2018 in review

The past year has seemed the longest in my short history. The illness dragged on.

Illness has taken its toll. Thanks to chemo I still have shingles, my right eye is defective (often sore and blurry), and I feel fluish every second or third day. That is nearly 12 months after starting chemo and nine months after the end of chemo.

I have some lingering anger about the fact that I have now experienced how the pharmaceutical industry holds medical treatment for ransom. I know (because my oncologist has told me) that cancer treatment specialists are fully aware that chemotherapy will not bring any healing to kidney cancer. But the government-backed medical system (pushed by big pharma) insists that chemo be tried before something that will in fact work on kidney cancer, namely immunotherapy. This situation has killed a lot of people, my cousin Karen included. It was immunotherapy that was introduced soon enough to train my immune system to attack the cancer cells in the three new tumours that appeared on my spine at the end of 2017. By the way at the end of chemo in April 2018 it was revealed by CT scans that the tumours had actually grown larger during chemo!! So I might not be alive today if it had not been for the timely introduction of immunotherapy.  

Remission simply means that, although the three tumours on my spine are still there, they have stopped growing. I am waiting for the results of a CT scan taken in mid December in Yellowknife. I requested that scan because of some twinges and prickles in my left hip and thigh, similar to the precursor to the discovery of the tumour on my basal spine vertebrae near the end of 2017. It may just be an artifact of shingles. I should get a call from my oncologist at Cross Cancer Institute in Edmonton in the next day or two with details about the scan. Everything slowed to a halt for Christmas and New Years in the medical field.

Choose - Hope - Survive

The three words in the title of this post sketch out the three stages of my journey to survival and cancer remission. First I had to choose - to make a decision to take responsibility for my own health. For me this meant that I would combine oncology cancer treatment (now immunotherapy) with natural healing. Then I needed to believe - use the power of belief - to recover, and this brought hope. And that led to survival.

I am writing a book on my recovery journey. The working title is now one word, a command: Survive. I hope to complete the first draft by the end of this month, December 2018.

I am using poetry to help keep my spirits up in the cancer recovery journey. The side effects of the original chemotherapy linger, bringing tiredness, depression, shingles neurological pain on one side, and sometimes just feeling as sick as if I had the flu. Here are three poems leading from despair to belief and hope (please excuse the wonky copy and paste formatting from Word). For me they bring much comfort and food for thought:

  Cancer

Cancer

Sinister

Hide-and-seek now-you-see-it-now-you-don’t

Monster

Evil incarnate

Cold grey iron

Lurking – hiding

Your face is darkness and dismay

Cold grey eyes – pale bloodless skin of death

With hair the colour of cremation’s fire

Wearing a long black cloak

To smother each victim

Neither male nor female

 

Outside time and space in this universe

 

 

Cancer in Seventeen Syllables
 

Cancer - sinister

 

Now-you-see-it-now-you-don't

 

Evil incarnate  
 

Balm of Poetry

 

Joy replaces fear

Debilitating cancer

But pen keeps writing

 

Balm of poetry

I need it now – darkness comes

Let joy win the day

 

I am still alive

Against all odds – keep writing

Poems bringing life

There you have it. I keep writing, because it keeps me working toward the goal of continued remission. Being in remission is not "home free". When a deadly cancer like Stage 4 Renal Cell Carcinoma is at stake, it can recur at any time so I must keep vigilant. Remission is simply some breathing space to prepare for a next onslaught.

Life goes on - both after diagnosis and after remission

In my last post I mentioned the book Surviv(her) featuring the cancer experience of young women. I would like to echo the words of Kristin who was diagnosed at age 21. She says: "The whole point of getting cancer is to wake up and do something different. What would you change? What parts of my life aren't I happy with right now? Everything is just broken and now I can start from scratch."

After I was diagnosed with Stage 4 Renal Cell Carcinoma, every new morning seemed somehow to be a special day. I realized that time in the sunlight of this life was precious, and that I needed to consider each day as very valuable, and that I needed to change my priorities. What could I do to help another person in my life? What did I hang on to that was just frivolous and of no value and should be got rid of?

After remission in October 2018 I still keep up my natural healing regimen of supplements that are considered to prevent or reduce cancer, as well as injections three times a week of Iscador (a derivative of mistletoe developed to battle cancer in Germany). And I keep discovering new things.

I have mentioned that getting shingles was one side effect of my chemo experience. Although the nasty shingles pain still persists it is somewhat reduced from what it was a few months ago. Then I read that turmeric (with the active ingredient being curcumin) is a pain reliever. Now I have been taking curcumin in the morning for months. But at nights I have some joint pain problems (shoulder, hip) and sometimes the shingles pain wakes me up. So I decided to take my high potency curcumin at night just before I go to bed. Voila! Joint pain and neurological pain from shingles no longer wake me up. I can now get a good night's sleep.

Also I have just received what I consider to be an honour. There is to be a living with chronic disease (prevention, self-management and care) workshop in Yellowknife on December 5 (two weeks away) and I have been asked by the territorial Cancer Care Specialist for the NWT Health Authority to be there as a patient contributor to the workshop from my experience as a chronic cancer sufferer living in a remote community of the NWT. I will decide by tomorrow if I will attend and make a 10 - 15 minute presentation from my cancer treatment and recovery perspective.

The Cancer Sharing Circle, CBC News, and community support

I was interviewed by Mackenzie Scott for CBC North as a participant in our local Cancer Sharing Circle that has met a couple of times this fall here in Inuvik. It aired on radio this afternoon and will available in digital form on the weekend.

Taking part in the Sharing Circle enables me to share parts of my story that give other cancer sufferers hope. Hope is a big thing in cancer recovery. As I have mentioned before, belief in recovery brings hope.

Our Sharing Circle here in Inuvik is for cancer patients, survivors, caregivers, relatives of cancer patients/survivors and anyone interested in cancer recovery. Participation certainly takes away the common feeling of loneliness and isolation for a person with cancer. And I suppose it is easier to make a Sharing Circle successful in a small community where it is a common thing for people to come together to help one another.

Fear is another common emotion as well as feelings of loneliness. And fear, being a negative emotion, can encourage cancer growth instead of combat it. So it is important to change fear into faith for cancer acceptance and recovery.

I have discovered an advantage of living in a small isolated community. And that is that people truly care about you. The news travels fast when a person is ill. I have been approached by many elders in the community, expressing how happy they are when they heard I was in remission from my kidney cancer. And I am on a first name basis with everyone in the local pharmacy and drug store, including the pharmacist and all the pharmacist helpers.

Speaking of support for cancer patients and survivors, young women face special problems. They are just entering the age of marriage and parenthood. See www.survivher.ca for information on the Surviv(her) movement. I have bought the book entitled Surviv(her) and the stories of young survivors is truly inspiring. All of the sales $ for books and other items go directly to women't cancer research. The author of the book and the website is Dr Amy Morris, a cancer pharmacist in Saskatoon, Saskatchewan. If you google her name you will see many news stories about this inspiring young cancer survivor.

More on belief and recovery

I have mentioned Stephen Hawking's struggle with his ALS disease and his determination to make discoveries as one of the world's most brilliant scientists in spite of his incredible handicap. A conventionally wise ALS expert has insisted in an interview that Hawking's determination to survive would have had nothing to do with extending his life! When will western medicine get the hint that maybe, just maybe, there are links (well proven in many books and research reports on cancer recovery) between physical disease and the power of the mind.

Another ALS sufferer is Steven Wells of Canada who is in his mid fifties, having been diagnosed at 21. I wonder how much his positive belief has influenced his life. Here is a quotation from UK Prime Minister Winston Churchill during WW2 on Steven Wells' wall:

“Sure I am this day we are masters of our fate, that the task which has been set before us is not above our strength; that its pangs and toils are not beyond our endurance. As long as we have faith in our own cause and an unconquerable will to win, victory will not be denied us.”

I have been studying and comparing how the very similar kidney cancer scenarios of my cousin Karen, two decades younger, and I came to the very same impasse at the point where we both independently though 18 months apart came to realize and were told that chemotherapy would not work against Renal Cell Carcinoma. Karen could not afford to be put on the recommended immunotherapy Opdivo (Nivolumab) because it was not covered by her medical insurance in the US. She was forced to continue on Sutent chemo for another year. By the time she was able to get on immunotherapy it was too late and she died in mid September 2017. At the same point in my prognosis I could not tolerate chemo so was put on Opdivo which was paid for by our helpful Canadian health system.

I also am saddened again by the realization that Karen would not consider special naturopathic treatment as a possibility for her. She would only follow what the oncologist recommended for treatment. I on the other hand have made several special dietary changes, and inject Iscador (mistletoe treatment developed against cancer in Germany) three times a week. I continue the dietary regimen and Iscador but have had not immunotherapy now since mid July 2018 and my cancer is in remission.


It is true that naturopathic doctors are not (yet) regulated to there are good ones and there are bad ones. You must ask around to find a good one. We are fortunate to have a very good Naturopathic Doctor in Yellowknife, NT, Dr Nicole Redvers, who has literally saved our lives through her suggested interventions for different medical issues.

We have dear friends down in Illinois and Wisconsin who are facing the same situation and, like Karen's predicament, they refuse to consider anything other than whatever chemo treatment the oncologist in Wisconsin in has recommended.

I am sure that many cancer sufferers are confused and may wish for alternatives to chemo but don't know how to approach it with their doctor or oncologist. Here are some questions to ask:
1)  Does your cancer clinic have a specially trained nutritionist, or a special nutrition program, for cancer patients? (Many clinics do, including the Cross Cancer Institute in Edmonton Alberta, and the clinic at the University of Wisconsin as examples)
2)  Do you support natural healing protocols to work with chemotherapy and immunotherapy to reduce tumor growth?
3)  Do you support using mistletoe (Iscador) as developed in Germany to treat various cancers?
4)  Can you put me on immunotherapy as soon as possible? (medical systems across North America insist that a person be put on chemotherapy first even when it is known that chemo will be ineffective.

That's all for now. Keep happy and healthy.

A Summary of My Recovery Journey

I would like to include a summary of my recovery journey from the time of my operation
for Stage 4 Renal Cell Carcinoma, which followed a hectic air ambulance trip from Inuvik 2200 miles south to Edmonton on November 27 2015 to attend to a suspected heart attack! So here it is. And I apologize for the formatting errors. That's what happens when you copy and paste into blogspot from Word!

I began my cancer recovery journey at the time of the nephrectomy on the morning of November 29 2015, the drastic six-hour operation by Dr Adrian Fairey, one of Canada’s foremost urologic surgeons at the University of Alberta Hospital, that in part removed my left cancerous kidney as a first step in an operation for Stage 4 Renal Cell Carcinoma (RCC). The cancer had metastasized to my lungs and in my abdomen through the renal vein up near my heart. The operation removed the cancer in the vein and anywhere else in my abdomen, but did not attempt to remove the small cancerous nodules in my lungs. If a piece of tumour had travelled further up the renal vein to my heart, it would have been game over – the discussion for my demise in that case would have been that I simply suffered a heart attack! I replaced fear with excitement, wondering how this drastic operation would change the rest of my life. That positive excitement was to be the first step of healing.

And it was the first step in harnessing the power of belief to heal. Henry Ford is often quoted about the power of the mind: “If you believe you can or if you believe you can’t … you’re right.” If you have cancer and the oncologist tells you that you only have six months to live, you have a choice. You can believe this expert, in which case he will be right, you will very likely die within six months. However, if you say: “No, I’m not going to believe that – I’m going to beat this thing, I am going to heal,” there is a strong chance that you will join countless individuals who have beat cancer.

I have mentioned Stephen Hawking before. His life has become a great inspiration for me. In a recent New York Times article, author Dennis Overbye remarks: “Dr. Hawking was the manifestation of perseverance; stricken by Lou Gehrig’s disease, he managed to conquer the universe from a wheelchair.” I am convinced that Hawking lived so long with the deadly disease in large part because he refused to give up, he refused to surrender to the physical decimation of the disease. Similarly, I am convinced that I am alive today partially because I decided to believe in recovery through the mind-emotion-body-spirit continuum of healing.

Belief is extraordinarily powerful. Henry Ford couldn’t have said it better! The power of my own belief was confirmed a few months ago when I discovered an old published paper: “The role of belief in healing,” Ellen Warner, Can Med Assoc J Vol 128, 1107-1109 (1983). And just recently I have been inspired by many books on cancer recovery through the power of natural healing as a result of encouraging the immune system to do its thing. I especially value a book by Bruce H Lipton, The Biology of Belief, Hay House (2008) where it becomes obvious that our thoughts and beliefs actually influence changes in our DNA and the responses of our immune systems to the onslaught of many diseases, especially cancer.

I continue to encourage my immune system by the power of belief – I am committed to cancer recovery – and by employing several natural therapies, but especially by revising my nutrition – minimizing sugar intake and minimizing simple carbs in my diet, while reducing animal protein, including milk casein, and while increasing raw and steamed vegetables.

Immediately after my nephrectomy operation, I sought the advice of a trusted naturopathic doctor in Yellowknife, Dr Nicole Redvers, who had been instrumental in discovering the potentially deadly food allergies plaguing my spouse Sandra. She advised me on changes of diet, and advised me to continue injections of mistletoe extract which has known cancer-fighting properties.

The first CT Scan after my surgery took place about two months after my operation in February 2016. The results were surprising. The deadly RCC had not in any way become more aggressive, there were no new tumours, things seemed to be looking better ink my lungs, so no treatment was necessary. The months passed. The inevitable happened – I became complacent – I cheated (only a bit mind you) and started eating some sugar-based treats once in a while (the whiles became shorter). Then in November 2017 I had a scan that showed much to my horror that I had three new tumours, one at the base of my skull, one at the L1 lumbar vertebra and one at the base of my spine in the sacral region.

To combat this new cancer invasion I started chemotherapy in pill form in early January 2018, first spending a few days on Sutent and five weeks on Votrient (Pazopanib) which was all I could tolerate, at which point I was done – I was so ill I told my spouse that I would rather die than continue the treatment. My oncologist then switched me to an immunotherapy treatment, Opdivo (Nivolumab), administered intravenously for six sessions every two to three weeks at The Cross Cancer Institute in Edmonton. The Nivolumab had minimum side effects, whereas the chemo side effects of nausea, loss of appetite, 55 pounds of weight loss down to 150 lb at the lowest point, muscle weakness (requiring a walker to move around my own home at its worst), and extreme tiredness, and exhaustion for minimal exertion very gradually dissipated during the immunotherapy.

It is usually expected that chemotherapy is ineffective against RCC, yet the health system required me to take this deadly stuff before allowing my to take immunotherapy. There was proof of this in my case. In early April 2018 at the end of the chemotherapy the tumour at L1 on the spine had expanded by 1.0 cm and the one in the sacral region at the base of the spine had expanded by 0.7 cm. In contrast to this the Nivolumab immunotherapy arrested the growth of the three locations on my spine so that the most recent CT Scan in October 2018, taken 2 ½ months after the completion of the immunotherapy, shows complete stability of the spinal tumours, no new growth anywhere, and only one small possibly benign nodule in the lower left lobe of my lung. On Wednesday, October 24 2018 I received a call from my oncologist informing me that my Stage 4 kidney cancer was now in REMISSION, ahh, the “R” word, wonderful indeed.

Finally, I want to express my gratitude to Tasuku Honjo, one of the two Nobel laureates in Medicine 
for 2018, for his research that led to the development of a class of drugs known as immune checkpoint inhibitors, of which Nivolumab is a shining example that works against RCC. So my life has been saved by the work of a 2018 Nobel Laureate – I find that fascinating. And I am even more excited today than that day on Saturday November 28 2015 when the surgeon informed me that the intensive six-hour nephrectomy and metastatic cancer operation was necessary immediately.

Kidney cancer in remission!

Well at last I have somewhat to report!  I have been off all treatment for three whole months, the last immunotherapy being during the third week of July.

I was to have a checkup CT Scan in Yellowknife on Tuesday October 2, but to no avail, because there were no hotel rooms available in Yellowknife the first week of April! That is strong evidence that Yk has become a tourist town, with planeloads of oriental and southeast Asian tourists arriving daily. Hotel expansions cannot keep up with the demand. It seems that the Arctic has become a "hot" destination for orientals, for viewing Northern Lights, dogsledding (all ho-hum!! for us who live here), etc.

And so I didn't get a follow-up CT Scan until Monday October 15. It was based on a bloodtest Sept 24, which was good news with creatinine back in the normal range for my one remaining right kidney and an eGFR reading of 48. As long as the eGFR is above 40, the lab is prepared to give me intravenous contrast for the best CT Scan procedure.

Then I waited, and I waited, and I waited for a call from Dr John W at Cross Cancer with the results. The days dragged on. Finally got a call from him early this morning and he was pleased with the CT results. Everything is stable - no new tumours, no new nodules in the lungs. All existing evidence of cancer is stable or shrinking. The lymph nodes in my chest are still shrinking - all very good news. And Dr W finally used the magic word "remission". My cancer is now considered to be in remission, and no checkups necessary for three months or so, in January or February 2019.

Sandra is very happy. This has been a very worrisome time for her. Cancer is worst for the caregiver than it is for the patient.

I am feeling better and better, slight improvements every day to the old side effects of chemo. The shingles neurological pain is slowly subsiding. The only new thing is something precancerous re skin cancer on my forehead. They took a biopsy this morning at the Inuvik Hospital. That is not particularly worrisome because the likely type of skin cancer is relatively benign and can be burned off by freezing, or at the worst by skin grafting.

Well, that's all for now. Hopefully I won't have to wait so long till the next update.