Tuesday, 13 March 2018

My little caretaker!

Well, I am started on the new Pazopanib chemo. It disturbs my sleep at night but anyway I love napping during the day, so problem solved. I just looked up the medication in OncoLink which is a good thing because I found I should not take the pills within an hour before food or within two hours after a meal.

We now have a companion for me a little shihtzu pooch by the name of Hagar. He is probably 3 years old or thereabouts, and a rescue dog from Sachs Harbour, afraid of everything and everybody. He arrived skin and bones but is now thriving on dog food for small dogs with a bit of olive oil to tickle his tastebuds.

Hagar you say? Yes, when he came to us he really looked quite horrible like Hagar the Horrible - he was so shaggy and hair coming out in clumps. But he now has a haircut and Here is his debut photo.

A few years ago in Yellowknife we had a shihtzu  by the name of Fluffy that we co-owned. She never left my side when I was getting my new titanium hips in 2012 and 2013. So the idea now is that wee Hagar can fill that companionship spot. I should have named him Shadow because he follows me everywhere. But he is the first dog ever we've had that hates car rides. He is now "nearly" house-trained, and is leash trained. So as I cope with the chemo on a daily basis Hagar will interrupt any tendency toward depression. I look forward to longer walks with this little friend when the weather turns to spring.

Sunday, 11 March 2018

Still getting over a chest condition before the new chemo

Unfortunately, the Sutent knocked me out so badly, along with the nasty nausea drugs, that I ended up in Emergency one night with a full-blown panic attack. Also, my immune system was compromised, so the first contact I had with someone else's flu, down I went! I am not going to start the new chemo for a day or two yet.

I felt so sick I could understand Job's feelings in the Bible where he was so ill that he wished he had never been born. Also like Elijah when he was fleeing for his life, fed by ravens, just wanted to die, for God to take his life away. I have to admit I went through such thoughts that night on the way to the ER at Inuvik hospital.

However, sick as I was, something kind of miraculous happened in that my one kidney began to work almost normally, with my creatinine dropping into the normal range for 10 days.

I do want to start the new chemo asap though so that the tumours continue to shrink and hopefully the cancer goes into remission once again. Now that I am returning to normal, the depression has lifted again. I am taking more interest in things around me, writing poetry, practicing my harmonica, etc. I just finished a bit of engineering work for an engineering company doing a feasibility study of a wind energy project in Norman Wells. "The Wells" is in oil country but the supply is dwindling so new electricity sources are hoped for.

All for now folks. I have a new experience with an oncology doctor on the 19th of March. I go to the tele-health room at the hospital here in Inuvik and talk to a Cross Cancer oncologist by video-conferencing. So I need to prepare for that with new blood tests etc. Then I go to Yellowknife again for a CT and another consult with Dr John Walker April 9.

Saturday, 24 February 2018

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.

Thursday, 25 January 2018

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

Wednesday, 17 January 2018

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.

Thursday, 28 December 2017

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)


“i’m surprised
you’re still alive –
you could be dead
in five
or ten
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.

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" 

"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.

Monday, 25 December 2017

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.