A Treatment Respite

The five weeks away were great. The drive back from Edmonton was very difficult though. For the first time ever it took us four full days to drive from Edmonton to Inuvik, leaving Edmonton the afternoon of August 14. The Dempster Highway was the worst we have every seen it in the past 20 years with almost all of the bad stuff on the Yukon side of the border. It was raining continuously, and at times the holes were so bad that we crept along at 10 to 15 km/hr. The holes stretched from one shoulder to the other so could not be avoided.

Our traveling roles were reversed throughout our summer, with Sandra doing most of the driving and me reading maps and using Google Maps on my phone. Back then the chemo side effects were still so bad for me that driving was very tiring.

Now back to Inuvik, with the first snow today, September 01, and temperatures hovering around 0C.

The blood tests on the morning of August 20, just before leaving for Yellowknife and a CT Scan on the 21st, showed that my one remaining kidney has regained most of its healthy function. The blood work looks good.

My CT scan on August 21 showed that the entire treatment scenario has been effective. It was done with intravenous contrast, so that everything could be observed in detail. There are no new tumours. One small nodule in the lower part of my left lung is stable as are the tumours on my spine. No tumour growth evident at all. And the enlarged cancerous lymph nodes in my upper chest have all shrunk dramatically for the first time since my cancer operation away back at the end of 2015.

So Dr Walker my oncologist is very pleased with the results and is leaving my off any more treatments until after the next CT Scan in early to mid October, about six weeks time. If that CT Scan still shows stability there will be no more treatment for the time being.

Most chemo side effects have dissipated, except for "chemo-brain", which means that my memory still has lapses that didn't used to happen. Fortunately I can drive again very effectively. I am still tired a lot of the time and need more sleep than usual, and my muscles are not as strong as they were.

I am in far better shape than a couple of months ago, when I had to be in a wheelchair just to get from an air terminal to the aircraft and vice versa.

I must get writing again, which will help my brain function return to normal. I am finding that very difficult, because my old creative urges have not returned.

Radical Remission

Sorry for the long silence. The side effects of chemo and treatment continue. I think the immunotherapy does have one side effect of making me very tired most of the time. I have now had 6 treatments, every two to three weeks, and with the oncologist's permission, taking a break until August 20 when I will have a CT scan to determine if the three tumours on my spine have receded, and whether continued immunotherapy treatments are necessary.

Most of the time since my last entry I have felt nausea, and no appetite. I have been eating enough purposely to keep my weight constant, but do have problems feeling flu symptoms from time to time. So when I consider the mind-body-emotion-spirit continuum of healing I haven't been able to do much on the mind-emotion-spirit side of things.

I am reading a wonderful book on cancer survivors who have chosen alternative medicine over traditional western medical treatment (radiation, chemo, immunotherapy). I can see my own experience echoed here over and over. Here is the reference: Radical Remission: surviving cancer against all odds, Turner, Kelly A., HarperCollins (2015).

Kelly emphasises the following "9 key factors that can make a real difference:"

• Radically changing your diet
• Taking control of your health
• Following your intuition
• Using herbs and supplements
• Releasing suppressed emotions
• Increasing positive emotions
• Embracing social support
• Deepening your spiritual connection
• Having strong reasons for living

The only one of these that I have not utilised is "using herbs and supplements." I believe that I can get excellent nutrition from real ordinary food as the first bullet stipulates.

The two factors following emotions are the ones that I need to work hardest on, but I haven't got to those chapters in the book yet. By the time of my next entry I will have finished the book.

Sandra and I are travelling, starting off on Cortes Island, BC, where Sandra is taking a week of training, in this quiet paradise known as Hollyhock. Then next week we will spend with Bob and Sharon Cook in Warren, Illinois. Then on to Seneca, IL for our annual Christian convention, four days of peace and rest.

So goodbye until next time. All for now.

Poetry keeps me going!

That second targeted chemo, also called Votrient, seemed benign while I was on it but after I stopped, the side effects became the most horrendous chemo hangover imaginable. I did reach the frame of mind that I wanted to die. Now I am on immunotherapy, a third really benign IV-administered drug every 2 to 3 weeks that truly has minimum side effects called Nivolumab.

I am in Vancouver today, just vegging while Sandra goes to her last day of narrative therapy. Tomorrow we fly to LA, rent a car and wend our way to Buttonwillow, CA for one of our Christian conventions. We were there in 2013 and enjoyed it so much we wanted to go back.

Now, I wanted to say how important writing poetry is to me. I often write short poems to improve my outlook on life, and help with my cancer recovery. For me poetry is a big part of the mind-emotion-body-spirit continuum of healing. It feeds the mind, emotion, and spirit quadrants, counteracting any negative body aspects as a result of chemo cancer treatment. 

You know about my 2014 poetry book Pine Cones and Small Stones. And I have written dozens of poems since then. What you may not know is that 20 years ago I was given an Indian name by a Cree medicine woman White Elk Woman. She dreamt that a man named Warrior Poet would help her record her childhood dreams. So here is my poem with the same title:

Warrior Poet
Have you seen him come?Quiet shadow formed through river mist


His white steed treading softly on the mossy bank
Have you felt his presence?
In the stillness and cool breath of morning
His palms held out to you in friendship
Then, did you see him go?
Fading into the forest glade ---
A sense of joy and serenity
Lingers there

White Elk Woman was an artist then too and gave me a painting, a self portrait. And I will close this blog update by posting a photo of that self portrait. Here it is:

 

So there you have it. I really hope that my cancer recovery continues in the right direction. My oncologist says that the new immunotherapy should put my cancer into remission after a few IV treatments. My next one is on May 23.

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.

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.

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