Can the chemotherapy cure be worse than the disease?

From my last post you would think that the Sunitinib treatment was going ok. That turned out to be misleading. After the pill on the 28th day I expected my 14 days off to be a time of rejuvenation, a time of returning to normal. Instead the side effects of nausea and physical weakness and loss of appetite intensified during that time! That was very disappointing.

I travelled to Yellowknife for my next appointment with a Dr John Walker on Thursday February 15. During the same week Sandra had a colonoscopy procedure so it was quite a week. Walker told me that is was not uncommon for the time off from the Sutent to experience worse side effects!! But do the medical specialists tell you this in advance? No way. No indication at all. However, when I told Walker about how serious the side effects of nausea and no appetite had become he decided to put me on another chemotherapy drug called Pazopanib, which is more expensive (which is why they don't prescribe it at the beginning) but targets the tumours in the same way. It takes a minimum of an extra week to get the new prescription at our pharmacy in Inuvik, and I hope to start it on Monday the 26th.

Well -- here goes my rant. No doctor or nurse ever told me that the nausea medication that is recommended for chemotherapy drugs, referred to as Ondansetron, works by knocking out melatonin, which in my case started to contribute to quite severe depression. Which then snowballed to more nausea, weight loss, and loss of appetite. So today I am going completely off this crazy thing especially because the nausea is not bad today. This morning my weight had fallen to 165lb (which I haven't see since high school) and my blood pressure had fallen to 95/63 which was leaving me quite faint. But with a return of appetite this morning, I have been able to get some strength back.

So there you have it. And oh yes, it is misrepresentation to call Sutent or Pazopanib immunotherapy. Immunotherapy drugs actually train your own immune system to target the cancer. That is not the case with Sutent, which is a targeted chemotherapy. If the Pazopanib stops working to tackle the tumour growth, immunotherapy could be the next avenue of treatment.

But what I hope is that my next CT scan, which won't take place until April now I am told, shows that the tumours have shrunk. Apparently some people have to stay on the chemotherapy drugs like Sutent or Pazopanib for months. I am not sure I can survive that. I am hopeful that the next scan will show improvement and that I can have a rest from drugs to concentrate on the other mind-emotion-spirit modes of healing.

Another nasty side effect of the Sutent was to make me so weak and to make my brain feel toxic and unresponsive so it is very hard to even have a positive healing attitude in the midst of all that. My next oncology appointment is scheduled for March 19 by teleconference. Sandra will have to take time off to be in on the call, because with my deafness I will miss some of the important information.

I want to say to all of you readers that I am humbled and I truly appreciate all the prayers that you have said go up to God on my behalf, both for me and for Sandra too. It is very difficult to go through all this stuff on human strength alone. I continue to desire more joy in my journey, because joy is essential for any lasting spiritual healing. I always go back to the prophet Joel, where in verse 12 of chapter 1 he says that all the fruit trees of the field were withered because joy had withered away from the sons of men. And I am convinced that joy can only come when I am spiritually sound, so that alone keeps me busy. I need to do more sincere praying and meditating to help me along.

Immunotherapy grinds on - making alternative therapies difficult

I am in Fort McPherson this week, keeping Sandra company as she and another trainer give a three day course in mental health first aid. I am also working on some low stress consulting work while I am here.

Immunotherapy grinds on. But I shouldn't complain. I don't have many side effects of the Sunitinib other than some easily-controlled flue symptoms and a general feeling of malaise. I am approaching 20 days of the first 28 day cycle at 50mg/da, which will be followed by a rest period of 14 days then another 28 day stint. In mid February I am to get another CT scan to see the progress the radiation and immunotherapy has made.

Back to the Aklavik experience last week. On Saturday last we, my project buddy Katie and I, tried to drive out of Aklavik on the Mackenzie River Ice Road right after lunch before the plows were out. In places the snow was drifted hard and 2ft deep and we nearly got the 4-wheel drive GMC truck stuck. So we had to  turn around and return to Aklavik. The photo below

shows the wide Mackenzie facing west where there was less snow and an opportunity to turn around. You can see the Mackenzie Mountains away on the horizon. Later on that day, at night when visibility in the vehicle lights is better, with the help of the plows we were able to cover the 120 km in just under 2 ½ hours. Then for 8 of the last 15 km we were following the plow at 16km/hr! In case you are wondering, the ice is likely about one metre thick by this time in the winter.

Another thing you may notice in the photo is the rather eerie light. That is because the photo was taken only about two weeks after the sun came up above the horizon again in early January. If the clouds were not there you would see a magnificent coloured glow in the sky from the sun so close to the horizon away in the southwest.

Thanks to my buddy Ray in Edmonton, who is making great strides in his healing from Stage 4 pancreatic cancer, I was referred to a wonderful book, Radical Remission: surviving cancer against all odds, by  Kelly A Turner, PhD, HarperCollins 2014. I contains so much of the help that I thought I was going to write about in my own book in preparation about my cancer recovery journey. It emphasizes the importance of working with all aspects of mind-body-spirit continuum. So now my book will concentrate on my own journey, with reference to the excellent references in Kelly Turner's book.

In my view we should consider the mind-emotion-body-spirit continuum perspective, because emotions arise from complex often subconscious sources that are distinct from just "mind". Our human experience is a complex interaction between these four factors. All that western medicine, such as the oncologists at Cross Cancer Institute professional as they are, can do is work with the body. When you consider that the body is only 1/4 of our complex continuum, you can begin to see that there are must be other healing factors for the 3/4 that conventional medicine does not address. 

First and foremost in Kelly Turner's book is attention to nutrition, and the foods that trigger cancer cell growth, sugar and milk casein being the biggest culprits. I will talk more about all this in future blog entries. The mind-emotion-body-spirit connections are well known in psychology by the way. For example, see: http://firstnationshealing.com/resources/McCabe.pdf

The delay tactics of radiation and immunotherapy

Radiation is very debilitating, complete with nausea and total loss of appetite. However the good news is that as the 2 1/2 weeks of radiation took place pain got less and less. However, according to the oncologists, radiation doesn't in any way cure cancer - it simply slows its growth.

Following the radiation immunotherapy was prescribed, through a drug called Sutent (Sunitinib) which prevents blood vessels from forming to nourish tumours. However, that too just delays the inevitable. Sometimes the metastasized kidney cancer simply takes off and grows with renewed vigour after being held back.

Another strange thing is that the renal cell carcinoma preferentially attacks bone when it metastasizes. So that is why the three tumours that I am fighting are attacking the base of my skull, and the vertebrae in the lumbar and sacrum areas. Fortunately the cancer doesn't prefer to attack the spinal cord, so I don't need to worry about being wheelchair-bound.

The conclusion is that through the natural healing processes I have talked about in previous posts must be brought forward immediately with renewed vigour. I did meet with our naturopathic doctor in Yellowknife during the first week of January, and she is waiting to see what the next CT scan at the end of my first 28 day Sutent regime shows regarding where the tumours are at. The Sutent immunotherapy treatment is 50mg per day for 28 days, then 14 days off, then 28 days again, with a CT scan at the end of the first cycle.

I have had an interesting time working on a small project in Aklavik this week. But I will be stopping that work to reduce stress when I return to Inuvik at the end of the week. I must now concentrate on exercising all of the natural healing protocols that kept me alive for the first two years.

After all, folks who have a cancer-ridden kidney removed when the cancer has already spread to Stage 4 (as mine was) usually only have a few months to live, whereas I have survived more than two years to this date. So I must have been doing something right, and I intend to beat this thing with all the tools at my disposal. Of course I must depend upon the guidance of my loving Creator as I move forward.

Thoughts about this cancer thing

I have thought about Reginald Mitchell who designed the famous WWII fighter, the Spitfire, that conquered the Luftwaffe's famous Messerschmitt Bf109 in the Battle of Britain. The rest, as they say, is history!

Mitchell was diagnosed with cancer in 1933. Rather than take it easy at doctor's orders he threw himself into the design and prototype construction of the Spitfire. He died in June 1937. But shortly before that, he would be seen beside the aerodrome, watching prototypes of the Spitfire being put through their paces. It seems that his commitment to develop that great airplane extended his life by a two or three of years, giving him great satisfaction.

Below is some free verse, some of it original, and some of it quoted from the Bible, to talk about the fear, hope, and love aspects of cancer recovery.

This cancer thing 
(with some quotes)

Fear

“i’m surprised

you’re still alive –

you could be dead

in five

or ten

minutes”

the surgeon said

that was before i nearly died

and before i woke up

(nearly) dead

The monster within

you are sinister

a hide-and-seek now-you-see-it-now-you-don’t monster –

you are evil incarnate

you are cold grey iron – lurking – hiding

in your face there is darkness and dismay and

the cold grey eyes and pale bloodless skin of death

your hair is the colour of cremation’s fire

you wear a long black cloak – perhaps to smother each victim

neither male or female –

you are outside of time and space in this universe.

Hope

i must embrace my illness

as my best friend

who will lead me

into happiness

and joy

"there is hope of a tree
if it be cut down
that it will sprout again
and that the tender branch thereof
will not cease
though the root thereof wax old in the earth
and the stock thereof die in the ground
yet through the scent of water it will bud
and bring forth boughs" 

Love

"there is no fear in love;

but perfect love casts out fear –

fear has torment –

he that fears

is not made perfect in love"

"God has not given us

the spirit of fear –

but of power

and of love

and of a sound mind"

"a new commandment i give unto you –

that you love one another –

as i have loved you

that you also love

one another"

I am taking radiation to smash the tumours on not two, but three, locations on my spine. Two of them are at both ends, at my tailbone and at the base of my skull. the other is in the middle of my back. This latter one has given me no pain at all and without the CT scan I would have no idea there was a problem. I will be going home from Edmonton to Inuvik on January 6, 2018. The Cross Cancer Institute people are very proficient and very caring, which provides extra support and hope for the future.

The war is on against the invisible and quiet monster

I am sorry to take so long to update my story. It took 6 weeks for Cross Cancer to make treatment decisions, along with an intervention from my family doctor in Inuvik. Then on Thursday December 15 some phone calls confirmed that I would have a consult for radiation on Wednesday the 20th and radiation treatments of modest radiation strength on Dec 21 and 22, and then again after Xmas on Dec 27,28 and 29. So Sandra and I flew to Edmonton from Inuvik on Dec 17, to allow time to rest up before the radiation ordeal.

As I believe I have mentioned before, metastatic renal carcinoma does not respond well to chemotherapy, and surgery is not a good option I found after discussions with the surgeon, because of the position of the new tumours very near the L1 lumbar and theS2&S3 sacrum vertebrae with very close proximity to the spinal chord. So now I have had two radiation treatments on Dec 21 and 22, which left me woozy, tired and somewhat achy.

I also have had a new diagnostic CT Scan in my neck and head area, because of a suspicion I have about some new headaches and neck pains that should not be there. It may be my spinal cord further down telling me about things not being well down there, or it may be evidence of another tumour at the top of my spine. We shall find out this week when I talk to the oncologist at Cross Cancer again. 

Stage 4 renal carcinoma is more deadly than I originally thought. The survival rate of 8% at 5 years is for people that have had a cancerous kidney removed but with little or no metastatic growth of tumours at the time of the operation. When the cancer is at Stage 4 with metastatic growths everywhere at the time of the kidney removal the survival is usually only a few months, according to the medical information that I have been able to find. The fact that I have reached more than 2 years is still a miracle.

We came to Saskatoon the other day in our rented car to spend Christmas with Lynn and Derrick, and Sandra's sister Janice and family in North Battleford, and will wend our way back to Edmonton by tomorrow Boxing Day. The warm weather has taken a break and the temperature has dropped to -29C this morning in Saskatoon.

So my determination as 2017 draws to a close is a quotation from Winston Churchill during the dark hours of WWII:

"Success is not final, failure is not fatal: it is the courage to continue that counts."

And I continue to meditate on the importance of joy. There is a short 6-verse chapter in the book of Isaiah in the Bible, chapter 12, that I really love. It tells me how important are strength, singing, the process of becoming, and joy to bring salvation. Wishing you all comfort and joy this holiday season.

Designing a new suit of armour

We decided to cancel our wonderful 1.5 years-in-the-planning cruise on the Danube River. We were supposed to leave Inuvik tomorrow. Which means we will miss the highlight of visiting with Yvonne's parents in Stuttgart. And other things, like visiting the Holocaust memorial at Dachau. Anyway, after reading the radiology report in detail, after conferring with best friends about this, as well as the oncologist's somewhat worrying call Friday afternoon, we had to make the decision. And as a dyed-in-the-wool Scot it is heartbreaking to cancel a prepaid cruise and airfare holiday.

I believe that we have begun full awareness and treatment soon enough to beat this thing. To uncloak the monster and strike it dead.

I am humbled and joyous to read all of the good wishes that have come to me from far corners of the world: from Saudi Arabia, from UK, from USA, from Vietnam, and many places in my home and native land. I am convinced that joy is a prerequisite to healing, so let God's will be done. Joy, and what happens without it, is one focus of my 2014 poetry book Pine Cones and Small Stones: Poems for Warming in a Cold Climate. I still have several copies of the book, for which the publication was generously supported by the NWT Arts Council. My dear cousin Karen in California, who succumbed to the same renal carcinoma that I have almost two months ago, designed the cover. If you drop me a line with your mailing address at david.malcolm@mcri.ca I will gladly send you a copy.

Well, time to try another phone call to Cross Cancer Institute re my first appointment for next steps. I am hopeful that new immunotherapies will boost my immune system to destroy THE THING. Also, I have a telephone consult booked with Dr Redvers about increasing Iscador strength tomorrow afternoon at 4:15.

The answer is - no! The Stage 4 Renal Carcinoma is alive

Well, where to start, I got a rude awakening this time. The CT scan last week in Yellowknife showed for the first time that three small nodules in the lower left lobe of my lungs are slowly growing; one has grown from 6mm to 8mm. Lymph nodes in my chest have grown too, whereas they had been slowly shrinking for most of the past two years, showing that my immune system is working overtime fighting something, probably cancer. Of greater worry is that cancerous activity is apparentlty happening in the posterior region of the L1 vertebra in the lumbar region of my back and also something thought to be cancer going on at the base of the spine, where I have had some osteoarthritis in the past. No pain though. Anyway, these new developments are certainly scary.

I have a HELP request in to Dr Nicole Redvers about possibly increasing my Iscador (extract from mistletoe)strength. I am now on Series 2 whereas I could upgrade to Series 3 perhaps. Everything I read about Iscador indicates it helps to shrink tumours and make them disappear.

The good news is that the cancer is moving slowly at this point and hopefully more subject to treatment. The oncologists at Cross Cancer in Edmonton are talking about using a new immunotherapy that is not drug based to target cancer cells in tumours. This new treatment has been successful in other types of cancer. This treatment may start soon.

All this in the face of a planned trip leaving this coming Wednesday the 15^th for Munich, then by train to visit friends in Stuttgart, Germany, visit Dachau etc. Then to Budapest to start the Danube River cruise with 6 other Inuvikites for a week ending up at Nuremburg. Then back to Ottawa to visit Shauna and kids. We have one day in Edmonton on the way back, on December 05, where I could meet with Cross Cancer perhaps if required.

One of my books read this past summer was The Write Prescription: Telling Your Story to Live With and Beyond Illness, by Judith Hannon. She gave many writing exercises, including one where we were asked to write to describe the disease we were challenged with, give it a name, and talk to it like a living thing. So I did that with cancer, and here is the result, at least the part that is printable here!:

"Cancer, you are a sinister hide-and-seek now-you-see-it-now-you-don’t monster. You are evil incarnate. You are cold grey iron. Lurking. Hiding. In your face there is darkness and dismay. Your face has the cold grey eyes and pale bloodless skin of death. Your hair is the colour of cremation’s fire. You wear a long black cloak, perhaps to smother each victim. Neither male or female, you are outside of time and space in this universe."

I still believe that an attitude of gratitude with love and joy will help to defeat the thing. In the meantime I will continue to work on my cancer recovery book, which might help other cancer sufferers deal with their challenges.