Update on Renal Cell Carcinoma from Warren Illinois

Well, it has been a while. I am at the community Library in Warren Illinois where we are visiting our dear friends Bob and Sharon Cook. They don't have internet so this is my chance to catch up on my communications.

As the previous post indicated cancer has raised its ugly head again. The lowest of the three tumours on my spine, in the sacrum area on the left side, is growing at an alarming rate. I will be in Edmonton at the Cross Cancer Institute Aug 27 for a radiation consult. And I have an immunotherapy session scheduled for Sept 6.

There has been a lot of pain this time around. Trying to control it with various pain meds. Apparently the radiation will release the pain.

Good news is that the tumour at the top of my spine at the base of my skull has shrunk.

I am still very hopeful that the radiation/immunotherapy combo will put me back into remission.

I will keep you updated. Here below is a little haiku poem I have written about this nasty turn of events. It sounds pretty dark because I am somewhat upset you might say at the turn of events, but of course never without hope:

Death Row

Waiting for the ax

To fall – Cancer hides and slinks

Just behind the door

Cancer raises its ugly head again!

Hello again.

The previous post told our pooch Hagar's story of maybe wanting to drink because we left him precipitously last Thursday about noon to fly to Yellowknife.

Here's how it all happened.

On Wednesday July the 10th I was awakened at 04:30 with a severe pain down at the bottom of my spinal cord on the left side (sacrum area). I knew that it was at or near one of the three tumours on my spinal cord that had gone into remission one year ago at the completion of six intravenous immunotherapy treatments of Nivolumab, July 19, 2018.

I immediately phoned Dr John Walker's office to find that he would not be in Yellowknife in July but Dr Zhu would be, this week in fact. Then Thursday morning at 09:20 I received a call from the Cancer Coordinator in Yellowknife telling me the next day at 09:45 I was to have a CT Scan at the Stanton Territorial Hospital in Yellowknife. That meant we had to leave that day, Thursday, by 737 to fly to Yellowknife. It took an hour or so to alert Sandra who immediately came home and we packed and took a cab to the airport, leaving poor little Hagar our pooch totally confused about how life was unfolding (so were we!).

The CT Scan was carried out uneventfully on Friday morning. Then we waited all weekend, waiting for our appointment with Dr Zhu on Monday the 15th at 10:30 to review the CT results (working very hard on Saturday emptying one of our two storage units by taking a load to the dump with friend Bill's help, taking some clothing and toys to a second-hand store, and packing another suitcase to bring back), AND doing meetings and a barbecue Sunday afternoon out at Reid Lake at the Pikes campground.

On Monday Dr Zhu gave us the news we did not want to hear. The tumour attached to my sacrum at the bottom of the spinal cord was indeed growing again, however slowly. We will be allowed to take our vacation in August, but I must begin immunotherapy injections asap.

I just found out this aft that I will be getting the Nivolumab injections in Yellowknife at Stanton Hospital, not in Edmonton at Cross Cancer as we wanted to. That means that Sandra has to take 2 1/2 to 3 1/2 days off work every treatment. She must come as my escort because of my deafness AND now because my memory is so spotty because of chemo-brain.

More later as the saga of davidisstillalive continues! Stay tuned.

Doggone insurance against the next drink!

Hello folks! I am so sorry that it has taken so long. I will have another health-related post shortly but can't resist to send this one.

Now, you may know about our little sort-of shihtzu named Hagar. He is a sober dog - he hasn't been drunk as long as we have known him ( 1 1/2 years now).

 
Whenever we have gone away before we have taken him to a willing dog-sitter before taking off on our travels. However, for reasons that will be outlined in my next post later today we had to leave for the airport abruptly last Thursday about noon - a frenzy of packing for both Sandra and I and no time to take Hagar to a sitter - just a phone call to our friend Barb next door who came over a few hours later to pick him up.
Hagar was very confused by the whole ordeal. He was very anxious as we both packed and then left him alone in the house as we headed by cab to the airport. He had his food and water but no understanding of where we had gone. I think this almost drove him to drink.

Hagar has never left our yard by a distance of greater than a yard-width before. He is a home body but he is used to being at Barb's place. However, not knowing where we had gone, one day (Monday the 16th, a day late for an AA meeting) he decided to take things into his own hands (-- i.e. paws). When he was let out to "do his business" on Monday by Barb's grandson, he decided to go find us. He started off going to the hardware store. Nope, we weren't there. Then he made his way across a big vacant lot, under a big utilidor and over to the sidewalk along Mackenzie Road. There he was spied and identified but refused to go to just any old stranger!

So Hagar headed for the Anglican Church, where we have often taken him with us to AA meetings Friday and Sunday evenings. He climbed the steps and sat there. Presumably he so wanted to drink by this time that he felt he needed a meeting. Or that we would miraculously appear so that we could all be a family again. He felt safe there, so when one of Barb's friends Arlene Hanson saw him there he allowed her to pick him up and take him back to Barbs here on Franklin Road.

Long story short Hagar is still sober.

A bit sad today

Spring is trying to spring. We have a slow melt this spring of 2019. But that is good, because with more snow than usual we won't have flooding. The snow can slowly melt and soak away in the soil rather than running off into the Mackenzie River.

I am a bit sad today because on the early morning of May 4 a loving 37 year-old mom, wife, and popular author died from a severe and progressive bacterial infection that ran out of control. Her name is Rachel Held Evans and you can see her Facebook page at https://www.facebook.com/rachelheldevans.page/. Rachel spoke out against judgemental and abusive evangelicalism. She knew her Bible well and had a fair understanding of truth. She was a firebrand out there in the world.

To honour her memory here in my blog I have written a 17 syllable haiku:

The Passing

Young, vibrant, taken
Snatched quickly from this earth
Loving voice silenced

This sobering event reminds me that: 

We are each one grain in the sands of time.

We each have only a few years, a small part of eternity, to prepare for a hoped-for everlasting life with our Father, our God, our Creator.

So I must hang on to joy. I never forget the prophet Joel, who talked about joy in the first chapter of his book: "All the trees of the field are withered: because joy is withered away from the sons of men." That means no joy, no fruit. Joy is very important in my life.

So I wish you all a joyful week this fine spring day.

Deauville Hotel near the Fort Lauderdale beach and a plane crash

Well, here we are in Fort Lauderdale on vacation. We arrived at our hotel Wednesday February 27 about 02:00. The plane arrived at midnight.  And today March 4, is Sandra's nth birthday (n=an even number that shall not be named). We are going out for a lobster supper at The Capital Grille on East Sunrise Blvd. Reservation at 18:00 to celebrate!

We have taken many long walks, 10km (6.2 mi) or so once or twice a day. Lots of sun. our Deauville Hotel has a pool and is very comfortable to sit and snooze or read.

On Friday March 1 we witnessed a plane crash. Only the pilot was killed which was a miracle. Shortly before 12 noon we were sitting reading by the pool. We heard a small plane approaching. It was a bright yellow Piper PA25, similar to the single-passenger crop dusters we see on the prairies. I saw it pass low and slow nearly overhead, wobbling as though it was near a drop-out-of-the-sky aerodynamic stall. It banked left into the wind, towing a banner, and cleared the power lines. I saw the pilot, with his cockpit windows pulled back, trying to control the aircraft. I don't know why he did not increase to full power. As a pilot I keep wondering what really happened. Anyway, about four seconds later there was a tremendous bang and then a deadly silence. The plane had stuck the concrete wall of a condo building around the 16th floor level and the wreckage then fell to the pool deck, which was under construction. It was an absolute miracle that no-one else was injured and there was no fire. The pilot was 28-years old, building hours to get his commercial license.

I keep wonder why!! I think he was having mechanical problems because the engine was not opened to full throttle to full power. To me it seemed he was only at about 25% power when he passed overhead. If he knew he was going down and was having engine trouble, then may be he was a hero because he did everything he could to clear the power lines. If he had turned the other direction, downwind, his airspeed was so low that he would have stalled and dropped out of the sky on top of beach sunbathers. 

On the other hand maybe it was suicide and he was purposely choosing his target so as to not kill anyone else. Otherwise why did he hit the concrete (not a window) in the middle of a 50-foot  (17-metre) wide building rather than flying around it. Now we will never know. Some say that his banner snagged on something and that caused the problem. No-one really knows.

We are here in Fort Lauderdale until this Friday March 8. Then we fly to Toronto, and on to Ottawa on Saturday. We will stay at our friend Victoria's condo, and visit Shauna and the three boys in Ottawa. On Wednesday the 13th we wend our way back west. Sandra arrives home to Inuvik on Friday the 15th. I make a detour to Regina to visit Anne who is home from Viet Nam, and to Saskatoon to visit Lynn and Derrick as well as Don Shenton, and maybe an old high school buddy, another Don S. I don't get back to Inuvik until March 21.

Well there you are. That will do for today. At 4:30 we will leave the hotel for our three mile walk to the restaurant.

The sun returns!

Sorry for the long silence. The sun touched the horizon again about January 6 and now the days are lengthening. The weather continues to do strange things though. Day before yesterday it got up to -2C, almost melting, and 30 hours later it was -32C! And snowstorms and blizzards every week. The weather used to be so calm in the winter here in Inuvik over 20 years ago when Sandra and I were here before.

I was worried in early December that my cancer was coming back. I had some prickly numbness in my left hip and thigh, which reminded me of the only symptoms I had when cancer was first discovered. That is the way cancer survival is - every little twinge or pain causes alarm! Anyway I was able to get CT scans of my neck and back in Yellowknife at Stanton Hospital on 19th December, 2018. Then no word whatsoever as to the results!! -- Until I was able to go back to Yellowknife for an appointment with Dr John Walker from the Cross Cancer Institute in Edmonton on January 4. At which time he informed me that my cancer was still in complete remission, that the three tumours on my spine (base of neck, lumbar, and sacrum) were all inactive and completely stable. He also pointed out that the immunotherapy treatments that ended on July 19, 2018 were still effective, because the lymphocytes are trained by the immunotherapy so that when new cells are produced even after therapy ceases they still attack cancer cells. The long and the short of it, my recovery is so stable that the doc doesn't want to see me for at least 6 months, maybe September or around there.

But what a weekend that was, leading up to Monday February 4. The temperature was in the minus thirties when we arrived Friday evening, an hour late (which come to think of it is right on time for Canadian North!). The  1986Toyota started without being plugged in, with a bit of coaxing though. Next hurdle - the Stanton Suites hotel had lost my reservation for Friday and Saturday which kinda bummed us out. They still had room fortunately. The next hurdle was that we met Annelies and Bill and Brad for supper at Coyotes and the restaurant promptly lost my food order - and no I'm sorry or reduction of the bill. Do you think we will ever go back there? I DON'T THINK SO!

Then the temperature plummeted to -41 that night and I neglected to plug the car in. It would not start the next morning. And the Alberta Motor Association never did show up to help us (we are cancelling our membership!). Our good friend Anson came and boosted us and the Toyota finally started. I did have to cancel my haircut with Aileen at Vixen Hair Den at 10:30 that morning because of the car starting problem.After a lunch with Anson we continued on our day's activities. And oh yes, the Monkey Tree bar lost our lunch order so lunch was a bit longer that usual! But guess what, they gave us a free lunch. We will go back there, but never again to Coyotes.

So silly me. I think I made a rash vow to finish a draft of my cancer recovery book by the end of December. Nope! Never happened. I am back writing now though - but I have decided to concentrate on my memoirs. Sounds boring doesn't it? But memoirs don't have to be boring I recently finished reading the memoir of Tara Westover entitled Educated, where Tara recounts her journey from an isolated childhood late in the 1990s filled with life-threatening family violence and no schooling to eventually getting a PhD at Cambridge in the UK in 2014. Now my life isn't that exciting, but I did go from an only child on a tiny farm in Saskatchewan, born on Battle of Britain Day in September 1940, struggling with deafness and other challenges, to get my PhD in Engineering Science at the University of Warwick in the late 1980s. I did spend some time at Cambridge during those years, at the same time as Stephen Hawking, although I never met him there.

A few years ago I began writing down anecdotes of things that happened in my life. So now I have plenty to work with to write about in a memoir, which will of course include my cancer recovery story. We are fortunate here in Inuvik to have a cancer recovery circle that tries to meet once a month so that we can share our stories of hope with others who are cancer patients or family of cancer survivors.

Well that is enough for now. It is 4:20 PM and in a few minutes I will head out to pick up a Valentine's Day card for Sandra. The temperature is down around -28C but the wind has finally died down. It was intensely cold last night with a howling wind and the temperature in the -20s. I have a sneaking suspicion that Chinese food is on the menu for super tonight. And then we are spending time with Bob and Sharon in Illinois by telephone at 6:30 PM. Talking weather and politics (Trumpism and Trudeauism) followed by a Bible study. We love our twice weekly talks with them.

AND, I must not forget our 24th wedding anniversary is coming up later this week on February 17.

Best wishes to all.

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.