I just finished a novel by Karen White called The Time Between.It is a novel about love and loss, regrets and guilt over choices made, and relationships. When I finished this novel I started thinking about “the time between.” When we are diagnosed with cancer everything in our lives seem to fall into before we had cancer and after our surgery/surgeries, and all treatments are finished. The “time between” is technically when we are undergoing diagnosis decisions and whatever intervention is necessary to hopefully save our lives. But, then I came to learn over the years and by listening to other survivors that the “time between” can go on emotionally for a very long time. Although this novel is not specifically about cancer, it is about devastating life changes and struggle. It “spoke” to me and helped me to realize that it was definitely time to be beyond the “time between.” There is a quote in the book: “There is how we were before, and how we are now, and the time between is spent choosing which doors to open, and which to close.” So I found myself visualizing two doors. One had Fear written on it and the other had The Rest of Your Life written on it. So often in the past I seemed to walk through that Fear door and ruminate over what might be. But, when we do that, we rob ourselves of the here and now. I don’t want to walk through that Fear door unless or until I actually have to face a recurrence or any one of life’s possible tragedies. I want to throw open the The Rest of Your Life door walk through, lock it behind me and live in the moment. If I feel myself slipping toward that other door, I’m going to shake my head no and not allow myself to turn that doorknob. I’m going to paraphrase another quote in the book: ” We live, we love. These are the choices we are given, to open doors or to close them. It is all we have, and if we do it right, it is enough.” Blessings
I was thinking again about the woman I mentioned in my previous post who “journaled” every day on Facebook as her coping mechanism and support system. In one of her posts, she mentioned that her white blood count was low and she was feeling very weak from recently receiving her chemo. However, she wanted to attend a social event that evening which was very important to her primarily because she said she “just wanted to feel normal” for a short while. I think that we have all been in that situation during our cancer experience, “just wanting to feel normal” for a while. The response on Facebook from her family and friends was overwhelmingly negative regarding attending this event. Most of her friends and relatives were worried that she would contract something secondary to her impaired immune system and they were afraid that her attendance could be quite dangerous for her. One person even wrote that her sister had had a low white blood count from chemotherapy, went out socially and came down with an illness and died within hours. This person begged for the above mentioned not to go to her event. I joined in the “conversation” posting that no one but “K” could make the decision, but that if she decided to go she could compromise by taking precautions. No kissing or hugging and particularly no handshakes or hand holding. Most of the people at the event would be aware of her situation and the people who are not aware did not require close contact. I also suggested that she take into consideration that if she contracted something it could delay her last two chemo treatments, but only she could weigh the risks involved. She tried to respond to everyone and agreed to make some compromises: she would not make close contact with people and she would not stay out late, but she was going.
Sometimes, we have to assert ourselves with well-meaning (and sometime correct) friends and relatives who are emotionally invested in our recovery and well-being. In this case, “K” was not critically neutropenic or she would have been instructed by her doctor to seclude herself in her home or placed in isolation in the hospital to protect her. Nuetropenia is a result of strong chemo drugs which can lower the number of white blood cells (and other blood cells) in your body and can put cancer patients at risk for infection from bacteria or viruses. She probably would have been better off physically if she had stayed home and rested, but what she needed was emotional. She was taking care of her mind and her spirit by “feeling normal” for just a while. I am not advocating ignoring doctor’s orders if your WBC is critically low. But, if well-meaning family and friends are overprotective, it is important to use your judgment and be assertive regarding fulfilling both your emotional and physical needs.
Assertiveness can be defined as expressing oneself, satisfying one’s personal needs, feeling good about this, and not hurting others in the process(Greenberg; Comprehensive Stress Management, 1993). It is not always easy to be assertive towards those we care about deeply (or anyone else for that matter). In When I say no, I feel guilty by Manuel J. Smith has provided us with a Bill of Assertive Rights.
1. You have the right to judge your own behavior, thoughts, and emotions, and to take responsibility for their initiation and consequences upon yourself.
2. You have the right to offer no reasons or excuses for justifying your behavior.
3. You have the right to judge if you are responsible for finding solutions to other people’s problems.
4. You have the right to change your mind.
5. You have the right to make mistakes…and be responsible for them.
6. You have the right to say, “I don’t know.”
7. You have the right to be independent of the goodwill of others before coping with them.
8. You have the right to be illogical in making decisions.
9. You have the right to say, “I don’t understand.”
10. You have the right to say, “I don’t care.”
I think that the important issue to remember with this list is that you have to take responsibility for your actions. In the case of going out into a crowd when your immune system is compromised can be dangerous. At the very least, precautions need to be taken. I worked in a hospital all through my chemotherapy treatments. There is no place more germ filled than a hospital, but my doctor carefully monitored by WBC and the one time it was dangerously low, I was instructed to stay home until it came back up to a safe level from a Neulasta injection. I stayed home and rested and visualized a white blood cell factory inside me just pounding out white blood cells, and the next day my count was within a normal range. I followed all normal precautions in the hospital washing hands often, using Purell, and wearing a mask and/or gloves when the situation called for it. I also flew to visit my son and family in another state between chemo treatments with the permission of my doctor. I was instructed to take a mask with me and to wear it if anyone around me on the plane was coughing, sneezing, etc. Another time my family had a large fund raising event at a local country club. I made a short appearance and was careful to avoid hand contact, hugging and kissing. Everyone of any emotional importance to me knew my situation. The point I want to make is that one has to listen to their doctor, use common sense, and take care of their body, mind, and their spirit. <
An assertive person also pauses to obtain feedback from others which is vital for effective communication. Obviously, a caregiver/loved one who is heavily invested in your health may just be assertive enough themselves to help present a workable compromise to a situation. This compromise will enable both you and your loved one to keep emotional needs intact.
Tuesday, February 4th is World Cancer Day. This day is a global observance that helps raise people’s awareness of cancer and how to prevent, detect or treat it. This year’s theme is “Together it is possible.” It is a tribute in recognizing the resilience and hope in the minds of all cancer survivors who have faced enormous trauma and mental conflict in their war against the question of life and death. The theme, “together it is possible” has a literal meaning with the hope of the entire world joining forces to fight cancer. This is a dream and a hope that we all share. But, I also think of the theme as survivors joining forces to get each other through the trauma and mental conflict. I have always been amazed by the resilience and ingenuity that cancer survivors invoke in order to cope with their illness. We do it through formal support groups, blogging, sharing resources, supportive and informative web sites. And, as it is World Cancer Day tomorrow, the empowering story I want to share with you is not about a woman with breast cancer. This woman’s coping mechanism throughout her diagnosis of colon cancer and on-going treatment has been inspiring. Her faith and spirit are strong, although her body is very weak at the moment from having gone through eight of her ten chemo treatments following surgery to remove her tumor.
She is my daughter-in-law’s cousin and she moved across the country with her husband to start a new life in a new state, leaving behind all her family and old childhood friends. When she learned that she might have cancer, she began posting on Facebook expressing her fears and concerns. Throughout her diagnosis, surgery, and treatment so far, she has chronicled her journey on Facebook as one would keep a daily journal. Through Facebook, her family and friends have been with her every step of the way every day offering her support, empathy, advice, and most importantly love. Where there is a will, there is a way. She has taken pictures of her port (which she named Portia) and her pump and fanny pack that delivers her chemo (which she has named Pumpetta) and has posted them on Facebook. You can tell from the naming of her port and infusion method what a great sense of humor she has and how she has used that humor to help her cope.
She has taken advantage of modern technology chronicling her journey. It takes great courage to reach out and share one’s hopes and fears on a social networking site. She still has a journey ahead of her, but I know that through the support of her husband and on-line “journaling,” she will persevere.
On this World Cancer Day I want to honor my mother and all the women (and men) who went before us fighting this disease, paving the way with evolving treatments. February 4th is a time when organizations and individuals around the world send a message. Ending cancer should be a global health priority. Around the world, communities will hold festivals, walks, seminars, public information campaigns and other events to raise awareness and educate people on how to fight cancer through screening and early detection, through healthy eating and physical activity, by quitting smoking and by urging public officials to make cancer issues a priority. Blessings to all and Amen.