Even the hairdresser announced I really needed a haircut. Sitting in the salon chair, I watched my stylist strategize how to clean up the chaotic mop on my head that had been without a cut in four months. “I don’t want too much length taken off, but maybe do some layers,” I said showing him a photo in Cosmopolitan magazine.

Shaking his head frantically, my stylist Günter jabbered away in German to his colleague who was translating for us. “He said he cannot give you the haircut in the photo. Your hair is too short,” she explained.

“No, I don’t want the entire cut, but just the front part,” I replied. The dialogue continued without progress. Out of all the salons I could have chosen, I found the most opinionated hairdresser in Cologne. Well, they usually are.

“Ask him what he recommends for my hair,” I said grinning. He stated his recommendations. They were translated. And I deferred. I felt anything would be an improvement over the current state of affairs with my frizzed out, slicked over, and pushed behind my ears do. What I really needed was a pick me up, a new look, a new life.

After performing major alchemy, Günter proudly declared my hair looked “much different.” Thanking him and rushing out of the salon, I was obsessing about how much I hated my haircut. “It’s too short,” I remunerated. Even though I deferred to his recommendations, I thought he agreed to leave the length. I considered it the most disastrous miscommunication in the three months since my arrival in Germany.

Well, I’m exaggerating. While I didn’t like my new do at first, and I was frustrated by Günter’s excessive enthusiasm with his scissors, after a day, I liked the cut. The experience also made me ponder if what I sometimes ask for doesn’t reflect what I actually need. Although self-identification of the perfect haircut is a tall order for most women, I might be onto something. Yes, another new discovery about my utterly intricate psyche. My complexity is marvelous, my therapist assures me.

Shifting the weight of my legs planted into the elliptical trainer at the gym last Wednesday felt like freedom. During my first workout in over four weeks, I was invigorated moving my body and experiencing my stamina once again. And yet, sometimes just when I’m upright and with a steady balance, I feel knocked down.

Last Thursday, I received my third dendritic cell vaccine. This time, six million dendritic cells were injected into my arms. (The number of dendritic cells cultured in the laboratory over seven days varies according to the number of isolated monocytes from each monthly blood draw.) Immediately feeling the dendritic cells bouncing off the walls of my body, they quickly shifted below my conscious level of sensation.

Peering out my apartment’s fifth floor windows the other night onto Friesenstrasse, a well-known street in Cologne lined with dozens of bars and restaurants, I watched a group of teenage boys each wearing blue jeans, black jackets, and sporting gelled hair joking with one another, couples strolling arm in arm or hand in hand, and a family of three meandering on an early evening promenade. And then the following question entered my mind. How do I fit into this world? I stood in silence. I was surprised by the words. They felt uncomfortable, and yet, wonderfully honest. My words captured my truth, and one that I have struggled to concisely define for many years. I simply don’t know, as a thirty-two year old woman, and as a person dealing with a brain tumor recurrence, how to fit into the world.

There have been many times during my odyssey over the last eight and a half years where I’ve felt both deeply connected to other human beings and integrated into the larger whole. On many occasions, I’ve sensed my connectedness to something larger than myself. Both my intellect and intuition know this connectedness is a potent ingredient in the universal formula for healing. Healing requires embracing the unity and interconnectedness of all beings. Healing requires connecting to the whole.

Despite my best efforts, a perceived separateness trumps me in moments. I’ve pondered the ways in which this disconnect might be tied to my disease. If so, disconnect and disease are tied from more than one direction. I know with certainty that my mindset of separateness predates the diagnosis, and perhaps onset, of my disease. Research studies into the psychology of cancer patients indicate I’m not the only one. In fact, I’m with a lot of company. And for some, if not many, the disease experience forges a further split between the ill person and the outside world. My construct of not fitting into the world, as I recognized looking out my window the other night, is in significant part associated with the rugged and painful isolation that comes with the experience of being ill.

To find relief, or clarity, or both, I can only sit with my question. How do I fit into this world? I don’t yet have a clear answer, but just in framing the question, I feel like I’m onto something. To be continued.

Varied levels of discomfort characterize my experience of the last few weeks. I had daily injections from July 31 to August 13 of the Newcastle disease virus. And I will now receive the virus weekly for the next month. This virus comes from birds, and when administered in the human body, is supposed to attack tumor cells.

In pondering my fatigue, I wondered if the Epstein Barr virus had flared up once again within my system. My blood pressure has been lower than usual, my arms are soar from all of the needles, and I’ve had what appears to be some type of allergic reaction to one of my treatments. The allergy manifested in a rash as well as very intense itching all over my body. Both have been bothering me on and off for the last three weeks.

A few weeks ago, I also began taking medicine for candida in my gut. I had a stool test last month that revealed a high level of candida, for which Dr. Gorter prescribed the medication. I don’t know that I’m experiencing side effects from the candida medication, and yet I’m not sure how much energy my body has to fight off every unwelcome visitor.

Along with the stool test, I had blood work performed in July evaluating my liver functions. Both tests were done at my request. I wanted the liver test done since my liver functioning has consistently required extra support for many years. Dr. Gorter didn’t see anything abnormal with my liver test results, but he noted concern for my low red blood cell counts and iron. We are evaluating the best strategy to build my blood.

Sometimes I feel like my health is so complicated. Sometimes I feel like there are so many levels of imbalance. In moments, I can feel a degree of hopelessness and helplessness about actually arriving at the destination of being disease free and without significant physical imbalances. I don’t like to admit it, and yet I struggle to maintain the constant vision of being tumor free someday.

And then, sometimes I feel like there is nothing to figure out. Sometimes I truly believe I am already completely healthy. I see myself in the future as completely healthy. I tap into my original blueprint of optimal health.

Mom returned to New Jersey, I’m back in treatment mode this week, and I feel stressed. I received my first large batch of bills from the clinic, and the money is going faster than anticipated. The financial commitment is significant, especially when the return is unknown. Money should not be an issue when an individual is trying to save his or her life.

I’m also stressed about whether or not the treatments are working. I spoke with Dr. Gorter about my anxiety, and he explained it is simply too soon to tell. Once again, part of my work is to let go and trust. I have been striving to meditate more often as a means of accessing my inner peace and calm.

In Cancer As a Turning Point, Lawrence LeShan, PhD, wrote, “They (doctors) define a good patient as one who accepts their statements and their actions uncritically and unquestioningly. A bad patient is one who asks questions to which they do not have answers, raise problems with which they are uncomfortable, and does not accept hospital procedures as necessarily wise, useful, or intelligent.” There are doctors and other health care professionals who defy these generalizations, as Dr. LeShan emphasizes, and yet my experience has been that most doctors do not collaborate with patients in the development of a health care action plan. In fact, a former doctor of mine at a major U.S. cancer center terminated me as a patient for asking too many questions. Yes, he used the words “terminating you as a patient,” and elaborated that he had been very tolerant with me for too long.

Unfortunately, I have been disillusioned by the U.S. cancer care system. I know it hasn’t been personal. Some doctors have large egos. For the most part, standard care doesn’t really exist. And, medical errors occur. But, the offenses I’ve experienced are unacceptable.

Along with being terminated as a patient, I had a radiation oncologist laugh telling me I was lucky if I lived five years from my brain surgery in April of 1998. Another major cancer center forgot to read my pathology slides for several months when I requested a second opinion after my surgery. Three months later, their belated analysis cited my tumor as more aggressive compared to the first pathology reading. They suggested immediate chemotherapy and radiation. However, as a result of my own self-advocacy, results from a third and fourth pathology reading at different medical institutions matched the first, and no additional treatments were recommended.

And, the worst offense came from another major cancer center where I had MRI scans for six years. My tumor started growing around two to three years after my surgery, but doctors at this facility didn’t inform me of my recurrence for several years until my six-year anniversary from surgery. (The radiologist reports reference growth starting in 2000. My MRI scan from 2000 to 2004 document the tumor growth. My former doctor’s reports from 1998 to 2004 refer to no changes and no signs of recurrence. I still don’t know how or why it happened.) The doctors at this cancer center then suggested I have an immediate second brain surgery. However, two other major cancer centers subsequently told me I shouldn’t have surgery until I experienced additional tumor growth, and symptoms. Sure, just sit and wait for tumor growth to the extent that it impacts your brain functioning and then we will cut your skull open (again). Oh, and by the way, outside of surgery, radiation, and chemotherapy, there is nothing you can do for your health. Nothing. Nothing. Nothing.

Healing is not only about medical treatments. Healing is a state of mind, and being, with openness for transformation and a commitment to self-inquiry. Healing requires going into the depths of the physical, emotional, psychological, and spiritual aspects of self. Healing demands thinking and feeling outside the box. Healing often necessitates major life changes.

Sometimes disease is cured, but the individual has not experienced healing. Curing is different than healing. Since we are all individuals, each of us holds a unique life path. Mine is a healing path. I have known this for years. The healing path is a difficult one, and it contains rewards and experiences beyond the ordinary. I don’t say this to boast, for I do not wish my path on anyone else. And yet, I cherish my healing path. I will continue to search and uncover new mysteries with the goal of no stone unturned.