About Me

My name is Karen and I am a retired social worker. I hold a Master’s Degree in Social Work from Adelphi University; I am licensed to practice Social Work in the state of New York and I am accredited by the National Association of Social Workers (ACSW). I am also a Breast Cancer Survivor. I’m not sure why, but I am not fond of this term. I certainly want more than anything to SURVIVE, but I’m not fond of labels. I guess there is a part of me that just wants to be the “me” before my diagnosis. I don’t want “survivor” to be my identity; I do not want cancer to define me. I do, however, understand the necessity of labels in providing an identity for funding and for kinship. Both “survivor” and “warrior” (I believe the term “warriors in pink” originated with the Ford Motor Company in their efforts to raise funds for the cause) can be empowering in that they depict the strength and endurance necessary to fight this disease and to raise the funds necessary to find the cure.

Everyone with cancer goes through their own private war and prays to come through their battle a winner. Your body becomes a battleground and the disease and the treatment processes are an assault on the body and the mind. Your life is never quite the same again, no matter how much you might want to pretend differently. My experience in battling this disease and the accompanying psychological impact is my reason for writing this blog. There are psychological/physiological and emotional reactions that when understood can be somewhat less frightening. The recognition and understanding of these responses as “normal” is an important component to the healing process of body and mind.

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The Journey – Knowledge

    knowledge

    I was a medical social worker in a hospital which entails assisting and counseling patients and their families regarding adjustment to illness, assisting patients and their families to navigate through the medical, the insurance and the social service systems (if necessary), and to assist with safe discharge plans for after care. I predominately worked in the cardiac care step down unit, but we tended to rotate as some units are more emotionally demanding than others. It just so happened that when I discovered a mass in my right breast, I was working on the oncology unit. On this unit you don’t get to see too many success stories. Usually by the time someone is spending long periods of time in this unit and a social worker is involved, the battle has been lost. I and my colleagues counseled many young men and women just beginning their adult lives, many with husbands or wives bringing toddlers to visit. I saw so many beautiful young people leave this world with as much dignity, as possible, and many times with a sense of peace and acceptance. When I found my lump I was 58 years old, so I never thought to ask “why me?” I had seen too much and under those circumstances, “why not me?” I had two grown children, three grandsons, and had been divorced for about seven years. I was engaged to be married at the time of my diagnosis in October of 2004 and the wedding was planned for December.

    I had been for my annual gynecological checkup in June which of course, included a breast exam. Nothing was detected. But by October, four months later, I had a three centimeter mass on the underside of my right breast. On November 4th, I was wheeled into the operating room following a sentinel node biopsy (inserting a needle that injects a blue dye near the tumor. The blue dye follows the same path to the lymph nodes as the cancer cells would take. This gives the surgeon a “path” to follow to assess lymph node involvement.) My surgeon practiced breast conservation attempting to remove only the amount of tissue around the mass that he thought was necessary. The pathology report during surgery showed no lymph node involvement and this was a relief following the operation. However, the final pathology report a week or so later showed that the margin of healthy tissue in the breast was not wide enough, so on November 18 I was back in the hospital for additional tissue removal and the result was a partial mastectomy. My surgeon attempted to assure me of an excellent prognosis. The final pathology reports revealed that I had a Stage II Invasive Ductal Carcinoma which is the case in approximately 80% of breast cancer patients. Additional news in the pathology report showed that my cancer was a particularly aggressive type known as HER2+, so although there was no lymph node involvement, I would require chemotherapy and radiation treatment. Approximately 1 in 4 patients with breast cancer has HER2+ breast cancer. HER2+ breast cancer cells have more HER2 receptors (a particular protein found on the surface of cells) than normal breast cells. Having too many HER2 receptors may make the cancer cells grow and divide faster, creating more HER2 cancer cells. Because it grows and spreads quickly it is considered an aggressive cancer.

    There is nothing that prepares you for that moment in time when you are told that you have cancer. Many psychological studies have shown that the moment of diagnosis is the most traumatic moment of the cancer experience. Baum and Posluszny (2001) explain “that when a patient first learns about their cancer diagnosis a challenge is presented to their beliefs about the world and their sense of safety and it may cause patients to reconsider life priorities, expectations and aspirations.” I have found this to be true, but I have also found that in addition to the initial diagnosis, there have been many traumatic moments.

    Most people are familiar with a disorder known as Post Traumatic Stress Disorder (PTSD) in terms of war veterans,victims of mass violence,or possibly regarding survivors of incest or stranger rape. The Diagnostic and Statistical Manual (American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders text revision. Washington D C:American psychiatric Association;2000) DSM for short, is used by the mental health field for diagnostic purposes, as its name implies. It is revised periodically with knowledge advancements in the field. Post Traumatic Stress Disorder is one of the diagnostic categories in the manual. The earlier manuals listed trauma in their criterion as caused by a stressor “outside the range of normal human experience,” such as would occur in a war, situation of random and mass violence, or in a situation of incest. The DSM 4th edition changed the criteria by omitting the description of the stressor as “out of the range of normal human experience” to require that the individual’s experience in response to a stressor must include intense fear, helplessness or horror. The definition now includes the experience of a life threatening disease.

    I have reviewed professional journal articles studying whether breast cancer can cause PTSD. I have found that most studies find the percentage of cancer survivors with PTSD to be statistically low, unless these cancer survivors had also experienced earlier traumatic events in their life. It is not my purpose to do a study or argue other study’s conclusions for or against. My purpose is personal, to describe what I felt and still feel at times in the hope that sharing this information might provide some new knowledge and insights that could create a better understanding of what breast cancer survivors are experiencing. I don’t believe that I have Post Traumatic Stress Disorder, but I did and still do, to some degree, experience some of the symptoms included in the criteria. I believe that many of the symptoms are experienced to some degree of discomfort by most people experiencing a life-threatening illness. The DSM and the diagnosis of PTSD represent the most severe end of the spectrum of symptoms. In order to be considered a diagnosis of Post Traumatic Stress Disorder the disturbance must cause clinically significant distress or impairment in social, occupational, or other important areas of functioning and must last for more than one month. But, many of the symptoms are a normal response to trauma. The symptoms do not have to cause clinically significant distress in our lives to cause discomfort or confusion. Not understanding our emotions can also have the potential to affect response for the need for ongoing self care. Once I recognized what I was experiencing, I felt less discomfort. Knowing the nature or origin of a problem is the first step in helping that problem. I will “break down” the criteria into its separate clusters of symptoms relating my personal experience with the criteria. If you wish to view the full criteria for PTSD in its entirety, see the indicated post.

    A)      “The individual has to be exposed to an event that includes the personal experience of actual or threatened death, serious injury or the integrity of self or others; and, the response involves intense fear, helplessness or horror.”

    People diagnosed with a life-threatening illness, in my case breast cancer, experience the threat of death, intense fear, and a sense of helplessness.  The injury to our body is not caused by an act of violence or an accident, but by the necessary surgery and treatment to save one’s life.  Having one’s body changed by the loss of a breast or breasts is a disfigurement to our bodies, the body that we’ve known to be part of our self and our identity all of our lives.   The integrity of self is affected; my sense of self was one of health, safety, and soundness. Following the diagnosis, that illusion was gone.  One moment: healthy person in charge of one’s life.  Next moment: a life-threatening illness where I am in charge of choosing my health care providers, but then must turn control over to them.  There is also the aspect of an uncertain future. One study ( Medscape 2004) found “ the difference between a medical related stressor and a more conventional stressor is a matter of time.  Conventional stressors are often acute events.  However, being diagnosed with a life-threatening illness also contains a future oriented aspect representing fears and worries about treatment, survival, recurrence, stigma, and the persistence of life-threat and new dangers yet to come.”

    B)  “The traumatic event is persistently re-experienced in one or more of the following ways (a) e.g. images, thoughts or perceptions (b) distressing nightmares, (c) acting or feeling as if the event were reoccurring (e.g. a sense of reliving, illusions, dissociative flashbacks episodes), (d) intense psychological distress at exposure to internal and external cues that resemble an aspect of the event, physiological reactivity on exposure to internal cues and external cues that resemble an aspect of the event”.

    With a life threatening illness, the traumatic event is persistently re-experienced.   I experienced anxiety filled dreams, often not appearing to be directly related to the cancer diagnosis, but having varying themes of helplessness.  We literally re-experience as we must continue to have follow up doctor visits and diagnostic tests.  Awaiting results from pet/cat scans, mammograms, blood work, etc. is a bone chilling experience that, of course, causes psychological distress.  Waiting for the results places you back in time waiting for your initial diagnosis.  Images, thoughts, perceptions of the original diagnosis are all present.  It is very difficult not to have a sense of reliving the experience.  Physiological reactivity on exposure to internal or external cues that resemble an aspect of the event while being examined or tested can also be present. For example prior to a mammogram, I generally experience rapid heartbeat and sweating palms. Stress hormones norepinephrine, epinephrine and cortisol are released causing increased blood sugar, increased gastric acid and immune system suppression.  Its purpose in our bodies was meant for survival, flight or fight response.  But, obviously in our context it is uncomfortable and unhealthy.

    C)  “Persistent avoidance of stimuli associated with the trauma and numbing of general responsiveness.  This must be indicated by at least three of the following symptoms: (a) efforts to avoid thoughts, feelings, or conversations associated with the event, (b) efforts to avoid activities, places, or people that arouse recollections of the event, (c) inability to recall an important aspect of the trauma, (d) markedly diminished interest or participation in significant activities,( e) feeling detachment or estrangement from others, (f) restricted range of affect, (g) a sense of a foreshortened future.”

    I think that symptoms from Criteria C have the potential to be the most dangerous.  Efforts to avoid thoughts, feelings, or conversations associated with the event, efforts to avoid activities, places, or people that arouse recollections of the event can all cause a lack of on-going medical follow up.   Fears and physiological reactions can easily cause us to avoid doctors and tests.  Healthology.com/breast cancer/article 3774.htm states that “many survivors are not seeking annual mammograms.”  The article states that “denial can play a part in this”  It is the overwhelming fear of reoccurrence that causes the mind to “escape” into denial mode(psychologically it is called a defense mechanism.) In denial the mind avoids any triggers related to our cancer diagnosis.  If we allow these fears regarding receiving a positive mammogram result to keep us from caring for ourselves, this is the biggest danger of all.  To prefer not knowing and to assume that we are safe through the accompanying use of denial is a major threat to our health.  We must recognize the fear, “name it, own it” and take away some of its power.

    Feeling detachment or estrangement from others and having a sense of a “foreshortened future” was a problem for me.  However, once recognized as a “normal” response to a life-threatening trauma I felt major relief.  At first I thought that my sense of a foreshortened future was a type of premonition.  I had difficulty making any long term plans and felt detached and estranged from all the people around me that had no difficulty with making future plans.  However, when I realized that what I was feeling was a normal response to trauma, it lost its power to cause me heightened anxiety.  I came to the realization that what was normal for people that had not experienced a life-threatening trauma, was not going to be as easy for me.  I had a “new normal.”

    D)     ” Persistent symptoms of increased arousal, as indicated by at least two of the following: (a)difficulty falling or staying asleep, (b) irritability or outbursts of anger, (c) difficulty concentrating, (d) hypervigilance, (e) exaggerated startle response.”

    My days were very busy.  I was working full-time and managing all other aspects of daily life which kept my mind absorbed.  But nighttime when preparing for sleep became a problem.  Then my mind wouldn’t “close down.”  Those nagging memories and fears would creep into my mind and sleep would become elusive.  This becomes better with time, but be aware that experiencing sleep problems following trauma is “normal.”

    I normally have an easy going personality, but I had an experience with a sales person that was very out of character for me and enlightened me regarding my “buried ” anger.  I had purchased some lovely nightgowns for my honeymoon, but following my surgery they were no longer appropriate for me.  I was returning them to the store to exchange for some more appropriate, but hopefully still attractive nightgowns.  Evidently, I was not in touch with the anger I was harboring regarding the whole situation.  Before I knew it, I was taking it out on the poor sales person who was a young woman.  She asked me what the problem was with the nightgowns I was returning.  I could have been tactful, but I blurted out that I had had breast cancer surgery and these particular nightgowns were no longer appropriate.  I can still see the expression on that poor girl’s face.  She had no idea what to say and I had been cruel to put her in that position.  I think it was at that point that I realized that I was carrying a lot of anger along with many other emotions.  I also found that some reading material angered me when I felt that well-meaning, but ill informed doctors made upsetting statements.   I can’t site the article, because I don’t have the reference, but the author stated that maybe hypervigilance was a good thing because it caused cancer survivors to be more aware of their bodies and to seek help quickly.  I wanted to scream NO, NO, NO!  Hyper is not good.  It is anxiety provoking and worrisome.  Vigilance is GOOD.  We should all be vigilant regarding changes in our bodies, survivors included.

    I have selected the symptoms from the criteria that I felt affected me the most.  You may see yourself in the same criteria or others, but be aware that many of these responses are normal. If the time comes that the disturbances cause clinically significant distress or impairment in important areas of your functioning be aware that it is time for professional assistance.

My Chemotherapy and Radiation

My first visit with my oncologist involved a long discussion regarding the type of cancer I had (HER2) and the type of treatment that is the Standard of Care set by the medical profession for my type of cancer. My oncologist encouraged questions and was extremely patient with my need to know what were choices and what were not (of course, everything is a choice, but I wanted to do everything possible to increase my odds for a healthy life). He explained that I would require 6 months of chemotherapy (eight treatments three weeks apart). I would require an out-patient surgery to implant a port in my chest. The port is a disc about 1-1 1/2 inches in diameter. It has a long and hollow tube, known as a catheter. The tip of the catheter lies in a large vein just above your heart. The other end connects with the port, which sits under the skin on your upper chest (sometimes they are placed in the arm). You can see and feel a small bump underneath your skin. With a port it is not necessary to have needles put into the veins in your arms every time you have a treatment.

The first four treatments would be with Adriamycin (this is the toxic drug that causes hair loss) and Cytoxan. My doctor explained that the hair loss would begin before the second treatment, so I should decide on a wig and should have it ready for use between the second and third treatment. I did some research on wigs and found that synthetic wigs are very susceptible to heat (such as bending into the oven to remove a dish, they can singe a bit), but many women prefer to buy a few different synthetic wigs in different colors and styles to change it up a little. But, I enjoy cooking and I wanted to look as much like myself as possible. With my husband’s urging not to worry about the cost, I chose a human hair wig. I always have short hair which is a dirty blond with lighter blond highlights. I selected a wig salon that only works with cancer patients and my stylist and I selected three different swatches of hair color and the basic length. She also suggested that I buzz cut my hair into a stylish boyish cut prior to the start of heavy hair loss, so it would not be quite so drastic for me. I followed her advice and everyone, including those that did not know about my cancer diagnosis, loved the look on me. When my wig came in, my stylist placed it on my head and styled into my normal hair style. If you didn’t know that I was wearing a wig, you would not have known. Losing one’s hair is not easy to deal with and the first time you run your hand through your hair and come out with a handful, it is one of those gut clenching traumatic moments. A sense of sadness can be overwhelming. However, it is good to remember that hair is a fast growing cell and so are cancer cells. It is the chemo’s job to kill those cells, so think of it in terms of success.

Of course, chemo can’t tell the difference between cancer cells and healthy cells, so with chemo therapy you and your doctor begin a very important “balancing act” to keep you “healthy” while your treatment is working. You require close monitoring of your red and white blood cells and platelet count, etc. To increase your red blood count (red blood cells carry oxygen throughout your body) a shot of Procrit is required a few days after treatment. An injection of Neulasta is given to increase your white blood count. It is your white blood cells that fight infection in your body. The Neulasta does have side effects. The main problem is bone pain, but that can be helped with pain killers.

The last four weeks I took an infusion of Taxotere. My doctor explained that most doctors were giving infusions of Taxol at the time, but that the long term effect with Taxol is often neuropathy, a numbing of the feet and hands. He thought that I would have the same benefits with Taxotere, but less of a chance of long term neuropathy following treatment. I decided on the Taxotere. I was hoping to return to as normal a life as possible following my treatment. My doctor explained that I would need to contact my surgeon and schedule a day surgery to have the port inserted in my chest in which they would administer the chemo treatments. Not only does the port eliminate constant pricking of your veins, it is also unwise to use your veins as you would with a normal IV. The chemicals are so toxic that they can cause damage if a vein should be missed during infusion and veins that are used often for treatment can collapse after repeated usage and make treatment much more difficult.

As I stated earlier, I used “every weapon in my arsenal” to feel as well as possible during treatment and to minimize any long term effects of treatment. I believe that a monthly massage not only feels wonderful, but aids in blood circulation and relaxation. Prayer, meditation, positive visualization, gentle yoga, acupuncture, and journaling all contributed to the healing of my mind and my body. More details on each are available in other blog posts.

My last day of chemotherapy was in June, my first day of radiation on July 25th.  There were three preparation visits requiring a physical, a CAT scan, a permanent blue dot tatoo on chest for correct “placement” of radiation.  There was also a “dry run” so I would have a better idea of what to expect.

The radiation went well.  I did not experience any nausea or debilitating fatigue (had radiation every week-day morning prior to going to work; did not require any sick days).  I only experienced some very mild pinkness and slight rash in a small concentrated area.  I used only aloe gel on my breast at the advice of my radiologist.  I had a total of thirty-three treatments.

Coping – “Making My Way Through”

Journey

This leads me to what I found helpful in “making my way through” the diagnosis and the debilitating results of treatment.  First and foremost, having a strong support system is key.  I am blessed with an attentive husband (who married me post- surgery , but pre-treatment), wonderful and supportive children and their spouses who love me very much, beautiful grandchildren, my brother and sister-in-law (who along with my husband never missed a chemo session), strong friendships, and I was surrounded at work by caring and knowledgeable  social  workers, nurses, and doctors.  I knew right after my diagnosis who I wanted for my oncologist.  I had watched him care for his patients and I knew the depth of his knowledge and his empathy.  I realize that because of my profession and my surroundings, I had a major advantage that many people don’t have.   If you don’t have a strong support system, create a system through support groups in your community.  On-line support in varying forms is now available also (refer to Helpful Resources located main bar of blog).  My daughter recently used facebook to request a real hair wig for a friend of a friend.  I had offered my short blond wig, but this young woman has long dark hair and, if possible, did not want her appearance to change dramatically.  My daughter got a positive response and a wig was offered.

I found books to be helpful:  my three favorites regarding cancer specifically are very different and each offered a different approach to “making it through the journey.”  I read Don’t Bet Against Me! Beating The Odds Against Breast Cancer And In Life by Deanna Favre (with Angela Hunt). Prayer was a big part of my support system and Deanna Favre’s book showed how her faith brought her comfort and strength during many difficult periods in her life.  It also provides some very clear definitions of procedures that we all have to experience when a cancer diagnosis is made, definitions of side effects such as chemo brain (a sense of “fogginess,” short term memory loss), and provides questions to ask your doctor.  I also have a life time of using humor to get me through tough situations.  So, I could relate to Five Lessons I Didn’t Learn From Breast Cancer (And One Big One I Did) by Shelley Lewis.    It’s irreverent, funny and compassionate.  One quote from the book is “If you honestly think breast cancer is a gift, you can’t come to my birthday party.”  The third book is more of a loose leaf binder full of helpful advice created by Lance Armstrong called LIVESTRONG Resource For Cancer Survivors Lance Armstrong Foundation Survivorship Notebook , which includes survivor stories and emotional topics among many other valuable areas of advice.  It is broken down into sections and is easy to read because you can choose what interests you at the moment.  Although Lance Armstrong’s reputation has recently been tarnished due to doping charges, the book is still a valuable resource. I believe that Lance Armstrong’s name has been removed from the foundation.

To be truthful, I read all of these books post chemo treatment.  I was much too busy just getting through every day to read about what other people were going through.  In addition to continuing to work at the hospital (I took off a few days after each chemo treatment when the side effects were at their worst, especially the fatigue and chemo brain), I went for a monthly massage (my massage therapist was certified by the American Cancer Society and I had received clearance from my doctor to have a full body massage), I went for acupuncture treatments following each chemo treatment to help relieve side effects, I prayed and meditated daily, including positive visualizations and deep breathing techniques to reduce stress, and one of my dear friends and colleague provided Reiki treatments (more details to be provided on each treatment/coping mechanism in separate blog entries).  I was verbal at work about what I was experiencing and received great feedback and support.   My colleagues were attentive and very in tune with how I was feeling physically.  They often told me go sit and rest for a while and they would “pick up my slack.”

I also kept a journal where I could pour out all my feelings (you can read some of my Journal Entries in a separate blog post).  This often helps to sort out just what you are feeling on any given day, hour, minute and allows a safe outlet in which to do so.  Part of one journal entry following my first chemo treatment stated “many mixed emotions during the week: fear, anger, frustration, sadness, depression, anxiety—all fleeting.”   I also found very gentle short yoga sessions very helpful during the treatment course.  It was at the end of a session (I used a gentle tape in the privacy of my own home) during the “sitting” meditative phase when the yoga instructor reminded viewers to “pay attention to their breathing.”  As I was meditating a very persistent thought came into my mind and it said “pay attention to your grieving.” It was such an “aha” moment for me.  I finally had an explanation that seemed to encompass what I was feeling.   I had not really thought about myself in terms of grieving.  I knew that I felt sad and even angry about my loss of sense of “healthy” self, loss of illusion of safety, loss of parts of my body, loss of my hair and resultant loss of body image, but somehow even with all my training, I didn’t connect these feelings to grief.   It was time to allow myself to grieve all these losses.

This brings me to the next area of pertinent information that might bring some “aha” moments for others.  Grief is not only for death.  We don’t have to feel guilty about grieving even though we are lucky enough to have survived.  Feelings are just that….feelings are what they are.  They belong to us and we shouldn’t judge them.  We need to identify them to assist ourselves in how to manage them appropriately.   Elisabeth Kubler-Ross, a doctor in Switzerland, published her book ON DEATH and DYING in 1969 in which she explained her “five stages of grief,” often referred to as the Grief Cycle.  But, over the years, it has been found that this cycle is not exclusively experienced by the terminally ill or their families, but also by others who experience loss of many types.  In attempting to adjust to a loss or losses a person experiences stages of grief.  In Elisabeth Kubler-Ross’s model these stages are:

“Denial:  a conscious or unconscious refusal to accept the reality of the situation.  “This can’t be happening to me.”

Anger:  can manifest in different ways, you can be angry with yourself or others, fate, or even with a higher Power.

Bargaining:  seeking to negotiate a compromise.   I promise I’ll be a better person if…. “I’ll do this…, only if….”  It is a desperate seeking to find a way out.

Depression:  is the realization of the inevitable.  It is natural to feel sadness, fear, and uncertainty.  It is a type of acceptance, but involves emotional connections.

Acceptance:  more objectivity; finding one’s way forward.”

These stages are not fixed in a specific order or timeline.  They don’t occur in a linear manner.  As the word cycle implies, one may experience every stage in a five minute period or one may experience one stage for a day, another stage for another day.  There is no “right” or fixed pattern to the stages and all are normal reactions in a person’s efforts to avoid the changes that have come into one’s life.  But, in the same way that we all experience some of the symptoms of PTSD and must regard them as “normal” to help ourselves understand and cope, we all experience the five stages of grief at some point during diagnosis and the aftermath.  It is important, however, to recognize these stages and not get stuck CLINICALLY in any one stage.  If depression becomes debilitating one should seek counsel.  Obviously, we are all going to experience some situational depression experiencing a cancer diagnosis and treatment.  But, if depression cause a lack of desire or ability to follow through with necessary treatments or tests, then it is clinically affecting your life (literally).  Denial can be just as dangerous if it interferes with the ability to follow through or even consciously recognize that a problem exists.  “Stuck” Anger can harm us by draining energy that we don’t have to spare; anger turned inward can exacerbate depression and turned outward can hurt others.  Bargaining is a inner negotiation that is helping us to find our way out of our situation, but Acceptance must “arrive” even if only for short bursts of time so that we can move forward to accept the diagnosis and the need for on-going care.

Breast Reconstruction

Breast reconstruction is not just cosmetic surgery.  A woman who has lost a breast or part of a breast is missing a body part, and although breast reconstruction does not actually restore the missing breast, it feels more normal.  I had to wait at least three to six months following radiation to have the reconstruction. 

I decided on a type of reconstruction called a Latissimus Dorsi Flap.  A flap of skin and muscle is taken from the back and transferred to the front of the chest where it is used to cover an implant.  There is considerable scarring at the donor site on the back and the use of one latissimus dorsi muscle is lost.   It was tougher than I ever imagined and the recovery is difficult and long.  I could not use my right arm for many weeks (I am right handed and my husband even had to cut my food for me).  I had to keep my arm bent and fairly close to my body.  During the day I sat on the couch with my right arm bent and placed it on a snack tray in front of me. I was out of work for seven weeks.

I did not require formal physical therapy to regain the use of my arm after so many weeks of keeping the arm bent and in one position.  But, it was a slow process regaining full use.  I did a lot of stretching, particularly in the shower, climbing my fingers up the shower wall while the hot water ran over my muscles.  I did very gentle yoga, stretching a little more every day.  All of this was done under my doctor’s supervision.

Four months after the dorsi flap surgery I had surgery to align my left breast with the reconstructed breast in order to attain symmetry.  This was minor, done as an out-patient, and I was back to work in two weeks.

I do get muscle cramps in the reconstructed breast if I turn or twist in a certain way.  The muscle that was transferred from the back to the breast “complains” and the result is a sharp cramp that has to work itself out in about 30 seconds. Also, there are times when I feel like I am “wearing” the whole right breast from the surgery sight on my back around to the front.  I don’t know how else to describe it, but it is a little weird.  Since a muscle is now missing from my back, I don’t have the strength on the right side that I used to have.  I can do all “normal” everyday activities without difficulty, but trying to do push ups (for example) is more difficult, bowling became a problem (although if I had continued practicing, I probably could have overcome that difficulty), climbing out of a swimming pool (pulling oneself up on the ladder) is a challenge on the breast muscle.  All of these things are minor in the “big picture,” but it is good to be aware of these side effects while in the reconstruction decision making process, especially if your lifestyle is very athletic.

The Present . . . Empowerment – The Journey Continues

WOMEN-EMPOWERMENT

This year has been a bit of a psychological struggle for me and perhaps that is what prompted me to finally write this blog that I have been thinking about for  four years.  As I’ve mentioned, I was diagnosed with breast cancer at 58 years old.  What I didn’t mention was that my mother was also diagnosed with breast cancer at the age of 58.  That was in 1976 and treatments for breast cancer was in its “infancy.”  Lumpectomy was a fairly “new” option and was the course of treatment that my mother chose over a mastectomy.  Of course, as far as I know, there was no type of sentinel node biopsy and no individualized treatment for a particular type of breast cancer.  My mother had a lumpectomy and radiation that burned the skin of her breast and arm into brown parchment.  She died in 1984, eight years after her initial diagnosis.  Intellectually, I know that my surgery and treatment were totally different from my mother’s surgery and treatment, but the eight year mark is both a comfort and a trigger for difficult memories.  I’ve found that hypervigilince has returned and I’ve had to remind myself why I am experiencing some trauma symptoms that had abated.  Recognizing the trigger and the resultant psychological discomfort has helped me to reduce its impact.

The most important thing we can do for ourselves is to remain vigilant (not hypervigilant) with following up with our oncologists, mammograms, and self breast exams.  We need to be thankful for every day and enjoy to the fullest whatever we feel most passionate about in our lives.  We need to live in the moment and enjoy.  Since my diagnosis I have been blessed with three more beautiful grandchildren.  I decided I needed to prioritize my life to have more time to spend with my family.  I have retired and moved to the country.  I continue to do visualizations, gentle yoga, exercise, and schedule full body massages once a month.  I read for pleasure and for knowledge (I’m currently reading Still Here by Ram Dass).

I remember talking to one of the nurses who is a survivor and a co-worker in the hospital where I worked.  I was just finishing up with all my treatments and I asked her if she was diligent about what she eats, drinks, exercise, etc. and she just smiled and said “Karen, just do whatever makes you happy in this life.”  I thought that was good advice and, for the most part, I try to do just that.

Learning to know ourselves by recognizing normal symptoms and stages of trauma and grief, learning to reach out for a sense of community and strength, taking care of our minds to help heal our bodies by accepting holistic methods of treatments in conjunction with Western medicine.  These are all ways to become empowered during diagnosis, treatment, and while continuing on our paths.  None of us know what the next minute, day, or year will bring.  We all need to live our lives with mindfulness: living and enjoying the moment while remaining vigilant regarding our care for the future.

I hope that you’ll share with me and others what your journey has been like and what you’ve found helpful in “making your way through.”  If you are a medical or mental health professional, please feel free to share what you have found helpful in working with your patients/clients. If you are a family member, please share what has been helpful for you and/or in what ways you have helped your loved one cope with this disease.

I’m also sure that reoccurrence intensifies the trauma responses, completely changing the adjustment process.  I can only imagine that it takes tremendous strength and coping skills to deal with on-going treatment and all the accompanying fears.

Visualization & Meditation

Meditation

The visualization that I used during radiation treatments came from being a young adult during the Viet Nam war era. I had vivid pictures in my mind of the napalm bombs used in Viet Nam. The fire and destruction from these bombs always stayed with me. During the few minutes each day of radiation, I visualized the radiation destroying cancer cells in my body in the same way napalm bombs destroyed everything in their path.

To use visualization as a form of relaxation place yourself wherever you are comfortable and in whatever position you are comfortable. Sometimes following chemo the only place I was comfortable was lying down. You can meditate/visualize in any position. Visualize yourself someplace that you consider safe and peaceful, i.e. a favorite beach, meadow, mountain, stream, etc. Focus on your breathing for a few minutes, taking deep breathes and “scan” your body for tension. Start at your toes, feet, calfs, thighs, buttocks, abdomen working your way up your body and consciously with your breath (deep inhale and exhale) relax each area. You can wiggle your toes, shake out your legs, shoulders, whatever area feels tight. Pay attention to your facial muscles. Tighten your facial muscles, scrunching up your face, then release your facial muscles with an exhale of your breath. Soften your eyes and lips, make sure your tongue is not jammed up on the roof of your mouth, but gently touching the roof of your mouth behind your front teeth. Check your jaw, is it clenched. When your body is as relaxed as you can feel at the moment (this can take some practice), begin your visualization. Here is an example: See yourself walking along a warm, sunny beach at the edge of crystal-clear blue water. The waves are gently rolling in, hear the gentle sound, smell the salt air, listen to the sea birds calling to the wind, feel the warm sand under your feet. See yourself spreading a towel and sitting to absorb the sounds and smells. Feel the sunshine caressing your body and visualize the sunshine as a yellow healing light. Let this light permeate your body, starting at the top of your head and working your way down your body. Concentrate this light wherever you feel you need it the most. Then visualize yourself walking up and over the sandy dunes. Healing does not necessarily mean just physical healing. There are times that what we need most is spiritual healing, a sense of comfort and peace. If you believe in God, then picture this healing yellow light coming from Him to you. If you are not a believer, then picture the healing light coming from the universe or whatever fits your belief system. With some practice you can decrease your stress by remembering the feeling of relaxation from your visualization, taking a deep breath and as you breathe out, and seeing yourself in whatever place you find relaxing.


The visualization that I used when my white blood count plummeted was one of a factory of workers in my bone marrow. They were working overtime manufacturing new white blood cells. I just kept visualizing these tiny workers “banging out” white blood cells. My doctor was amazed at the increase in my white blood cells in a 24 hour period (of course, I had an injection of Procrit also, but my doctor still thought my increase of white blood cells was beyond the expected). I always use what some call alternative or holistic healing methods in conjunction with Western medicine.

A favorite meditation of mine is a Metta meditation. Metta is translated in English as “loving kindness.” A Metta meditation offers yourself “loving kindness” and then you can offer it out to others. To begin, take a few moments to get comfortable and quiet your mind. Focus your attention on the experience of loving kindness. Close your eyes, deepen your breath and release any thoughts from your mind. Begin by reciting the following phrases to yourself at a pace that keeps you comfortable and alert.
1) May I be safe from inner and outer harm
2) May I be happy and peaceful of heart
3) May my body be healthy and strong
4) May I be filled with ease
Then you may replace the “I” with someone who supports you. Picturing this person in your mind while reciting the phrases can be helpful.

You can “offer” Metta to yourself and others for just 10-15 minutes per day, or for any amount of time that feels comfortable for you. Finish with a few slow, deep breaths, feeling compassion, love and kindness flowing through your body. Take a few moments before going on with your day.

Our bodies and our minds are under an assault from the disease, the diagnosis, through treatment. Having loving compassion for our bodies and our minds in an “in the moment” purposeful way allows us to positively affirm a warm hearted feeling towards ourselves and others.