether my deepest thoughts, fears, and hopes.  Of course, this was also the time in which I hugged nearly everyone I encountered!  My narrative was sent out in tiny bits and pieces – news and meditations floating out into space.  Next I began to coalesce these offerings into larger, more coherent chunks.  These chunks began to resemble chapters which I sent out not as email text but as attachments to my emails.  By the time I approached my first remission a larger narrative had been woven together.

I was well enough to attend the annual Oncology Nursing Society (ONS) Congress, held that year in Washington, DC.  By that time an idea had been born.  I remember mingling in a crowd of cancer nurses from around the globe, drinking wine and eating gorgeous shrimp.  We were attending a reception at the national headquarters of the Daughters of the American Revolution.  The building breathed with a sense of history.  I was standing just inside the limestone columned portico with it views of the mall.  Everyone was asking details about my health.  I started talking with Pearl Moore, one of the founding members and the executive director of ONS.  I told her about my narrative.  I told her that there seemed to be something of value there based on the feedback I had received over the past months.  My “diary” was something that I wished to share with the wider world of oncology nurses (ONS membership was nearing 25,000 cancer nurses).  Remember that though I was in remission, I felt that I had maybe two years to live if I were lucky.

Pearl introduced me to Len Mafrica.  We discussed my proposal in depth. ONS would agree to publish my journal on their website, in the publications section, as an on-line book.  And there it remained, until last year, when the space was turned over to other material.

I received a number of emails including one from a nursing instructor who had been using it in a course for some years.  They asked me how to access “Diary of an Illness” now and in the future.  By now I had had the rewarding experience of constructing my own website/blog, Being Cancer Network. So I secured the domain name, bought additional space on my server at Laughing Squid in San Francisco, and spent an anxious couple of weeks trying to make the thing work, ably assisted by Jason at Laughing Squid, bringing together files and programs, properly coded, and firing them off across the country with my Fetch FTP (file transfer protocol). Yesterday it all came together.  Launch successful.

In many ways Being Cancer is the child of Diary. In fact you might have read portions of it.  I published bits and pieces of it under the category “Journal”.  I have the first five chapters up and will be working to bring the rest up.  I covers diagnosis through and past my first remission.  And now I have the stimulus to continue the diary to my relapse and on to the great drama of my transplant.  I will keep you posted as new material appears.  In the meantime please visit the site at www.diaryofanillness.com.  Diary of an Illness – A Cancer Nurse Battles a Rare Leukemia

Events Calendar

I have though about adding a cancer Events Calendar for some time.  The trick is identifying events and keeping the whole thing up-to-date.  I finally hit upon a format that just might work, for me and for you.  I divided the calendar into three sections.  The first contains those ongoing, annual observations that we all are familiar with, like National Breast Cancer Awareness month.  The second section is a bit harder to manage.  This will feature meetings, symposiums and programs oriented towards survivors and caregivers.  I will be depending upon you, my readers, to inform me of regional and national events for survivors and caregivers. The last section will list conferences and meetings designed for professionals, physicians, nurses, and social workers.  Abstracts from these meetings, like the annual American Society of Hematologists (ASH), are frequently published at their respective websites.  These can be a source of the latest research and ,consequently, a point of discussion with your healthcare team.  As always I would love to hear what you think.

Book Club discussion will resume tomorrow, closing out Kelly Corrigan’s “The Middle Place”.

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.

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~Upgrades~

This has been a dreary weekend so I spent a lot of time at the computer.  Most of the time I spent working on the blogroll.  First I added a lot of links, mainly under brain cancer, breast cancer, and thyroid cancer.  We are now up to 800 cancer blogs.  The page was getting a bit unwieldy so I divided it roughly in half.  Cancer Blogs I is for brain cancer to kidney cancer blogs.  Cancer Blogs II contain blogs from leukemia to the widows/widowers sections.  I also finally separated out the Hodgkin’s disease blogs and the other (non-Hodgkins) lymphomas.  The two groups have very different demographics.

Now I need to go back through and update each of the 800 sites.  This is going to be a lot of work, one of those labors of love.  But I did feel that maybe now it was okay to install a PayPal Donate button to my site.  No pressure, no guilt.  It’s there is the spirit so moves you.

I also installed some social networking widgets for Google Friend Connect and Networked Blogs.  If you wish to join those, that would be cool too.  I thought it appropriate to add a Blogging With Integrity badge.  A Healthcare Code of Ethics badge should follow shortly.

~Book Club~

Chapter 5 begins with cogent if counter-intuitive advice from Schimmel’s physician “Embrace your cancer!” What he means, of course, is a medical version of the “bring it on” school of advice – understand the cancer, envelope it, grapple and conquer it.

What that means to Schimmel is to embrace other ideas and practices that we might once have thought of as weird, foreign, or too “out there”. This seems common for many victims of cancer.  As Schimmel says, “Try anything. Something you previously considered crazy, harmful or forbidden might just be exactly what you need now….There are no more long shots.  Everything is off the table.  Everything and anything is worth the bet.  Because I have nothing to lose.”

I pause here to inject my editorial opinion that this approach is best considered when added as a supplemental or complimentary adjunct to the medical treatment plan.  Looking for therapies in lieu of accepted medical practices is really gambling with your life.

Schimmel starts with eating a porterhouse steak (he is a vegetarian) moves on to Reiki therapy and then to acupuncture and Transcendental Meditation with a mantra “borrowed” from his mother.  Later he tries a visualization technique that succeeds in bringing  a sense of control to his fractured world.  “I begin to reorder my priorities. I see that all my relationships are shifting and deepening, and I accept that.” An episode of smoking pot leads to panic, to be alleviated by Xanax.  But at least he gains weight.

At the close of the chapter Schimmel shares his previous experience with cancer.  His son, Derek, died of it.  He now describes Derek as an “old soul” – someone with wisdom beyond their years, paid for by the experience of childhood cancer and it treatment.  We saw the same phenomenon at work in the recent movie My Sister’s Keeper. (see “Reviews” in the header above).

Chapter 5, Getting Laid, allows Schimmel in familiar comedic territory.  Some readers may be turned off by the author’s frankness about sex.  But behind this comic bravado lurks  feelings of sexual image as tied to a sense of well being familiar to those with cancer, especially those whose disease or treatment meant disfigurement.

Reading Assignment: Chapters 6 – 8 (finish the book)

Discussion Questions: At the end of any cancer memoir, readers come to admire the books subject.  In light of recent scandal (Google “Robert Schimmel arrest”), how did this news affect your opinion of the author?  Holocaust stories seem to haunt a number of cancer memoirs.  How did the Schimmel family history influence Schimmel’s response to cancer?  Explore your reactions to Robert’s reuniting will Melissa.

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Castle in Cashell

Clinic Visit

Today I had my clinic appointment for transplant follow-up, labs, and, today, a cortisone stimulation test.  I knew the appointment was approaching and I acknowledged to myself yesterday that I was not anxious about it as I usually am.  By yesterday evening my throat was starting to hurt and a head cold seemed to reemerge. Then I started thinking about the successions of flu episodes,  sinus infections, sore throats, and ear aches I have been having over the last months.

Every leukemia patient I have ever known, and I have known hundreds, related to me this very same history – lingering cold and flu symptoms – prior to their diagnosis.  Of course I knew that the overwhelming probability is that my still inefficient, immature immune system was to blame.  But I also that my relapse, if and when it does occur, might resemble this same pattern of recurrent infection.  But my counts cam back okay – normal albeit low-normal, but normal just the same.  So my anxiety has subsided, at least for another three months (a record by the way, if I can keep it).

AMAS Test

I received another odd email inquiry.  The writer asked “it is possible … to get a post about an innovative aid in early cancer detection and follow-up: the AMAS test.

Even though the test has existed for over a decade, many people don’t know about it. I would like to start spreading the word around.

The principle is simple: the test measures the level of a specific antibody (the Anti-Malignin Antibody) in a blood sample. The antibody would be elevated regardless of the location and cell type of the malignancy. It is used by many doctors to increase the accuracy of other standard tests (MRI, PSA, CA125, or mammograms); and as a follow-up tool for recurrences.

Many studies have been done over the last 20 years supporting the theory. The test had been proven 95% accurate (see publications for details of the studies).

Odd, I thought, that I, being a cancer nurse since 1987, had never heard of this.  Sounds too good to be true!  So I googled the term.  Not a lot came back, at least from the medical literature.  Proponents are few and far between.  Such a test would indeed be a boon to the cancer community, the professional community included.  If true, the discoverers would had long ago been offered millions of dollars for the rights.  Unfortunately when exposed to scientific scrutiny and rigor, the claims do not hold up, not for the test, not for the existence of the “anti-maliginin anitbody.”

So from what I read this is the only post I can responsibly publish.  And, no way, can I recommend this test to readers.

Snap Shots

I have been working on the blogroll.  If you look at the Brain Cancer” section, you will see that I have added more information about the specific diagnosis, year of diagnosis, country the blog is written from (if not the US), whether the patient is a child, and whether the blog is currently inactive.  I always look at blogrolls seeking new entries for “Cancer Blogs. I look as well for interesting features.  When looking at one blogroll, I noticed that by merely hovering the cursor over the blog name, a window popped up showing the recent entries.  A cool feature, I thought.

So I just installed this nice little tool on my site called Snap Shots that enhances links with visual previews of the destination site, interactive excerpts of Wikipedia articles, MySpace profiles, IMDb profiles and Amazon products, display inline videos, RSS, MP3s,  and photos,

Sometimes Snap Shots bring you the information you need, without your having to leave the site, while other times it lets you “look ahead,” before deciding if you want to follow a link or not.

Should you decide this is not for you, just click the Options icon in the upper right corner of the Snap Shot and opt-out.

I’ll be interested in your feedback on this.

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Looking up ...

Welcome to the new face of Being Cancer!  Well, it’s not as complete as I had planned – I am still struggling to place a photo image in the “header” or top section of every blog page.  But if you look closely at the same header, you will notice some changes.  The 2010 iteration of this website includes a shift in wording in the blog title.  Being Cancer has evolved into Being Cancer Network.  The word networking in the subtitle has been dropped, leaving People Transformed by Cancer.

Why the change?  I want this year’s focus to be more on our blogging community than on me.  I want to target the idea of cancer community more directly, emphasizing sharing ideas, posts, readership and enabling more discussion and dialogue.  My own health status remains solidly in remission – not so much to write about there.  Though I naturally cringe at saying out loud (bad luck?) that I am doing well as far as cancer goes, I do need to say it.  I am down to transplant clinic visits only every three months.  And, except for the occasional short hospitalization, I only have to deal with a persistent proclivity to viral infections.

I spent this weekend continuing in my naive struggle to learn programming languages – HTML, CSS, and PHP – in order to have more control over the look and functions of the website.  I did manage to successfully add some “widgets” to my left sidebar.  First is the colorful “Translate” widget that enables the Global Translator plugin to translate posts into a variety of languages.  It is always fun to view my familiar home page in Dutch, German, or Swedish.  I also expanded the “Categories” widget to include the number of posts in each category.

Next is a new box called Top Ten Commentators. This feature ranks folks who have offered comment based on the number of comments.  Hopefully it might encourage more participation.  The names on the list are hotlinks back to those blogs.  There is also a new countdown widget, displaying how long it has been since my stem cell transplant.  This might offer hope and optimism to those considering a transplant.  In the Askimet box, you can see how busy the spammers have been.  We are now at 31,000 legitimate visits.  I want to add a visit counter to the page in the future.  Finally, just for fun, you can see how many people are on the website at any given time.  This is supposed to include a world map page but I haven’t gotten it to work.

I have added some navigation features to the Cancer Resources page and hope to do the same with Book Club, Book List, and Reviews. The next thing I have planned is a different publishing schedule to emphasize the new community focus.  I plan five posts a week.  Monday will remain devoted to cancer books, either a review or the book club.  Tuesday and Thursday will feature Guest Posts.  As much as anything, this feature seems to strengthen the community.  I don’t want readers to miss out on great writing so I am doubling the number of weekly guest offerings.  Wednesday will center on a descriptive review of a selected cancer resource.  Friday will be either cancer news, a healthcare reform topic, or another cancer resource review.  I will continue to write reflections and articles occasionally.

Hopefully you have noticed the new Honor Roll page.  This is an Honor Roll for Excellence in Cancer Writing. Again this is designed to highlight the great writing and wisdom to be found in personal cancer blogs.  Cancer Blogs remains our most popular and unique offering. I will be adding to and expanding it, including descriptive modifiers on diagnosis, child survivors, inactivity, and other relevant bits.  I will be separating out Hodgkin’s bloggers as a distinct group from the other (non-Hodgkin) lymphoma survivors.

Please, please let me know about any new blogs you have found, any new cancer resources that you use, and any links that no longer work.  We are all in this together. We are the Being Cancer Network.

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Window View

It has long been part of my website plan to annotate the extensive “Cancer Resources” feature.  It is fine to have a list of links.  But such a list might be much more valuable if it contained an assessment of each site’s features, of its strengths and weaknesses.  With over 250 cancer websites listed the task has so far been daunting for me.  So I have decided to incorporate a regular post offering detailed cancer web site reviews.  A short synopsis can then be added to the site’s listing on the “Cancer Resources” page.

Cancer.org

If I were newly diagnosed, the first cancer site I would visit and bookmark is that of the American Cancer Society – www.cancer.org – a simple, easy-to-remember URL.  In reviewing cancer web sites I will be the using the following criteria: (1) accuracy and reliability of information; (2) range of features; (3) effectiveness in meeting intended purpose; (4) ease of navigating features and pages; and (5) appearance – presentation and graphics.

The American Cancer Society represents not only the motherload of information on cancers and the cancer experience, it is also the arbiter of many standards of cancer care in this country.  Their home page could probably be studied as an example of what web home pages should look like.  Numerous choices and menus are well integrated into pleasing illustrative photos.  The top left menu lets you choose an information path based on whether you are the patient or family member, the caregiver, a survivor, a healthcare professional, or just a general healthcare information seeker.  Clicking on any of these takes you to a page leading to information appropriate to your status.  For example, the “survivors” option leads you to “What happens after treatment,” “Coping with physical and emotional side effects,” “Be healthy after treatment,: and finally to “Get more information and support” including a link to their Cancer Survivors Network.

Next, in a traditional menu format, is a Find It Fast section.  From here you can quickly go to your genral area of interest be it clinical trials, statistics, smoking cessation, or treatment decision tools.  Here you will also find links to various ACS programs for breast cancer, Relay for Life, as well as products from the bookstore, gift shop or specialized hair loss and mastectomy items.  In the center of the page, with a yellow background, are two revolving features “In the News” and “In the Spotlight” currently featuring information on dealing with cancer pain.  Finally on the right side of the page are three boxes, each with its own drop-down menu, allowing you to navigate almost anywhere in this extensive site.  Sections include “Managing Your Cancer Experience,”  “Support Programs and Services” and “Resources for Healthy Living” the latter oriented to health maintenance and cancer prevention.  Other home page elements include access to various discussion boards (37 of these on different cancers, groups for caregivers, survivors, young survivors, etc) and locating the nearest ACS office.

The size of the organization, possibly the largest charity in the world devoted to cancer, allows ACS to offer something for nearly everyone.  This has the potential to make for  cumbersome site organization.  All pages are easy to navigate to and from, either by use of your “Back” button or the “Home” link that appears at the top of every page.  To make it even more easy, the site lets you register and have access to more tools and to the discussion groups.  You can customize your experience.  You can then be taken durectly to the area of the site of most interest to you.  You can receive relevant email alerts regarding new information particular to your situation.  You can also receive information on cancer events in your community.

Another useful feature is the “My Planner”.  In My Planner, you can maintain a personal calendar and to-do list to track medical visits and milestones, American Cancer Society activities, and other appointments. You can also keep track of your research by bookmarking important documents. And you can share ideas and questions through email groups.

Again, because of the size and aptitude of the organization, the site pages are constantly reviewed and updated to reflect the most up-to-date information.  All in all, Cancer.org is the best place to start at diagnosis and to return to periodically throughout your treatment course and beyond.  The site is extensive enough to offer you, your family, and your caregiver something of value at every stage of your journey.  American Cancer Society :: Information and Resources for Cancer: Breast, Colon, Prostate, Lung and Other Forms

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the Present ... and Future

This is my first ‘freshly written” post of the New Year, the start of a New Decade.  What this year and this decade hold for each of us is, of course, unknowable.  That is what makes any new beginning interesting and, at the same time, scary.  How many of us will find ourselves cured?  How many of us will earn our  remission status, then watch it hold on stubbornly or else slip into dreaded relapse?  Who among us will bravely decide on a first or maybe second transplant?  For whom will this passing decade be marked as the years of dark foreboding, being eclipsed by the coming years of bright rebirth?  And how many new readers and writers will find their way to Being Cancer and the whole cancer blogging community, glad that they discovered it but deeply saddened that they had occasion to seek it?

These are worthy and timely speculations.  Useful sometimes.  Unavoidable sometimes.  But most of us have learned that our best point of focus is on the here and now.  We are still here in Boston.  The twins, Gemma and Molly, approaching their one month birthday,  are stirring slightly from their playpad on the living room floor.  Outside the snow is piling up quietly.  Inside the hum of the furnace is broken only by Molly’s hiccups.  It makes for a reflective time.  And it makes being in the present easy and enjoyable.

What might 2010 bring to this website?  Quite a bit if my plans and energy remain true.  I want to expand the “Cancer Blogs” list to perhaps 1000 entries.  I plan to make it easier to use with explanations of which blogs are active and which are not, to include the specific sub-diagnosis more often, and to improve the navigation features.  Likewise I want to build on the “Reviews” section, eventually featuring a Top Ten in cancer books and movies.  I want to improve the graphics and add useful widgits, moving the site to more of a Web 2.0 interactive design.  Sometime this year I will open a new website to feature my on-line journal, Diary of an Illness, in its entirety.  This will remain a free on-line publication, as it has been the past eight years on the Oncology Nursing Society website.  A number of schools utilize the Diary in courses about cancer and illness.  And, of course, we will rejoin our Book Club. I have listed the next five or six books in the “Book Club” section.  You can order new and used copies of the books directly through this site if you wish.

Our January Book Club Selection is Cancer on Five Dollars a Day (chemo not included): How Humor Got Me Through the Toughest Journey of My Life by Robert Schimmel, stand-up comedian and his battle with stage III non-Hodgkins lymphoma.

~ I’d like to offer a few odds and ends, news and reflections.  Since we returned from Ireland (1) my back has gone out; (2) I have had a pesky cold and sinus infection; and (3) today I was scheduled for a root canal at 6:45 Wednesday morning.  I don’t do mornings well, and I don’t do pain, especially not the day before our big Christmas Eve dinner.  But then, Bob, my dentist called back to ask a few more question about my toothache.  Upon further consideration he decided the toothache might be related to my sinuses.  So he put me on an antibiotic.  Tuesday we’ll reevaluate and hopefully cancel the dreaded root canal.  Health issues! but I’m not complaining…

~ Check out the “About This Site” page.  It has been redesigned.

~ A few months back we featured a couple of Guest Posts from neuroblastoma blogs.  This is an update on Miss Madelyn (CaringBridge.org – missmadelyn) who just returned from a follow-up visit.  Her mother, Connie, relates this cute anecdote:  Madelyn had a great checkup! She is so darn funny! When she was in the lab- she asked the Tech, “can you count to three?” She said, “Yes, I can. And I can even count to ten!” Madelyn smiled and replied, “well in that case can you count to ten or better yet maybe even 100 before you take my blood?” I lost it! I also love how articulate she is with her Onc Dr! Madelyn wanted to know all about her study and what happens when she grows up and is too old for Childrens (Hospital)!

~ I added another link on the “Heath Care Reform” page.  It explains the bill that the Senate just passed.  The deal that won Sen. Harry Reid (we think) a filibuster-proof majority for health reform. – By Timothy Noah – Slate Magazine

~ Our friend and fellow blogger, Mel Majoros, who writes at The Cancer Warrior has opened up a new phase to her cancer crusade.  She now broadcasts weekly at Empower Radio.  Check her out at Empower Radio : Empowering You for a Better Life – The Cancer Warrior

~ If you happen to leave a comment on another cancer blog that you found on our “Cancer Blogs” links list, please mention the Being Cancer website.

~ The girls and I have an evolving “quiet time” routine.  I like the current version best of all.  Sophie and Isabel arrive just before two in the afternoon, their Mom dropping them off on her way to her new nursing job.  They sit in the big recliner together to watch “Calliou”,  their favorite TV show.  They munch on crackers and string cheese.  When the show is over, they each grab some books and head back to their bedroom.  They take off their shoes and socks, then climb up in the big antique double bed.  Isabel, 18 months old, lays in the crook of my arm.  Four year old Sophie lies next to her.  We usually read 4-5 books.  Izzy always chooses a Clifford the Big Red Dog book.

When the books are over, I pull Isabel up onto my belly.  Sophie then curls up in the crook of my arm.  The girls hold hands as I begin to sing a series of lullabyes – Twinkle, twinkle little star; Rock-a-bye baby; Summertime (from Porgy & Bess); Hush little baby; Lullabye and goodnight.

By now they are usually both asleep.  I slip my arm from underneath Sophie.  Then I lay Isabel in her little bed.  I pull the door closed, but just as I do, I glance back to gaze at them sleeping so peacefully.  These are the joys of a grandfather.  This is the grace of surviving cancer.

Firefighters

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My very early New Year’s Resolution is to get more organized.  A good start on our Being Cancer Book Club bogged down this fall with bouts of H1Ni and other viral invasions, a trip to Ireland, and holiday preparations.  Today I am publishing a list of the next five books, taking us into the summer.  I think you will enjoy the selections, as they go from humorous to intensely probing, from inspirational to practical.  And they include one book from a fellow blogger, Kris Carr.  You can put them on your Christmas list.  If you order through the Amazon links on this site, I get 4% commission.

New on the site is an Honor Roll for Excellence in Cancer Writing.  Right now this consists of bloggers whose have been printed here as Guest Posts.  Honor Rolls blogs are designated on our Cancer Blogs page with  ** .  They are also listed on a new page entitled “Honor Roll”

Bookshop in Kinsale, Ireland

~ January 2010 selection: ” Cancer on $5 a Day ” by Robert Schimmel

Schimmel already had a hit HBO stand-up comedy special and a Stand-Up of the Year title from the American Comedy Awards when, in the spring of 2000, he was diagnosed with Stage III non-Hodgkin’s lymphoma. His world changed instantly; success in the raunchy joke trade-he also had an edgy FOX series in development-was replaced by the struggle for survival, the rigors of chemotherapy and all the fear and uncertainty that goes with it. Schimmel also looks back on his son, whom he lost not long before to brain cancer. Among a crowded field of inspiring and straight-talking personal survival stories, Schimmel’s conversational account is particularly ribald, emphasizing the importance a sense of humor can play in coping, learning and healing.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Order from Amazon: Cancer on Five Dollars a Day (chemo not included): How Humor Got Me Through the Toughest Journey of My Life

~ February 2010 selection: “The Middle Place” by Kelly Corrigan

Newspaper columnist Corrigan was a happily married mother of two young daughters when she discovered a cancerous lump in her breast. She was still undergoing treatment when she learned that her beloved father, who’d already survived prostate cancer, now had bladder cancer. Corrigan’s story could have been unbearably depressing had she not made it clear from the start that she came from sturdy stock. Growing up, she loved hearing her father boom out his morning HELLO WORLD dialogue with the universe, so his kids would feel like the world wasn’t just a safe place but was even rooting for you. As Corrigan reports on her cancer treatment—the chemo, the surgery, the radiation—she weaves in the story of how it felt growing up in a big, suburban Philadelphia family with her larger-than-life father and her steady-loving mother and brothers. She tells how she met her husband, how she gave birth to her daughters. All these stories lead up to where she is now, in that middle place, being someone’s child, but also having children of her own. Those learning to accept their own adulthood might find strength—and humor—in Corrigan’s feisty memoir.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Order from Amazon: The Middle Place

~ March 2010 selection: ” Called Away ” by Mary Cappello

In her intensely personal and insightful memoir, Mary Cappello wonders aloud for us what breast cancer awareness really makes us aware of, and responds as if for the first time to the deceivingly simple command: “tell me what you’re feeling.” Unable to eat on chemotherapy, Cappello feasts on the paintings of Marsden Hartley, yearns in the tradition of Emily Dickinson and Gertrude Stein, keeps company with Marcel Proust, and lets queer artists tease her back to life. Called Back looks through the lens of cancer to discover—often with humor—new truths about intimacy and essential solitude, eroticism, the fact of the body, and the impossibility of turning away.

Order from Amazon: Called Back: My Reply to Cancer, My Return to Life

~ April 2010 selection:  “Crazy, Sexy, Cancer Tips” by Kris Carr

CRAZY SEXY CANCER TIPS gathers the lessons learned and advice offered from Carr’s own journey, as well as the experiences of her cancer posse. Full-color photos accompany personal stories and candid revelations in this scrapbook of advice, warnings, and resources for the cancer patient. Chapters cover your changing social life, dating, sex, and appearance; essential health tips on how to boost your immune system; recipes; medical and holistic resources; and information on young survivor support groups. The resulting book is a warm, yet informative tool for any woman newly diagnosed with the disease and for those who love them.

Order from Amazon: Crazy Sexy Cancer Tips

~ May 2010 selection:  “It’s Not About the Bike:  My Journey Back to Life” by Lance Armstrong

People around the world have found inspiration in the story of Lance Armstrong–a world-class athlete nearly struck down by cancer, only to recover and win the Tour de France, the multiday bicycle race famous for its grueling intensity. Armstrong is a thoroughgoing Texan jock, and the changes brought to his life by his illness are startling and powerful, but he’s just not interested in wearing a hero suit. While his vocabulary is a bit on the he-man side (highest compliment to his wife: “she’s a stud”), his actions will melt the most hard-bitten souls: a cancer foundation and benefit bike ride, his astonishing commitment to training that got him past countless hurdles, loyalty to the people and corporations that never gave up on him. There’s serious medical detail here, which may not be for the faint of heart; from chemo to surgical procedures to his wife’s in vitro fertilization, you won’t be spared a single x-ray, IV drip, or unfortunate side effect. Athletes and coaches everywhere will benefit from the same extraordinary detail provided about his training sessions–every aching tendon, every rainy afternoon, and every small triumph during his long recovery is here in living color. It’s Not About the Bike is the perfect title for this book about life, death, illness, family, setbacks, and triumphs, but not especially about the bike. –Jill Lightner

Order from Amazon: It’s Not About the Bike: My Journey Back to Life

It’s a sunny autumn day here in the Midwest.  Four-year old Sophie has already called us on the telephone, outlining her plans for the day and especially for this evening,  All Hallow’s Eve.  We went to her pre-school Halloween party yesterday.  Most of the little girls were dressed as princesses, butterflys, or fairies.  Sophie was a fire-fighter.

My Friday healthcare reform posts were interrupted by my illness and recent travels.  With a number of new proposals coming out last week, I wanted to bring your attention to the primary resource on the issue, An online guide to following the health care legislation. – By Timothy Noah – Slate Magazine The article is updated frequently with the latest edition published just yesterday.  It is full of hot links to all the latest information.  You can see the latest House bill, how it compares to previous proposals, summary of various sections, charts on tax provisions, implementation timelines, costs breakdowns.  You can also find information on the Baucus bill, different Committee documents, White House resources.  As always the article lists blogs by columnists, academics, think tanks, public policy consultants and other professional bloggers.  In all there are hundreds of links related specifically to the healthcare reform debate which is why I continue to champion An online guide to following the health care legislation. – By Timothy Noah – Slate Magazine as the best single such resource around.

In less heady news I wanted to comment on the increase in number of “Nigerian” money scams that make it to the website’s mailbox.  I have four different email addresses for various endeavors.  So why the Being Cancer address attracts so many offers to help launder millions of dollars, I don’t know.  Likewise I wonder why it is that nearly half of the people registering at my site have Russian (.ru) email addresses.  Might this have anything to do with the almost 6000 pieces of spam I have received or is it evidence of a thriving cancer blogging community in Russia?  Hmmmm.

Being Cancer has hosted nearly 23,000 visits since April.  The most popular page is Cancer Blogs (and its predecessor Cancer Blog Links).  I am planning a major expansion of that feature.  I may indicate new listings with an asterick or something.  I also plan to start a Cancer Blog Honor Roll for those blogs that have been featured in our Guest Post.  I nearly have more projects related to cancer than I have the time or energy to develop. But I’ll keep plugging away.

Have a great Halloween and weekend!

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