Cancer and Christmas memories

Christmas for many, is not the happiest of holidays, whatever the reason. It can be full of stress, maybe due to expectations unfulfilled, family/friends dissension, too much commercialism and so on. For me I want Christmas to be a warm and fun filled time but the many years of my own dysfunctional divorced family of long ago must bring back memories that worry me. Even after we had started our own family, I found Christmas difficult.

Moving to Saudi Arabia in 1991 changed all that. Our 17 Christmases in Saudi were so much easier~~at least for me. We still had all the trimmings of Christmas with lights, a plastic tree with decorations but the crass commercialization was not there.  The most memorable Christmases of all were those spent camping in the Rub al Khali desert, also often called the Empty Quarter. None of us will ever forget those times; usually with 4 families including all the kids we would head out in a caravan for the long drive south. We would pitch a temporary camp just a few hours north of the big desert and early the next morning, the excitement would begin, as we let air out of our tires to head right into the desert. Finding the perfect campsite was always a big point of discussion often by radio as we spread out through the massive dunes. Once there, we would set up our encampment which would be home base for the next few days.

Our last big family trip to the Rub was in 2005/6 and it may be the most memorable. For one thing, it was the last time expatriates were allowed to enter the desert~~this seemingly due to the tension on the Yemen border. There was never a clear answer but we were blessed to have been able to camp that year. We were stopped by the desert police just before our entry point but they just wanted to take down our license plate numbers and we were free to go. We had departed Dhahran very early on Boxing Day; our family of 5, Dean and Marie French and their two boys, Wayne and Anne Smith and their two boys, and Lorne and Linda Stefan and their son and daughter. The Smiths were the only newcomers and for all of us old hat Rub campers it was special to introduce another family to the wonders of the Rub. Though we did not know it at the time, for our wonderful friend, Linda Stefan, this would be her last camping trip. Linda sported her bald head just as mine is now. Linda was doing chemo for her metasticized breast cancer, yet she did not let it stop her from from entering into all our desert adventures. She had a lot of hip pain but still searched for arrowheads, played games and showed her strength through her indomitable spirit. It was a magical time as we ranged across the desert, swooped down the huge dunes on sand boards or even in our vehicles, always a heart stopper for me. We found countless arrowheads and other ancient artifacts, ate amazing meals accompanied by excellent homemade wine. Our evenings always meant a big fire but if you stepped away from the light of the fire, the array of stars was amazing. The Rub is one of the few places left in the world where you are completely away from all noise and light from civilization.

And so it was that we returned to Canada in December of 2008. Dick had managed to get 3 extensions past the mandatory retirement age but finally we had to leave. In retrospect, it was a crazy time to come home; it was the coldest and snowiest winter in decades for Vancouver and Christmas was just OK as I started the reverse culture shock of re-entry.

Now it is 2012 and I am so looking forward to Christmas. For the past two days I have been running a worrisome fever with some accompanying aches and pains. Basically the help line doctor at the cancer agency suggested I tough it out and that seems to be working as the fever is down almost to normal and I am feeling better. Our old friends the Trayners arrive tonight and our house will be full of young and old folks. I am trying not to have any expectations as to how this will play out but the plan is to keep it low key, for me not to worry about anything at all. What will be will be. Our already brined 20 pound free range turkey is being delivered today from "Urban Digs," so how easy is that? The only two things that I plan to do for Christmas dinner are the stuffing and the gravy. Beyond that, I will supervise from the bar across from the kitchen. At least that is the loose plan. I will try hard not to micromanage nor worry about how everyone is doing. I will take care of my own self and retreat to my room whenever I feel the need.

One of the best parts of this is that Dick will get a break from being the main caregiver. There will be many others to help out if needed.

I wish for everyone, a good holiday wherever you are. No matter how tough it is going through cancer treatment there is usually a positive to be found. For me, it is again the knowledge that I have the support of so many people.

Back from the dark side...

What a difference a week can make! As I slowly recovered following my hospitalization I found myself  easily overwhelmed, impatient, tearful and at times, imagining the worst. The inactivity that my illness led me to gave my mind too much time to ponder dark thoughts that found their way in. I worried about my own mortality, but not in a positive way. I may joke about Darth Vader and the dark side, but truly I felt as though somehow I was on the dark side.

Sunday I woke up feeling better and for the first time in many days, was able to walk to the river and back on my own. I had enough energy to actually put decorations on our Christmas tree that we had bought two weeks earlier. We hung Christmas quilts and lights and I felt better.

Monday I had to be at the cancer agency at 0700 to have my blood drawn pre chemo. It was cold and dark outside but suddenly I felt really energized. It was as though a curtain had lifted and the darkness was gone. While I waited for the results of the blood work and my visit to the oncologist, I had coffee with my cousin and his wife who live close to all my medical action. John and Jane have made life much easier as they have lent us their second underground parking stall for the duration of my treatments. This is a huge blessing.

Meeting with Dr. Shenkier, my medical oncologist who had the results of the blood work, told me  that my hemoglobin had gone up dramatically and was actually within normal range as were my neutrophils. She wondered out loud how the hemoglobin could have gone up with only 2 units of blood. I jokingly said maybe they were wrong but I now knew that how good I felt was a reflection of those important numbers.

Chemo was back on and Tuesday I had my first infusion of Taxol, preceded by 20 mg of Dexemethosone, a powerful steroid, and 50 mg of Benadryl, an antihistamine. These drugs are used to prevent allergic reactions to the Taxol which is infused very slowly for the same reason. I was in the chemo unit for 5 hours but it went quickly and with no adverse reactions.  I came home feeling woozy but good. I am on a medication for several days to try to ward off the potential side effects of Taxol which are myopathy and neuropathy. The warnings for this drug are to "use care when operating car or heavy machinery." No driving for me but with Christmas coming, and with my steroid high still kicking in, I have made some headway in the realm of Christmas baking. I made lists awhile back and have become proficient at crossing things off rather than adding to it. I am learning that I have limits.

Our old family friends, the Trayners arrive on Sunday from Edmonton and the house will be full of laughter and good company. Our daughter Mary and her boyfriend Ross are also coming to stay that night and the next so what one Trayner has called the "inaugural Leighton/Trayner gong show" will begin with a dozen or more old and young folk filling the house.  I get to take a back seat in all the Christmas cooking preparations but have made it clear that I still want to have a supervisory role though I will try hard not to "control."

Though there is still a long road of treatment ahead, at least I have some understanding now of how illness can affect me and if there is another setback, I may be better able to tolerate it mentally.

Merry Christmas to you all!

Chemotherapy and a room with a view.

Last week was not one of my happier weeks. I may have felt happy and grateful with a cheerful and seemingly positive outlook a few posts back. However #4 round of doxirubicin, aka the red devil and cyclophosphamide, aka cytoxin did a number on me.  Doxirubicin is actually red in colour and is so toxic that if it escapes from the vein it can actually burn the skin and tissue and in worst case scenarios, create the need for skin grafting and even amputation. The things we learn while getting chemotherapy! Of course we know that there can be serious side effects but we all hope they will be minimal. For me, as mentioned in the last post, the S/E were manageable.

Or so I thought. A few days after my 4th and final infusion of A/C as we call the combo, I started to feel vaguely unwell. We already knew that my hemoglobin had fallen to 92 after cycle #3, normal being 120-155. So the oxygen carrying capacity of my red blood cells was diminished and I understood why I was not able to keep up my 5 km walks at the same pace and I also found cycling on even the slightest incline to be tough. I jokingly said to Dick that maybe I could use some EPO. No joke, as the next day, my oncolgist said they had tried EPO to boost the hemoglobin of chemo patients but it had not worked. EPO is used is some medical circumstances as well in blood doping in cycling as we all now know, but it was not to be for me. If my Hemoglobin fell to 80, a blood transfusion would be considered.

I must admit to a night of reflection after hearing that news. In 1994, my father died from a massive respiratory arrest following a blood transfusion after chemo at the very same cancer agency I have my treatments at. For my father, from diagnosis to death was a few short weeks. Though my circumstances are very different, it brought back all the memories in a flood, including the night of his funeral when our youngest son Andy, just 19 months old, was hospitalized for a a very serious GI illness that he probably picked up on the long flights from Saudi.

Back to my feeling unwell. As the days went by after that last A/C infusion, small things that for a healthy person would not really even register, started to add up. Low grade fevers, diarrhoea, shortness of breath, tachycardia (elevated heart rate), strange changes in unmentionable parts, nausea and more. I  called the nurse help-line at the cancer agency Wednesday and was sent off to a drop in for a look at the unmentionables. An expensive cream was ordered and I went home to wait and see. Thursday I got a follow-up call from the help-line and waited for my pre chemo blood work Friday. Mid afternoon Friday a kind and compassionate doctor called with my blood results. Not only was the hemoglobin 82 but worse, my neutrophils which fight off infection were almost non existent. All those little ailments I had complained of all week now added up. The long and short of it was that I was admitted to ER at the Vancouver General Hospital for anemia and neutropenia. With that diagnosis, there was no wait at all--it seemed that they wanted me whisked off to a safe room immediately.

VGH being a teaching hospital, meant that within hours, I had been examined by no fewer than 5 doctors with more to come. Chest X-ray, ECG, blood draws, swabs, IV with antibiotics, in short, a septic workup. My only real complaint was that it felt like the north pole and by the time a bed was found for me 11 hours later, I had 10 blankets on me.

The good news at 0245 was that a room on had been found for me as the previous occupant had gone for a double lung transplant in the middle of the night! Angel, (yes his name really was Angel) my nurse told me get ready for the view once I was settled in bed. Wow, I only wish I had a photo of downtown Vancouver at night -- fully lit up, mountains in the background and with a huge red  Christmas tree complete with a gold star on top of one of the towers. I felt better immediately! By morning the sun was shining on the mountains and the view was even more incredible. Even the bathroom had a bow window allowing for views all the way to English Bay and UBC. Mary called while crossing the Cambie Bridge and ascertained approximately where my room was located, told me where she and her boyfriend Ross were on the bridge and we waved at each other as they headed to Whistler for the weekend. Sorry, but by the time I had Dick bring my camera in, clouds had drifted in.

Meanwhile my hemoglobin had fallen to an all time record low of 65 which no doubt explained why I felt so sick. It being the weekend along with the disappearance of 4 tubes of blood destined for the lab, it took until Sunday for 2 units of red blood cells to be transfused. Monday AM I got a pass to go to my already scheduled oncology visit close by VGH. My blood results from an early draw that morning showed hemoglobin up to 92 and neutrophils also up to a healthier level. But Dr. Shenkier said no way for chemo as planned for today. She said no oncologist would allow chemo after what I had been through. So it is that I have a week's interruption and my first Taxol chemo is scheduled for next Tuesday. I have a week to recover and I suppose applaud the fact that I will no longer have Taxol #2 on Christmas Eve. I was discharged late yesterday morning.

The infection remains a mystery but this is common for cancer patients on chemotherapy. Coincidentally, I watched the show "Parenthood" last night on TV.  I had never seen the show before but had heard that one of the main characters has breast cancer. Well, last night's episode had Kristina admitted to hospital with dangerously low white blood cells (no doubt easier to explain to the masses than low neutrophils) which had allowed her to get an infection. Her Christmas Eve hospitalization was far more dramatic than mine of course, it being a popular TV drama but my view was far superior! I wonder what will happen to Kristina next week?