Archive for the ‘The journey after cancer’ Category

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.

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.

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.

Side effects may include…and for me they do!

April 28, 2010

Have you ever listened to a drug commercial and after hearing the possible side effects wondered who would take the drug? The tone of the commercial or insert would lead you to believe that the side effects are rare.  I question how rare they can be.  After all, a side effect is like a weed.  It is only a side effect because it isn’t the reason you are taking the drug–just like a weed is a weed because it isn’t growing where you want it.

For a complete explanation, you can check out this Medterms website

Let’s use Aspirin as an example.   Aspirin does a lot of things in the body.  It makes the blood thinner and decreasing clotting, it relieves pain, it lowers fever, and it decreases inflammation.  If you are taking an aspirin a day for heart health, you are taking it to decrease clotting.  If you are taking if for head ache, you are taking it for pain.  However, the aspirin doesn’t know you only want it to relieve the pain, so if you are taking it for a headache, it still decreases your clotting and decreases inflammation.  Those are the side effects.

It turns out, I seem to notice and experience side effects of almost every medication I have to take.  But, you know, those side effects can be sneaky and subtle and can easily be confused for another problem.  It takes diligence to read the inserts and know how the medication’s side effects can be experienced.  Too often, the side effect is treated as a separate problem and a new medicine is prescribed to relieve the symptom, when really it only required a different medication in the first place.

This can be tricky, though, if a person is taking a number of medications, like I am.  As I was reviewing my recent symptoms (thank you to all my friends for pointing out that I have been complaining of them for a while and needed to do something about them), I have come to realize that the side effects of several of my medications are all the same.

All I can say, is Good Luck Docs, in figuring out which ones to change.

In the meantime, I am doing everything in my power to take my health back and do away with all these unhealthy chemicals called drugs.

The switch from “want to want to” to “want to”.

April 21, 2010

I don’t know what switch was turned on for me.  For years I have been overweight and frustrated by it, and complained about it, and threatened to so something about it, but it was more of a want to want to than an actual want to.  I knew it was unhealthy and I knew I “should” do something about it (I am really good at “shoulding” on myself).  Many of my friends were, and are,  very encouraging, but still I did nothing.

Then the cancer was diagnosed (a cancer that is fed and supported in its development by the excess estrogen produced in fat cells) and still I wanted to want to but did nothing.  I talked about doing something, I laid elaborate plans for things I would do that I didn’t do.  I even joined a gym and kind of went, but didn’t really push it much while I was there.

I got the operation report for my cancer surgery and read all about the problems encountered and actions taken as a result of my obesity, but still could only find the “want to want to” in myself.  I attended support groups, nutritional counseling and in-depth workshops.  They all supported my fantasy that I was doing something, but I was still not moving my body nor changing my eating.

Then, one day, I was.  I signed up to participate in training for a triathlon (the Danskin) and I knew I would probably be the heaviest and most out of shape person there (I still am) and it was scary and uncomfortable and yet, suddenly, I was willing to go.  I was suddenly willing to do what it takes to take control back over my life, my body, my health–everything.  I wish I could pinpoint what made the switch turn on.  If I could do that, I could make a fortune turning everyone elses “want to want to” to a “want to”.  But I can’t.  All I know is that finding a set goal and a set group of people who could provide the tools without judgment to get me there, who could see for me what I couldn’t see for and in myself, has been a huge part of it.  It would seem that in my endless planning and attempting that I actually put myself in the way of the answer for me.

So, I am training (not as hard as some of the others, but training none the less) 5 days a week.  And, while not a flattering picture of me in any way, here is proof that it doesn’t matter how big I am or how out of shape I am, I CAN DO IT if I just decide to. And so can you, when you decide.

I would love to hear about your journey from “want to want to” to “want to.”

Meltdowns and other manifestations of fatigue and stress

April 16, 2010

I was recently reading the blog from Cancer Bitch about meltdowns and thought it was incredibly timely.  I, too, have been in meltdown.  And, for no good reason.  Except fatigue and stress.  It doesn’t feel acceptable to blame the cancer or the treatment, even though i want to, kind of.  My treatment was over almost 15 months ago.  Supposedly, the cancer is gone. But, nonetheless, I just wanted to cry. And cry. And pull the covers up and cry.

True, I am training to participate in my first Danskin triathlon. And the training is hard and my body is fighting back and I am exhausted and I hurt and I am totally graceless and awkward and frustrated and resigned and you name it. And then, yesterday I just wanted to cry. For no particular reason. I just wanted to cry. And I can’t blame it on treatment or chemo or anything. And, it has been 15 months and I should be ok and, and, and…… But I just wanted to cry. But, of course,  I didn’t cry because I didn’t have a reason.

Interesting how I had to have a reason–a socially acceptable reason- to allow myself to feel and express that feeling.  I wonder if some of the fatigue I am feeling comes from my unwillingness to just feel what I feel. Why, I wonder, do I need to have permission and validation to have and express feelings?  How interesting it is that I assume that because I am not currently in treatment or actively manifesting the disease that I should believe that would be the only reason I can use to justify a meltdown.  I can’t just feel stressed and fatigued because I am working hard to catch up on debt from medical treatments or a down economy, or stressed because I am eating differently and moving my body more, or stressed because I am taking on several new projects, including writing a book and presenting a number of workshops.  For some reason, I believe I should be able to handle all of these without being stressed. What???!!!  What is that all about?

What I am realizing is that life is stressful without journeying with cancer.  We all feel stress and everyone has a right to feel that and express it.  If it means crying, then by crying.  If it means cuddling and sleeping, then by cuddling and sleeping.  Meltdowns are the body’s way of saying “you aren’t dealing with this.  You have forgotten to take care of me.”

Once I realized that expressing what I am feeling is the first step in taking care of me, last night I chose to just cry.

And then, today, in the mail, I got the results from my most recent cancer screen and it was negative.  And, for a moment, I thought “See, I have a reason to be stressed.  I was waiting for these results.” Perhaps.  But, do I really need a justified reason—still?

Maybe.

Some thoughts about fear.

April 13, 2010

Cancer is a scary word. Cancer is a scary thing.  Living with cancer is often a life of uncertainty, a loss of control and, some would say, scary.  But so many of us (all of us?) live with fear. And it is interesting how our decisions are so influenced by fear.  Not just those living with cancer, but all of us.  And even before we found cancer, we often found ourselves living in fear.

Recently, on a street very close to my house, several people waiting for a bus were killed when a driver lost control of his car on a curve and hit them.  Fear totally directed that young man’s decisions in driving that car.  Out of fear of not being important or good enough, he challenged another driver to race him at the stoplight.  He had to prove himself to a total stranger to feel good enough out of fear of not being enough. He was doing 80 miles an hour when he got to the curve posted for 35.  He ended up justifying his fear–he killed two people and injured another.  Wow! Fear of not being good enough led him to make choices that reinforced the feeling of not being good enough.

But, for most of us the decisions we make are much more subtle. One of my friends recently purchased a gift for her nephew’s birthday.  She spent a lot of time thinking about the perfect gift, then found a small local store to purchase the item from. It was an electric guitar.  After a lot of discussion with the store owner, she purchased a guitar that was in stock rather than order the exact one she wanted and, while it wasn’t exactly what she had envisioned it, she was very happy with it.  Until she got home.  The more she thought about what she had wanted and what she had purchased, the more she wished she had ordered the one she original envisioned.  But, she was too afraid to take it back.  She would have purchased one from another store before taking it back because “she was embarrassed and afraid to look stupid.”  Her fear wound up costing her several hundred dollars.

So, perhaps most of us would have taken the guitar back. But how many times each day do we make choices out of fear.  Fear of not being good enough, fear of not having enough, fear of being unworthy or unlikable or unloved?  Every time we hold back, every time we take the easy way out, we can trace it to fear.  Yesterday, I finally made a phone call that has been on my to do list for a week–just because I felt afraid.  Once I made the call, it was actually pretty easy.

I used to hold myself back from exercise or active events out of fear–fear I would look stupid, fear I would be awkward, fear I wouldn’t be as good as every one else. Wow! I would compromise my own health out of fear. Fear of being embarrassed due to being out of shape and overweight led me to make decisions to not exercise to get into shape. (Not really much different than the young man in the car, really.)And the interesting thing is, I am not alone.  I have met many and know many people who have the same fear based decision making pattern. People who are struggling financially who don’t open bills when they come, people who are having a hard time getting customers who are afraid to go to networking meetings, people who are having slow sales but are afraid to do calls.  Our fears just reinforce our beliefs that lead to the fear.  But how incredible when we bypass the fear and just do it (ok, so I stole that from Nike:)).

I finally committed to a training program.  And, while it certainly isn’t always comfortable (I am the heaviest and most out of shape in the group) and I often cannot do what everyone else can, I have learned to laugh at myself in a gentle way.  And, it really isn’t as bad in reality as it is in my mind.  IF you could have seen me last night trying to balance on the bosu, you would have cracked up.  As did I.  And guess what! No one else in the group even cared.  They were too worried about what they were doing to laugh at me.  And that is the key.  People really are much less judgmental toward us than we are to ourselves.

(BTW, this is not me on the bosu.   I only wish I was this steady on it–I could barely stay on it with both feet:))

So, where does fear hold you back? Where could you find one fear to bypass today and just do it?