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Archive for the ‘Attitude’ Category

 

It has been a long time since I’ve posted anything in the breast cancer journal. My journaling has taken another path – it is not online, and it is not about being a breast cancer survivor. My mother died in August and a lot of what I have been writing about privately describes my journey through grief.

On August 11, 2010, I went to Denver for my check-up with the doctor at the imaging center and my oncologist. The doctor at the imaging center looks at the mammogram and ultrasound results during my visit, so I knew by the time I was on my way home that I was still NED (no evidence of disease). My oncologist wanted me to have another mammogram and a visit with her in six months; after that, my mammogram schedule would be once a year. She reminded me that it was almost five years since my diagnosis, and at the five-year milestone, my risk of recurrence would go down so significantly that it would be about the same as for all other women in my age category.

On my way home from the hospital, I called my family to let my mother, who was out of town for a medical procedure, know that my check-up was good, and Mom was very happy about that. The following day, unexpectedly, my mother died during the procedure.

Now it’s January, and in one week, it will be five months since my mother died, which seems impossible. And a month after that, it will be time for my six-month checkup, the last one before my anniversary, and a month later, it will be March, five years from my diagnosis, and the milestone that has been my goal: stay cancer free for five years.

In the meantime, I am not feeling well – I am so tired, I am not sleeping well, I have headaches, I was not eating right. For a while, I didn’t have much of an appetite. When I did, rather than going back to my  low-fat diet, I began eating comfort food. This week, I brought home bags of fresh green vegetables and am determined to start eating right again. I fluctuate between feeling relief of getting to that five-year mark and the nagging stress of not feeling well and needing one more round of tests before the anniversary to make sure I am still okay.

Things that go through my head, that I try to dismiss:  Why am I so tired – as tired as I was when I had cancer? Because my cancer is back, or because I am grieving and not sleeping well?  What about my headaches? When reading, why do I see “red bed and butter” instead of “rye bread and butter”? Why am I having trouble with my speech? Because I’m getting aphasia, or because I didn’t rest well? Why am I so forgetful? Are these real and lasting memory problems, or is it just stress?

Those are things I wouldn’t admit to my friends, but somehow am okay with posting on the internet where other survivors can read them, because I know you understand what I’m talking about.

Underneath all of this, I somehow feel settled about things. Although I hate it when people say my mother “is in a better place,” I believe that my mother is okay and that she will always be present to me in ways that are more palpable than memory, because she is my mother, and she will not abandon me (a wonderful thing a friend said to me). I believe that I am probably still cancer free and will get through my checkup okay and that the lumps under my arm are from something else and will go away. And if they aren’t gone in two weeks, I will make an appointment to have them checked, as I do with other things that don’t go away. I believe that grief is a non-linear, inescapable process, part of being a human being, and I vow to try to learn from my children, who have lost their fathers, how to live with it with dignity.

And I believe that even if I don’t remain cancer-free, we are all playing our part in the unrelenting and majestic evolution of the cosmos, and I believe in what some people call the communion of saints or souls, and some people call the cosmic consciousness, and, as my sister says, “I believe in the seen and the unseen.” And I hope to learn courage from others who have gone before me.

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The last days of October. The sky in the north looks wintery today but the sun is out and suddenly I realize the meadowlark is back from springtime, sitting in a tree instead of the top of a pole, singing gloriously for a few more temperate days.

My book describes the western meadowlark’s song as a “rich, flutelike jumble of gurgling notes” and says this bird wasn’t recognized as different from the eastern meadowlark until 1844 when Audubon named them neglecta because they’d been overlooked so long.  They are so welcome at my house, never neglecta. My heart is full when I hear them sing.

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Milestone

I’ve passed a milestone. It’s been three years since my diagnosis and surgery. My risk of recurrence of triple-negative breast cancer begins going down now. I drove to Denver in the rain. I met with my oncologist who congratulated me and once again explained that my risk will continue to go down until, after five years, if it hasn’t recurred, it probably will not.

I had been afraid to talk about the anniversary, or to celebrate it. Superstitious feelings that I might jinx it? I don’t know. I drove home from Denver under a big blue Colorado sky. I realized I feel different now. I have been marking this time – the three years – knowing that my chance of recurrence during that time was high. I made it. Now I’m not just going to celebrate the anniversary, I’m going to celebrate every day. I want to shift from worrying about what might happen to thinking about all of the possibilities and potential for the rest of my life.

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The meadowlark that sits on top of the light pole and sings reminds me that it is Spring in spite of the cold and windy weather we’ve been having for two months. This morning we have dense fog, but the meadowlark is still singing. It is supposed to be rainy the first part of the week and then begin to warm up with chances of thunderstorms. I’m more than ready to turn off the heat and get outdoors.

Thursday is my appointment with my oncologist in Denver. I had my surgery three years ago this month. This is a significant anniversary, because my risk of recurrence peaks at three years and then starts going down.

“Women with triple-negative breast cancer were much more likely to develop a recurrence during the first 3 years following therapy with rapid declines thereafter.”

“. . . among the triple-negative group, the risk of distant recurrence peaked at ∼3 years and declined rapidly thereafter.” – Various sources

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http://livingbeyondbc.wordpress.com/

Living Beyond Breast Cancer has a new topic on their blog called “fear of recurrence.” The first post in the series is called “An Appointment to Worry.”

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Arizona

This month I am in Arizona where it is warm while it is cold and snowy at home.

My ultrasound, mammogram, and checkup with the oncologist in January were good.

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Living Beyond Breast Cancer posted on Facebook a link to Laura Tasheiko’s breast cancer journal. I love the paintings and the way she processed her journey with them. I plan to spend more time there.

I also loved this post, “The tyranny of positive thinking.”

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Sunrises and sunsets

New Year sunrise over the field.

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I’m adding links to blogs written by women about their experiences with breast cancer, living with and beyond this disease.  Just finding and reading these blogs is another journey for me. It will take some time, because I don’t want to hurry through it. I want to get to know these women and what they went through.  If you have a blog and it isn’t listed here (yet), please contact me and send me the link.  I’m looking forward to getting to know all of you.

At the same time, I can’t help but feel overwhelmed by the number of women experiencing just this one type of cancer. There are far too many of us.

I appreciate all of you sharing your lives with the rest of us.

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The owl does not like to have her picture taken. This morning before dawn, I saw her sitting on the very tip top of a tree. When I went out the door as quietly as I could to take her picture, she saw me and flew away. All I got was this dark photo of her through the window.

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The Spirited Walker: Fitness Walking for Clarity, Balance, and Spiritual Connection, by Carolyn Scott Kortge, gives me guidance about walking and breathing. Kortge was a presenter and a workshop leader at the Life Beyond Cancer Retreat at Miraval when I attended two years ago. I’m not a fitness walker, but I turn to Kortge’s book for help and inspiration. Walking might be the one best thing that I can do to improve my health, reduce my risk of recurrence, and increase my sense of well-being.

This morning, I re-read the chapter, Breathwork for Walkers, which explains how controlling the pace and depth of breathing can increase our stamina and help us relax by tapping into “a channel of energy that reaches deep into the body instead of ending in gasps at the neck.”  When we breathe right, “fears disappear. Breath spreads through the body like a soothing breeze.” 

When I returned from six weeks of radiation treatment and felt fear and panic intrude into my day, I grabbed a jacket and headed out the back door to walk it off. Sometimes I drove into town and walked the sidewalks around the lake or the fishing pond. Or I drove up to the farm, left my car, and headed down the gravel county road, sometimes veering off on a pivot road into the middle of a field, then back to the car.  Once I didn’t want to worry about calculating how far I could go before needing to turn back so I called a relative and said I was walking as far as I could, then I would call them to pick me up. 

Sometimes I walked and counted my breath. Sometimes I counted my steps or followed other of Kortge’s directions. Sometimes I walked counterclockwise around the walking path and prayed, then realized I was meeting serious fitness walkers going the other directions, knees and elbows pumping high.

I went through a time this year when I didn’t feel well and I was depressed and I didn’t walk.  I believe if I had walked during that time, I would have been better much sooner, both physically and emotionally.  Walking and breathing fills us with a life force. Kortge discusses that connection between between breath and spirit or life.

 The Latin word spiritus means both breath and spirit. The Sanskrit language speaks of prana, the life force carried in the breath. English places spirit at the essential core of life in the words inspire and expire. . . . The power of deep rhythmic breathing to enhance physical, mental, and spiritual well-being forms the foundation of many ancient spiritual and healing practices. . . Breath links the inner and outer worlds, unifying action and intention. It guides us across the communication gaps that develop when mind and body are separate. . . .By developing awareness of the breath, we become better listeners for the physical information we receive from our own bodies.”

 

As a cancer survivor who is constantly learning how to be vigilant for signs of a recurrence without being anxious over every physical change, I can use all the help I can get to become a better listener for the information I receive from my body. Walking and breathing are not just good for me, but may help me learn a new way of being a survivor.  I’m going to re-read Kortge’s book.

And I am going to walk somewhere, somehow, each day, whether it is on a treadmill when the weather is bad, through the fields in the sunshine, down a gravel road, up the sidewalks in town, down a fence row, or up and down the stairs in my house.

This morning when I went outdoors,  there was a dusting of snow on the ground. The pheasants came out of the newly harvested cornfield and flew up into the tops of the trees.  I took a photo of them against the pale morning light.

Later, I saw them hurrying past my house, headed for a wheatfield.

On The Walking Path to Survival – more on Carolyn Scott Kortge

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I found a new place to go for walks this fall and winter.  A blue heron lives back here somewhere.

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I was looking back in this journal today, to something I wrote at the beginning while attending the Life Beyond Cancer Retreat outside Tucson. It was the end of what I call “the cancer year” that I spent being sick and having treatment. 

I didn’t know I was tense and unbalanced this morning, but as I read this entry, my heart opened up and I became myself again. 

I thought of the talk at the retreat today: Get Strong. Stay Strong. Help Heal. I continue to hear that same message as in AA: turn your thoughts to others. Heal yourself by healing others.

It may not change the “prognosis,” the numbers, the survival rate, the chance of recurrence, and no one would study that because there is no profit to it in the business world.

But it probably changes our entire perspective on life, the way it does when it is practiced in AA.

When we begin to heal, we want to turn our thoughts to others and share our experiences in ways that help people through things we may not have had help with. To give a hand where we really wished we would have had one. And that helps us.

Sometimes I have to hear the messages again.  I had an opportunity to apply to go to the retreat again this year, and I didn’t follow through on it. I’m sorry that I made that decision. I let too many opportunities pass by because I don’t feel strong enough or courageous enough or confident enough. As I read the journal notes from the retreat, I really wish I was on my way to Tucson in a few days. 

But, since I’m not, I’m going to pick up some of the plans that I had when I came back — and one of those was to build a labyrinth.  And carry on with some of the others, including the support group of local cancer survivors. 

And art therapy. Where can I find an art therapist who will come to our little town and do a day-long session with us?

Retreats should inspire. In this case, even revisiting the retreat has helped me today.

The retreat

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Late summer morning

sundaymorning

It’s a beautiful late summer morning. Good for reading outdoors.

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Two years ago in February 2007, I ordered 100 seedling trees to plant around my five acres to replace old trees dying out, to create some shade on the prairie and to screen the view of the new ethanol plant a half mile down the road. The trees came in March and shortly after they were planted, I found out I had invasive ductal carcinoma — breast cancer.

seedlingI now call 2007 my “cancer year.” It was spent being sick and scared, agonizing over what treatment to have and how to access it, taking a leave of absence from my full time job in the summer and telecommuting part time while I stayed out of town to have daily radiation treatments for 6 weeks, returning to my office in the fall and trying to figure out if I had the energy to work full time. Because I wasn’t home all summer, nobody carried water to the seedlings, and they were left to struggle on their own to see if they could survive the drought conditions on the plains.

Through that winter, 100 orange landscaping flags stood out against the snow, signaling where each seedling had been planted. I would wait until spring to discover that all but six had survived.

I had been told that I might have fatigue lasting up to six months after my treatment ended. In February 2008, I expected to return to feeling “normal” and be able to put in a full days’ work and carry out my regular daily activities. In April, when I couldn’t summon the incentive necessary to do a good job for my employer, I gave notice, and at the end of the month I started a new, part-time job where I worked from home instead of having to go into an office each day. It was discouraging: I began to reconcile myself to the idea that this was as good as it was going to get. It wasn’t that I didn’t feel well – it was that I had only a certain reserve of energy, and when I used it up, it was like an empty gas tank. It was not the kind of tiredness I could push through and work beyond.

The seedling trees were left through the summer to thrive or not. I didn’t carry buckets of water to them. I did drag a hose around once in a while but the seedlings beyond the reach of the hoses were left on their own. It took three to four hours a week to mow and that was as much as I could get done. I did plant two more trees – tall seedless cottonwoods – by the grass in the backyard where they would get regular water and someday would provide shade where there had been nothing but a bare gravel driveway when I moved in to this house. Those two trees stood for two things – I had a sense of optimism, that I would be around to sit under their spreading branches, and I had the strength to dig the two deep holes by myself in the hard ground.

Soon after I planted those trees, I began to realize that each day I had a little more energy, I got more done, I felt like I might be capable of taking care of myself and my place, and things would continue to get better. I began to stop thinking of myself in relation to the cancer. I began to think that it might not affect the rest of my life.

I realized that the predictions about how long it might take for me to regain my energy after treatment were completely underestimated. I decided that it might be discouraging for patients to hear that it could take up to a year or even two to feel “normal” again. Because I hadn’t been told this might happen, when I passed the benchmark of six months without regaining my energy, I became discouraged and it was depressing to think I might never feel better again.

This is a beautiful morning on the plains. I have been outdoors watering the seedlings that were planted in my “cancer year.” Some of them didn’t make it through the winter. I had to hire someone to mow while I was out of town and some of the seedlings didn’t survive the mowing. But my grandson and I went out Saturday to take out the rest of the faded landscaping flags so we wouldn’t get the wires in the mower blades, and we put bright blue tape on the survivors. Most of them are hardy. I will drag a hose and carry buckets and water them and they will grow quickly now.

The year before I got cancer, a friend of mine who is a few years younger than I am said he was too old to plant trees. Planting trees is a perspective on life. No one should ever be too old to plant a tree. When I learned I had cancer, I wondered why I had just planted 100 seedling trees. Later I wondered how I would take care of them. Today I am watering them and looking forward to sitting under their shade.

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After not posting here for quite some time, I had a very flattering comment from a reader to say my voice was missed, and that people worry when too long a time goes by between posts. I hadn’t thought of that. I follow some other people who are journaling about their experiences with cancer, and know I’ve been concerned when I don’t see an update from someone who posts regularly.  But for some reason it didn’t occur to me that any of my readers would be worried.

So thanks for commenting to let me know.

In February I posted about the need for patient navigators, to help terminally ill people who are overwhelmed by this disease itself and do not have the resources and energy to deal with the bureaucracies of health care and insurance. My friend was farther along in his disease than we wanted to acknowledge.  He went into the hospital in March, we thought for a few days to resolve some side effects of a chemotherapy medication. One day a perky doctor that we hadn’t seen before even told us we could take him home that day. We said we needed some preparation and information about home health care and were even told that a physical therapist (whom we knew nothing about) said the patient didn’t need any home care assistance. We were astounded, since he needed help for all basic needs and hadn’t been able to eat or drink anything. So that discharge was postponed, ostensibly to give the hospital time to get the home care arranged.

So one day we were told to make him eat and drink so he could go home, and the next we were told if he didn’t want to eat or drink, not to force him. It was completely baffling and we had no idea what to expect. That, combined with our denial, didn’t prepare us for what was next – we were still preparing to take him home. Then we were prepared to take him to hospice.

We lost him on April 4.

I have been thinking about the post that I wrote about my resistence to using the metaphors of war for this disease of cancer. I was open to the possibility that I was wrong. After watching what my friend went through, the first post I wanted to write when I was able to come back to this journal was to say, “I was wrong. It is a war.”

I have not been able to articulate more of that yet. I have not been able to say much of anything. Our grief is overwhelming.

During this time, I was supposed to be helping start a local support group for cancer survivors, to finish a small directory of resources available for cancer patients and survivors in our little town, and to participate in a training to volunteer to help other breast cancer patients, and setting up an information resource center in our local hospital. All I wanted to do at that time was to not hear any more about cancer. Not to think about it for a while. What a luxury and privilege that would be. And I use “privilege” in the most pejorative sense.

We’re not able to have that luxury. We have to just keep on – taking care of ourselves and hoping that we can spare other family and friends more of this grief. Taking care of others that we love. Taking care of people we don’t know. Raising money for a cure for strangers. Finding information about prevention and good health for our children and grandchildren. Carrying the memories of those who didn’t want to go but are no longer here.

I don’t know what else to say right now. I will be back. Thanks for caring. I love all of you who care enough to read this.

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bwop1Just before my diagnosis and for some time during my surgery and treatment, I was having nightmares, what I later decided were “cancer dreams.” I’ve written here about looking for someone to help me process the strong emotional reactions I had to learning I had cancer and dealing with it. What I intuitively felt I needed was dream work therapy or art therapy. The social worker at my oncologist’s office told me over the phone to watch for upcoming art therapy sessions on their online calendar. Although they would be in in the city, I felt such an urgent need for them that I decided I would travel to attend. But I never saw them listed, and I’ve never attended any. I wish I could have found a way to do this at the time.

One day I was looking for online resources for breast cancer patients and was startled to see a full color photo of a cancer cell. It reminded me of drawings in my journal that I had done before my diagnosis. I got out the journal and discovered that I had done several pen and ink drawings that, in retrospect, looked like complex cells that had broken out of their precise patterns and boundaries and become chaotic.

Here is an article about a study that determined that women having radiation treatment for breast cancer were helped by art therapy:

Art therapy ups breast cancer patients’ well-being
Thu Feb 12, 2009

NEW YORK (Reuters Health) – Women having radiation treatment for breast cancer experienced lasting improvements in mental and physical health and quality of life after participating in five sessions of art therapy, Swedish researchers report.

The findings “strongly support art therapy as a powerful tool in rehabilitation of patients with breast cancer and, presumably, also in the care of patients with other types of cancer,” Dr. Jack Lindh of Umea University, Umea, Sweden, and colleagues conclude in the European Journal of Cancer Care.

From my sketchbook

From my sketchbook

Women face major stresses after a diagnosis of breast cancer and art therapy could offer a way for women to express and “process” their emotions, the researchers say, thus improving their quality of life.

To investigate, they randomly assigned 41 breast cancer patients receiving radiation treatment to five once-a-week, hour-long sessions of art therapy or to a control group who didn’t receive art therapy. Study participants completed surveys addressing their quality of life and self-image before beginning radiation, two months after radiation treatment began, and six months after the beginning of treatment.

A trained art therapist led each session, in which women were given a wide variety of art materials. Goals of the intervention were to offer time and space for expression and reflection; give support in the process of restoring body image; and reduce stress.

By six months, the researchers found, women who had participated in art therapy showed significant improvements in their overall quality of life, general health, physical health, and psychological health, while the control group only showed improvements in psychological health. The art therapy group also showed specific improvements in their body image, perspectives on the future, and radiation therapy side effects.

In previous studies, Lindh’s team demonstrated improved coping skills and better ability to deal with others’ demands in the breast cancer patients who did art therapy.

Art therapy may have improved the women’s quality of life by helping them to maintain a positive identity, to deal with pain, and to feel control over their lives, the researchers say.

“The results of our studies suggest that the women, through image-making and reflection on their images, were able to give legitimacy to their own interpretations and experiences,” as well as to “recognize and question” limits and boundaries imposed by traditional gender roles, they conclude.

SOURCE: European Journal of Cancer Care, January 2009.

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When we are told to “fight a battle” with a “positive attitude”

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. . . My point is that illness is not a metaphor, and the most truthful way of regarding illness — and the healthiest way of being ill — is one most purified of, most resistant to, metaphoric thinking.” – Susan Sontag

sontaggSusan Sontag wrote that two diseases have been “spectacularly, and similarly, encumbered by the trappings of metaphor: tuberculosis and cancer.”

In her book, Illness as Metaphor, written in in 1978, Sontag said that when the etiology of an illness is not understood, and the illness is intractable and capricious, it is mysterious, feared, dreaded, and all sorts of mythology and labels arise from it. As long as a disease is treated as an evil, invincible predator, people will be demoralized by learning they have it.  At the time Sontag wrote this book, cancer had become labeled and surrounded by mythology as tuberculosis had in the past.

At the time I read the book medical research had uncovered much of what was mysterious about cancer. We’re learning that cancer is not just one disease calling for one treatment. Better treatment has resulted in some cancer survivors living with it as a chronic, not simply fatal, disease. However, many of the old superstitions and myths remain, and are still impacting patients and the people around them.  

I wanted to unravel the mythology in part because the battleground metaphors around cancer were distressing and uncomfortable for me. Every time I read another obituary which said the person died after “a long battle with cancer,” I cringed not because it reminded me that I was diagnosed with a disease that could be fatal, but because I didn’t want the rest of my life defined as a military campaign.

Perhaps it’s unavoidable. I opted out of chemotherapy, so I decided not to “charge that hill,” and I haven’t experienced the worst side effects from some of the medicines that developed from chemical warfare agents.  I would think it’s entirely possible that when a person makes a decision to be poisoned in order to poison the cancer, that it literally is a decision to go to battle,  it probably takes that sort of a toll on the body, and maybe a person would want that struggle recognized. My aversion to the metaphor may be tied up in my own unwillingness to fight the battle that way. And, if I have a recurrence, my decision will be different, and at that time I’ll have some experience to back up what I’m talking about. I think that people who have gone through chemotherapy have a right to tell me I don’t know what I’m talking about.

But, I needed to read the book at the time that I did because I felt pressured on one hand to accept a metaphor of war along with a diagnosis, so I was being told both to “keep a positive attitude” and get in there and go to battle. I intuitively knew there was something wrong with that. Actually, neither of those things made sense to me.

I didn’t believe that my attitude caused my cancer and I didn’t think my attitude could cure it. And I don’t think a person who has cancer should be told they have to spend the rest of their life being a soldier.  As I say that, I realize that Patrick Swayze just said that going through chemo was like being in hell, so again, what do I know? 

Nevertheless.

Sontag herself had cancer and wrote this book after her cancer treatment. She wrote that “TB was understood, like insanity, to be a kind of one-sidedness: a failure of will or over-intensity. However much the disease was dreaded, TB always had pathos. Like the mental patient today, the tubercular was considered to be someone quintessentially vulnerable, and full of self-destructive whims.  Nineteenth- and early-twentieth-century physicians addressed themselves to coaxing their tubercular patients back to health. Their prescription was the same as the enlightened one for mental patients today: cheerful surroundings, isolation from stress and family, healthy diet, exercise, rest.”

On the other hand, the understanding of cancer supports quite different notions of treatment. “The treatment is worse than the disease.” The patient’s body is considered to be “under attack” so the only option (treatment) is “counterattack.”

Sontag says the controlling metaphors for cancer are drawn from the language of warfare. Cancer cells don’t multiply, they are “invasive.” Cancer cells “colonize” setting up tiny outposts in distant sites in the body. The body’s defenses must obliterate the tumor. We have radical surgical interventions.  Scans are taken of the body’s landscape. Radiation treatment “bombards” us with toxic rays. And, again, chemotherapy is chemical warfare. Treatment aims to kill cells, hopefully without killing the patient.

The “fight against cancer” is a colonial war.  Once, American Cancer Society proclaimed that progress has been made “reminiscent of Vietnam optimism prior to the deluge.”

Although my “mission” in reading the book was to find some peace among the military language of this disease, so I focus on that aspect of it, Sontag also addresses other metaphors and labels we have put on cancer, including the idea that it is “nature taking revenge on a wicked technocratic world.”

Although there are environmental causes and connections to cancer, it is as much a cliche to say that cancer is “environmentally” caused as it is to say that it is caused by mismanaged emotions.

Sontag’s book is helpful to deconstruct disease metaphors which she said had become “more virulent, preposterous, and demagogic.”

The book may be too philosophical for some. In fact, in the later chapters, Sontag analyzes the use of disease imagery in political and other rhetoric, using examples from Hobbes, Burke, Nietzsche, Trotsky, and others.  But it’s a useful book for those who believe we have enough to put up with having cancer without having to suffer from metaphor.

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Sontag died in New York City on December 28, 2004, aged 71, from complications of myelodysplastic syndrome which had evolved into acute myelogenous leukemia. The MDS likely resulted from chemotherapy and radiation treatment she received three decades earlier for advanced breast cancer and, later, a rare form of uterine cancer.

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markersMy last appointment before I left town was at the women’s imaging center which is near the hotel where I stay. They knew I had a long drive home,  so they took me back right away and handed me a warm gown to put on. I  love warm gowns. I always take along a scarf to wrap up in because the gowns are skimpy and the rooms are sometimes cold. 

I was told that starting with this appointment, I would have a bi-lateral mammogram, to be followed with appointments every six months when I would have a mammogram on alternating sides.

I also had an ultrasound and a visit with the doctor, who said she was happy with the results of the tests and to see her in six months.

I wrote in the first draft of this post about how I had to insist that the technician get my records before she did the mammogram because I (mistakenly) remembered having a mammogram three months ago and didn’t think it was time to have another one, and how that seemed to set off what I guess would be called post traumatic stress, when I suddenly found myself reliving my first visit here when, during a biopsy I heard the doctor tell someone, “this is going to be cancer, make an appointment for an MRI right away.”

That draft wasn’t saved, and when I began re-writing it, I began wondering why I am writing this journal online where it is public.

How much of this does anyone care about? Who is my audience? What do they want to know? Occasionally, I read blogs written by other breast cancer patients. Everyone is different. One woman’s journal was, for quite a while, very precise and objective in describing what happens to a breast cancer patient without reflecting any emotional content. It was something I would like to have found when I first got my diagnosis so I would have an idea of the process that I would be going through:  how many doctors do you have, what is the role of each doctor, what kind of information do they give you and what is the process you used to make a decision about surgery and treatment, what is radiation treatment and what happens when you go for your first appointment? 

But, as the record of her experience went on, I began to wonder, how did you feel inside about this? Where was the emotional content to this? I wanted to know whether other women had gone through the overwhelming fear and anxiety that I had when I got my diagnosis, and what they did about it, and how long it lasted, and what were the reactions of the people who were close to them?

I wanted to know if other women cried during their first radiation treatment – and why. I wanted to know how many radiation treatments they had before they got tired, and how that fatigue felt to them, and what they did about it, and how the people around them helped or did not help. 

I wanted to know whether they decided to have chemotherapy and how they made that decision – did they just do what the doctor recommended, or did the doctor suggest they make the decision for themselves, and how does a person make a decision like that when we know we don’t have enough information to make a very informed decision that may be one of the most critical decisions we ever make. 

The blog that I was reading that didn’t reflect these things went on very objectively until one day this cancer patient had new pain accompanied by an unexpected and overwhelming fear — is this more cancer?   It is unsettling. It is hard to regain balance afterward. I could relate to her.

Reading about other women’s experience was the thing I hunted for and devoured during the first several months after my diagnosis and while I was going through surgery and treatment.

So, maybe I’ve processed the answer to my question: why am I writing this? If I was writing this just to process my experience for myself, I have plenty of blank books around the house, and this wouldn’t be public. 

I am writing this here in case there is another woman who wants to read about what happened to someone else so she can find something to hang on to for balance while she goes through her own experience. 

We are all unique and our experiences will all be different and we will process them differently, but knowing what it was like for other women helps me see the road.

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obamaIt seems to me that the atmosphere in the country has changed. I think it’s because of the huge collective sigh of relief when George Bush left the White House for the last time.

My friends have been calling and emailing the last two days saying they are crying with excitement over the Inaugural ceremonies in Washington. I have a new twitter box that stays on the side of my desktop, and as I work, I’ve been able to watch all of the people and news sources that I follow talking about the entertainment and speech yesterday at the Lincoln Memorial, their volunteer work on Martin Luther King, Jr. day today, and counting down for the swearing in ceremony tomorrow morning.

Something that Barack Obama said keeps replaying in my mind.  “If we can just see ourselves in each other. . . . we can overcome our differences and rebuild this nation.”

This is a monumental change. It has been a long, long time coming.

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From Boobs on Ice, a wonderful article called “Living our own Last Lecture.”  Please visit, please read.  Her advice: 

  • Please love others and live well while you can.
  • Give generously of yourself and your spirit.
  • Adopt a cause or two.
  • Be present to what’s happening around you and not distracted by the latest shiny thing of the blogosphere.

She says,

Like Randy Paush who was only 47, or others we know who were suddenly stricken and died much earlier, we never know when an unexpected diagnosis – or a bus – will mark the end of our time here.

Let’s make today even – simply this day – one that we’d be proud to call our last.

And then tomorrow let’s get up and do it again.

And while you’re doing it, just know that I love you all.

Boobs in Ice

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I am watching the 10 pm news about the number of people who are out of work. And, of course, most people have health insurance through their jobs. This is just an awful situation, when people are not only out of work but lose their health insurance coverage.

In this state, we have the option of continuing our health insurance policy for up to 18 months, but we have to pay the premium ourselves, and who can afford that when they don’t have a job? My insurance premium was $1,005 a month when I changed jobs. My new group coverage is just under $900.

When I worried about whether I would be able to keep my job, the main thing I was concerned about was losing my health insurance. I feel so fortunate that I’m working and have health insurance. I don’t understand why some people are afraid of universal health care, and call it “socialized medicine.” I hope we can get people back to work, and I hope we can get universal health insurance coverage.

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http://www.photofunia.com/

Just when I said I was taking everything too seriously, I stumbled on this web site where you can put your own face in a number of photos. 

Some of mine:

mephoto31

 

mephofokitties

 

mephoto10

janebigposter

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My next three-month checkup is Monday. My first appointment is at the women’s imaging center where I will see the doctor and have a mammogram and ultrasound on one side. I’ve forgotton which side. I have to continue my massage to reduce edema so the doctor will not need to order an MRI.  My second appointment is with my surgeon, and after lunch when I have some information from the morning’s exams and tests, I have an appointment with my oncologist.

When my following 3-month checkup comes around in April it will mark two years since my diagnosis! That is hard to believe.  It doesn’t seem that long, I suppose because I spent most of the first year having cancer, and having treatment.  Once I reach the 2-year mark, I will find out if my checkups will be every 6 months rather than 3. 

I’m not having the level of anxiety around appointment time that I have had in the past. When my initial checkups resulted in the finding of NED (“no evidence of disease”), it was difficult to accept that lack of certainty. Now I look forward to getting that call from my test results.

Time — just plain time passing — has taken care of some of the anxiety and fear that I had. I have also had to develop some new ways of coping with the uncertainty of life and this disease. Meditation, breathing, walking, writing, sketching, working at my job, and doing some advocacy work on behalf of cancer patients in rural areas are some of the things that help.

I notice that I didn’t say “play” or what I do for “fun.”  I still take life entirely too seriously.  My sense of humor tends to be too cynical. I don’t know whether to blame my faults on my nature or my nature on my faults — how does that go? Some things don’t change just because we get cancer.

In the book Prayers for a Planetary Pilgrim, the author says humor is our spontoon. I always thought a spontoon was like a raft, so I pictured myself out on the lake of life being supported and carried on the pontoon of humor. Drat. Now that I know a spontoon is a short pike, I’m completely at a loss for a visual image. Maybe I’ll just picture humor as a parachute. Someone once told me that the 12 steps were “suggested” as a method of recovery, in the same way that if I planned to jump out of an airplane, it was “suggested” that I wear a parachute.

Hm m m m.. I seem to be in the middle of mixing metaphors, diseases, and methods, but maybe I can start to lighten up and look around for more things to laugh about.

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candle-lightA common theme last year at the Life Beyond Cancer Retreat at Miraval was how to be vigilant but not anxious.

That was a year ago. I have been very slow to learn how to do this gracefully. I thought it was a balancing act, but I think I was mistaken.

As Sarah Weddington says, cancer cells are like Osama bin Laden.  “I don’t know if the cancer is dead or alive and hiding in body caves and waiting to jump out and shout ‘boo!’ I’m grateful to be NED (no evidence of disease) but I’d like to have a more permanent diagnosis.”

So we have schedules for checkups and tests and in between try to be vigilant and do our self-exams and our massage to prevent lymphedema and eat our broccoli and get our exercise but not worry too much about someone shouting “boo!”

I have been waking up at 3:00 a.m. so I began a vigil of sitting in silence in the deepest part of the night

Open in this moment. I trust in the darkness.

Waiting in trust. Growing in trust.

. . . drawn into the night’s silence

I keep vigil with eternal questions.

And only through this practice have I begun to experience that there is a difference between waiting (for test results, for the other shoe to drop, for a diagnosis, for the next checkup, for decisions to solidify) and keeping vigil.

“Anxious, fearful impatient waiting is nothing more than waiting. Waiting with purpose, patience, hope and love is vigilant waiting.”  –  from Seven Sacred Pauses by Macrina Wiederkehr)

I don’t want to just be waiting impatiently. I am trying to learn the art of holy waiting.

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From another breast cancer blog:

At the end of March of this year I had a mammogram that showed no signs of abnormal tissue. I thought I was good to go until the following year. One issue I discussed with my Doctor at that time was some itching I had on my left breast. He said it was probably just dry skin due to the cold whether. Well, I didn’t have dry skin or a rash normally associated with itching. The itching wasn’t severe it was just annoying and lasted for months. At the end of August I found a lump in that same area during a self breast exam. I have since learned that itching can be a symptom.

When I read this, I knew exactly what she meant. I had an itching sensation in the area where the tumor was found later. It isn’t the kind of itching you get from dry skin. It is a deep itching sensation, deep in the breast, around the cells that are growing out of control. Mine was intermittent, wasn’t relieved by showering or lotion, and didn’t go away until the tumor was removed. 

It is important for us to pay attention to what our bodies are telling us and to be firm and believe in ourselves and our feelings in the face of doctors that suggest that we dismiss these things as unimportant.

 

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mandalaFrom the moment I got my diagnosis of breast cancer until over a year later, I could not go through a day without thinking of cancer. I had a moment in the morning when I woke up before I remembered cancer, but I didn’t have any mornings without thinking of it before I got out of bed.

Even after I finished treatment, I never went through a day without thinking of cancer. I wondered if I would ever get to the point where I did not think of myself as a person with cancer and how that affected my day, my life, my work, my family, my time, my rest, my future.

Eventually, after having several check-ups and tests that came back “NED” (no evidence of disease) I reached a point between visits to the doctor that I woke up in the morning without thinking about cancer, or thinking of myself as a cancer survivor, and days that I feel well seem “normal” again. Days when I don’t feel well are another story. It’s hard to not feel well and not wonder if it is related to cancer.

So I don’t think of cancer all the time. I don’t go online to check news about cancer, or visit the online support groups and message boards.

Now that I’m working with a group of people on local resources for cancer patients and survivors, I’m back to thinking about cancer. What resources were helpful to me? Are we going to start a support group? How are my survivor friends, some who are going through treatment, feeling today?

I’m back looking at resources online, collecting links and setting up online networking tools for people who can’t forget about cancer because it has affected their lives or the lives of people that they know.

So we think about cancer some of the time. Think about it, then don’t think about it, then think about it.

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The group that got together in October to do community advocacy and resource directory for local cancer patients and survivors is waiting for the rest of us survivors to keep moving along.

We’re having an informal breakfast meeting next week at the local cafe on Main Street at 8 a.m. We’ll talk about the goals: create a directory of local resources and insert it into the state directory; recruit volunteers who will be trained by ACS to be in (the hospital/ clinic) (other place?) two or three mornings a week to answer questions and provide resource information and materials; recruit volunteers ACS will train for Reach for Recovery; help two local groups raising funds for research and treatment coordinate their efforts to continue $ for research AND keep some $ in the local community to help patients with the expense of accessing treatments and appointments out of town.  Some survivors also want to start a support group.

Since we are 2 – 2.5 hours from the front range where radiation treatment centers and other resources are located, we need to have some funds available to help folks get there, and improve the prognosis for people who otherwise might just skip treatment, or have a mastectomy instead of lumpectomy so they don’t have to have radiation, and to get to other facilities, when needed, in addition to the one the local hospital has contracted with. 

This community has raised enormous sums for Relay for Life, but none of that money stays in the community as dollars a local organization can distribute when needed to access tests, treatment and other appointments.

We have a LOT of enthusiasm in this new blended community group, so we need to keep focused and moving forward.  In the meantime, working on this has meant some of us survivors have talked to each other more often, which is functioning as the foundation for a support group, I think.

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Not Grace

Not Grace

I imagined the perfect dog . . . a substantial dog. A dog that a person could respect. A five-year-old female black lab who was housetrained, well behaved, with a mellow personality (yet a watch dog), who had lost her person and was just looking for a quiet home in the country where she could lay at someone’s feet while they worked at a desk, that would curl up for an evening of reading or tv, a dog that would only need an occasional stroll (never running! or frisbee!) and liked riding in the car without having a nervous breakdown, needing a tranquilizer, or throwing up.  I had already named this imaginary but substantial dog, Grace.

Then I actually found her online.  A five-year-old female black lab named Grace. The rescue organization across the state line in Kansas didn’t give any information on the rest of the qualities.  But they never returned my call. In the meantime, my mother encouraged me to get a puppy, and, to make a long story short, I got another “insubstantial” dog – a Malitpoo (cross between a Maltese and a Poodle).  Just like Jessica Simpson’s dog Daisy.  (Sigh. How embarrassing!)

The first few days after I got her home – along with new crate, blanket, dishes, toys, puppy training papers, and after the vet checkup, I slept on the couch with her in the crate on the floor beside me. I woke up every three to four hours all night long, put on her halter and leash, and we went outdoors no matter what. She soon got the message, and I was soon exhausted. Maybe she was, too, because she took a nap each morning and afternoon.

When I went to Arizona for a week, my mother baby-sat the dog. Mom reported that they both slept all night long without any trouble or mess. So when I got home, we did, too!

Then the puppy  got sick — really sick, and I was very upset. I couldn’t go through another sick dog already — my last poor doggy who was 17 years old was so sick for so long before I lost her that I couldn’t face it again. I was crying around, “what have I done!!!”  So there were more vet bills, but the medicine worked, and after incurring yet more vet bills, the lab reports confirmed that she was okay now — she was cured.  $$$$$$$$.  $$$$$$$$.

pinky-001Now we’ve gotten used to each other and we’re best buddies.  She isn’t the perfect dog. Her hair is growing out and it looks like this. She will never have a substantial stature or command respect, especially if she always has a bad hair day.  She likes to unroll the toilet paper, she takes every shoe left on the floor into her crate, and her name isn’t Grace. It didn’t suit her.  So her name is Pinky Sparkle Twinkle.  (All my other pets were named after Greek and Egyptian gods and goddesses and radical personalities from the 60s.)

But she doesn’t have to have a long run outdoors every day and she can play fetch in the house with her tiny toys. She likes to lay on the desk or in my lap while I work. She’s trained to her puppy pads so we don’t have to go outdoors if it’s really cold and snowing, like it was the last couple of days. And she likes to ride in the car.

Now I know why my mom encouraged me to get her. She makes me laugh – and that churns up the endorphins. I have something to think about and take care of besides myself. She’s a little demanding, and that’s okay because I have to give in some times and do what she wants even though we pretend I’m still the boss of both of us. She likes to play, so I have to play, too, sometimes, and it’s a long time since I played. She likes to cuddle, and I haven’t had anything to cuddle for a while.  Having her around is more fun than eating fresh broccoli. This may be why “they say” (as Mom said) that people who live alone “do better” when they have a pet.

So we’re committed now.

And some day we may get a call from Grace, and we’ll have room for her, too.

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Waiting for test results is a bitch.

I have received phone calls from my oncologist’s office two to three days after each regular checkup with her, when I get my tumor marker test results, which have been normal. This time, I haven’t felt normal, and I haven’t had a call back yet. Tomorrow will be ten days since my exam. I finally called the social worker, after leaving two messages with the nurse and not hearing back. The social worker left me a message today saying my chart and results are on the doctor’s desk and she should call me tomorrow.

In the meantime, since I don’t feel “normal,” my imagination has gotten away with me again and when I wake up in the very small hours of the morning, as I have been every day, my headache, or my joint aches are more noticeable, or I think I have a little “squeezy” feeling in my heart — or is that a pain on my rib? — and I decided that I needed to go somewhere else to find out why I am still so tired, tired, tired, and feel so short of breath when I do anything. So at 4:45 a.m. I decided to get online and check out how to get an appointment at Mayos in Scottsdale, Arizona.

Noticing a link to “latest news on breast cancer,” I clicked that link only to discover a very discouraging report issued October 15 (two days after my oncologist visit) saying there is a “two-fold” increase in the risk of mets to the lungs in breast cancer patients with asthma. There was no going back to sleep after that, and besides, the puppy was awake by then. (That’s another story for elsewhere.)

In spite of the fact that I made a decision that between check-ups, I am going to live a “normal” life as a person WITHOUT cancer, and in spite of the fact that I didn’t obsess about it before my appointments this time, after a couple of days passed and I didn’t get a call with test results, the un- and sub- and all other consciousnesses began to take over, starting in the night when I needed to be sleeping. Between them and the puppy (I will write about that), I’m not getting good rest. Which equals more fatigue, which results in more anxiety about why I’m so god-dammed tired.

Not just tired — hurting, weak, wet noodle, joint cracking, falling down, can’t go up the stairs, too much bother to read a book, tired.

Now that the sun is up I am telling myself that I’m okay. I’m not sick. My cancer is gone and it is not going to come back.

But it would be easier if I had my test results on time, knew what they were, and had a chance to talk to the doctor about this new report.  I want her to say, “yes, I know the report, but it isn’t like it sounds, it’s like this. . . . .so don’t worry.”

I can get on a plane and go to Tulsa to Cancer Treatment Centers of America and have PET scans. My docs have said they’ve never ordered PET scans because they had no indication I needed one. The onc at Cancer Treatment Centers was very surprised about that. They would have routinely done these scans. My (former) naturopathic physician who worked for Cancer Treatment Centers said they did very good work but they used up people’s insurance because they ordered all kinds of tests and treatments.

I don’t know how a person is supposed to sort all of that out. I need some kind of statement from my docs about the asthma/ recurrence report. If that is even minimally reassuring, then I need to find out whether my onc thinks my primary is following all this, and my primary thinks my onc is. I feel myself fallllllllling through some cracks here.

And this is how my mind works while I’m waiting for test results when I’m not feeling up to par.

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Breast Cancer Network of Strength (formerly Y-Me) has a new online counseling program.

YourShoes has the country’s only 24/7 toll-free hotline staffed exclusively by trained peer counselors who are breast cancer survivors. These peer counselors are experienced in handling all types of questions related to breast cancer, and can talk with you about your feelings and concerns. They will make sure your questions are answered and give you the information you need in plain language. Call YourShoes at 800-221-2141.

Peer counselors can match you with a survivor who had a similar diagnosis or life experiences. You’ll be able to talk with someone who really understands your concerns–a woman or man who has been there.

I had a hard time finding someone to listen when I needed to talk about my deepest fears – would the cancer come back? Was I going to be able to keep working? What would happen if I couldn’t work, which would also mean I wouldn’t have health insurance? The next three years before I turned 65 and became eligible for Medicare were the years that the risk of recurrence would be highest. Other fears were that I would have to keep working at a job I didn’t like during the next few years, which might be my last.  Was this how I was going to have to spend my last years? But how could I change jobs now?

Other things that seemed critically important to me at the time were that I was having what I called, “cancer dreams” and I needed to talk about them – with someone who took them seriously. And I didn’t want to go through having this disease without being able to understand something of what it meant in my life.

I checked with my insurance company to see if they paid for counseling and was told they did only if I went to the local community mental health programs, so chronically underfunded and marginally staffed that their services were usually restricted to crisis response, drug and alcohol evaluations and other court ordered interventions.  Not where I expected to find a Jungian analyst or dreamwork therapist.

Eventually, I made an appointment to talk to a private therapist and spent $60 to fill the car with gas and drive out of town to her office, and paid her $80 for an hour of her time, during which we chatted about some of the women we both knew, discussed my cancer history, and then she asked me if I wanted to come back.  Not having ever been to a therapist before, I asked if she could tell me what we might accomplish if I returned, and I expected that she would describe the therapeutic process as she practiced it.  Instead, she said that would be up to me.

Maybe she thought I knew what I was doing. Or knew something about therapy. I think I should have gone to someone who regularly worked with cancer survivors. My mistake. That I made primarily because I tried to go to someone I could see in a 150 mile round trip or less, instead of the 300-mile round trip it would be to the city.

The other reason I didn’t feel that anything “happened” during that appointment was that I had just made the decision to accept a job offer, and leave the work that I didn’t think I could keep doing. This was such a huge relief, and had been such a hard decision to make (don’t know why now) that I just didn’t feel I had anything bothering me that I needed to talk about. That was just timing.

The same questions still exist: I have a birthday this week, and it will now be two years instead of three before I am old enough to get Medicare, another two years that I have to stay healthy enough to work in order to keep my health insurance — which costs $1,005 per month.  I went to a town hall meeting on what we could do to address the health care crisis, and the first comment from a man in our rural neck of the woods was that we should all take more personal responsibility.  I took some personal responsibility by not killing him on the spot.

It will be one more year that I am a cancer survivor. It will be one more year during that first 5 years after diagnosis that my chance of recurrence is highest.

As the three-month checkups that come back NED (“no evidence of disease”) the question of what will happen if I can’t work gets pushed to the back of my mind and I can practice living life without waking up every morning and thinking about cancer.

So I have never really talked to anyone about these things. I quit having what I called “cancer dreams.” I no longer feel like I have to understand immediately what this all means in my life.  But I also don’t want to get complacent and forget to ponder that. I still do not want to have had this disease without understanding how it has affected my life and what that means.

When I get anxious, I put on walking shoes and get out of the house as soon as I can and walk and breathe until I’m better.

I don’t get online to read breast cancer news and updates like I used to. It has been a couple of months this time.

I was glad to find information about the YourShoes program.  We can call any time of the day or night to talk to a trained peer counselor who is a breast cancer survivor.

Get more information about this program here.

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THURSDAY, Sept. 4 (Health.com) — The special terrors of the Iraq war have shone new light on post-traumatic stress disorder (PTSD) as it is suffered by U.S. soldiers. But medical patients undergoing arduous procedures and treatments can experience PTSD symptoms too, according to a California pain expert.

At the PainWeek conference in Las Vegas this week, Thomas Strouse, MD, professor of clinical psychiatry at UCLA, stressed the importance of minimizing pain, fear, and other trauma that accompany cancer treatment, in particular.

Cancer patients, Dr. Strouse says, may feel they are under terrifying physical threat, may feel a loss of control, and may experience prolonged pain or other discomfort such as profound nausea, laying the groundwork for PTSD.

According to Dr. Strouse, PTSD symptoms have been most clearly described in adolescent patients who relive the trauma of childhood cancer treatment when they have to go in for tests and checkups. But, he says, “It can happen in adults who have gone through arduous medical experiences as well. One of the big unanswered questions in PTSD research is: Why do some people exposed to a trauma get PTSD and others don’t?”

Source and complete article: Health News

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In the mid-1980s I was sitting in a meeting with about 15 other women who were working together on a variety of programs.  I had just finished reading somewhere that women had a one in 15 chance of getting breast cancer during their lifetime.  I remember looking around the room and wondering which one of us it would be.  I never thought it would be me.

When I was diagnosed with invasive ductal carcinoma in 2007, that lifetime risk had changed to one in eight.

Breast cancer is the most common cancer among women, excluding cancers of the skin. More than 2 million women are living with the disease. In 2007, breast cancer will account for nearly one out of every four cancer diagnoses in women.

An estimated 178,480 women will be diagnosed with invasive breast cancer in 2007. This number does not include cases of carcinoma in situ. An estimated 62,030 new cases of breast carcinoma in situ will be diagnosed in 2007. Of these, 85% will be ductal carcinoma in situ (DCIS).

If every woman lived to age 85, one out of eight women in the United States would develop breast cancer by that time—a “lifetime” risk that was one out of 14 in 1980. A new breast cancer case is diagnosed every 2.2 minutes.

From Breast Cancer ActionThe Facts and Nothing but the Facts

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From Our Bodies Our Blog

Our Bodies Our Blog has invited the folks at Breast Cancer Action  to write monthly guest posts on breast cancer and related issues. We welcome their first entry!

by Pauli Ojea

In the late 1980s, a group of women in a breast cancer support group decided it was time for change. These women, who met regularly to share information and to support each other through their experiences, felt there was more they could do, more they needed to do. Frustrated by the lack of reliable information about the disease and the lack of support most women with breast cancer received, they wanted to change the situation for all women facing breast cancer.

So, in a San Francisco living room in 1990, the women set out to do something about it: They formed Breast Cancer Action (BCA).

Their goal was to move breast cancer from an individual woman’s private medical crisis to a public health emergency. The founders put their political know-how, passion and courage to work in order to bring national attention to what was then a rarely mentioned issue.

Fast-forward to 2008. BCA is now a national education and advocacy organization with 19,000 members, a 10-person staff, and hundreds of activists and volunteers in the United States and abroad.

Although breast cancer has received a lot of attention, the problem has not been fixed. And BCA is still here to help change things. Sadly, all but one of the original founders have passed away, but the vision set for the organization almost 20 years ago lives on.

BCA continues to work for change on the political and social issues that have a significant impact on this disease. One of BCA’s biggest priorities is advocating for more effective, less toxic treatments for breast cancer patients. Central to this work is the role of the FDA — the agency that can help, or hinder, the adoption of these treatments.  More

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In the book Dancing in Limbo, it says,

“Under ordinary circumstances, it is easy to have unrealistic expectations of a partner, friends, or family member. Once cancer enters our lives, we feel vulnerable, and want unconditional understanding and support. However, if this support was not an element of our relationships before cancer, it is unlikely to develop after cancer.”

Two of the people who were closest to me (and two of the strongest personalities) that were a part of my daily life before I got cancer are completely absent from my life now. They did not make it through the diagnosis and treatment with me.

As I went through the months of surgery, treatment, recovery, and learning “life after cancer,” and needed someone to talk to, these two people that I would have called often were no longer speaking to me. If I was confused about how to deal with life after cancer, I was completely baffled about why I lost these two relationships at the same time. I thought I needed a foundation of all of my family and friends – which included these two people – to help ground my life, while the rest of my world felt like the rug had been pulled out from under my feet.

I was wrong. I have come this far without them. And other people who were not a part of my daily life before have become an important part of it now.

In a section of the book called, “There are no perfect families,” it says: “Because we also have high and often unrealistic expectations of our families of origin, there is the potential for feeling devastated. Dorothy tells a sad story about her sister, on whom she relied and whom she had expected to help her through her illness. ‘. . . .I thought she would be my biggest support, but it just became too much for her and she never came to see me and barely phoned me. That was upsetting for me. It was like being deserted.’”

I called a friend in another state that has lived with cancer for a few years and she told me she had a similar experience. One of the strongest women in her life, one of her closest friends, intended to go with her to her medical appointments, and they discovered it wasn’t going to work. They butted heads and their friendship was in jeopardy. They had to change the expectations they had of each other or forget it.

“Cancer seems to bring out magical thinking in spades. Not only do we place impossible expectations of protection on our partners, we also expect our families of origin to respond in ways that belong to fantasy. Because family is family, we usually expect even more from family members than we do from anyone else. And they expect more from themselves.”

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books.jpg

I knew nothing about breast cancer when I got my diagnosis.  During the visit when she told me I had cancer, my surgeon asked me what I wanted to do.  It was like multiple choices, and went like this:

Lumpectomy or mastectomy?  I said mastectomy.

One side or both?  I said both.

Reconstruction or not? I said it depended on my insurance.

She said that insurance companies are now required to pay for reconstruction.  I said, okay, reconstruction. 

I ended up doing none of those things.

I didn’t know enough to know what else I should ask the doctor during that appointment. Or how to answer those questions about what I was going to do. I was still stunned from the diagnosis, and as I was saying I would have a mastectomy, I knew I didn’t know enough to make a decision.  I had less than two weeks to try to get enough information to make a more informed decision.  Where to turn?

My next appointment that day was with an oncologist at Rocky Mountain Cancer Centers. I took someone with me who helped me remember what questions I thought I should ask.  She also wrote down all of the answers. That was a good thing because I don’t remember much of what I asked or she answered.

I left that day with a bag full of information. Rocky Mountain Cancer Centers gave me pamphlets and a book I would use to hold my medical records and other information. 

Three things I got that day that were the most helpful to me were the bag to put things in, a book to keep medical records, business cards of doctors, appointment calendars, etc.  And one of the pamphlets that gave me very clear information about my diagnosis. 

Throughout this time I read many things that helped me understand the diagnosis, what the doctors were talking about when they gave me my treatment options, help making decisions about treatment, and understanding what I was going through as a new cancer patient.

My intention is to list on this blog some of the information, resources, and books that were the most helpful to me.

Breast Cancer Journal: A Century of Petals

by Juliet Wittman

I found this book at a hospitals’ Complimentary and Integrative Therapy program when I was in the city having radiation treatment.  It was the first book I read on breast cancer from a personal experience perspective.  The author detailed her experiences, reactions, and determination to take charge of her treatment, from her diagnosis through chemotherapy and radiation.  It was important for me at the time to learn how another woman handled the diagnosis, made decisions, and went through treatment while I was still processing these things for myself.  

A good omen for me – when I went for my first visit to the radiation treatment center, the doctor I saw that day had been the author’s oncologist! He was also filling in for my regular radiation oncologist on my last visit, when I was able to joke about him being famous. He was pleased that I had heard about him and read the book, but he was also humble — the nurses had no idea about the book until I told them that day. 

 

Dancing in Limbo: Making Sense of Life After Cancer by Glenna Halvorson-Boyd and Lisa K. Hunter

Real-life experiences of surviving cancer – what life is like after the whirlwind of doctors’ visits and treatment comes to an end. 

 

I knew my life would never be what it was before — my previous “normal.” But I was having a hard time telling what my new “normal” was going to be.  I called my local small town hospital and those in neighboring towns and found out there were no support groups. If there were, I would have gone, at least for a while, to hear how others felt about this post-treatment period and what they did. Then I remembered that the social worker at my oncologist’s office had given me her card and told me I could call her any time.  I called and asked her how to find a group or individual to talk to and she gave me a calendar of events (in the city) but recommended that I get this book.

What I learned from this book is that what I was going through was, once again, very common. The survivors in this book talk about re-creating their lives with meaning and purpose, as they confront a myriad of emotions.  The time is filled with ups and downs and if there is one thing that’s certain it’s change.  The book tells us how others have learned to live with uncertainty, what to do about fears of recurrence and the wisdom of those worries, hope, grief, loss and courage.

I have been determined that I will not go through this experience with cancer without learning something from it.  I found myself and everything I was going through in this book, as well as some things I haven’t gone through (yet).  The book discusses expectations – ours and others, the craving for certainty and the need to control, and giving up the illusion of control, along with a lot of other things, and learning to be okay with that.

The illusion of control

When I got very frustrated, I would put on my tennis shoes and walk out the back door and go storming down a gravel country road.  I always pick up a small rock to carry with me on my walks to ground me, to bring back and put in a jar to count the walks and sometimes remind me of the experience. I usually choose something smooth and soothing that I can rub as I walk. This day I picked up two larger rocks. One of them was course and jagged and tore into my hand if I held it too tightly. The other was plain and ugly and heavier than it looked like it ought to be. 

I grasped both tightly and counted my breath and walked 3/4 of a mile and turned into a center pivot road and headed into a cornfield.  I walked to the well and stopped for a while, still holding the rocks.  Instead of being soothing, they were becoming a burden. I decided to name them.  The jagged one became my need for control.  It was hurting my hand, and would make it bleed if I grabbed any harder.  I called the ugly heavy rock in my other hand the illusion of control.

 

I rested and then headed back to the road.  I began to loosen my grip on the jagged rock, and after reaching the road, I finally decided I’d had enough of it and I stopped and flung it as far as I could, then felt the relief in that arm from letting go.  I kept the other one — the illusion that I ever had any control in the first place.  I wasn’t quite ready to let it go. I wasn’t ready to leave everything I was clinging to on this one walk.

I kept thinking that I would just drop the rock some time before I reached my house, but when I got to my back step, I still had it.  So I set it down on the cement porch outside the back door.  It was winter, and we had cold winds and a little snow, not much.  When I would leave the house in the morning to go to work, there was that darned illusion of control, sitting there as a reminder.  One day when I left the house I thought it seemed smaller and I took a closer look.  I discovered it had turned into not-a-rock. It was no longer a timeless, immutable object.  It was a something man-made and modern.  Like a piece of cement. 

Every day when left my home and returned to it from work, I checked the size of that Illusion of Control, and every day it grew smaller.  It was melting, like the bad witch in the Wizard of Oz.  I started looking forward each day to seeing it dissolve. One day I got up and it was the size of a pea.  The next morning it was gone. There was nothing left on the step but a dab of mud. The next day, it was dust, and the wind came up and blew it away.

 

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Spring. New beginnings. Looking forward to the new job.  Looking foward to all things new.  Opened up the doors and windows today and let the breeze blow through the house as I take down the curtains and throw them in the wash, and begin sweeping out those real and emotional cobwebs and dust bunnies and then shinin’ up the floor. 

Set an empty box in the kitchen for all the things I have that I don’t need.  . . and wondering where to draw the line on that.  I don’t want to get too carried away! But I want to rid my life of all the heavy things that weigh me down. 

These things are both real and metaphors, and the housecleaning will freshen up both the house and my emotional life.

This is surely something that farm wives knew that gave them energy to do that thorough “Spring Cleaning.”  

It freshens up life, urges us to plant, and cleans out space for our new harvest later on.  Everything to its season.

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“Everybody needs something to look forward to.” – My dad.

A few months ago when I was talking with a “friend” about how I needed to move on from the job that I have, he told me that a woman my age with my history of cancer would never be offered another job.  He confirmed what I feared.  I waited for 6 months to see if I would begin to have more energy after going back to work. Finally I realized this may be it. This may be as much energy as I am going to have.  When I get home I am too tired to do anything or care about it. Getting farther behind with taking care of a home and small acreage.  Sleeping on the weekends, going back to work on Monday and doing it all again. Telling myself how fortunate I am to have a well-paying job with health insurance.  Getting more discouraged and depressed.

My “friend” was wrong.  I was offered another job.  But for the same reasons, (my age, my medical history), it was very frightening to consider making a change.  What if I get sick and can’t work?  What if I lose my health insurance?  Then I realized those were the same fears I have with my current job.  What would be different? 

For three months I let it simmer in the back of my mind while I waited to get through my first post-treatment checkups and tests and to give myself a chance to start feeling better.  I was walking outdoors whenever the sun shone and the wind wasn’t blowing 40 miles an hour or more. Riding an exercise bike 5 miles every day. Still feeling groggy and unable to focus on what to do.  And still feeling overwhelmed at work. It was taking more than 40 hours a week to get my job done, at the same time that I had less than 40 hours a week of energy to invest in the job. My job was overtaking my life, as it consumed most of my waking hours that I had any drive to accomplish anything.  Not acceptable.

I TOOK THE NEW JOB. I made a decision to leap into a new future.  To work with women doing work important to me.  To work out of my home. To be in my home. To have time to care for myself.  Time to drive out of town to visit my family.  Time to LIVE.  I can see new possibilities . . . . a garden.  Creating my environment again.  Sweeping out the dust bunnies in the corners and in my brain. 

Next Friday is my last day of work at the old job.  I’ve already cleaned out the desk.

Audre Lourde said:

I knew if I lived I could live well.  I knew that if the life spark kept burning there would be fuel; if I could want to live, I could always find a way, and a way that was best for me.” – Audre Lourde, The Cancer Journal

I think we have to seize the opportunities we have to live well.

 

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I have been feeling so full of grief lately, so unable to move on, so stuck in this post-treatment confusion: is it okay to try to go back to my “normal” life? Is there something else I should be doing? Why am I still so tired? What is this grief I feel? Do I need counseling?

Today I got so tired of this whiney pitiful me and told myself, “Suck it up!”

But I also made a phone call and got an appointment to see a therapist — just to have someone to talk to through this and move to the other side of it.  To make some sense out of it.

I keep hearing people say that those who do best are those who have a good support system.  I know I don’t have one. I belong to that tribe of independent rural women who live alone, cultivate our solitude, and although we talk about how wonderful it would be to live in a close community with each other, we know that we don’t really mean it because we just like the idea of it, but couldn’t handle the reality.  So when these things hit, we’re not prepared.

“He ceased to be lost not by returning but by turning into something else.” Rebecca Solnit, A Field Guide to Getting Lost

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Wow.  I was overwhelmed by emotions I did not expect.  I did not know whether they were “normal.”  I wasn’t prepared for them and I didn’t know how to handle them.  It was important to know if what I was going through was “typical” for a newly diagnosed cancer patient, what to expect, and where to turn for help.  Today I found this guide to dealing with emotions.

LBBC Releases Guide to Understanding Emotions.
Our new Guide to Understanding Your Emotions will help you understand the variety of emotions you may experience after diagnosis and treatment and practical ways to move forward. . . . .

(The guide includes resources for)  . . . 10 Places to Find Help for Emotional Distress, 10 Times to Consult a Mental Health Professional, 10 Ways to Support Yourself and Helpful Resources for Finding a Mental Health Professional.

Download a free copy HERE

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Exercises such as yoga are helpful as the exercise can be tailored to each day’s energy level. Patients should be encouraged to create a healthy and pleasing environment. Many modalities should be suggested, eg, healthy diet, regular sleeping habits, and creation of a restorative environment with fragrance, sound, and visual effects.  From NOT JUST TIRED

I would LOVE to create a healthy and pleasing environment . . .for yoga, meditation, or even just sitting down after work to read a book or watch the news.  I’ve come to the conclusion that the energy level that I have now may very well be the maximum I’m going to attain.  It’s been a year since my diagnosis, eight months since I finished treatment, and about three months since I mark the end of the worst of the post-treatment fatigue and fog.  But my full-time job has taken all of my energy, and when I go home after work, I am done for the day.  On the weekends, I pay bills, do laundry, and may get one room cleaned, or one other job done. And rest. My job has consumed my energy, which means it has consumed my life.  Very depressing.  Time for changes.  I felt I didn’t have any options, but discovered that I do, and I must make changes no matter how scarey it is to be my age, with my medical history. 

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Cancer related fatigue is profound and difficult to explain.  I ran across this article online, which describes this fatigue for patients and caretakers and provides helpful responses.  From Journal of Clinical Oncology, Vol 19, Issue 21 (November), 2001: 4180-4181 American Society for Clinical Oncology .  Excerpts:

HELPFUL INTERVENTIONS
How can we help our exhausted cancer patients and families for whom prolonged symptomatology is difficult to comprehend? Health care professionals must recognize that cancer-related fatigue is different from fatigue experienced by otherwise healthy persons. Caregivers and family must also be so educated. While exercising or a nap may be helpful suggestions to normally fatigued persons, these may not be the solutions for cancer fatigue.

It must be recognized that each patient is unique. The extent to which cancer fatigue disrupts normal activities will vary widely. 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.

. . . . . . . when I can no longer carry on with an activity, this margin is very clear. Attempts to finish a task or pursue a project are unsuccessful. Empty is empty. I do not seem to have a safety margin where, although the needle is on E, there is sill energy to spare.  Article

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This is from a Portland poster in the Best of Craig’s List. 

 Cancer rant

http://www.craigslist.org/about/best/pdx/465030621.html

Includes “there is no ‘good’ kind of cancer,” “don’t tell me things I don’t want to hear,” “DO NOT ask me about my hair,” “don’t tell me it’s going to be okay,” etc.  It’s a MUST READ.

 

———————

MORE things not to say or do . . .(I’ve highlighted some of them that I wish people hadn’t said to me). . .

Here are some things that the girls on YSC came up with and their responses…

 

 

  • You could step off the curb tomorrow and get hit by a bus” (not a good analogy, its like I already got hit by the bus and now its backing up over me)
  • “You gotta think positively(ok, I’m positive I had cancer, and I’m positive it wasn’t fun)
  • “You’ll be fine”
  • “So, you’re fine now right?”
  • “My grandmom died of that”
  • “nice fro”
  • “God gives you what you can handle”
  • “What’s your prognosis”
  • “Can I see what is going on under that hat?”
  • “If anyone can beat it it’s you”
  • “If it’s not your time, it’s not your time” (then why bother with the surgery and treatment?)
  • “Life is not fair” (thanks for the heads up)
  • “Every cloud has a silver lining”
  • “Its just a bump in the road” (living with a cancer diagnoses, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road its a major mountain.)
  • “Don’t worry”
  • “Your lucky you didn’t lose weight on chemo”
  • ‘Remember Lance”
  • “You gotta be like Lance”
  • “Lance beat cancer”
  • “Just look at Lance”
  • “Just think, you’re done” (done? I’m done?…I guess I’m done with cancer everyone. Nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence)
  • “You look good bald”
  • “So, was the cancer bad?” (no, I had the good kind)
  • “This is a treatable disease”
  • “You have a nice shaped head”
  • “How do you know if it’s working?” (I die, if it didn’t work)
  • “You know you can eat more curry, its supposed to kill cancer cells” (great tip, thanks)
  • “You’ll be fine, you have a great attitude” (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? right now my attitude about cancer is lousy. what does that mean?)
  • “If you really want to live, you will. Just never give up. when people give up, they die”
  • “Don’t worry, your hair will grow back”

Thanks for the great comments to the girls on the Young Survival Coalition.

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Online advocacy training

National Coalition for Cancer Survivorship provides online training on how to become a legislative advocate.  Check it out here.

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Survivor toolbox

Cancer survivors who write about their thoughts and feelings may improve the quality of their lives, according to a study covered in a New York Times blog on February 26, 2008. The study, which appeared in The Oncologist, found that cancer patients who wrote about their emotions experienced benefits immediately after the exercise, and that the positive effects remained three weeks later.

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“Studies show that nearly a quarter of cancer patients will have symptoms of depression or an anxiety disorder during treatment. However, feelings of anger or sadness about your cancer and the changes it brings are normal and may actually help you cope.  . . .  The National Comprehensive Cancer Network www.nccn.org has developed systematic distress management guidelines that can be used by health care professionals as a screening tool.  (NCCN experts chose the word distress rather than depression because they felt the term carried less stigma and more accurately described patients’ emotional states.) . . ”  Cure Magazine

The article suggests that for these people, support groups, buddy systems and cancer education programs are useful to help patients gain a sense of competence and control.

Support groups and other support systems may be laking in rural areas. Self- and community advocacy should include identifying this need and helping to encourage the formation of support groups.  Should support groups be facilitated? Experts think that facilitated groups are more helpful. How do we get facilitators for these groups?  Call the cancer advocacy programs that serve your area and ask them how funds raised in your community are spent and urge them along with your local clinic and hospital to provide a facilitated group in your area.

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“Labels about cancer can lead us to guilt, which can be a huge burden for newly diagnosed patients. You may feel guilty about causing your cancer, about having your family go through it, or about not being able to do what you did before, if only for a short time.  . . .

It’s not unusual to try and find an answer to why your cancer developed, but focusing on the cause can lead to additional stress. A recent study of women newly diagnosed with breast cancer showed those who blamed themselves for their cancer experienced higher levels of distress than those who didn’t. The findings also suggest self-blame negatively affects a patients’ ability to psychologically adjust throughout the year following diagnosis.

. . . you have the capability to stop blaming and judging yourself by realizing you cannot change the past, and must concentrate on moving forward. Guilt is a barrier to living your life fully . . . .” Cure Magazine.

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attitude.gif“As you begin to tell others about your diagnosis, you may feel pressure to maintain a positive attitude, which can be especially difficult when you are scared, anxious, or not feeling well. False optimism is unrealistic, and experts say feeling that you are not ‘doing cancer right’ can be a huge burden. No compelling evidence exists that emotional outlook affects survival, yet people unaffected by cancer often expect and encourage those with the disease to exhibit a positive approach despite how they are really feeling.

 (On the other hand) . . . . .”People, as well as their reactions to cancer, can differ greatly. For some, maintaining a positive attitude is their preferred method of coping.”  – From Dealing With Emotion: How to recognize normal reactions at diagnosis and when you need help. Cure Magazine.

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