A rural woman’s breast cancer journal

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 Action - The Facts and Nothing but the Facts

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

The need for validation
A Survivor’s Journey: One Woman’s Experience with Cancer-Related Fatigue
Maureen Gilbert

What a difference it would have made if my fatigue had been acknowledged! What validation I would have had. I knew that gloom was a byproduct of fatigue and not—in my case, at least—the other way around, so “treating” the gloom would have been pointless. What a comfort there would have been, however, in knowing that my exhaustion was being monitored, was being taken seriously. Instead, there were times when exhaustion was all there was, my own and that of those around me, times when fatigue seemed to expand to fill the whole world—the fatigue of dealing with what had been and with what was coming, of readjusting constantly, of negotiating endlessly.

The worst thing about the fatigue was how it stymied and befuddled all my best efforts—and, boy, did I make efforts—to reframe my cancer experience positively, to see the (truly wondrous) good in it. Navigating my way through the fatigue to access the resources that I knew I had was the really tricky bit of the journey. When I wasn’t worn out, I could get on with my life, no matter how compromised it might be at any given point. When I was fatigued, nothing else existed at all.

I am totally convinced that an acknowledgment of my fatigue would have alleviated many of its excesses. I was doing my utmost—a healthy diet, meditation, counseling, as much exercise as I could manage, and lots more besides—to cope with my fatigue. I needed to know that my exhaustion wasn’t the result of a want of imagination or some other lack in me or my attitude. For me, anyway, how I feel at any given time is less crucial than how I feel about how I feel. Validation of my fatigue as an integral part of the cancer experience—in terms that were supportive—would have made all the difference and, very likely, would have broken the fatigue-gloom cycle. I didn’t need to hear of “sleep hygiene” with its pejorative implications. Nor did I need pills or potions to block out the experience. I knew I needed to feel it all fully, if I were to grow through it, to turn it to my advantage. I knew I had healing resources within myself if I could just push through the fatigue to access them. What I needed was to be held safely in that place.

and Link: Boobs on Ice

Not only do I believe that it’s necessary for this overwhelming symptom to be recognized and brought clearly into the light of day; it’s just plain time to do something about it. Recognizing it and acknowledging it is certainly the first step.

If you’re a patient:

Be assured that we understand you are beyond exhaustion, that it is real we encourage you to insist to your doctor that it’s a serious part of your cancer experience. If the first one doesn’t do something pro-active to try to help, see another doctor. No platitudes, no sympathy, and no telling you to tough it out is going to help you feel better.

If you’re a friend or relative of someone with cancer 

Please know that their symptom is not something that a nap can simply take care of, whether their doctor gets that or not. Help them find a medical professional who is able to think outside the box. Let’s face it; they are likely just too worn down to do this themselves.

In the end discounting cancer exhaustion makes it worse for the person experiencing it, for those around them who are baffled by it, and for the goal of reducing the impact of the disease in every way possible.  More from Boobs on Ice

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.”

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.

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.

“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.

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

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

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. 

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

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.

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

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.

“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.

“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.

“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.