Pizza Face!

Statistics for yesterday’s visits were high.  The Neuroblastoma community is very strong and supportive.  It prompted the following email from Junita in Singapore:

“The way I stumbled upon your blog is very amazing… seems someone up there is paving the way for me to reach your blog… and especially to read today’s topic on Neuroblastoma.

First of all, I am not a cancer patient and live in a small country in Asia called Singapore. I have been following a blog of a 4 year-old Singaporean girl called Charmaine, who has been diagnosed with this “Monster” (that’s how Charmaine’s mummy calls the cancer) on 13th Feb 2009. Since then, the blog was started with aim of raising funds (US$350k) to allow Charmaine to get treatment in New York.

The fund raising is successful, and Charmaine is in New York now.

I am not sure where you are located, but I guess US. If you, or any of your contacts can pop by to see if they need any assistance, that will be great.

Charmaine is there with her mummy Cynthia and her 5 years old brother. I do not know them personally. But I imagine they may need some help now… This is her blog…Feisty Princess Charmaine ”

I checked out the blog, which is listed in our Cancer Blog Links page, and it is being kept current and following Charmaine daily progress with photos at Sloan Memorial Kettering in New York.

Speaking of the blogroll, we have not passed 620 blog links.  Big additions have happened with Multiple Myeloma, Ovarian, childhood leukemia, neuroblastoma and prostate cancers.  I have found several hundred other blogs that are no longer active so I didn’t include them unless they contained a concise history of one of the less documented cancers.

I have also received a number of inquires about book reviews, these from the suthors and not the publsihers.  From Anne Orchard in the UK I received Their Cancer – Your Journey: A Traveller’s Guide for Carers, Family and Friends.  I will be reviewing that in the near future.  I just received an email from Sigourney Check, a CLL survivor,  about her new book, Patient Siggy.  I will be reviewing that also.  From Scott Seaman, a non-Hodgkin’s lymphoma survivor, I received notification of the publication of his new book Battling and Beating Cancer – The Cancer Survival Book.  If you’re into music, you might be interested in a new CD to be leased in September by a band composed of gynecologic oncologists calling themselves N.E.D. (No Evidence of Disease).  More about all of these later.

Being Cancer has been placed on a list at Webicina.Com • Cancer.  This site is designed for both medical professionals and “empowered patients”.  We also have a listing on Blogged – Home with a ranking of 8.3 or “Great”.  We also have a listing on Being Cancer on Technorati- write a review if you’d like.

Incidentally my paranoia about relapse was just that.  At the clinic last week I had a normal wbc and hemoglobin although my platelets remain, after five years, subnormal at 95,000.  The white cell differential also had a normal profile.  So I don’t have to fret for another three months.

Comments concerning monetizing the blog were almost all positive.  This may motivate me to finally upgrade my Wordpress blogging software.  I chickened out the last two times.  I also want to be able to justify spending more time on a few site projects: annotating the Cancer Resources page; creating a new Cancer Book Review Page; spiffing up the Cancer Blog Links page and separating out new sections for testicular, pancreatic, and few other less common cancers; adding useful widgits; and possibly going to a three column format.  Starting tomorrow I will be starting another brand new page, one devoted to Healthcare Reform.  I do not want to have a highly political blog but I don’t believe that it is responsible to stay out of the public debate.  Watch for Friday’s post introducing this new feature.

Readers seem to be enjoying the August Book Club selection The Light Within. I have been in touch with one of the authors, Dr. Lois Ramondetta, who may be joining our discussions

Comments and daily readership have been on a steady rise (almost 12,000 visits).  I really appreciate that.  I hope that this means that we are publishing materials and resources of value to the cancer community.

Take care, Dennis

cancer

I am trying out some things, getting into a weekly rhythm as the blog evolves.  I have over 125 blogs in my blogroll so far.  But I would like to go a step further and share some of the more eloquent nuggets found in some of these excellent cancer blogs.  Today is a Thursday.  Maybe I will make Thursday my guest blog days.  What do you think?

Today’s offering will be from a fellow CLL (chronic lymphocytic leukemia) survivor, David Arenson.  His blog is called CLL Diary.  I wasn’t surprised to read that David is a former newspaper editor.  His writing is excellent.  In this post “Beyond Living la vida leuko” he steps off the roller coaster of his cancer experience and takes a moment to look back at the some the subtle changes his psyche has gone through.  He takes the opportunity to see if some realignment may be taking place in his life, the road ahead, as for most of us, uncertain.

Beyond living “la vida leuko”

The house is a mess. I don’t have time for much of anything except what absolutely must be done.  Marilyn and I are living our lives inside a turbo-charged hamster wheel consisting of treatment for CLL; renovating the house and paying for renovation of the house so that we can sell it; and keeping our business ramped up to pay for as much of the above without going into even more enormous debt than we already find ourselves in (Thank you, Bernie Madoff! May you live to be a hundred — in jail, of course).

It’s a three-ring circus with lots of elephants plotzing around. Sometimes the building shakes. And yet this morning, as I poured a cup of coffee into my Far Side mug in the beautiful new kitchen I won’t own much longer (we hope), I felt a sense of calm and optimism that I had almost forgotten had once been part of my life.

Call it a flashback to pre-CLL, when the mere weight of the world hung around my shoulders — as opposed to the mere weight of the world plus the prospect of death and how to avoid the latter for as long as possible.

Here I stood in a half-done house, enjoying what for us Arizonans is a delicious morning of overcast, drizzly, and cool Memorial Day weekend weather. I could look through the mess around me and see that there was a future somewhere. A move sort of impending, an adventure even, a next step that despite being in large part about CLL is not all about CLL.

The non-CLL part has something to do with getting one’s life back in order. A lot of things have been let slide around here since I was diagnosed in 2003. Plans and projects shelved, everything deferred to matters of disease and, gradually, economics. Spin it as much as I like, it’s basically been a depressing, unhappy time. After almost six years, I have decided that you can’t truly make a silk purse out of the CLL sow’s ear. Perhaps the mistake is in trying too hard.

Now things are changing. There are physical signs of it wherever I look. And maybe as time goes on I have developed less propensity to worry. Maybe I’m sick of living la vida leuko. Maybe standing in a new kitchen amid old debris symbolizes the ability to get things done, to get moving, to somehow take a powerful step beyond the inertia that followed the gut-punch of a cancer diagnosis.

Who knows, maybe I’m just responding to negative ions in the atmosphere. I’m not expecting the CLL road to get easier. I am just hoping that my ride along it — Marilyn’s and mine — might be somehow less bumpy, perhaps more focused on the scenery. It’s a beautiful world, really. Sedona is a beautiful place, but I have lived in beautiful places before.

Another one, I hope, awaits. Physical, metaphorical, lyrical. I’ll take what I can get.

Perhaps, I hope, I have taken a step and am just a little bit there already.

by David Arenson CLL Diary

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