Being a cancer patient in clinical setting

I find Dr. David Servan-Schreiber’s description of being a cancer patient to be very apt,

I entered a colorless world. It was a world where people were afforded no recognized qualifications, no profession. A world in which nobody was interested in what you did in life or what might be going through you mind. Often the only interesting thing about you was your latest scan. I discovered that most of my doctors didn't know how to treat me as a patient and a colleague at the same time. At a dinner party one evening, my oncologist at the time, a brilliant specialist I very much liked, also turned out to be a guest. When I arrived I saw him turn pale, then get up and leave after some vague excuse. Suddenly I had the feeling that there was a club of the living and I was getting the message that I wasn't a member. I began to feel frightened that I was in a category apart, a category of people defined primarily by their disease. I was afraid of becoming invisible. Afraid of no longer existing, even before dying. Perhaps I was going to die soon, but I still wanted to live fully up to the end. (David Servan-Schreiber, Anticancer: A New Way of Life. New York: Viking Penguin, 2008. pp.17-8).

Servan-Schreiber is a clinical professor of psychiatry at the University of Pittsburgh School of Medicine and when he was diagnosed with a brain tumor, he experienced being in a different world. I had an almost similar experience when I was with my oncologist in her clinic. She was not interested in the fact that I had studied theology in Boston, was a chaplain intern, had worked in a hospital setting, provided spiritual care and support for dozens of patients, and I am now feeling displaced as a cancer patient. She was not interested in my past, nor who I am. She was only interested in how soon I could get a CT scan for her to establish a new baseline (she said this repeatedly during our 2nd meeting), so that she could put me on adjuvant systemic treatment (she repeated this during our 1st meeting). I was just another cancer patient to her. Whatever I clung on to prove that I am a unique human being was in the process of being taken away in the clinic. At least, she did not ask my spouse to leave nor ask me to change into the hospital gown as my spouse and my street clothing were my last shred of evidence verifying my uniqueness as a human being. If I were to be in hospital gown and alone by myself, I might have felt like a faceless digit in the presence of my oncologist.

Top Ten Not so Very Helpful things to say to someone experiencing the loss of a loved one

I learned the following from my clinical and pastoral education program, and I thought it will be helpful to share with those who are trying to comfort others in needs (and I have pasted them on my Facebook notes on August 6, 2010).

Top Ten Not so Very Helpful things People Say to Someone Experiencing the Loss of a Loved One.

10. God needs him more than you do.
9. God gave him this disease in order to test you.
8. God never gives you more than you can handle.
7. God loves him so much that he's taking him home.
6. I know exactly how you feel, my cat died last week.
5. I'm sorry this is so bad for you because I love you and I know this is terribly hard on you.
4. Well, you would not want him to live in the shape he is in, would you?
3. We have to be strong so we can give the victory to Jesus.
2. You think this is bad! You should have lived through World War II.
1. So, do you think you'll re-marry soon?

Talking about cancer

The English writer Julia Darling was suffering from cancer when she penned this:

Be direct, say "How's your cancer?" Try not to say how well we look compared to when you met in Safeway's. Please don't cry, or get emotional, and say how dreadful it all is. Also (and this is hard I know) try not to ignore the ill, or to scurry past, muttering about a bus, the bank. Remember that this day might be your last and that it is a miracle that any of us stands up, breathes, behaves at all. (Julia Darling, “How to Behave with the Ill,” quoted in Adam Wishart, One in Three: A Son’s Journey into the history and science of cancer. New York: Grove Press, 2007. pp. 233. Please access http://juliadarling.co.uk/retro/behave.html for the full version of the poem.)

Adam Wishart whose father died of cancer wrote a book describing how his father coped with cancer and how the family was affected. While narrating his father’s cancer, he also blends in the history of cancer treatment which I find to be a delightful read. Here’s what he says towards the end of his book,

We need desperately, therefore, to learn how to talk about cancer and to regard it no longer as a painful taboo. There is an urgent need to do so, because each of us will one day be touched by the disease, as one in three people will be diagnosed with it within their lifetimes. It is time to understand that cancer is becoming a disease to live with rather than only die from. (Ibid)

Indeed, I think there is a need to learn how to talk about cancer, rather than pretending the illness is not there or affecting the one whom we love. I am not sure whether it is our Chinese culture’s emphasis on face that hushes discussion of the illness. It is by being honest and frank with one’s illness that one can continue to have the courage to face it and to walk the journey together with those whom he/she loves. I differ with Julia Darling about not getting emotional as it is only human to be emotional when his/her loved one is afflicted with terminal illness. I do understand the burden of the cancer patient to want to comfort those who are saddened and emotional. However, when friends and family members do get  emotional, it is an avenue for all of us to cry together, to embrace each other and to walk this tough journey authentically together.

But I believe it may not be necessary to disclose the illness to every friends as some are not in a state whereby they are ready to empathize and attune to their own emotion. Some lack the capacity for grief as they are accustomed to a life of stability and have been living in a facade of success. It is a risk to make one's illness known. It is a risk to make oneself vulnerable and not knowing the outcome of that risk. I believe taking the risk may be worth it if one holds the conviction that life is still beautiful despite the many flaws and ugliness, and the beauty is enhanced or manifested when the friend and befriended, when the lover and beloved choose to stay committed in their relationship even when faced with the prospect of imminent separation. However, when either one chooses to forego this commitment, it is the cost of the risk one has chosen.

Decision to defer my CT scan to Dec 6

I have been reading more about cancer from books and medical journals in the last one month than in other month. I found out from a study in New England Journal of Medicine (July 1, 2010 issue) that exposure to CT scan can increase risk of cancer by as much as 1 in 80, i.e. 1.25%. This is contrary to the information given by my oncologist. When I was a chaplain intern at Massachusetts General Hospital I learned to be an advocate for my patients. I remember there was a patient at MGH who preferred not to continue treatment and his request was ignored by his medical doctor, and I brought this issue up to the medical practitioner in-charge of him and we deliberated over this together. There was another patient who had lung infection complicated by urinary tract infection (UTI) and I had to check with the nurse in-charge of him whether his UTI medication was included in his take-home medication package. Now I have to be my own advocate by reading books and journals about the paradigm which Western medicine operates and the possible protocol. I also discovered that my type of kidney cancer is considered rare (Type II papillary renal cell cancer to be more exact) and my treatment option is limited for my stage of kidney cancer. I also learned about medical studies done on anticancer food could not make it into the mainstream medical scene for obvious reason that these food cannot be patented. For the sake of comparison, a relatively minor anticancer medicine such as Taxol brings in a billion US dollar a year to the company holding the patent according to David Servan-Schreiber’s Anticancer: A New Way of Life.

I have been informed last month that I will be given targeted treatment through drug that is designed to inhibit the growth of cancerous cells (technically called anti-angiogenesis drug, and not to be confused with chemotherapy). When the drug loses its effect within few months as the more resistant cancerous cells become dominant, I will be given another type of drug till the option is exhausted, and the cancerous cells will be uncontrollable after that. This treatment will typically last for a year to a year and a half. If I were to pin my hope on Western medicine, my best hope lays in the invention of a gene-targeted drug for my type of kidney cancer that would stop the further replication of my mutated cancerous cells. This type of treatment called the gene-targeted treatment was first successfully pioneered for chronic myeloid leukaemia patients with the drug Gleevec in 1999. Since this type of gene-targeted drug for my kidney cancer is not available yet, I am sticking to regular alternative treatment consisting of Chinese herbs, finger pressing of meridian to stimulate blood circulation, practice of Tai Ji, diet of anticancer food, and natural supplements to boost immune system and to combat cancer. As I am not sure how much of this alternative treatment will work for me, I have decided give myself more time to try it out and have postponed my original CT scan scheduled yesterday to Dec 6, and my appointment with my oncologist to Dec 13. Added on to my arsenal of tool is learning to attune to my psychological state and to break free from feeling helpless. I understand from Servan-Schreiber’s Anticancer that our psychological state plays an important role in managing cancer and as a clinical professor of psychiatry at the University of Pittsburgh School of Medicine, Servan-Schreiber has clinical studies to support his theory which is still considered new to the mainstream oncologists.

I believe Professor Vincent T. DeVita’s textbook Cancer: Principles & Practice of Oncology has set the tone for most oncologists. This author discovered the cure for Hodgskin’s disease by combined chemotherapy and is the former director of the National Cancer Institute in U.S. According to Servan-Schreiber, the latest edition of the textbook does not have a single chapter on the role of nutrition in the treatment of cancer or the prevention of relapses. This further helps me to understand why my oncologist is not likely to explore alternatives outside the National Cancer Center’s protocol. If you could, please continue to pray for my physical healing and spiritual healing (physical: cancer; spiritual: brokenness I experienced). I pray that my alternative treatment will be effective and my coming CT scan will testify to it. Even if that does not happen, may I continue to spend my time meaningfully with God, with God’s community of people, with family members, and be an instrument of blessing to others. As a result of being a cancer patient, I found myself with greater empathy and able to connect to others who have/had illness themselves or are affected because their loved one is suffering.

Coronary artery and plant-based diet

(T. Colin Campbell, The China Study: The Most Comprehensive Study of Nutrition Ever Conducted. Dallas, Texas: Benbella Books, 2006. p. 128.)

A patient with a heart problem at forty-four years decided to try out Dr. Caldwell B. Esselstyn, Jr. ‘s dietary program without any cholesterol-lowering medication, and after thirty-two months, this patient reversed his heart disease and lowered his blood cholesterol to 89 mg/dL. The picture on the left section shows his coronary artery before switching to the plant-based diet. The one on the right shows the same artery opening up after adopting a whole foods, plant-based diet. Dr. Caldwell has been doing studies of patients whose blood cholesterol changed after adapting his recommended diet since 1985. By 2003, patients in his studies groups recorded forty-nine coronary events prior to a whole foods, plant-based diet, and zero events for those who adhered to a whole foods, plant-based diet. This is another evidence how switching diet could radically change the disease. (From Campbell, The China Study, pp. 127-9)

Mouse with aggressive tumor and without

(David Servan-Schreiber, Anticancer: A New Way of Life. New York: Viking Penguin, 2008. pp.112)

Both mice without immune system were injected with human lung cancer cells by Richard Beliveau’s research team at Sainte-Justine Children’s Hospital, Montreal. One mouse developed aggressive tumor, while the other had the tumor in check. What’s the difference in their diet? The one that had the tumor in check was given a diet of brussels sprouts, broccoli, garlic, scallions, turmeric, black pepper, cranberries, grapefruit, and even a bit of green tea. Its proportions were calculated so that the diet matched what a human could take in during an ordinary day: 100 grams (4 ounces) of cabbage, 50 grams (2 ounces) of blueberries, 2 grams (0.07 ounces) of tea, etc. The group of mice being fed with anticancer food had their tumors developed more slowly. Now we do have documentation on empirical studies of the effect of anticancer food in the lab.