An unexpected Urinary Tract Infection infection nearly brings life to an end

 The week of July 12 will be indelibly recorded in memory. Not my memory you understand. I have just been talking to Anne and Sandra to understand the sequence of events - because my memory of the way things happened leaves much just hanging. I don't know if it is the drugs or the side effects of the infection, but my memory now is much worse than it was before July 12.  

Unknown to Sandra and me, I was developing a bladder infection. We had pizza with a friend on the evening of Friday, July 10. Right in the middle of supper, after only one piece of pizza, I wasn't feeling well. I went to the bathroom and began to pass out. I was shortly taken by ambulance to Inuvik Hospital.

The bladder infection very soon started to get worse and I began to go into shock, rapidly affecting my cardio-vascular system, and my blood pressure continued to drop, to the point where the Inuvik Regional Hospital kindly requested my family to come, because I was dying. 

Sandra called my daughter Anne in Vietnam and told her what was happening; Anne decided to come home, and she arrived here in Inuvik on July 23. I was getting better, and she drove by the hospital so that I could give her a wave at the window of my hospital room. I was in recovery by then, and I was shortly able to be discharged. Anne and her friend Laura have kept me company from time to time, when they are available,

Life since then has been ok, but I have not been feeling well really. I am on a lot of drugs just to keep me going. Home Care drops in twice a day while Sandra is at work to make sure that I am all right. 

Well folks, I will let this do for now. Except to mention that I am to be put on another drug to bring about better pain control. My pain is greater than can be completely eliminated by the present prescription. So there we are.

Cancer has been foiled agaiin - by one pain drug

((Back to a new normal. I am on one drug after a few days, and the patches have been removed.))

Can you believe it? I wrote the above short sentence on May 28, three weeks ago. The one drug in question was Hydromorphone 2mg. Now - guess what!! I am now three weeks later on 6 drugs. That my friends is my new normal!! Six drugs in varied proportions at different times of the day. Here is the list:

Synthroid 50mcg - once a day, first thing in the morning; the purpose is to strengthen my thyroid
Dexamethasone - 4mg at 0800 (to give me an early feel good energy kick (and it's working!! Although it is an odd feeling to feel like you are on a high first thing in the morning))
Pregabalin - 75mg three times a day (for shingles pain on the left side, that I contacted more than a year ago as a side effect of the fateful radiation and chemotherapy (chemo for short)
Hydromorphone - 2mg - four (4) times a day - morning, noon, evening, bedtime (AND as a breakthrough, sometimes, like early morning, say 0300, when the pain has spiked for some unknown reason
Hydromorph contin - 9mg - slow acting (45 mg total - three times a day - morning 18mg, evening 18mg, late evening 9 mg)
Hydromorph contin - 3mg - slow acting (6 mg total - twice a day - morning 3mg, evening 3mg)

So there you have it.

Pain is vastly under control. My brain works again; Sometimes I was actually screaming in pain. Sandra will attest to that, and that I could not think past basic human needs like eating, sleeping, and going to the bathroom.

Now speaking of the bathroom. First of all, I will be on a catheter for the rest of my life. That is very likely since it is generally agreed that the risks involved in the known prostate operations are equal to or greater than leaving me on the catheter as status quo. 

Now, I'm thinking of some expressions that are going to have to change in my household. Apparently "hang on to your shorts" is a time-warp of "hang on to your hat." Since "hang on to your shorts" isn't kinda appropriate to the Arctic, and "hang on to your hat" is archaic - It goes back to the days when men wore hats, that's according to Mr Google - So here goes - in that same vane of "here goes nothin nowhere" I propose "grab your catheter" as an appropriate expletive or saying when quick action is recommended in the Malcolm household!

Another thing I have to do for the rest of my life besides wear a catheter. I have to have immunotherapy for the rest of my life too, which is an IV treatment of Nivolumab, a drug that came on to the market in 2018, i.e., quite recently. The guy who developed the basic premise for using drugs like Nivolumab to target and kill cancer cells got the Nobel Prize for medicine in 2018, only two years ago. This is where my immune system is trained to target cancer cells and kill them, leaving normal cells alone. For example, on July 7 of this year I will fly to Yellowknife to take an IV treatment of Nivolumab, and every month after that.

I hear you asking "why aren't you taking Nivolumab in Inuvik?"- and I can say that the same question is being asked at the Stanton Hospital in Yellowknife.

That's it for now folks.

Unexpected pain increase - cancer is a fickle companion

Hello from Yellowknife. This week I have met with an urologist who has agreed that I have an enlarged prostate that is hindering urination. So on Wednesday I had lighted scopes put through my urethra to view my bladder wall and my prostate, literally all in living color. I could see the enlarged prostate and the inflamed wall of my bladder where the catheter has rubbed against it, probably the source of blood in my urine from time to time, as seen in the urine bags strapped to me. 

So I am still wearing the bags until further notice - meaning that Dr Sarah Cook (rather than Dr Mansouri) will consult with the urological surgeons in Edmonton to see what must be done. Personally I hope that they decide to remove my prostate altogether.

Now the key problem though is that my pain has increased exponentially since my last blog. I mentioned being down to two pills a day. Well now I am up to two pills every three hours and only barely holding the pain in check. Sometimes I have to take an extra pill or two in between regular three hour marks. Tuesday night this week my pain was absolutely incredible, and I actually screamed a couple of times during the night. The pain would cycle between 8 and 10 out of 10 in my Sacrum area with pain shooting down the outside of both legs. And with an added extreme jab like sticking a knife in me from time to time if I moved just the wrong way, and the wrong way kept changing from time to time! That night I only got three or four hours of sleep. I actually thought of Jesus on the cross, and for the first time in my life I felt that I understood his physical pain before he died.

So the upshot of that is that I have had new patches prescribed. My normal weekly patch change is Saturday, but now with the new fentanyl patches I have to remove the old patch, wait 12 hours for the old opoid drug to wear off, then put the fentanyl patch on and wait another up to 12 hours for the pain relief to take effect. So my family doctor Dr. Robson has the ER at Inuvik Hospital all ready to receive me tomorrow afternoon after our return to Inuvik from Yellowknife. So I will stay in Hospital so that the nurses can monitor my pain which will likely go through the roof during the 20 hours or so before the new patch takes effect.

The moral  of this story is that cancer is fickle, and always finds a way to keep up its attack. The doctors here at Yellowknife Stanton Hospital in the urology unit believe that my enlarged prostate could have something to do with the pain increase. How could this be? Well the tumor is at the S1/S2 position, and at the S2/S3 right near by are the nerves that interact with the bladder and prostate. So, those nerves might be now cozying up to the tumor and further exacerbating the pain situation.

So whereas I am planning on a fairly long future on this earth, there is no telling how accurate my forecast may be. The tumors could decide to start growing again. However, Sandra is very hopeful that going to a vegan diet will reduce all inflammation and actually shrink the tumors. So that is our next little experiment. 

So on that encouraging note, good night folks.

Hello my friend, hello!

I often think of Neil Diamonds song with the line Hello my friend, hello. It comes back to me very often so that is my title today.

Hurray for remission! Somehow I feel different about this remission. The fact that there has been no tumor growth in three months has been very encouraging. However, there is some fear that continuing monthly immunotherapy is absolutely necessary for continued good health.

My oncologist, Dr Mansouri in Yellowknife, believes that my Nivolumab immunotherapy every month is more important than the COVID 19 risk of travel Inuvik to Yellowknife for treatment. And its interesting that we now have flights to and from Yellowknife only twice a week because of COVID 19, instead of the usual seven days a week! So I may have some difficulty arranging my treatments down the road. My next treatment, including a special appointment with an urologist to determine what is to be done about my bladder blockage and swollen prostate, will be in early to mid May.

Actually, living with the catheter and urine bags strapped to my leg has turned out to be completely manageable. And the fact that I only need to take a pain pill twice a day is just great. I certainly don't look forward to a prostate operation but if that keeps the pain away and returns normal urinary function it will be just fine in the end.

I have been frustrated that my brain doesn't work well at all for the first half of every day, but --- I have written three poems since April 10. Writing poetry again is my sign of improved cognitive function overall. 

My 2014 poetry book Pine Cones and Small Stones had 108 pages, and I have written at least another book's worth of poems since then. But instead of publishing them in book form I am thinking of submitting a few of them to poetry publishing sites and competitions. I have two poems published now, one air combat poem Fear is a Ghost in the Night Sky at the British war poetry site, http://www.poetsandwar.c om/fear-is-a-ghost-in-the-night-sky/ and my cancer poem A Journey in the League of Canadian Poets publication 

http://poets.ca/2020/01/13/fresh-voices-19/  

Falling into poetry - finding a new world

I have recently discovered Caroline Kaufman's new poetry book entitled when the world didn't end, and I can really relate to this girl who has suffered from depression. I feel that I truly fell into her words, like Alice falling down the rabbit hole in Alice in Wonderland to find a strange new world. And through poetry, hers and my own included, I am finding a new world, where I can be happy and whole. 

On page 78 of Caroline's book I quote: I am surprised I am still alive, but I am grateful for it. That sums up my feelings exactly.

And I love this verse from Caroline's book on page 172:

every minute I have on this earth

is borrowed time.

I fought for it,

almost died for it,

and won it back

That describes my cancer experience exactly. I fought to stay alive in December 2015 when I was operated on, and it is true that I almost died but I did win my life back. Now going on 4 1/2 years later I am still living on borrowed time. But the cancer is in remission and with my bladder problems looked after, my pain is truly under control.

I want to emphasize that my recovery follows the path of Radical Remission as Kelly A Turner's book describes. Now, what is left to do is shrink the three tumors on my spine. And through Bruce Lipton's The Biology of Belief whereby through belief I can do healing wonders in my body, including shrinking of tumors. Lipton quotes Henry Ford's famous line on page 112 of his book: If you believe you can, or if you believe you can't -- you're right.

I recently purchased a neat book entitled Naturopathic Oncology: An Encyclopedic Guide for Patients & Physicians. In this book I find plenty of support for what I am doing to heal, particularly with regard to mistletoe subcutaneous injections which prime the immune system to work against cancer cells, and with regard to curcumin which reduces inflammation, and hence works against the impact of inflammation in encouraging cancer cells to thrive and grow. The book has two pages, 410 - 411, devoted to RCC, Renal clear Cell Carcinoma. It mentions that only 62% survive kidney cancer for five years. So it looks like I am in the 38% that go on living!

By the way, I should have said in my last post that one reason for my trip to Yellowknife last week was to take a CT scan of my sacrum area. That was done and the CT showed no growth of the sacrum tumor. So I am definitely still in remission, and looking forward to my new world of thriving in recovery by shrinking the tumors and getting on with life. I can then be considered as "cancer free"!!

The winter of my discontent

"The winter of our discontent" was made noteworthy and kind of famous, first by William Shakespeare and then by John Steinback. This is the winter of my discontent too. As I write I am down from Inuvik to Yellowknife for my monthly Nivo immunotherapy.

Today, April 09, it is snowing in Yellowknife, and I am wearing a urine bag and a catheter. So, in fact, I would call this the winter of my soul. Life has become cold and listless. Perhaps by writing here I can get my mind and emotions back on track. The catheterization came about because I guess for years I have not been able to empty my bladder and the pressure of the full bladder all the time was in fact causing the severe pain in the tumor on my sacrum. Now I only have to take a pain pill once or twice a day. Sandra is hoping, by us switching to a totally non-inflammatory diet, essentially a vegan diet, I can shrink the three tumors on my spine. So, fewer hydromorthine pain pills and I bet my brain will clear and I will be more like my old self.

Well, now the next day April 10, the sun is shining in a bright blue sky here in Yellowknife, and my optimism is certainly coming back. And it was so good to get a good night's sleep now that the bladder problems have disappeared.

I hope I am not repeating myself here. I am in a highest risk category for COVID 19, being Stage 4 cancer with a compromised immune system and 79+ years of age, and so Sandra and I stay completely at home these days. Our friend Chris in Inuvik gets our groceries, mail, and drug store stuff. One scary thing is that there are only 3 ventilators at Inuvik hospital and I am not top priority to receive one because of my Stage 4 cancer and age. So I have to really take personal care to stay alive.

Back to Inuvik tomorrow. I will send my next post from home.

The COVID 19 epidemic continues to rise - FAST

Happy Thursday. Our self isolation ended last Sunday. We tried to take a drive to Tuk on Sunday, but the road was closed to normal traffic when we wanted to go.

Well, we now have one COVID 19 case in Inuvik, but that person is self-isolating so no spread here. However, I am taking much more precautions. I am not going to go out, except in car. At 79 and counting, with a compromised immune system due to cancer, chemo, and pain drugs, I am a prime candidate for testing positive to the virus and dying of pneumonia.

Country-wide, according to today's New York Times, Canada has only 109 deaths, doubling every 4 days. the US on the other hand has 5,708 deaths, doubling every 3 days. We intend to tell our Illinois friends to be more careful because the state of Illinois already has 152 deaths, doubling every 2 days! Note that Illinois has almost 50% more deaths than the country of Canada. People in the US really don't want to stay home. I think it was California that hasn't even closed it's public beaches. The NY Times showed a beach really quite well populated.

I have great news! Great for me anyway. I have been on the board of a high tech company in the nuclear industry for the past about 15 years. The day before yesterday my phone rang late morning and it was the board Chair of that company. He offered me a contract (accepted of course) to tackle an engineering problem related to his company's power plant design. Why me? Because we have developed considerable trust over the years. And he hired me knowing that my short-term memory and some cognitive ability has suffered because of chemo and pain drugs. So I am quite delighted.

My required engineering texts are in a rented storage unit in Yellowknife, and they are all 40 or more years out of date. So I bought 2 books through Indigo-Chapters on line. One of them has already shipped, on Engineering Mathematics, but it is not the one I need the most, on Thermodynamics and Fluid Flow Dynamics as applied to power systems. My specialties in engineering have always been thermodynamics (the study of thermal energy in all its forms) and fluid mechanics (looking at how fluids, liquids or gases, flow in systems we use every day or in power plants).

I would like to think that this pandemic will bring people together in a helpful community-oriented way in the western world. However I was disappointed to learn, again from today's NY Times online that last month, March 2020, resulted in the second-highest month every for personal gun sales in the US. That doesn't bode for being helpful and community-oriented! Also, Dr Anthony Fauci, President Trump's medical adviser is getting death-threats. It is amazing that there are folks in the US, the fastest growing country for COVID 19 cases, who simply want everyone back to work to kick-start the economic engine, regardless of the threat to human health.

A good friend of mine is of the opinion that this pandemic will bring about a reset to society in the western world. It seems to me that it is really a boon for communication industries, since whole conferences are now planned using Zoom-related technology.