Dare to Believe

Ultimately, our power to really live this life we are given and to rebirth ourselves after long illness depends on who we are willing to accept as our authority. Illness can be transformational, a vehicle to a more vibrant and meaningful state of existence, but we must learn to drive that vehicle. And then, when we are healthy again, we must get out of the vehicle and live in the new world in which we find ourselves—live in it fully, releasing fear and declaring who we are. However, that task is not without its challenges.

Should Healthy People Be Treated Like Sick People?

The great irony about beating cancer and having a body that is absolutely cancer free is that your doctor continues to treat you as if you are a sick person. I have been cancer free since April 20, 2010. That’s over 14 months as of today. Very recently I had a PET/CT scan and a brain MRI and—yup—no cancer anywhere. Yet I am labeled by my care providers not as “cured,” but as someone who is “in remission,” as if they are just waiting for the other shoe to drop.

I feel really good. In fact, I have more energy than I’ve had in a long, long time. When my friends see me, they tell me, quite sincerely, “You look great, really vibrant!” In fact, one dear friend told me recently, “You look healthier than I’ve ever seen you.”

However, lately I’ve been feeling as if I’m stuck on the “remission reservation,” not permitted to leave, not given the “all-clear” signal, watched over by my doctors with hope, support, and congratulations, certainly. But I know they also have one eye trained on how long my wonderful health can actually last. This feels very wrong to me. And this is not the
space where I want to be. Yet I know it is a universal experience, shared by everyone who has had cancer or an auto-immune disorder.

Life on the Rez

When I was diagnosed with stage 4 metastasized breast cancer back in January of 2010, I needed the best medical care that could be found—and I got it from a very gifted oncologist, Dr. John Link. I needed the chemo and the other drugs—the state-of-the-art treatments he offered me. I also received prayers from thousands of people and the best that alternative medicine and visualization could offer. I was very, very sick, but I was also very, very mindful and proactive. I “did” these treatments very consciously, asking myself
what this illness “meant” in terms of my life purpose. The wonder and miracle of it all is that I was 100% cancer free 3 ½ months into my treatments. To me, that is a momentous accomplishment, a miracle for which I thank God, my family, my friends, my doctors, and my own great love of life. I know that I have much yet to accomplish, so I plan to stay and truly live in this glorious world.

However, even though the chemotherapy treatments were stopped at the end of July of 2010, my doctor still gives me an infusion of Herceptin, a genetically-engineered drug designed to specifically target Her2 Neu-positive cancers. According to the latest research, getting Herceptin every three weeks has been “clinically shown” to help shield the body from cancer recurrence. It has 1/20 the side effects of chemo, but my feet get numb, my nails are brittle, I sometimes get rashes on my ankles, and my nose has been running for a year and a half.

I’ve been pretty much okay with all this. But something shifted for me a few weeks ago. I was sitting in the infusion room, getting my usual dose of Herceptin. The two women across from me, who were obviously hooked up to “chemo” bags, were having a quiet conversation. One was talking about how many times she’d come out of remission, gotten sick again, and lost her hair. The other was talking about how she’d been on chemo for 11 years, but was getting to the point where her body couldn’t tolerate it any longer. They both looked dry, brittle, washed out, discouraged, and depressed. And I suspect they
both believed they were dying.

I was suddenly hit with the revelation that I no longer belonged there, in that room, with those sick women—that it could not possibly be good for me psychologically to have to come here every three weeks, in a healthy body that had more energy than I’d felt in years, and listen to these conversations from women who were courageously fighting the good fight with grace and strength, but who so often looked so seriously frightened, tired, and

The question that I found myself asking was: When are they going to let me off the remission reservation?

And Then I Almost Made It!

Friday, June 24, I had a routine checkup with my oncologist. I was literally praying that he would be positive, and I got my wish when he came into the room beaming at me and said, “What are we going to do with you? You’re our miracle!” He told me he was going to take me off my daily dose of Tykerb (an oral genetically engineered drug). This made me ecstatic, not only because he was sending me a clear message about his evaluation of my health, but also because I know there’s gotta be some price to be paid for putting a drug
in your body daily. He also told me I was doing so well that he was going to take me off the Herceptin at the end of the summer. I felt pure joy that my doctor believed that much in my heath. He had nothing but positive, encouraging things to say and it was the best thing he ever could have done for me.

Yes, I was a little bit scared when I got home and the news really sunk in, but I also felt like my own immune system was strong enough to take it from here. I was willing, and I was looking forward to a life without strong drugs and their side effects.

Five Days Later…

My escape from the rez lasted for five days. I came home last Tuesday to find a message on my answering machine from my dear friend and supporter, Donna Valentine, the physician’s assistant. Well, I panicked. “Shit!” I thought, “They’ve scanned every friggin’ part of me they could—what else could they have possibly found?  Did Friday’s blood work show something bad, like elevated tumor markers or liver enzymes?”

When I called Donna back, she told me that all my tests were fine, but that Dr. Link had conferred with her and some of his colleagues about my case and decided to put me back on the Tykerb “for awhile.” When I asked if I’d still be taken off the Herceptin at the end of the summer, she said, “Well, you’ll probably be on it a bit longer. You’re our miracle. You were really sick, and you are completely cancer free now. But we want to keep you that way for as long as possible” (which, in my book is until I reach a ripe old age–I’m not letting go of that idea). She went on to say, “The question in oncology is: when do you take people off the drugs when they no longer have cancer.”

I know they are just doing their job, because they want the best for me. But me and my unconscious mind have an ongoing balancing act going on between fear and fearlessness. I am getting better and better at the daily practice of truly living in faith and strength. But at that moment, I was so angry and frustrated—because I want to move on. I know it seems like a small thing, being put back on the drugs, but it had a psychological impact on me because it reminded me that in the eyes of the medical profession, we are sick until proven cured (in five to ten years).

For a long time, I’ve been asking myself the question, “Why do people get cancer again?” because I know so many people who have. And I honestly think that an important part of the answer lies not in “microscopic cancer cells” lurking about in the body just waiting to start growing out of control again, but in the fact that doctors—even the best of them—do not treat us as if we are truly well. The reason for this is part “science,” part treatment protocol (“If it comes back, we’re going to catch it early”), part malpractice fears, part our current medical paradigm. But how do we, considering all the complexities and possibilities of being a human being and a spiritual being, fit into this equation? What are our responsibilities when it comes to our health? How do we reconnect with our inner strength, regain our personal power in the aftermath of a disease that made us feel so very powerless?

Belief Can Often Make Us Or Break Us

What power the words of authority figures have over us! Everyone knows that if you say to a child, “You are going to grow up to be just like your father. He’s a stupid no-good, worthless drunk and you will never be any good either,” 90 percent of the time a child will grow up to be just like that. He or she will figure that they are doomed, that they won’t be able to escape the inevitable. Subliminal messages and attitudes are just as powerful as the words. Our unconscious minds hear them, loud and clear.

What scientists call our HPA axis—the physiological responses that become activated when we are presented with a threat, either real or imagined—is not designed to endure ongoing stress, for example, constantly having to respond to fear, even when that fear is a belief that others are projecting onto us. Fear, stress, and belief that the worst might happen can literally kill us because—simply put—when our adrenal glands and our innate “fight or flight” system are always on alert, this robs our immune system of the energy it
needs to protect us.

In his book The Biology of Belief, Bruce Lipton tells the story of a Dr. Cliffton Meador, a Nashville physician who, back in 1974, treated a patient, Sam Londe, for esophageal cancer. At the time this condition was “considered 100 percent fatal. Londe was treated for that cancer, but everyone in the medical community ‘knew’ that his esophageal cancer would recur.” And, indeed, a few weeks after his diagnosis, Londe died.

However, when the autopsy was performed, they found a spot on his lung and a couple in his liver, but none whatsoever in his esophagus. The question that has been haunting Dr. Meador for over thirty years is: what did Londe die of? The answer is fear. “I thought he had cancer. He thought he had cancer. Everybody around him thought he had cancer…did I remove hope in some way?”

The Man Whose Hip Grew Back

At the opposite end of the spectrum, Michael Talbot tells a remarkable story in his book The Holographic Universe about a man named Vittorio Michelli who was admitted to the hospital in Verona, Italy in 1962. He had such a huge tumor on his hip that treatment was out of the question, and he was sent home to die. Finally, after ten months, his condition had deteriorated to such a degree that his hip bone had dissolved and the top of his leg bone was simply floating in a mass of soft tissue.

Michelli was a man of faith. As a last resort, he went to Lourdes and bathed in the miraculous waters. (His hip was in a cast at the time.) He described experiencing a sensation of heat throughout his body when he was first immersed. He bathed several more times over the next few days.

Upon returning home, his appetite began to improve and his energy levels to rise. When he asked his doctors to X-ray him once more, they discovered that the tumor had shrunk considerably. The doctor and his colleagues became so interested in this case, that they began to document Michelli’s experience. Within two months, the hip bone had begun to
regenerate and Michelli was walking again. Over the next few years his hip bone and leg socket completely restructured themselves. His progress was documented in X-rays taken in 1964, 1965, 1968, and 1969. (Talbot includes actual pictures in the chapter.) The doctors’ conclusion? Either this was a genuine miracle or “Michelli’s healing may simply be due to natural processes we do not understand.”

Who Defines You?

Lisa, a remarkable friend of mine, recently wrote a blog in which she described her visit to a new specialist who put her through a series of diagnostic tests. She’s been struggling with auto-immune diseases for several years now, but has done a magnificent job of defying all
the odds and rebuilding her body and her life, step by step. She is the bravest woman I know.

However, the new doctor took one look at her test results and told her that they were horrible, that she was the sickest person he’d ever seen, and that she shouldn’t even be functioning. In fact, he wanted to admit her to the hospital immediately, take her off all her medications, and start over again from scratch. And he never once looked her in the eyes when he said all of this.

At first, Lisa thought he was kidding. She was feeling pretty good that day and had actually been a bit late to the appointment because she had wanted to take her yoga class.

But she began to fall under the spell of this doomsayer: “For a minute, I could feel my body conforming to this man’s idea of my state of health. I started to feel as weak as he seemed to think I was and my breathing was restricting. I could feel myself slumping over in my
chair. In just an instant, I became the test results on that paper.

“Then I remembered who I was.

“We are so much more than what we are on paper because linear tests can only quantify facts. Although there is a place for these tests, they are only a small piece of the puzzle. What Western medicine forgets to take into account is the human spirit because it is a far
greater sum of the whole. If you doubt that just look at those who have come out of comas for no reason, walked when the X-rays said it was impossible, or smiled in the face of chronic pain. We bounce back, we rise up, and we stand strong, even when ‘on paper’ it looks like we should fall apart or just give up.

“If you look at us as a species, we probably should have never made it out of the ice age, but our spirit is far stronger than our intellect, even stronger than our bodies, if we allow it to shine through.

“Never let anyone else define who you are or what you are capable of. Let your spirit guide the way to your own wisdom and inner strength. That is what truly defines us.

“Those of us with health issues need the doctors of the world to partner with us in our healing, but we must become equally responsible in the process. We must never forget that we are in charge of defining ourselves; we are in charge of how we are in the world, no matter what authority tries to tell us otherwise.”**

Who Has the Last Word?

Ultimately, we cannot allow others to define who we are and what our body is capable of healing. To one degree or another, modern medicine is always going to try and confine us to the “rez.” Some doctors, like Lisa’s, steal your hope while avoiding eye contact. Others, like mine, try to give you all the hope they can. But our modern medical system is still trapped in its own paradigm.

That being the case, it’s up to us to decide that we are more than residents on the remission reservation. Our minds are free and our bodies have powers to heal that we haven’t even begun to imagine. As my friend Nikki has said to me many times, “You are surrounded by light and you have invisible armies fighting on your side.”

There is always hope for each of us. We must learn to believe in that hope, to live in that hope, and finally, to dance in that hope.

Remember who you are. As Lisa says, “Freedom, I believe, is a state of mind where our potential is endless and our souls can fly above our situations….all we have to do is choose it.”

I’ve been watching the camera trained on an eagle’s nest on Catalina Island for the last three months, following the growth of the eaglet, Solitaire, from a tiny baby with little featherless chicken wings to a wild and beautiful creature with a six-foot wingspan. Solitaire practiced and practiced for weeks, then one day she simply spread her wings and glided out over the canyon, landing on the hillside opposite.

May we all fly like eagles.

**These magnificent words are quoted with permission from the blog “From Weakness to Wisdom: Thrive Not Just Survive Cancer and Autoimmune Disorders.” If you would like to read more of this amazing and courageous blog, here is the link: http://fromweaknesstowisdom.com/2011/05/31/who-defines-you.aspx

About Joy Parker

As a three-time cancer survivor and storyteller, I felt compelled to create this blog because I felt the need to connect with an audience and immediately share what I am learning as I am learning it. The material in this blog is serving as the basis for two books that I am writing. The first book talks about how illness is a vehicle that takes us into the unknown land, teaches us things we couldn’t otherwise learn, and then gives us the opportunity to bring them back to our community. It offers a compass and creates a map of the unknown land so that others might find their path more easily. Most important, it shares what I have learned about waking up and being truly alive in this magnificent world. That might sound simple enough, but the actual experience is devastatingly beautiful and powerful. The second project is a book with medicine cards discussing many of the lessons I’ve learned from my experiences with healing and as a healer, the indigenous world, and walking a spiritual path. Most important, it is the story of the development of my own personal mythology. People tend to think of myths as massive stories and beliefs that develop in a culture over hundreds or thousands of years. We now live in a time of crisis and we don’t have a hundred years. The time for healing and transformation is now, and we are the ones we have been waiting for.
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