Boobs On Ice™

Fear: Looking For An Antidote with Susan Piver

What's with the cancer blog? Has it turned into my book review spot? Well - that's not exactly what's happening.

What's going on is that I'm a lucky woman in many ways.

And one of the nice things that has happened to me is that I was most flattered to receive this book - How Not to Be Afraid of Your Own Life: Opening Your Heart to Confidence, Intimacy, and Joy - as a gift from author Susan Piver who I am blessed to know via twitter.

I found it inspiring to read of the author's own experiences and how she used Buddhist techniques to live a life of joy, not fear. That alone is a daunting job and this is a book I'll keep nearby in the months ahead as I continue through the next five years of my cancer treatment.

First it should be said that I'm a pragmatic woman and not entirely someone you'd point at and say: Oh she's definitely the "meditation" type, though living through the seventies it would be hard for me to have missed attending numerous classes in that vein.But I'm a believer in the power of periods of quiet and spirituality.

And there's a real grace and charm in this book as well. Susan writes in a practical, down to earth way. If something works for you or the ideas she writes about resonate with you, she suggests that we use them. Conversely she'd hope that if it's not helpful, we just let it go.

She's not full of dogma and lecture but full of grace and generosity. And the same can be said for her book. Now I pick it up and read it with some regularity and have found it to be an excellent resource.

From the viewpoint of a cancer patient trying to come to grips with a new reality the book is full of helpful suggestions. I'd think that it would also be useful to anyone willing to see potential of others' beliefs and practices as well as looking for ways to infuse their life with peace, even in small doses.

Any doses of peace and joy are fine with me these days. Thanks Susan.

The Pea Fund and the Kindle Pipedream

The new Kindle looks cute in pink - but not cute enough for me to want just because it's a nifty color. And the fact that along with lots of cancer patients I can't afford one now doesn't mean I don't want the first generation kindle as is, whatever color.

But when I hear about the new technology in the model coming later this year I might have to hold that thought of voracious "wanting" in the here and now. Should I in fact be thankful that there's not the money in the cookie jar for this extra?

Maybe. because allegedly the new one is even better. The last issue is will the price stay the same or might it drop as did the iphone? That could make all the difference.

On the other hand Amazin' Amazon could come up with a pea green model and donate some to the Frozen Pea Fund for patient use. I'd have to try it out wouldn't I?

Or so what if it wasn't green. What if it was just a Kindle with a sticker to show that we have friends helping us stand up against cancer.

Ah, now THAT would be a brilliant use of web 2.0 and the social media space inside all our heads. Patients do sit around at doctors' appointments and have a lot of down time in general. What could be better than having a kindle to keep us company and in touch?

And what could be better for Amazon than to have a Kindle in hundreds of hands in hospitals and doctors' offices and cafes and - well spread across the country? Which all goes to show that I may be sick but my brain's not dead yet.

More important however is this question. Who's going to pitch this at Amazon?

I Wish We Would Have Known

What to Expect of Cancer

• Supportive Care - fatigue - DanaFarber 

• Supportive Care - Pain - DanaFarber

• Fever, Sweats, Hot Flashes in Cancer patients

• Breast Cancer Treatment (PDQ®)

  from a German website, attributed to the National Cancer Iinstitute in the US. Clear guidelines & descriptions of stages, what might be done, etc.

  

Spread of Cancer / Metastasis

• Breast Cancer - resources - info - more about spread to bone - Merck Manual   Radiation therapy is usually the most effective treatment for cancer that has spread to bone, sometimes keeping it in check for years

• Metastatic Cancer: Q&A - National Cancer Institute

• NCI National Organizations Database
  

    Numerous organizations and facilities provide services to people with cancer and our database
  contains many, but not all of them.

• CancerCare: Update on Metastatic Breast Cancer
  

    3 cancer docs discuss updates about breast cancer that has metastasized - spread to other parts of the body

Cancer Issues: Symptoms Signs and Side Effects

• CancerCare : Difficult Side Effects of Breast Cancer Treatment: Memory Changes, Lymphedema & Neuropathy
  

    60 minute podcast with answers from cancer specialists in these specific areas

• UCLA > News: Debilitating Cancer Fatigue
    A survey of cancer patients several years ago reported that 32% reported debilitating tiredness every day, 21% on most  days and 14% at least once a week.
  
  Twelve percent of the patients sampled in the survey actually said that they would rather
  be dead than have the severe fatigue that they were experiencing.

And these things may be of some help

• Yes, most cancer patients rank fatigue more bothersome than pain.  A download PDF is at this link

• Cancer Fatigue Treated w/Modafinil: Presented at ASCO

   
• Turmeric - Alzheimer’s and Cancer Beater
•  

  Lotsa Helping Hands  

    It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion.

 

Calgon Take Me Away: Pain - Relaxation Resources Needed

After all the excitement (that's a nice word for it) of the last week concerning pain management hurdles and doctors and bone scans and who will see which patients and a getting a second surgery scheduled for June and just yesterday learning that my reconstructive guru is leaving GW for New York at the end of July - insert screaming in frustration here -  I need a break.

How about a nice Downloadable Relaxation/Guided Imagery Session?

I haven't listened to this MP3 but I'm going to right now, I need time and a way to hopefully enhance my pain medication  kicking in. It's not one of the better mornings I've had and I've yet to really do anything - but it would be nice to spend the rest of Saturday with my spouse who will then be doing a corporate retreat for a few days and I'd rather our conversation not be focused on when I last took my pain meds.

It would be nice if not all our time involved him going to appointments with me and dealing with my limitations at home. If I were he I'd need a retreat too. OK, I do need a retreat, lets face it,

In any case, for now relaxation it is - to try to enhance the 2 doses of meds I've had so far today - and this is the one I'm going to check out:

MP3 - reported to be near CD quality, downloads to computer for later listening at your convenience. From The Wellness Community

                    Voice Only (22:00, 10MB)
                    Voice With Music (22:30, 10.3MB)

If you have other suggestions that are free or low cost to everyone - or to special populations - please let us know in the comments. I'm so ready to be taken off to another place, whether it's in my mind or dragging my body along as well.

Need an MP3 player? Get one here: WinAmp (Windows)  QuickTime7

 

Cancer Fatigue; It Feels Like Death

Most people don't know this but most days I live in one room. And it's not because I want to. Truthfully, I'm so exhausted that going downstairs three times a week is a treat. And an exhausting and humbling experience.

I'm not entirely alone but there's not a whole lot known about general cancer fatigue. WhyMommy talks about radiation fatigue. But I'm not undergoing radiation. Derek Miller talks about chemotherapy fatigue. At this point I'm not even healthy enough for mid level chemo, so that's not my issue.

But before long, good scientist that she is, WhyMommy was sure to get to the bottom of it and twitter-linked to this cancer patient and doctor last night. Finally someone else who recognizes that overwhelming wall of fatigue we're dealing with.

Martha Jane Poulson MD writes

"In an effort to be encouraging, many colleagues reassured me that many women with breast cancer continue with all their family responsibilities as well as work full time.

"Rather than helping me, this made me feel somewhat inadequate or lazy because I was so tired. It also led me to fear that my fatigue was all in my head and that if I could only get a grip on my emotion I would be more productive."

In a review or studies on cancer fatigue Dr. Oliver Minton,  a clinical researcher at St. George’s University of London was quoted as saying:

“Fatigue is difficult to treat as it usually has a number of contributory causes — many of which are not fully understood. Patients and professionals alike may consider tiredness as an unavoidable part of cancer treatment, rather than a problem to recognize and address."

Platitudes and Attitudes

Among other therapy, drugs can improve some symptoms of fatigue in patients, but apparently in most, doctors think fatigue is to be expected, thus do nothing to treat it aside from provide platitudes.

Before her death in 2001 Dr Poulson wrote in depth about the debilitating effects both fatigue and the attitude of her colleagues and care providers had on her system and her life

"While exercising or a nap may be helpful suggestions to normally fatigued persons, these may not be the solutions for cancer fatigue." 

Any Time at All

I was not prepared for this kind of crushing exhaustion three months after surgery but now discover that it is not only not unusual during treatment or but can occur at any time in patients with more advanced disease. That it could hit increasingly as it seems to, is a shock.

As Doctor Minton points out after having analyzed 27 studies of 6,746 participants that examined the effectiveness of certain drugs for relieving symptoms of cancer-related fatigue:

"It can hit at any time - even when they are free of cancer. There may be options for treating it at all of these stages,”

 

Read more about Jane Poulson in her autobiography, finished shortly before she died.

.

Reference: Center For The Advancement Of Health. "Anemia Drugs And Stimulants Ease Exhaustion In Some Cancer Patients." ScienceDaily 28 January 2008. 31 March 2008 http://www.sciencedaily.com/releases/2008/01/080124203258.htm  

Cancer Publications Sadly Miss the Mark

Good news! I found this publication available from the National Cancer Institute:  Get Relief From Cancer Pain

Sounds helpful, right? Giving us up to date suggestions? The latest information, right?

I mean after all, it's from the National Cancer Institute. But the thing is . . not really.

The publication, and it's generous to even call it that, contains almost nothing of value; is written on about a third grade level and passes on next to nothing aside from generalizations.

I went back to looking at the information abstract. I wondered how they viewed what they were distributing.

Audience:  Low Literacy, Cancer Patient
An easy-to-read brochure to inform patients that medicine and other treatments almost always can relieve cancer pain. The patient is encouraged to talk to his or her doctor or nurse as soon as cancer pain begins. 5/1994 Last Printed:  5/1/1994

In essence what they said in those two sentences is what the brochure contained in it's entirety. Bla bla bla.

So after I had no luck finding anything specified for those of us who want more information than we could get from our babysitter, but thinking this sad condition about their literature surely can't be the case across the board, I picked out other publications at random to check for how informative and up to date they were.

"Eating Hints for Cancer Patients: Before, During and After Treatment was last published 7/1/1997. Please don't make me describe it. We're supposed to eat well. Ahem.

The most recent I found - published last year- Managing Radiation Therapy Side Effects: What To Do When You Feel Weak or Tired (Fatigue) was a one page sheet And although it is about twenty times improved over what I'd seem previously it contained some gems of advice like like: be active if you can and rest if you need to.

I think my neighbor who's six years old may have polled her class to get those suggestions.

And o.k. fine, I'd like to have the NCI spend most of it's income on research so we can kick cancer to the curb once and for all but in the meantime we all have to deal with sharing what we know. And from what I see here, reaching out to share helpful information with patients has really gotten the short straw lately with the National Cancer Institute.

This isn't to say there is not good information out there. And some of it may be available from the NCI.

But the average patient should not have to be a research librarian to find helpful, timely and intelligent information when they need it. That means when they are in pain. Or when they are not able to eat right. Or when they are feeling exhausted from treatments.

Those are the times that our researching skills may be the worst. And when getting information winds up being hardest.

So what should organizations do with their outdated, unwieldy and just plain dumb information?

After tossing a good portion of what they've got from the 1900s in the dustbin of the past, I suggest that they Develop - Expand - Multiply - Organize - Update and Share it!

Talk to us like real people. Give us more then we need, not less. Assume we want suggestions and details and cold hard facts too. Know that we want both the practical and the data. We're complex people with complex illnesses and challenging lives to live. If you want to help us don't gloss over things or write paragraphs with lots of words that say nothing.

And for heaven's sake don't talk down to us. Just because we are battling cancer does not mean we checked our brains at the door.