I have been living with a medical death sentence since January 2008 when I was diagnosed with glioma multiform blastoma stage 4 and told I had only a 10% chance of living two years. (similar to what US Senator Ted Kennedy has – SK) Writing has helped me clarify my beliefs; my belief in myself and in my understanding of the role of belief in healing and the beliefs that underpin both allopathic and alternative treatments. Often I have had to take my own advice. There have been times when I have been feeling sorry for myself or using my situation as an excuse and I have had to remember what I have written and live up to my words. I have come to realize my diagnosis is not a tragedy and my possible death is also not something to worry about. I have also come to believe I don’t need to conform to mortality statistics. You might find it hard to believe, but most days I don’t worry about having cancer or dying at all.That’s a pretty compelling opener! Let’s dig into David’s history and see how he got to be so confident and upbeat.
I was taken to hospital mid December 2007 aged 45 due to having a grand mal seizure or fit. CT scan confirmed our fears of a brain tumor, 2.5 cm in the left parietal lobe. I had previously experienced a few discrete episodes of having difficulty talking and reading and the tumor was located in the part of my brain used for language. The tumor was on the surface of my brain so surgery was an option and was performed at the Hamilton Neurological unit in early January 2008. I was out of the ward and recovering at home within 3 days of the operation. The bad news came about two weeks later when the pathologist came home from his summer holidays, examined my slides and determined that I had glioma multiform blastoma grade 4. Medical literature describes glioma multiform blastoma (gmb) as “malignant and aggressive,” “grim,” and “inevitably fatal.” The statistical data gave a 10% chance of surviving 2 years, and that was with the “gold standard” treatment.This diagnosis certainly qualifies as bad news indeed. It is similar to the condition that Dr. Servan-Schrieber had. I reviewed his situation briefly in this book review post.
The surgeon tried to be as uplifting as he could be given the circumstances; he said, “I know people who have lived with this disease for years.” then he thought a bit and added, “Well actually, one person and it was two years.” I was full of bravado so I said, “Well, it’s my intention to survive this 100%” and he replied that he didn’t want to give me false hope. This was where I realized my hope was my responsibility and that I would have to be the one making choices about my treatment and the possible outcomes of that treatment.It is good that David realized this fact early on. In the USA we have come to rely solely on the opinions of the first doctor or two that we see for any condition and blindly follow their recommended courses of treatment. For minor issues this is certainly a fine option – leaving the “hard stuff” to the experts. For cancer, there is much the experts don’t know (or they often cannot keep up with current info), and you (and/or your support group) need to get up to speed on what the best therapies are, and any complementary therapies that you might want to pursue. Your doctor will rarely help at all on the latter category, and many will discourage it altogether!
Over the next few months I began to explore the truly amazing phenomena of the alternative cancer treatment bonanza that is available on the internet. I explored diets and alternate modes of treatment; I read stories of cancer survivors and the tragic stories of the many that didn’t make it. I read of miracle cures and I read the newspaper reports of practitioners of miracle cures being arrested when their patients died in hotel rooms in Bangkok (of course these patients had already been abandoned by their conventional doctors after extensive and possible destructive treatments had already failed). If you have spent any time researching this for yourself, and I bet you have, then you will no doubt have noticed that nearly everybody thinks they alone posses the truth about cancer (or any other dread disease) and that those who profess alternate viewpoints are not just wrong but most likely motivated by greed or evil intent. Conventional medical doctors discredit alternative practices and their proponents, who in turn accuse the MDs of being short-sighted, narrow minded, ignorant and puppets of pharmaceutical firms. Many go as far in their rhetoric to accuse drug firms and medical organizations of actively suppressing cures for cancer that are effective and inexpensive precisely because they are effective and inexpensive!This, in a large nutshell, is exactly the problem that accompanies the benefit of the internet. You simply must sift through SO MUCH absolute bullshit, unsubstantiated opinion, innuendo, and outright lies to find even a small kernel of truth. And often you have to guess about those! In my case the rewards were enough to justify the efforts. David seems to be headed in the same direction.
What to believe? This was the question. Should I follow the usual path of conventional oncology and back up my surgery with a course of radiotherapy and then chemotherapy? I wasn’t that keen, especially as the scientific and statistical data gave me a 90% chance of not surviving this for very long at all - so I was really questioning why I should put myself through it. I have always considered allopathic medicine (i.e. conventional medicine-SK) to be more about the disease and the drug than the patient and the cure (and their ability to heal themselves) I was also of the opinion that chemotherapy and radiation are a sledge hammer approach. My resistance to these treatments was added to after reading the “cancer survivor” stories of others who had managed to clock up a few years of life with GMB. Although they were alive after periods of 5, 10 and in one case even 30 years after initial diagnosis, their stories indicated continual medical intervention, reoccurrences of tumor growth, resections, debulkings and multiple courses of chemotherapy. Was this quality of life?What to believe, indeed! A real quandary for me, and for you readers as well. Shall we believe doctors, authors, internet flacks, David Eliot, or even me? All I can do is present the evidence and logic process I used and let you folks make your own judgments. An aside here – I am fully convinced that the term “alternative” and the thought process presumed by it has done vastly more harm to non-traditional therapies than any other single element. As David says, first people try the doctors’ recommendations, and when they fail they go to an alternative. And the vast majority of the proponents of “alternative therapies” (now frequently called CAM for “Complementary Alternative Medicine”) also suggest or even demand that you blindly follow their ideas and reject all solutions proposed by the doctors. I would recommend to my readers that we consider instead the term “Complementary Therapies” because these “non-traditional” treatments can help the body tolerate some of the unwanted side effects of medical treatments, and perhaps some can even magnify the good effects. If you have cancer and fear for your life (or quality of life), limiting yourself to an either/or scenario for treatment selection seems short-sighted at best. So here’s the bottom line – YOU have to take the time to find and implement therapies that are outside of the doctors’ expertise. The docs don’t know enough in most cases to help you or do much besides discourage you. Mr. Eliot’s story gets interesting and a little weird from this point…
Should I perhaps eschew conventional treatments, described as slash, burn and poison by the more embittered promoters of alternate regimes? I had already opted for the slash option (surgery) and felt better for it. (Perhaps if I hadn’t been dealing with a brain tumor I would have been slower to opt for surgery but from where I am standing now I am certainly glad I did, I doubt I would have survived the time it takes to research other options and make a sensible decision.) It seems that most people go for the standard treatments as offered by their doctors and health authorities and only turn to alternatives after these treatments fail (if they fail). By then, our hypothetical cancer sufferer has been told that there is no hope, their cancer has advanced to a near terminal stage and their body has been weakened by the radiation and chemotherapy treatments – not an ideal state to be in to begin an alternative cure regime. I reasoned that I would be better off finding an effective alternative while I was still healthy, with my immune system uncompromised by chemotherapy and my brain un-irradiated, but still I was faced with the problem of what to believe.
I could opt for a homeopathic treatment that was reporting an 80% cure rate for GMB (even grade 4) but I had never really put much faith in homeopathy before, though I wasn’t against it. I could try Ayurvedic treatments as promoted by a practitioner I knew and Dr. Deepak Chopra whose books I respected. I could change my diet, but how; macrobiotic, organic, alkaline, raw food, vegetarian, vegan? Perhaps a combination; halal organic vegetarian? (only half sure David is kidding here! – SK) But how would I get my Omega3 fish oil? How would diets combine with the treatments? For instance, homeopathy requires no onions or sour foods? Should I go for the all grape juice diet? Carrot juice is good. What about apricot kernels? They are banned in the US but used in cancer clinics in Japan and Europe. Had I considered acupuncture? Friends and family helpfully compounded the issue by bringing me their favorite remedies; my shelves bulged with fennel tea (cleansing), Tibetan gogi juice (good for everything), Himalayan salt (pink and salty) and strange contraptions that supposedly alter the electric and magnetic radiation within the house. My poor brain was in confusion. What is the truth about cancer, the medical industry and the alternative cures? Is there even a truth? Were there perhaps many truths? Each therapy or cure was backed up with either clinical studies or personal stories of diseases cured. What was the common thread through the morass of information, accusations, claims and counter claims?Interesting, David! Sadly at this point you and I part ways in thinking. Your path of belief now closely follows Dr. Servan-Schreiber’s – almost makes me wonder if it’s a side effect of brain cancer…
Then it became clear to me: everybody believed in their cure, or they believed in their practitioner, or they believed in the power of their savior: the common thread was belief. Incidentally the woman reporting a 30 year survival rate had a history free from recurrence and gave her faith in God the credit for her fortuitous recovery!
It didn’t really matter what avenue I chose to pursue for my healing as long as I believed it was the right one. Taking this a little further I wondered; if belief appears to be the main component of a cure then why choose to believe in anything external at all? Could I have enough belief, i.e. absolute faith, in myself, my will to live and the healing properties of my body to create a cure without reliance on any diet, therapy or substance?Wow! The power of his own ego. As big an egotist as I am (which is size XXL at least), I am sure that I don’t have the power. And anyone who dares believe so is risking a lot. It has worked for David Eliot and Servan-Schreiber so far. But if belief in anything (including oneself) is the answer, why DO anything else? Even these two recognized the foolishness of that part of their logic, and both did other things besides ego exercises to fight the cancer, and we should take a look at David’s selections…
I decided to put my belief into the Homeopathy option (I liked that they actually had a published study in a medical journal, evidence is so seductive). I would back that up with herbal supplements of Amygdalin, Selenium and Omega3 (also the fennel tea was quite nice, the gogi was revolting but worth a try!).
Now there was just the problem of what to say to my wife and my oncologist. Steph is a registered nurse and has faith in the medical system. From her viewpoint my decision was stupid and unscientific and just confirmed for her that I was soon to be buried. Since my diagnosis Steph had also been doing research, consulting with her medical colleagues and reading medical journal articles and they were not inspiring. One of her colleagues had even suggested that the best thing I could do was to get a doctor to write an affidavit that my condition was terminal so I could draw down my life insurance and then spend it having a bit of fun while I could! I didn’t like this idea much because the agreement would require me to die in a timely way. So we had a lot to talk about and it wasn’t easy but by the time we were due to see the oncologist I had made my decision clear and Steph was prepared to support me; I would try the alternative approach first and fall back on the orthodox treatments if there was evidence of a recurrence.My process (and I dare say most Americans would do the same) was pretty much the opposite - starting with the doctor recommendations and adding complementary therapies. While David started out choosing complementary therapies only and adding doctor medicine, we seem to have ended up with similar choices of a therapeutic mix. Traditional medicine supplemented with alternative therapies that seem reasonable and that we can afford. Tie all that together with faith (David’s in HIMSELF while I and others choose GOD), and you have a cancer-fighting regimen that can accomplish amazing things. Let's read the rest of David's story…
The difficulty was explaining this to my oncologist, not that he wasn’t understanding or supportive – he was. What I found difficult was maintaining my viewpoint in a formal medical setting to a doctor and in the presence of my wife, a nurse. Suddenly I found it hard to maintain faith in my chosen course of action. How could I say no to medical science and best practice while within the edifice of the hospital? I suddenly felt like my fourteen year-old self trying to explain to the school’s deputy principal why I shouldn’t have to do sports. I ended up having to do sports. Then the doctor upped the ante by presenting me with new data; a recent study which showed a 50% survival rate at two years for patients with similar conditions to mine (successful removal of tumour, no deficits, relatively young) and I began to get persuaded. Still I stuck to my original decision and my doctor agreed to support me with regular CT scans to check for tumour recurrence even though he thought it was not the best approach. (Steph had walked out of the interview by this time.)
I left feeling initially that I had made a stand for my health but the further I got from the hospital the worse I felt, I began to feel I had made a big mistake. I sat down with Steph in a nearby park and asked myself, “Why do I feel bad about this decision?” Then I realised I just wanted to be right. I had a prejudice against the treatments and didn’t want to change my mind about them. So I changed my mind and went back to the oncologist and signed up for 30 days of radiotherapy concurrent with daily chemotherapy (Tomodal or Temozolomide) followed by 6 months of further chemotherapy treatments. The initial 30 day regime was a major disturbance to my life but otherwise uneventful, except that I lost patches of hair due to the radiotherapy and became a bit depressed and tired by the end of it. I responded to the chemotherapy initially with intense nausea but this lessened in intensity and there was a period of exhaustion that kicked in about 6 weeks after the radiotherapy treatment. I am saving the alternative medications as back-up and will commence the homeopathic and herbal remedies once I am finished with the chemo.
Update 24/12/2008It should be pointed out that surviving a year with David's condition is highly unusual. So SOMETHING is clearly working. How does he feel after all this?
Well it’s been a year since my seizure and diagnosis and what a year! I am now finished with allopathic treatment, they can’t give me any more radiation and there’s no funding available for another course of chemotherapy. I don’t think I would take any even if there was. The good news is that I don’t have any indication I need any more treatment anyway. I had an MRI in late October and its findings were inconclusive, which I expected as my oncologist had been telling me for months that they would be. Also, as this was the first post-surgery MRI, there was no previous data to compare it to. The results did show some enhancement in my brain in the area of the previous tumour but there’s no telling if this indicates tumour or just scar tissue or healing activity from the radiation etc. I will be having another MRI in January and then there will be the possibility of comparing the two scans to produce more useful data. I’m expecting to see a reduction in the area of enhancement!
Physically I’m feeling pretty good. I still seem to get tired easily but I have gained the muscle mass that I lost during the radio/chemo regime and have been doing quite a bit of physical work. Mentally I sometimes find myself a bit forgetful and have difficulty finding words. Although this is not unusual I do sometimes think it is a deficit from the tumour/surgery/treatment, but it’s very mild. I am currently taking a course of homeopathic treatments for gmb though I can’t say I am experiencing any definite effects from the medication, possibly an improvement in energy levels, though I did notice them being effective at the occasional times I was experiencing headache and nausea. (but we know the effectiveness of placebos!) These homeopathies are supported by some very interesting clinical data and report a good success rate with lots of cancers including gmb.
In this description I have hardly touched on the mental and spiritual aspect of this time of my life, I will say though that I used all the tools at my disposal to manage my state so I was as honest and real as I could be with what I was feeling and my responses. There were times when I resisted and denied my condition, times when I felt depressed and hopeless and times when I was irritable and unpleasant, but overall, this experience has brought me to a great appreciation of my life and for the people in my life. I feel the most important aspect of my healing is the changing of the beliefs and attitudes I hold that could exert a negative influence on my will to live and chances of survival. I am confident that if I keep practicing a deep level of self awareness and honesty, keep putting my attention on a positive outcome and devote my energy to the service of others then I will survive, happily, for many years to come. And if I don’t, well at least I’ll have been spending my time and energy to best advantage and not been feeling miserable and sorry for myself.Take away the new-age speak and look for the bottom line. Positive attitude, belief in the efficacy of the treatment mix, and faith (of a sort) all play a part in healing. The lastest status is that David has also written a book that emphasizes his self-belief principles and some ways that he chose to apply them. If you're into that sort of thing, feel free to check it out HERE.
As for me, I will focus on the treatment patterns and results.
Update 22 January 2009Well said, David. Very well said.
Good news, I had another MRI and it showed significant improvement on the previous scan in October. Whatever the area of enhancement is, it’s getting smaller, so I’m confident it’s not tumour. We are all feeling so relieved about this result, it has lifted the cloud of doubt and fear that has always been hovering around any thoughts of our future. Apart from my continuing health, and being alive when so many gmb sufferers die in the first year, this is the first medical confirmation my treatments are being effective.
Of course, I can’t determine if my good health is because of the allopathic treatment, the homeopathic treatment, my belief management and visualisations or because I’m lucky but who cares? I’m not conducting a scientific experiment, I’m striving to survive.