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.