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Halfway through the history of this blog, I changed my criteria to include cancer blogs which were no longer active but were still published and accessible.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

Columbines

I have fallen behind in my correspondence as well as with the blog.  Here are some recent emails.

~ Kristy has been fighting renal cell (kidney cancer) since 2007.  She writes at ♥ FOREVER KRISTY ♥.  See her listing of other renal cell survivor blogs.

~ Randy Perry has been fighting stage IV colon cancer since 2009.  He writes a blog about his extended treatment at Fighting Cancer

~ Lynda is a brain tumor survivor who writes at My Brain Tumour.  “I was actually diagnosed with a benign parasagittal meningioma in July 2006. I was very lucky that as it was positioned on the top of my head it was very accessible and successfully completely surgically removed in the same month. I have my own Ebook which relates my journey through the whole episode which can be found at http://www.mybraintumour.com”

~ from the site Navigating Cancer: “I work for Navigating Cancer and am writing to follow up on an email we sent earlier this week inviting you to preview a new feature we launched for patients; a free online medical history form. So far we’ve received great feedback from oncology clinic staff, some of them are even considering replacing their paper intake forms with our online forms.
As someone who has worked with cancer patients, and personally experienced leukemia, we’d love to get your perspective on this new feature. We’re also looking for quotes that we could use in an upcoming press release, which would generate more exposure for your blog.
The purpose for creating this feature is to provide a safe and secure application that patients can complete at their convenience, saving them hours filling out forms in waiting rooms and providing a comprehensive and accurate medical history to their health care team. When doctors have a complete picture of a patient’s health they can provide the best care.
Thanks for your time and support, I look forward to your feedback so we can continue to improve the site and provide the best experience for cancer patients.
- Medical History Form Overview – click the link to learn more, or log in and check it out”

~ Michelle Burns describes herself as a Health and Wellness guide, healer and teacher. She writes “Thank you so much for all the work you have put in to bring so many resources together in one place.
I am a uterine cancer survivor and I work as an advocate/navigator for people living with, through and beyond life threatening long term illnesses.  I often refer them to your site or a resource I have found through your site.  It is truly a gift.
I have a blog about my experiences regaining my life again after cancer, as well as information gained from clients that I would like to add to your list.  My blog can be found at: http://prohealthguide.wordpress.com/”

~ Megan writes a new blog about her husband’s sarcoma at The Cancer Wife.  Here is a sample:“Papa has a bump, a bump filled with bad cells.” This is what we told our children 6 & 4 when we discovered this May that my man has cancer. He is a healthy 37 year old. He had a small hard bump on his pubic bone for a while and suddenly noticed in January that it had gotten bigger. He ignored it a while longer and then in April finally went to the doctor.

We thought it was a hernia.The doctor ruled out hernia and ordered blood work and a CT scan. The blood work came back fine and I sighed a huge sigh of relief! Silly me. After the CT scan my man met with a surgical oncologist who believed it was a Desmoid Tumor, a benign form of sarcoma. My man had a biopsy on May 12th and on May 18th I received a call from the doctor. She wanted to discuss my husband’s biopsy results with me, I immediately burst into tears.

We are told he is lucky in many ways; the tumor isn’t attached to anything important, it is operable, it hasn’t metastasized, but it is high grade which means it wants to. Since the original diagnosis we have had nothing but good news. But it is still cancer and it is still the scariest thing that has ever happened to us. My mother died of cancer when I was 24. It is hard to separate this cancer from hers, it is hard to believe doctors when they say my man will be fine, I have heard that before.

My man is German, and he is a Data Analyst. Thank god for small wonders. He is so calm and rational through this. I joke that I am freaked out enough for both of us. I hope to relieve my body of the physical hardships of being freaked out 24 hours a day by writing this blog. Maybe it will be useful for others as well. I do respond to stress with sometimes inappropriate/black humor so consider yourself warned.”

~ And this from Lauri Panopoulis: “I work for Cancerdirectory.com, a contemporary lifestyle and well respected cancer information website.  The site includes survivor blogs as well as cancer treatment news and website reviews.
We are dedicated to helping those affected by cancer by providing a community of patients, survivors, family members and health professionals who share individual stories with each other and the world.“   CancerDirectory.com

Finally news of a new book by oncologist, Keith Block.

Preventing a Recurrence of Cancer
by the author of Life Over Cancer: The Block Center Program for Integrative Cancer Treatment

According to the National Cancer Institute, there are over 12 million cancer survivors in the US today.  And that number is expected to grow, as the population ages, treatments improve, and tests find the disease earlier.

Cancer survivors face a myriad of health challenges, not to mention the daunting fear the cancer will return.  However, once a patient is deemed “in remission,” they are typically disconnected from care — as well as any attending support — and told to come back in three to six months where diagnostic scans or blood tests will determine if the cancer has returned.

We suggest a far more pro-active, empowered approach: a remission maintenance plan that offers cancer survivors a personalized program to regain control of their health, restore vitality and protect against the cancer returning. At the Block Center, once a patient has completed their treatment, we personally tailor a comprehensive Remission Maintenance program for them that includes: therapeutic nutrition, exercise, mind-spirit care, and anti-tumor therapies.

Understandably, after hearing that they are “in remission,” patients may want to retreat psychologically to a “cancer- free” zone and never think about the disease again.  But this is why they shouldn’t:  Cancer is as much a microscopic and molecular disease as it is a visible one. Thus, a patient in remission may still harbor malignant cells (ones that were resistant to chemotherapy or radiation, and therefore survived the attack phase). These cells unfortunately have the ability to show up with a vengeance, even when one least suspects. Not placing far greater emphasis on containing and addressing these cells from the get-go is a significant omission of mainstream treatment. But while preemptive treatment strategies may only exist in integrative clinics, when it comes to the diagnostic side, a new technology has begun demonstrating the relevance of these virulent escape cells.

Enter CTCs (circulating tumor cells)! Over a decade ago, the Block Center was one of a few that were performing bone marrow biopsies to evaluate for malignant cells in both the marrow and in circulation. It took several years, but eventually this evolving diagnostic technology made it into conventional care. While easier to perform today and more reliable as well, we continue to use this in our clinic. This technology allows us and others the ability to measure in our patients the number of these detached cells circulating freely from the main cancer mass.  Though not yet approved for all cancer, research studies have shown that an increase of these cells is prognostic of a patient’s survival.

For instance, a CTC count may be a better prognostic indicator for survival among prostate cancer patients than a PSA level — the test used presently to determine and follow the course of prostate cancer growth.

By comparing the levels of CTC in 37 men with metastatic prostate cancer, researchers at Thomas Jefferson University found that for the men with 5 CTCs or more, the median overall survival was only 8.4 months. Whereas, if these men were found to have less than 5 CTCs, the median survival was 48 months!

The relevance of CTCs is also relevant to other cancers. For instance, CTCs were measured in 151 women with metastatic breast cancer. The MD Anderson Cancer Center’s researchers found that those patients with 5 or more CTCs had a median survival of only 13 months, whereas those with less 5 survived over 29 months!

Controlling, preventing or overcoming these detached and disseminating cells is possibly the biggest conundrum facing cancer scientists. While these cells are generally addressed during treatment, the first steps of recurrence prevention should start with strategies to counter the survival of these residual cells and inhibiting their potential proliferation. In fact, CTCs that have gone through the onslaught of treatment and have nonetheless survived have the potential to evolve into more aggressive clones encouraging a more virulent malignancy. So what to do?

Aggressive Monitoring

We recommend regular monitoring of patients’ status with lab tests and imaging to detect early signs of disrupted biochemistry or a recurrence of disease, especially in the year or two after remission.

Being “diagnostically aggressive” may allow us to be less invasive therapeutically. In the first years after remission, therefore, we recommend:
Clinical visits with your oncologist, at least every three to four months in the first and second year and every six months for the next several years
Scans and blood tests of tumor markers every three months.
Complete blood count and chemistry test every three months.
Nutrition status, including weight changes, body composition, and albumin levels, every three months.
Internal terrain monitoring, every three to six months for the terrain factors that are most problematic.
While monitoring, there is no reason to wait anxiously for the other shoe to drop.  So immediately implement a full integrative program.
Make sound dietary changes toward adherence of a whole foods diet.  Reduction in dietary fat has already been shown to cut recurrences in different cancers. Controlling refined flour, sugar and junk food is a necessary step to avoid the recurrence risk of elevated blood glucose and spiking insulin levels.
Introduce aerobics, strength and flexibility training into your daily schedule. Yoga, pilates, chi gong or any number of fitness approaches is an essential step towards recurrence prevention. Considerable research supports that risk, response, recurrence and outcomes are tied to physical care.
Mitigate stress through progressive relaxation, meditation, or simply easing the load on an excessive work schedule. Elevated cortisol levels are associated with poorer outcomes in breast cancer patients. So do what it takes to transform less healthy patterns.
Get rest and adequate sleep. The more active you are in the daytime, the better you’ll sleep at night. Few of us get enough sleep

- Keith I. Block, M.D. is Director of Integrative Medical Education at the University of Illinois College of Medicine; Medical Director of the Block Center for Integrative Cancer Treatment in Evanston, Illinois; and founder and Scientific Director of the nonprofit Institute for Integrative Cancer Research and Education. He is also editor in chief of the peer-reviewed professional journal Integrative Cancer Therapies and a member of the National Cancer Institute’s Physician Data Query Complementary and Alternative Medicine (CAM) Editorial Board.

Four days of luxurious rain, my grandkids gone (it’s Sunday), and a perfect time for writing and maintenancing my site.  This is the longest period of inactivity (blogwise) since I started.   So it’s time to get back down to business.

First off I have added a Captcha plug-in to the site.  Captcha is that feature that requires site users to correctly copy a series of letters.  The theory is that only real humans can read these.  Lately I have been getting 2-3 news users registering each day, all with questionable user names and many from eastern European countries.  Most of these, if not all, are registered not by humans, but by automated “bots” or robots, programmed to log onto multiple sites in order to market questionable products, services, or pornography.  Other “bots” are designed just to set up a link to multiple blogs in effort to artificially inflate their ranking in search engines.

Today I deleted over 300 users.  I may have inadvertently deleted some legitimate site users.  I apologize for this.  In any case any new or deleted users will have to copy the Captcha phrase in order to register or post a comment.  I apologize for any inconvinience.  The situation was just getting out of hand.  I was filtering almost 10,000 spam messages annually.

Also woefully behind was my replies to emails.   Valerie Bosserman, The World As I See It….,  wrote me to say that she is a finalist in the CureToday Extraordinary Healer Award for my essay on Megan’s chemo nurse.  Megan, her daughter, died just two years ago of ACC.  Copy and past the link below to see the story.  (http://www.curetoday.com/index.cfm/fuseaction/cureEvent.HealerOverview/id/43)  I sure support any organization that recognizes the efforts of oncology nurses.  CureToday.com – Combining science with humanity, CURE makes cancer understandable.

I added a few new blogs to my lists.  Gillian Anstey is from South Africa and writes about her breast cancer at From under my hat.   Of special interest to me is a new T-PLL patient (that’s my disease) preparing for a stem cell transplant – Curing Vancura.  Tracey Hawker writes about her husband’s esophageal cancer at CaringBridge / johnhawker / Welcome.  Selena is an APL survivor maintaining a blog at Oh My Aches and Pains! Kristal writes a blog about life after cancer and training for a triathlon as a cancer fundraiser: TriathlonKrista.  A 37 year old single mom fighting Colon cancer for 5 years, has gone from stage 3 to 4 now, has metastasized to liver, and diaphragm – I’m Still Here…

The American Institute for Cancer Research will hold its annual Conference on Food, Nutrition, Physical Activity & Cancer in DC in late October.  Check the Events Calendar above for details.  Stand Up 4 Cancer has released two new videos as part of their Innovation Research Grant Profiles.  Check them out.   (http://tiny.cc/su2cIRGDrWalensky) and (http://tiny.cc/su2cIRGDrSilva).  Click and past in your browser address bar.

Julien Lieb, MD offers the following information on the effect of antidepressants on selected cancer.  Prostaglandins are infinitesimal, ephemeral and powerful molecules regulating the chemistry of every cell in the body, including cells regulating mood, and those regulating immune function. When produced within normal limits, prostaglandins regulate the chemistry of every cell; when produced excessively, physiology becomes pathology. When brain cells produce excessive concentrations of prostaglandins, they depress mood and immunity. In 1973, David Horrobin showed that antidepressants inhibit prostaglandins, and in 1977 that prostaglandins regulate nucleic acids (DNA and RNA).1,2 Others subsequently showed that prostaglandins regulate the synthesis, inhibition, and expression of genes, and the growth, differentiation, and replication of cells, with cancer the accelerated replication of abnormal cells.1,2 Excessive synthesis of prostaglandins induces cancer, with genes determining the variations. In 1998, Brenda Penninx showed that at age 70, chronically depressed people have an increased risk of 88% of developing cancer, and 50% of dying of it.
More than seventy clinical, laboratory, and epidemiological studies have shown that antidepressants kill cancer cells, inhibit their proliferation, convert multidrug resistant cells to chemotherapy sensitive, augment chemotherapy, protect nonmalignant cells from damage by radiation and chemotherapy toxicity, and target the mitochondria of cancer cells while sparing those of healthy ones.1,2 Antidepressants have therapeutic potential in many cancers that are often treatment resistant, such as gliomas, cancers of the lung, kidney, liver, and uterus, inflammatory breast cancer, and multiple myelomas.2 Antidepressants are capable of arresting lung cancer in advanced stages, and even reversing it. That antidepressants are effective for a multitude of malignancies, decries the myth that cancer is a hundred diseases, when it is one disease with a hundred variations.
Antidepressants alleviate cancer pain, alone or combined with narcotics, remit nausea and vomiting, promote sleep, relieve anxiety and depression, and combat fatigue. Other inhibitors of prostaglandins, such as COX-1 and COX-2 inhibitors, also have potential value in defeating cancer. The components are in place for a revolution in cancer prevention and treatment, as may be confirmed by accessing �Medline� or �Pubmed,� and entering �antidepressants� and �cancer.�
The history of medicine is littered with the suppression of innovation. Today many cancer organizations rely on the opinions of medical advisors, some of whom are political operatives of vested interests disguised as healers. It is not for a lack of innovation that we are in our predicament, but the suppression of it. In â��Against Methodâ�� Paul Feyerabend wrote that suppressing a paradigm in preference to one politically favored could permanently damage society, and that resistance to progress could be so intractable that political intervention might be needed. ** This is certainly a viewpoint, if a bit out of the mainstream.  It must be assessed within a broader medical and scientific context which is beyond my expertise.  As with all such information, you should discuss it with your medical doctor.

That’s all the news that is my news.  Later this week, look for a cancer book review, cancer website reviews, and a few guest posts.  Hopefully I am back on track.

Papa, Gemma & Molly

This post is written ahead of time.  We are having the hardwood floors refinished in the living room, dining room and hall.  So my study with its computer will be off-limits for few days.  Tish is out of town for a conference.  The girls and I will spend time next door at my mother’s house.

I have begun to read a book I started in Boston, It’s Good to Know a Miracle: Dani’s Story: One Family’s Struggle with Leukemia.  Written by Dani and her parents, the book is a detailed but straightforward account of a young woman dealing with acute leukemia, its sometimes fearsome treatment, and then the long road to recovery after a bone marrow transplant.  It is a good, accessible reference for anyone going through or supporting someone with acute leukemia, and for anyone facing a bone marrow or stem cell transplant.  I will write a full review the next week or so.

I am fulfilling my desire to get more active and work on improving my strength and endurance.  I went to Menard’s, a big box home improvement center, today.  I loaded up five 2 cu ft bags of potting soil, six 30 pound bags of gypsum, and six 20 pound bags of 12-12-12 fertilizer.  Then when I got home, I had to unload it.  I also picked up just a few vegetable plants.  Thinking about ordering 18 yards of mulch.  But that will have to be delivered by a dump truck.  Me and my John Deere will then pick it up, load after load after load, and spread it around the gardens here and at my Mom’s.

I received a nice email the pother day from Wendy Harpham, a well known physician survivor, author of several books, and a blogger too.  She writes at Wendy Harpham.  She invites others to “visit and add your voice.”

I also got an email from a Sarto Schikel.  His wife and he just published a book called “Cancer Healing Odyssey”.  Her success against cancer involves, among other things, treatment in Mexico.  I will check it out and may post additional information later.

Oprah also sent me an email.  At least her name was somewhere in the email.  Her magazine is celebrating its 10th Anniversary and is sponsoring a walk benefit “Live Your Best Life” in New York City on May 9.  The Ovarian Cancer Research Fund is one of ten charities benefiting.

Also an email from Marika Burkhart wanting everyone to know about Navigating Cancer.com.  More about this site later.

All for now.  I will schedule this post for Thursday publication.  I hope to be back at my iMac on Friday.

As you read this, we are probably on the road, traveling through Connecticut, Pennsylvania, New York, or Ohio.  Our guidebook called Boston a “motorist’s nightmare.”  We discovered that on our last visit here, getting lost on two occasions even with MapQuest printed directions.  So our new Garmin GPS has really paid off.  We still get lost, though only momentarily while the GPS recalculates.  Not all the streets are marked at intersections.  When the GPS says turn right at a specific street, there is usually a choice of turns as most intersections seem to be made up of five or six streets, all going off at odd angles.  And these are not even the rotaries or roundabouts.

It is blustery and cold today.  I am getting ready to take pictures of the twins enjoying their bath.  Then off on a family outing to a Himalayan restaurant and then to a children’s clothing store.

If you are a close observer, you will have noticed that I have expanded the subtitle of the blog.  The thought came to me during one of the conference sessions.  My writing and projects have become more about the cancer blogging phenomenon than about my own experiences.  So in yet another iteration in the continuing development of this site the blog’s focus will begin to reflect that more and more.  During the session I wrote in my notebook the words “blogging portal”.  It was only later, looking at the words again, that I thought to amend the blog subtitle to “A Blogging Portal for People Transformed by Cancer.” I am not sure exactly what that means for the content and mission of Being Cancer Network.  But the new wording at least frames the direction.  Any thoughts are welcome as always.

Apologies to Mary Cappello. We will get back to her book Called Back on Monday.  Please finish the book if you haven’t already.  Lyrical and pensive prose.  At the conference I met a couple who have published a book about their 26 year old daughter’s miracle battle with acute myeloid leukemia (AML) and her subsequent bone marrow transplant.  It’s Good to Know a Miracle: Dari’s Story by Jay and Sue Shotel.   I will post purchasing information when I return home.  A review will follow in a week or so.

I need to figure out how to add graphics and photos to blog posts when I am traveling.  I feel like I am cheating readers by posting without illustrations, modest as they are.  See you next week, Dennis

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.

cancer

~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.

cancer

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.

cancer

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.

cancer