Thank you for visiting my blog

November 23, 2010

Thank you for taking the time to visit my blog. I hope you found some useful and informative material here.

I have relocated the blog to a larger and more informative website and hope you will visit me at Health Recovery Consulting.

Please note that this site is only now monitored infrequently, so please use the link above to connect with the new blog and leave your comments.

Find YOUR doctor, not just A doctor.

July 21, 2010

Recently, I was talking with a friend who mentioned her doctor had recommended she needed to find a specialist pretty quickly. This was the second time her doctor had made that recommendation.  When I asked why she hadn’t done it, she said she didn’t even know where to begin.  For anyone who is suddenly diagnosed with a serious illness or the possibility of a serious illness, determining what steps to take next can be overwhelming.  Finding the right doctor, at a time when our mind is spinning, can seem truly beyond our ability. Often, our physician will refer us to a colleague or we might be expected to look at the list of doctors on our insurance plan and pick one.  Sounds like the easiest and best solution.  But, there is a catch to that solution.

When we are faced with a potential serious long term or life-threatening illness, it becomes critical that whatever doctors we choose to work with are doctors that we trust and like and feel really comfortable with.  While this is true for any doctor, we often settle for the most convenient or easiest get an appointment with. Since we usually see them infrequently for physicals and acute illnesses, we can forgive an abrupt bedside manner or the harried energy.  However, when we will be seeing a doctor frequently, when we have to rely on them for our lives, when we need to be able to comfortably talk about all of our symptoms with them, when we need their undivided attention, it becomes critical that we don’t settle but that we choose.

But choosing, taking the time to interview several doctors, researching who is covered by our insurance plan, getting recommendations, can all be overwhelming when all we can think about is the illness and what it means for us.  That is when it is critical to find an advocate–someone to help you sort out all the pieces, to listen with you at doctor’s appointments, to help you define the questions you need answered and to help those questions get asked.  An advocate can be anyone–a friend, a partner, a child or parent, or a professional who is trained to help.

Several months ago, one of my friends, who was finishing her chemotherapy, said she was glad she was done because now she could start looking for an oncologist she liked and felt good with.   I asked why now and she said because she didn’t feel like she could change doctors once the chemo started, but that she had never really felt comfortable with her oncologist.  She said when she was diagnosed and referred, she had just been in such shock, she had gone along with the referred doctor and then felt stuck. How much harder that makes our treatment and recovery!

It is our life and our health and we need to feel comfortable and informed to make the best decisions and choices. Finding an advocate who can be there with you and for you can make a huge difference.  It will allow you to take the time to find YOUR doctor, not just A doctor for your care. And that can make all the difference in your ability to recover and heal.

What’s wrong with being a Cancer Survivor?

July 9, 2010

After I was diagnosed with  cancer, a friend of mine, who had also been diagnosed with cancer some years earlier, invited me to join a training and fitness group for anyone who had experienced cancer called Capital of Texas Team Survivor.  It was a wonderful message to me that I would survive the cancer experience, which in that time of fear and uncertainty was a very positive message.

But not everyone thinks the term cancer survivor is positive. Recently a friend suggested that from a marketing point of view, Team Survivor did not send the best message to the public nor to those dealing with cancer. Truthfully, this really surprised me. It had been such an empowering idea for me, I was confused why it wouldn’t send a positive message to anyone.

According to Webster, a survivor is “a person regarded as resilient or courageous enough to be able to overcome hardship or misfortune; a person who continues to function or prosper despite hardships or setbacks.”  This really seemed to be a compliment and not much help to understanding why the term might be controversial.

The phrase “cancer survivor” was coined by Dr. Fitzhugh Mullan in an article in the New England Journal of Medicine on July 25, 1985. The article was titled “The seasons of survival: Reflections of a physician with cancer.”   Cancer, in that time, was a very scary diagnosis.  The perception that a person with cancer was destined to die a painful and scary death was common.  To be a survivor sent a very powerful message.  Now, 25 years later, cancer is still scary but many more people are known to be living long after a diagnosis of the disease.  And this has led to confusion and misconceptions about what, exactly, does being a cancer survivor mean.

According to the National Cancer Institute, “an individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life.  Family members, friends, and caregivers are also impacted by the survivorship experience and therefore included in this definition.” The National Coalition for Cancer Survivorship (NCCS) created a definition in 1986, when cancer was  a disease people needed to learn to fight in order to empower patients to makes decisions about their care and to push for better research and treatment.  The NCCS definition also included families and caregivers.

Yet, there is disagreement about the definition and use of the term.  Some don’t want to be considered survivors because they want to consider themselves cured and don’t want to paint a picture that they are still dealing with cancer.  Others say they are living with or journeying with cancer, but don’t want to say they are a survivor because to them it implies they have beaten cancer and the experience is complete.  Some say being a survivor stigmatizes them, makes them different and identifies them as only someone who has experienced cancer, while others don’t think of themselves as a survivor but as a victim of cancer, especially if they are facing end of life issues as a result of the cancer. To some lay public, the term might suggest that a cancer survivor has beaten their cancer, much like an airplane crash survivor lived through the experience but it is over.  For many living with a diagnosis of cancer, the knowledge that a recurrance is possible  lingers in the mind, so this misconception can lead to frustration and misunderstandings.

Yet, there doesn’t seem to be a universally accepted term that is better. And so, I go back to Webster’s definition: “a person who continues to function or prosper despite hardships or setbacks” and I know that is what anyone who has received a diagnosis of cancer is–a person who continues to function despite hardships.  And I am honored that I count myself among them–I am a Cancer Survivor.

Vulnerability. Submission. Trust.

July 1, 2010

Vulnerability.  Submission. Trust.

Those are the messages my little rescue foster dog is sending when she lays on her back and shows her tummy.  And I am gentle and I smile and I rub her tummy and tell her she is a good girl.  And she is rewarded for her trust.

How different I felt  thinking about lying on my back and showing my tummy when I was schedule for abdominal surgery for cancer.  Vulnerable, yes.  Submissive, yes.  Trusting–kind of. About to be violated–totally.

Even after spending many years working in the operating room, it felt so uncomfortable and scary to know it was my turn.  It’s not like I wear a two piece swim suit or show off my abdomen, so just having it exposed is a little embarrassing.  But, then to have it cut open, to have all the things that are supposed to be inside taken out and evaluated and handled, and some of it removed, and then everything put back in just felt scary and, more than vulnerable, it felt violating.  Strangers would know more about me, would have seen more of me, than those closest to me–than even ME!  There would be no hiding behind clothing to look better, no masks to wear or stories to tell.  These people would be able to see me to my very core.  And, it wasn’t that I didn’t trust the doctors and the team to know what they were doing.  I did.  But, I wouldn’t be there to see if they accepted my offer of submission, if they could accept my tummy with a smile and a message that I am ok.

And, it has affected me since the surgery.  The part of me that read the operative report and saw the words “obese”, the part that recognized the extra steps necessary during surgery to make sure I was ok in spite of complicating factors– all those parts of me just wanted to know that I was ok, that I was a “good girl”, that my trust was rewarded with caring and acceptance.

And then, this past week I came across a wonderful book that documents  a woman’s journey with abdominal cancer that required major abdominal surgery.  A passage in that book so moved me and so opened the door to understanding the vulnerability and reward that goes with the trust, that it brought tears to my eyes and heart.

On page 131 in Between Me and the River: Living Beyond Cancer: A Memoir by Carrie Host, she writes:

“I’m telling him, ‘I’m just really scared, I feel like they’re just going to slice me open like a fish.  It will be so violating, in every way.  My solar plexus…well..I’ll just be lying there, cut wide open, totally exposed in the worst way.’…As usual Dr. Gottlieb is not in a hurry to rush for words… Calmly, he proceeds to describe surgery for me, as only he could.

‘Actually, during a surgery where they are working to save a person’s life, it can be spiritual in many ways.  The operating room itself is bright, clean and quiet.  There is light everywhere. Your body will be meticulously draped to cover everything but the area that they will be working on.  Every tool and necessary object is in its place, waiting to be used.  The doctors and nurses are standing in a kind of circle around you, with the anesthesiologist at your head, all focused on the same goal.  It is a powerful and moving sight.  I invite you to imagine that when Dr. Nagorney opens your abdomen, it will then be flooded with light.  Then still more lights will be added to that.  I have observed a number of surgeries and many of them are really beautiful.'”

And I remembered my experiences working in the operating room.  How reverent and non-judgemental we felt, how focused on making things right we were.  It really is a healing circle, bringing in healing light.

I have come to realize that I was vulnerable and I trusted that I would be safe at a time I couldn’t trust my own body to keep me safe.  And, I got the smile and  tummy rub and  “good girl”.  My surgeons created a way for light to enter my body—healing bright white light.  What a gift.  So, thank you to the surgeons and surgical teams that understand the power of bringing light to those vulnerable areas shrouded in darkness, to smile and rub our tummy and let us know we sere safe in our vulnerability, that is was right to trust.

Size doesn’t matter but density does

June 25, 2010

An article published recently in the Los Angeles Times, Breast Density Linked to Cancer Risk, reports that density of the breast tissue is a bigger indicator of breast cancer risk than family history.  And, this might be one of the best kept secrets.

The link between breast tissue density and breast cancer has been known since the 1970’s, but it has only been recently that researchers and cancer specialists have accepted the relationship as important. While the scientific community  admits is could help identify women of high risk, it isn’t yet a widely known nor measured clinically significantly marker. Part of the challenge is creating a universally accepted measurement of breast density.  While radiologists have traditionally measured the density of the breast, it was not to determine the cancer risk but as an indicator of how difficult the mammogram is to read.  So, even though the density has been recorded, it was not recognized as a useful reporting tool for screening until recently.

Last year, a law passed in Connecticut requires that breast density must be included in mammogram reports.  This allows a woman to track her density over time and take precautionary steps if she has dense breasts, such as more frequent clinical exams or MRI’s to supplement or replace mammograms.  Studies show that women’s breast density can change over time and so does the risk of breast cancer, so tracking an increase or decrease in density can change the precautions  and actions a woman chooses. For example, a woman with very dense breasts may choose to forgo taking hormone replace therapy during menopause as they may contribute to breast cancer risk as well.

There are several challenges to using the density of breast tissue to determine cancer risk.  The first is developing a workable rating system.  The system used by radiologists, while helpful, is subjective and very basic.  It a 4 level system, with 1 being predominately fat and 4 being very dense.  Finding an easily quantifiable and measurable tool that is universal will take some time to develop and ensure the usefulness of accuracy in assessment.  Secondly, educating women to the importance of knowing their breast density and utilizing that information to help decrease the risk is a long-term undertaking.

We can be pro-active.  Ask your doctor to request your density be included in the report at your next mammogram.

It Was All in My Head

June 8, 2010

In my continuing quest to take my life back and own my body, rather than being controlled by my body, I made a momentous decision.  I committed to training with a group of Cancer Survivors to participate in the Danskin Triathlon.  Little did I know how profound that decision would be.

At almost 90 pounds over my ideal weight, way into middle age (55 years old) and a body experiencing the difficulties that accumulate from life (back injury, surgery, broken bones, etc.), I got off my rather expansive butt and decided to do something different.

Like many overweight people, I was uncomfortable with the thought of working out with “athletes” and figured I would be “different”, perhaps even laughed at or, at best,  tolerated and I knew I would not be able to keep up with most, if not all, of the others in the group, but I put that aside and did it anyway.  What I discovered: all of that was in my own head.  No one laughed, no one tolerated, no one “put up” with the fat girl.  They were supportive and enthusiastic and willingly accommodating.  The coaches, the other participants, everyone just wanted to see everyone else succeed.  How incredible!

So, train I did.  For 12 weeks.  And then, the day of the Danskin arrived (I would say dawned, but the Danskin started long before dawn).  We arrived in the dark (5 am) to set up for the day. The triathlon included a 1/2 mile lake swim, a 12 mile bike ride (open road, hills, you name it) and a 3.1 mile walk/run on grass through fields and over dale.  Oh, yeah.  Did I mention I have asthma?

But, what I really want to share is that I DID IT.  Those people I was so afraid would laugh at me and be so much better than me–the ones that often, in my mind, kept me from making the choice to make a difference–those people didn’t laugh at me or abandon me.  Those people stayed with me and supported me and allowed me to support them, each in our own way.  And, we all finished.  It took 3 hours, 58 minutes and 43 seconds to finish the course and finish it we did. I did it while still almost 75 pounds overweight, 55 years old and with all the same problems, but I DID IT.

It brought home to me how ridiculous the self talk and embarrassment and all the reasons I gave myself to not do something are.  It was all in MY head.  Everyone has something they must overcome and everyone has the talk in their head.  The key is to step outside the internal chatter and just do it (do I sound like a Nike commercial here?).  I know, at least for me, it was easier said than done.  But then, I look at the wonderful people who journey with cancer and journey with obesity and journey with asthma and journey with back injuries (you get the idea), and still do it.

And, now, I, too, am one of those people.  And you can be too.

Come join me on the journey to just do it, to take control back over your life and your body and please, along the way, share your journey so we can experience your triumphs and support you and welcome you back to a place of controlling your own destiny.

P.S.  This post is dedicated to Capital of Texas Team Survivor.  You go, ladies! You are incredible.

Feeling frustrated? Foggy-headed? Try drinking some water.

June 3, 2010

Most of us have been told that we should drink at least 8 glasses of water per day to keep ourselves hydrated.  There are lots of reasons touted as to why this would be important–to keep our kidneys functioning correctly, to keep our skin looking vibrant and healthy, to prevent constipation, to give us more energy, to lose weight. Now we can add two new reasons for drinking water–to decrease crankiness and frustration and lift our mood and to improve our cognitive abilities.

In a study done by Kristen D’Anci of Tufts University and recently published in Perceptual and Motor Skills, young, healthy athletes participated in a study  of the cognitive and mood effects of mild dehydration (the equivalent to a busy office worker not drinking enough during the day).  The results showed that those allowed to achieve mild dehydration exhibited more anger and frustration as well as a “down” mood after the session than those that maintained their hydration.  Additionally, those who were slightly dehydrated performed much less well on the cognitive tests administered after the session than those that were well hydrated.

So, the next time you find yourself feeling a little foggy-headed or getting easily frustrated with a task, ask yourself when you last had a drink of water.  Getting a glass of water just might make you able to finish that task or project much easier.

Lack of core muscle flexibility could indicate blood pressure problems

May 16, 2010

The ability to stretch and touch our toes has long been an indicator of overall flexibility, but now it might also be a tool to determine the risk of blood pressure and cardiovascular problems.

Blood pressure is a measure of how flexible and stretchable the arteries of the body are.  Arteries carry the blood containing oxygen and nutrients from the heart throughout the body.  The amount of stretchability and flexibility of the arteries determines how hard the heart must work to push the blood throughout the body.  Stiff arteries make the heart work much harder.  This leads to increased risk for heart attack and stroke.

Testing for arterial rigidity and stiffness usually requires special equipment available only in specialized doctor’s office, hospitals and labs.  But in a study by Kenta Yamamoto, Hiroshi Kawano, Yuko Gando, Mitsuru Higuchi, et. al, published in the American Journal of Physiology – Heart and Circulatory Physiology October 2009, research indicates that in middle and older age (40 + years), core muscle flexibility, as measured by the  “sit-and-reach” test, may be a simple method of determining arterial flexibility and risk for heart attack and stroke. (A summary of the study can be found at Medical News Today).

There are many theories why muscle flexibility and arterial flexibility are related, but a number of studies have indicated that decreasing flexibility in the muscles of the low back and core in middle age and older age  correlates to  decreased flexibility of the muscles of the vascular system, leading to increased blood pressure.  The relationship does not appear to apply to people younger than 40.

So, what does this mean?  The researchers suggest that incorporating stretching, such as yoga or Pilates, into daily routines could have a significant impact on heart and circulatory health, especially for those over 40. “These findings suggest a possibility that improving flexibility induced by the stretching exercise may be capable of modifying age-related arterial stiffening in middle-aged and older adults,” Dr. Yamamoto said. “We believe that flexibility exercise, such as stretching, yoga and Pilates, should be integrated as a new recommendation into the known cardiovascular benefits of regular exercise.”

There are many yoga and pilates classes designed for middle age and older adults that  help increase flexibility while accommodating injuries, etc.  Some are also available online to make it easy to do from home.  For some suggestions, check out Abby Lentz at HeartFelt Yoga or Kate Wodash at Mindful Body Center.

As Mother’s Day approaches, I hear my mother and grandmother whispering.

May 6, 2010

In honor of Mother’s Day and to acknowledge my mom and my grandma, who I am missing a lot today, I share this poem.

Visitation
Deborah Gordon Cooper

On Tuesday
in the produce aisle,
choosing my oranges by feel
and by their fragrance,
I hear my father
whistling in my ear.
A Scottish lullaby.
Everything else stops.

There is a tenderness no border can contain.
A web that may be glimpsed
in certain, unexpected plays of light, or felt
like a shawl
across one’s shoulders
laid by unseen hands.

There are sounds in other decibels
the heart can hear
when the wind is right
and the mind has quieted its clicking.
The border guards are sleeping
at their stations.
Spritis come and go.

The wall between the living and the dead
is as yielding as a membrane,
is as porous as a skin.
Lay your palm against it
and you can hear their voices
in your hand
and in the place where the chest opens
like a flower.

They are not far away,
no farther than the breath
and enter us as easily,
in pine and peonies,
in oranges and rain.

Good-bye Lynn Redgrave–Rest in Peace

May 5, 2010

Lynn Redgrave (for more about her, see blog in Ms. Magazine)  is gone after a 7 year journey with breast cancer.  How powerful and how sad, and how close to home that hits for so many of us.  Breast cancer is so sneaky and tenacious.  How brave are those who journey with this companion–who know so many who have travelled long with breast cancer as a companion, but also know many who have travelled but a short time.  It always brings our mortality home when someone who is journeying with cancer dies, but it is especially poignant for those who have experienced the journey themselves.

It is critical that we stay aware and focused on the steps necessary to prevent the journey with this disease–for all.  Ladies, get your mammograms, remember monthly self exams, get your pap smears, do whatever it takes to catch it early on the journey. And men, you are not exempt from self exams and tests.  Better yet, take action to prevent it in the first place–eat healthy foods, stop smoking or don’t start, check your vitamin D levels and supplement if necessary, know your family history and risk factors.

The journey with cancer is becoming way too common.  Please don’t join us on the journey.  As my friend Barbara, one of the founders of Capital of Texas Team Survivor said yesterday to a new member “We are glad you are here but sorry you qualify.”  Our wish would be that no one else need join this group and that we can get to know you without having to travel this journey with cancer together.

So, Lynn, may your journey shed light and hope and save lives.  Rest in peace.

NOTE: The photo is by her daughter Annabel Clark, August 2003, after surgery, chemo and radiation.