Gateway to a future...

Job News:

Just about seven  years ago I was reborn at Indiana University Hospital.  With my brother as my donor I underwent an allogeneic peripheral blood stem cell transplant.  My twenty-two days there remain hazy, a vague kind of dream from which I awoke with a new life.  Part of the time I was fighting the predictable infections that accompany the procedure – that period when my immune system in defenseless while engraftment is taking place deep in my bone marrow.

I remember well the night I got up to go the bathroom.  Yes, the nurses said to put on the call light first.  But I was an adult.  I was a nurse so I was capable of assessing my ability to walk unaided.  Then the room began to spin.  I whirled and crashed in to glass-fronted cabinet, bumping my head on the corner.

Dejected and embarrassed, I sat down on the bed and put on my call light.  Two nurses rushed into my room, examined the small cut on my forehead and scolded me gently.  My wife came in at 3:30 in the morning.  I went downstairs for a CT scan.  I remember being bald at the time but for the rest I would have to consult my Caringbridge entries.

Today I accepted a position working part-time evenings in the Bone Marrow Transplant Clinic at the same hospital, just down the hall from my original room.  This will be an ideal job.  I will be the only person in the clinic after six.  My patients will not be there for active infections.  The rooms are Hepa-filtered. And I only work 4.5 hours a day.  So my exposure risk (my immune system is still immature at six years old) and working hours are minimized.

I will still have days free to care for my granddaughters and my mother.  But the biggest excitement is   being able to share with my patients the kind of additional legitimacy conferred by our shared experience, in addition to my twenty-five year background in oncology.  So in returning to IU there is an appropriate kind of symmetry.

We will have to see how this new schedule affects my ability to keep up with the blog.  On the other hand, having the opportunity to work so closely again with people struggling with cancer will certainly give me more to write about.

Book News:

Sheryl Crow – Rockstar.  Singer-songwriter.  Record producer.  Actress.
Cancer survivor.  Activist.  Mother.  And now Cookbook author has written a new book  – IF IT MAKES YOU HEALTHY–written with Chef Chuck White–is filled with over 125 seasonal, locally grown and delicious recipes as well as notes from Sheryl about life on the road, home, and stories of her childhood & path to stardom.

Ashley Murphy, fellow blogger (Ashley’s Art Closet) and liver cancer survivor, announces publication of her book Daddy’s Briefcase.

Check it out at http://ashleysartcloset.blogspot.com/2011/03/daddys-briefcase.html

Drug News:

Pharmaceutical Research and Manufacturers of America (PhRMA) is offering  a new report that details 887 new medicines in clinical trials or under FDA review for Cancer. Go to Cancer | PhRMA and download the 92 page PDF file at the bottom of the page.  Drugs in development are divided according to kind of cancer.

It’s the nature of the Beast (double entendre intended) but we tend to publish more news that is bad than is good.  Sometimes it seems that the most we can hope for is an emotional and psychological victory over our daily trials and tribulations with the disease and its treatment.  Medicine is so cautious.  So we rarely get to declare that we are “cured”, that the cancer is gone never to return again.

It is rare find find when we discover a piece of unabashed GOOD NEWS.  Let us all join then in congratulating one young, long-time blogger and lymphoma survivor who writes at My ride on the Hodgkins bus…

fertility

One of the issues facing young cancer patients that is just starting to get a bit of attention is fertility. Cancer treatments are designed to kill cancer … and whatever else needs to be killed in order to kill cancer. It’s been my experience and my opinion via conversations with others that the field of oncology isn’t especially interested in anything that isn’t cancer. Unfortunately, that means a lot of side effects are blown off, including but not limited to fertility.

Before I began treatments for my lymphoma, I was told that one of the possible side effects of the chemo was early menopause: my periods would stop during treatment and they might or might not start again.

I only missed one period.

Since chemo, however, I have had a bunch of other odd hormonal side effects that are annoying and slightly disconcerting but probably not life-threatening. No one can tell me why they’re happening or if they’re a problem (oncologist, primary care doc, ob-gyn), so I’ve never really been sure if all of the plumbing is working properly or not.

We have confirmation that all systems are in order — I am pregnant!

I have seen two docs so far —one at a birthing center and one in a regular office — and neither was of the opinion that my cancer history is a problem. I suspect that it being in a different part of my body is a big deal, and being in remission for over three years probably helps, too.

So I’m officially on my next wacky body journey, but this time cultivating the growth instead of trying to get rid of it. We’ll see how it goes!

~ from My ride on the Hodgkins bus…

New Bedford harbor

Here’s a little update on my situation and on some interesting cancer news that I have received in emails lately.

Headline:  1 in 20 Americans is a cancer survivor (CNBC)

Looking for Work:

I am beginning to understand the frustration of America’s unemployed.  The loss of a substantial portion of my disability benefits has left me scrambling for some kind of part-time employment.  All the news about the aging of the Baby Boomers coupled with steady talk about a nursing shortage would seem to indicate that I should have no problem returning to the field.  Intuitively, yes.  In point of fact, no.

The economy seems to have made the healthcare industry cautious.  As an old-timer my first impulse was to search the want ads.  But the classified section is skinny even  if it shows up in the daily paper.  And cruising through the newspaper reveals more ads for training schools than for actual jobs.  A recent announcement of EMT  jobs listed a requirement for a $10 application packet fee.

My next step was to look to the web.  I have signed up for numerous nursing groups resulting in daily deposits in my electronic mailbox of a broad range of nursing positions.  Problem is all are full-time and almost none of them are local.

The whole application process has been streamlined as well.  You set up accounts with various healthcare employers, establishing and electronic application and resume.  Then you must reapply for each new listed job that you interested in.  There are generally no contact names or numbers.  In fact you are advised that you will only be contacted if you are offered an interview.  Your resume must be simple and streamlined in order for it to be correctly scanned int the company’s database.

I am looking for 8-12 hours of professional (nursing) work per week or perhaps 20-25 hours of non-professional work.  It looks like I will only be able to secure very part-time nursing work through networking.  So if any of you out there have any connections, please let me know.  I have 25 years healthcare experience mainly in oncology but also in mental health.  I have been a clinical nurse, a nurse manager, a nursing educator, a speaker and consultant, a project developer, and I run two websites.  I can work from home on my computer.  I can travel locally.  Maybe there is a job out there that can use some of my talents.

Launchpad Winner:

From my email box came news that Anne Cheung was one of the winners of this contest which annually makes a cash award to five individuals who have designed projects to transform their community.  Anne’s Big Idea: Cancer patients face tremendously daunting tasks in managing and coping with their disease. Chinese-American cancer patients with limited English proficiency suffer additional uncertainty and emotional stress because of a lack of information and support in their native language. In a 2005-2007 survey, 65 percent of working-age Chinese adults and 90 percent of elderly Chinese in New York had English limitations. I would like to help to develop a Chinese cancer support group, which will provide information and psychosocial support in Chinese to these patients in New York.  (http://launchpad.encore.org)

Unraveling:

A while back we published our first fictional work by a woman who was inspired by the struggles of her mother and brother, both diagnosed with astrocytomas.  We are sad to announce that Marissa’s brother passed away last month.  The following is excerpted from her eulogy: I’m going to be travelling on a long trip, starting this summer. I asked Mickey what peaks he would climb if he was still able. We agreed on a list of 11 peaks, throughout the Pacific Coast of both North & South America. So, leave a message to Mickey on the sheet, and it’ll be cut into 11 pieces. I’ll leave a piece at the summit of each peak. As many of us can attest, sometimes the people that inspire us the most, are our next door neighbors, our football coaches, our siblings, or our ski instructors. So, thanks in advance for participating in this journey, dedicated to Mickey, and my luckiness to have him as brother.

But, no matter what, I feel the same as most of you feel: Mickey always wanted the best for everyone. I didn’t just lose a brother; like you, I lost a friend. A friend that knew me my whole life! - Unravel Cancer: Experiences with family battling cancer

Shared Cancer Experiences:

Terry Halsey wrote me recently.  Terry has an interesting website, an experimental resource, a repository of personal cancer stories.  Some stories are written by blog-authors.  Others are by persons who simply responded to this offer to share their stories.  What is unique here is a collection of accessible experiences organized from one cover page.  It’s a good place to start from someone just diagnosed, someone with an impulse to share.  Terry is looking for ideas and more stories.  If you haven’t had the opportunity to tell your own story, if your own blog seems like too big a step, this could be a good outlet. Even if you have your own blog, this is yet another avenue to be heard.  And the link to Steve Dunn’s work is worth the visit.  The internet is big enough for all our collected narratives.  – Shared Experience Cancer Support Database

National Cancer Survivors Day:

It’s coming up in a couple of months.  Information and merchandise at www.ncsd.org

Daria

With cancer things can happen rapidly.  And we are, all of us, inexorably, moving on.

Just Saturday I received the following comment from Denise, a member of our little blogging community: “Shades of Blue (ovarian), Shoppingkarma (ovarian)and Livingwithcancer (Breast) are all now in hospice care. Pateeta, Jayne and Daria are wonderful women whom have provided me with courage and inspiration. If you have prayers to send, I’m sure they’d be happy to receive. God Bless all who suffer.”

Before writing the post I checked on all three, only to discover that Daria Maluta (Living with Cancer) has died.  When I first started Being Cancer, not really knowing in what direction this site would go, I would search out and visit various personal cancer blogs, wanting to build a little blogroll.  On nearly every blog I discovered, I noticed a little note of encouragement from a woman named Daria.  Eventually I received my own note.  Indeed every time I would come down with a virus or infection, I could count on a short note from her.

I try to keep tabs on nearly 1400 bloggers so I know a little about this unique community.  But Daria is surely the most prolific commenter that I have encountered.  By her comments you always felt as if you knew her, that she was a friend, that she was in your corner along side you, fighting your fight.  You knew with her few gentle words that she understood what you were going through.  She had an amazing effect on dozens and dozens of survivors whom she never met.  Daria will be missed and mourned.

Her death reminds us of the fear that underscores all of our writing.  In featuring Guest Posts I try to celebrate those moments of clarity, those elegant epiphanies that serve to enlighten us all, to give voice to our collective suffering and triumphs.  Those brilliant moments captured in prose and sometimes in poetry lend meaning and purpose to our experience with that demon called Cancer.  I sometimes revel in the rich detail and nuance found in the writing.  Reading becomes its own kind of pleasurable experience.  It soothes.  It caresses.  It strokes our thoughts and emotions.

So we sometimes forget that what gives the power to those words, what gives the authority to that experience is that, with cancer, we are all flirting with our mortality.  At some time since I diagnosis, we have stood on the doorstep of Death, pushed open the door and peeked inside.  This is the source of power in our blogging – though we do not write for power.  We write because, for whatever reason, we need to.  In Daria we have lost a good one – but she has moved on…

Our Other Cancer Sisters….

Jayne

ShoppingKharma: What comes around goes around

Pateeta

Shades Of Blue