Since I last wrote you several weeks ago, new family and friends have joined us here. Today’s post is much longer due to the need to answer your many wonderful questions over the last month. Your questions and my challenges seem to line up side by side as we travel this most curious journey of healing and reflection.
I had chemo yesterday and I hope to finish Part 2 very soon unless sleepyhead issues overtake me.
We loved your calls and winter holiday greetings! Thank you very much.
1. The ‘C’ word that frightens us and the ‘C’ word that is banned
Cancer is different than any other diagnosis because of its deeply life changing qualities at every level. The treatment can be fatal. The treatment can be disfiguring. The diagnosis has connotations of fatality and hopelessness. It has a long history of fear and despair being associated with it.
Many people feel they have absolutely no training and no coping skills for how to respond to a cancer diagnosis for their loved ones or themselves.
This level of ignorance is not the cruel meaning of ignorance that can imply stupidity, but rather it refers to the root word ‘ignored’ – meaning no one talks about until it knocks down your door and rips your life apart. I hope this essay will start to diminish a lot of that ignorance – that lack of knowledge about the cancer experience that causes so much confusion and heartbreak. This also coincides with the complete lack of knowledge about death and dying – a concept that springs forth the moment the word ‘cancer’ is uttered.
People don’t know how to be with those who have cancer. They don’t know how to dance around them and all the issues that arise with cancer. They don’t know how to respond, to support, to be present with them.
In comparison to other potentially fatal illnesses, it is sad when they find out they have a friend who has heart disease. But death is not the prominent instant reaction. Rather it is whether their friend will need bypass surgery, medications, stress tests, exercise, and diet changes. This is a huge difference from their reaction to cancer.
Diabetes brings a similar reaction to the ‘heart disease’ pronouncement. It has connotations of insulin injections, medications, diet changes, vision challenges, circulation issues, and at the very worst, amputations. None of which are as overwhelming as cancer. They can be potentially terrible, fatal, and devastating, but not instantly as scary and not as hopeless.
I think cancer just produces fear and kind of shuts people down because they don’t know how to respond. Cancer is the big ‘C’ word that’s big (huge), mysterious, and scary. There’s this heaviness, this big black cloud, this big scary movie that the mind immediately projects onto the world in every direction. We all know that heart disease doesn’t do that, and diabetes doesn’t either.
With diabetes I know to stop offering you sugary treats. With heart disease I know to stop offering you foods high in cholesterol and fat. What is the first diet change that I should offer a cancer patient? We don’t know.
While the medical team has some training and experience, they too don’t know how to be with a cancer patient. They’re very sweet and kind, they’re not scared, but death is the outcome they ultimately expect, no matter what treatment they offer you. They are not allowed to use the word ‘cure.’ The banishment of the word ‘cure’ is not found in any other medical treatment training. Heart disease may be cured. Some forms of diabetes may be cured. Not cancer. That’s not what they’re there to do with you. They’re there to deal with you nicely and appropriately and sweetly but not to cure you. This realization I found devastating to my hopefulness and inspirations to get well. These two motivators are never going to come from my allopathic medical team. That was a huge and difficult fact for me to accept.
The doctors don’t tell you what you might feel emotionally with cancer. They may be able to tell you what you will physically experience from the cancer or the treatment of cancer. But this is not the same thing as preparing you for the emotional roller coaster.
2. My Ears Cannot Refuse to Hear
I do not let anyone or any media source fill my head with negative outcomes. I preempt folks in conversations from the outset saying that I will cut them off or walk away if they try to fill my head with anything that ‘I’ consider to be negative. Cancer deaths in books, movies, and even in real life, I edit them before I hear too much, learn too much, etc.
Since even my oncologist cannot say the word ‘cure’ – I know what I am up against. I am so grateful that my family supports me in being super protective about all sensory input.
My oncologist is required to give me a one-to-four page print out on the side effects of my chemotherapy. I have no doubt that I am susceptible to those opinions, comments and possibilities. Having read the story of Mr. Wright*** years ago, I don’t read those print outs. Terri has been a staunch guardian of such medical paperwork. She has read them for me and only tells me what I really need to know.
The medical people are not scared off by these documents. They are fact givers, not your best friend. They personally have no idea what it is like being all drugged up…to lose function of your once so reliable body (body parts – walking, bowels, cognition, hair, nervous system, etc.).
My mental and emotional changes brought about by chemotherapy and the metabolic changes from cancer itself were the most surprising and challenging. My mindset or outlook on the world, my family, and my longevity has been life changing.
When the nurse said to me, “well you know I’ve never had cancer so I don’t know what to say.” Her honesty was stunningly surprising to me in my fog — oh that’s right you don’t know but you do a really good job seeming like you know I thought.
3. The New Knee-Jerk Reactions
Here is an example of unforeseen changes in everyday activities that surprised and confused both Terri and I.
One of my journal readers appreciated my story about how gently and sweetly my wife responded to my harsh rejection of a favorite meal she had cooked for me. “Oh my God, I loved it so much when you wrote about Terri’s throwing your favorite breakfast in the garbage and immediately offering you other options (it seemed without batting an eye). Such acceptance of the craziness of how the chemo destroys your food impulses. It reminded me of my food cravings when I was pregnant with my son. Yeah Terri!”
She went on to explain a little more… “I’m like yeah I know that feeling of get that food out of my sight! Get it out of my sight this minute! I’m gonna throw up just thinking about it,” she told her husband. “The moment it’s in the garbage it felt great!”
How do you explain that to somebody in advance – be they patient, family, or caregiver?
So many issues that most cancer families are not prepared for.
The mood swings. The sleepless nights. The unpredictable reactions to chemo. Every week each IV infusion produces a whole new person. My wife never knows who she is bringing home from the hospital. Certainly, on the ride home, I am still me…but…3 hours or 3 days later I am definitely somebody else. The options are huge and none of them are pleasant, nor trustworthy…until the 5th or 6th day when I start to return to earth and home. Since I get chemo every 7 days, my earthly visit is very short-lived.
Another reader recently reminded me of the dammit dolls that I lectured about years ago. Sold on Amazon, they are soft dolls made for you to beat against your desk at work or at the dinning table to vent your frustrations. I was asked if I had used them since I am with cancer now. I have not. To smash them and express all one’s fears and frustrations about cancer seems like a great idea.
4. Chemo is going to take a while
The doctor said, Chemo is going to take a while… and it is also going to make you feel sick
Being told that chemo is going to take a while to treat my cancer was the understatement of the year. I was never told how long the treatment would last. Is this my new life for 8 weeks? 18 weeks?
For me, I am just passing my 2-year mark of regular cancer treatments. Right now it is two weeks on, one week off. Well…
Its been a while!
5. Coming Attractions!
Get ready for The Mindset of Cancer — Part 2 where we explore how “to be with cancer” and how to be with those who have cancer. This next section is a work in progress for all of us.
If you wish to get some clear direction immediately, one of my main sources is the book:
The New Cancer Paradigm: Mobilizing the Mind to Heal the Body by Avinoam Lerner. CreateSpace Independent Publishing Platform. You can instantly purchase and download it from Kindle or from Mr. Lerner’s site.
6. Mr. Wright*** – The Story of Mr. Wright healing cancer with his mind.
During my early years of studying holistic medicine, among many these books caught my attention on the topic of how the mind influences healing:
• Dr. Bernie Siegel’s book Love, Medicine & Miracles (1986)
• Why Me?: Harnessing the Healing Power of the Human Spirit Paperback – Garrett Porter, Patricia Norris Ph.D., Gerald G. Jampolsky, MD, June 1, 1985.
• This resurfaced two years ago when I met Avinoam Lerner and read his book, The New Cancer Paradigm: Mobilizing the Mind to Heal the Body.
Mr. Lerner and Dr. Siegel both reference Dr. Bruno Klopfer, the psychologist who studied and reported on Mr. Wright’s remarkable patient experience of 1957. Mr. Wright’s recovery from his cancer was totally dependent on his perception and belief about Krebiozen, a chemotherapy agent.
With the authors permission, the following has been excerpted from The New Cancer Paradigm: Mobilizing the Mind to Heal the Body, by Avinoam Lerner, (p. 27 – 38), 2012.
Dr. Philip West held the opinion that Krebiozen would not work for Mr. Wright. Furthermore, he did not want to include a patient in the trial who was destined not to survive and thus skew the statistical results of the clinical study. However, after much convincing from Mr. Wright, Dr. West yielded to his persuasive appeal.
The following Monday the doctor found his previously bedridden patient fully alert, alive and enthusiastic. Two months later when Mr. Wright read the reports of his medicine being a total failure in treating cancer, he re-lapsed.
Thinking the circumstance extreme enough to justify extraordinary measures, Dr. West told his patient that he was giving him a new, refined, double-strength dose of Krebiozen. Instead, West injected him with sterile water. This time Wright’s results were even more remarkable than after the first dose.
Once again, the tumor masses melted, chest fluid vanished, and he became fully mobile and returned home, remaining symptom-free for more than two months. It became clear that the patient’s belief alone had produced his recovery. With the size of the tumors reduced and his strength restored, Mr. Wright was discharged and sent home as “the picture of health.”
Not long after, the final announcements from the American Medical Association (AMA) and from the US Food and Drug Administration (FDA) appeared in the news: “Nationwide Clinical Test Trial Results Prove Krebiozen to be Powerless in the Treatment of Cancer.” Upon learning of the news, Mr. Wright’s faith sadly disappeared. After the first two months of astonishingly perfect health, he returned to his original state. His belief was now gone, and his last hope for survival had vanished. He relapsed to his original terminal condition, and this time he did not survive the weekend. Mr. Wright died within a few days.
[Klopfer, Bruno, PhD, Psychologist, “Psychological Variables in Human Cancer,” Journal of Projective Techniques, vol. 21 no. 4, 1957, pp. 331–340.]
With Love and Gratitude,
Terri and Blair
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