Yeah I am sick of it for sure. Funny how that looks now that I have written it~~but maybe it is apt. Breast cancer has after all made me sick. Not the cancer itself of course since it is just an insidious beast lurking inside me and without the lump, it could still be quietly waiting. But no, it is the treatment of course that has made me sick and sick of the reason for it. But without the treatment that insidious beast would awaken and it would not be the treatment making me sick; it would be the cancer which would also be seriously trying to kill me.
Insomnia is also part of this journey. I have always been a light sleeper and my hearing is so acute that the slightest noise can wake me. Dick sleeps like a log and though he rarely snores, he contentedly puffs away the night. This I hear even with my earplugs in. Ativan helps but then there is the addiction worry. I am not REALLY concerned though every time I take my Ativan I do have fleeting thoughts of sleepless nights down the road when I will have no excuse to take sleep aids. I tried Melatonin a few nights but it gave me nightmares so bad I can't even attempt to describe them. And then Ativan does not alway work as in tonight. Lying in the dark tonight while I tried to go to sleep on Ativan I thought about Cheryl Strayed, author of the book "Wild" which I had just finished. She hiked the rugged Pacific Crest Trail at age 26 totally on her own with no prior backpacking experience but with a pretty crazy background. What amazing spirit!
But then her hiking adventures led me to thinking about this time last year when I was training for a short solo trek (with guide and porter) in the Helambu area of Nepal and a high altitude trek to Lo Monthang in Upper Mustang near the Tibet border with Dick and a group of old friends from our Saudi days. Both treks were wonderfully successful and by the end of May I was back in Canada planning for another Annapurna Base Camp trek in October. That was falling apart due to group member circumstances just as I found the now infamous (at least to me) lump July 18.
I can mentally play out that ensuing drama on insomnia nights and let me tell it does not provoke sleep no matter how many times I run through it! "What the fuck" comes to mind often. How did this happen? Yeah it is what it is but still, I sometimes wish that it has all been one of those really bad dreams that you wake up from saying "thank god it was just a dream." Honestly I still want that to be true.
From training for treks to training for surgery is how it is now. Tonight I decided that tomorrow is the day I will really get disciplined and this will include yoga, meditation and walks with a few more snowshoe days thrown in. But then insomnia came along and here I am late at night downstairs drinking hot chocolate while I should be sleeping in preparation for the healthful training I have planned for myself.
It is almost impossible to go a day without knowing I have breast cancer, no matter how much fun we have. There are the side effects of course from chemo but there is also the long string of appointments with so many doctors, so many tests and alway the next looming treatment.
Tonight too I was thinking about my choice of surgery. Full mastectomy and axillary dissection are not optional but reconstruction is. For months I thought about that choice. I read all I could in my two favourite breast cancer books; "The Intelligent Guide to Breast Cancer" which we are all given here in Canada on diagnosis and "Dr. Susan Love's Breast Book" which is given out in the US. I spent time with a woman who had the same reconstruction done by the same plastic surgeon as I will have. Knowing that this requires more surgery, anesthetic and recovery time, I have often pondered my decision. I have spoken to women who have had bilateral mastectomies and done nothing and to women who have had reconstruction at the time or later. Each has her own reason for her choice. I do think that having both breasts removed may have swayed me to do nothing, though I am not really sure.
There has been much written about how women feel about losing their breast(s) and how they make the decision to do nothing or to have reconstruction. Though I have small breasts to start with this does not make it any easier to visualize my left breast there but nothing on the right side. To go through surgery, chemo, more surgery and radiation is wearing but that is not all that we have to contend with. There is nerve damage, numbness, the possibility of lymphedema, a very serious situation in which the lymphatic system no longer drains properly due to the removal of lymph nodes and to top it all off, our breast or breasts are gone. And there is still the fear of cancer still remaining or recurring.
Then there was even a small twinge of guilt or maybe selfishness. Choosing reconstruction means longer recovery time and more surgery months after radiation. This means more dependence on family and others to a certain degree. I also thought briefly that if I chose not to have reconstruction that maybe I could still sail across the Med and the Atlantic with Dick. I soon came to the conclusion that it is unrealistic to consider that idea as no matter what I choose, treatment and subsequent care will extend far beyond the time frame for the start of the sailing trip.
So yes, I am sick of breast cancer. It has been a tough learning curve that never seems to end. I know it will end but is is not really helpful at this point to be told that a few years down the road much of this will be a distant memory. For now, breast cancer is front and center no matter how well I am coping. I also know that I should not feel guilty or selfish for choosing to still have a breast at the end of the day. If it does not work out at least I have given reconstruction my one and only chance.
Monday, February 4, 2013
Wednesday, January 30, 2013
Chemotherapy
Yesterday was my final day in the BGC (big girl chair as my breast cancer gang call it). Mary came with me and did some filming so maybe one day soon you can all see our wonderful chemo setting on the 6th floor of the Vancouver cancer agency. Though maybe a bit hard to believe, I have found over the course of my 8 chemo sessions, that it is a warm and positive place. As patients we are all there hoping that our treatments will put our different cancers at bay. Often there is a genuine wish to share experiences and the volunteers some with dogs in tow, some with their own cancer stories to tell all add to the mix. The nurses are all warm and caring and so knowledgeable.
Our chemo floor does not have a big bell to ring at the end of chemo as many American ones do but I am not sure that I really wanted that anyway. I was happy to have the sessions end but I am not quite there yet with feeling it is the end. Many patients are back with recurrences and in the back of my mind I know there is that chance for me too. I am not going to dwell on that but it is a reality. My nurse, Jen did give me a big hug and the other patients in my room wished me well.
Before I got my Taxol each time I got 20 mg of Dexamethosone and 50 mg of Benadryl IV. These are to ward off any allergic reactions mainly from the solvents used to render the Taxol infusible. So I turn in a bit of a zombie for awhile with dry mouth and slurred speech. Oh well, a small price to pay for no allergies and the benefit is lots of steroid energy for a couple of days following, like today!
Now for my chemo comments. On another blog I am following, a young woman also here in Vancouver with breast cancer, posted what she called a "Letterman" style list of the 10 worst things about chemo. Funnily enough just a few days prior while waiting between yet more appointments, I had made my own list. I used two pages, one for positive and one for negatives. The negatives won!
Negatives:
Our chemo floor does not have a big bell to ring at the end of chemo as many American ones do but I am not sure that I really wanted that anyway. I was happy to have the sessions end but I am not quite there yet with feeling it is the end. Many patients are back with recurrences and in the back of my mind I know there is that chance for me too. I am not going to dwell on that but it is a reality. My nurse, Jen did give me a big hug and the other patients in my room wished me well.
Before I got my Taxol each time I got 20 mg of Dexamethosone and 50 mg of Benadryl IV. These are to ward off any allergic reactions mainly from the solvents used to render the Taxol infusible. So I turn in a bit of a zombie for awhile with dry mouth and slurred speech. Oh well, a small price to pay for no allergies and the benefit is lots of steroid energy for a couple of days following, like today!
Negatives:
- loss of the hair on my head~~buzz cut video way back in October.
- hair loss everywhere else I have hair~~most annoying has been nose hair as my nose runs non stop outside especially when walking, hiking or snowshoeing. One day I was leaning over to grab some toilet paper in a public bathroom just prior to a hike and snot suddenly poured out so fast it left a puddle on the floor. I read and laughed out loud when a fellow BC writer described doing the same on a boardroom table!
- watery eyes due to dryness caused by chemo and drugs taken along with chemo
- dry nose with bleeding especially at night if I end up nose breathing~~no nose hair does not help.
- dry skin and more age spots (hope that is just my imagination!)
- mouth sores~~compromised immune system
- diarrhoea, constipation
- nausea
- loss of taste buds
- weight and muscle loss
- fatigue
- unmentionable infections
- anaemia, neutropenia
- headache and fevers
- muscle pain
- neuropathy (this is the latest for me from taxol)
- chemo brain~~this is a very real consequence but seems that it is reversible.
- fear, anxiety, anger, frustration
Positives:
- Chances for reflection on what is important (and not so important).
- Understanding what I am grateful for.
- Having my family support me and make me laugh (and cry sometimes).
- Renewal of friendships.
- Knowledge that my chance of survival is greatly increased.
- Meeting other cancer patients and hearing their stories.
- Knowing what an amazing cancer center we have in Vancouver.
BC Cancer Agency chemo room~~last infusion!
Celebratory glass of wine with Dick last night!
Saturday, January 12, 2013
Treatment plans and ocean crossings...
Last July I booked one way award tickets for Dick and me to fly to Turkey. Our Prout 39 catamaran has been based in Turkey since 1997 and last year we finally made the decision to sail across the Mediterranean and Atlantic to the Caribbean. When we lived in Saudi Arabia, having a boat in Turkey made sense. We still love Turkey but now that we are back in Canada with the same northern hemisphere winters, it made sense to move our boat to a warm winter destination.
We took a course called "the psychology of cruising" last spring and I was able to shed some of my reservations about long distance cruising. Dick is the real sailor and has done ocean crossings as recently as 2009 when he crossed the Atlantic on a catamaran owned by friends. He has also spent countless hours preparing our boat for this adventure. It has been his dream for decades to sail part way around the world and I was "onboard" (pun intended) at last.
Two weeks after I booked those one way tickets, I found the lump. Even then, we anticipated that after my lumpectomy, radiation would follow and I would still be ready to go by spring, 2013. As we all know, plans change and in this case the our plans have changed dramatically.
So there are now two plans. One is my treatment plan and other involves Dick sailing from Bodrum, Turkey to the Caribbean without me. My plan takes me well into next fall and Dick's plan tentatively has him leaving Bodrum in July and arriving in the Caribbean in December. His plan requires that he find crew for all stages of the journey. Weather and the boat standing up to thousands of miles of rigorous sailing will also play a part if he finds his crew.
My plan is less tentative though with breast cancer I have found that there is no certainty. On March 5th I will have a full mastectomy, axillary dissection and the first part of a two stage reconstruction. Following surgery and healing I will have 5-6 weeks of daily radiation. This should take me well into June. With a minimum of 3-6 months after radiation, I will have the second stage of reconstruction. Ins'allah (god willing) was a word much used in our 18 years in the Middle East and we still find ourself using it. So ins'allah this plan will actually work out.
Both plans involve strength and determination and a possible separation of many months. I will also have to ask our good friends for a continuation of support that has been so readily been given.
Christmas in the Caribbean does sound good. Stay posted for updates. Conversations continue.
Photo taken by Dean French August, 2012.
We took a course called "the psychology of cruising" last spring and I was able to shed some of my reservations about long distance cruising. Dick is the real sailor and has done ocean crossings as recently as 2009 when he crossed the Atlantic on a catamaran owned by friends. He has also spent countless hours preparing our boat for this adventure. It has been his dream for decades to sail part way around the world and I was "onboard" (pun intended) at last.
Two weeks after I booked those one way tickets, I found the lump. Even then, we anticipated that after my lumpectomy, radiation would follow and I would still be ready to go by spring, 2013. As we all know, plans change and in this case the our plans have changed dramatically.
So there are now two plans. One is my treatment plan and other involves Dick sailing from Bodrum, Turkey to the Caribbean without me. My plan takes me well into next fall and Dick's plan tentatively has him leaving Bodrum in July and arriving in the Caribbean in December. His plan requires that he find crew for all stages of the journey. Weather and the boat standing up to thousands of miles of rigorous sailing will also play a part if he finds his crew.
My plan is less tentative though with breast cancer I have found that there is no certainty. On March 5th I will have a full mastectomy, axillary dissection and the first part of a two stage reconstruction. Following surgery and healing I will have 5-6 weeks of daily radiation. This should take me well into June. With a minimum of 3-6 months after radiation, I will have the second stage of reconstruction. Ins'allah (god willing) was a word much used in our 18 years in the Middle East and we still find ourself using it. So ins'allah this plan will actually work out.
Both plans involve strength and determination and a possible separation of many months. I will also have to ask our good friends for a continuation of support that has been so readily been given.
Christmas in the Caribbean does sound good. Stay posted for updates. Conversations continue.
Photo taken by Dean French August, 2012.
Friday, January 11, 2013
2013 - a new year with breast cancer...
As I sit in our sunny living room this afternoon, still in my pyjamas, I ponder what I really want to write about. I have a long "to-do" list that just keeps getting longer but yesterday I decided to kind of take today off with the goal of posting on my blog and if that is the only thing I get done, so be it.
I was glad to see the end of 2012. Though Christmas did turn out to be fun, I was never really well. The last days of the year found me in dark places again, Low grade fevers persisted and I found myself again with too much time to think but not enough energy to even go to a yoga class or walk very far. I imagined worse case cancer scenarios and became increasingly impatient. My behaviour must have been almost intolerable for Dick as I vented my anger and frustration on the person closest to me.
I saw my oncologist on New Year's Eve and she started me on a new antibiotic. Either that and/or the sun that came out in the new year gave me a new perspective yet again as I started to feel better. I am learning that illness renders weakness that for me is hard to comprehend and live with and it takes wellness to understand that. I read back in my journals (sketchy as they are) from past years and found that I have struggled each winter since our return to Canada with what some people call SAD, or seasonal affective disorder. Even though I felt almost guilty then, that I could allow myself to wallow in despair, this year was compounded by breast cancer and illness caused by chemotherapy.
My recovery over the past 10 days has included another cycle of Taxol, my latest chemotherapy which could have laid me low. Instead I have felt almost "well," and have fleeting thoughts of what life might be like after chemo. I was able to snowshoe with friends on Tuesday and hike with my club yesterday.
When I checked in on Facebook today, there were many new posts. One of them was written by an old friend from our Vancouver school days and could not have been more timely ~~~ "lessons in practical optimism - those who have the strength can carry mountains." He wrote this while adding a link to this blog. For those of you reading this, you will know that the photo of me here has Mt. Everest in the background. In 2008 that was the hardest thing I had ever done. Breast cancer treatment is now the hardest thing I have ever done but with friends like Steve who wrote that post, I will conquer this and strive to "carry more mountains."
Maybe too I will learn that strength comes in different forms. What I have considered as weakness may not be that at all. Uncertainty is unsettling too but again, this is a new norm and something else that I can and need to learn from. Though the roller coaster ride continues, every positive step and thought is a step forward. I cannot always stop the negative thoughts but I can work to minimize them!
2013 was also the start of an amazing goal for our youngest child, Andy now age 20. He is raising money for "Right to Play." I am adding his link:
http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565
Andy has already completed 6 triathlons since his first on January 1. Twice so far he has asked me to walk part of the 10 k runs. Normally he actually runs them but I was so happy that we had those walks together this past week and I look forward to many more. Maybe I will even be able to manage 10 k one of these days.
The photo was taken on Tuesday on Cypress Mountain. It was pouring rain in town but snowing lightly on the mountain. I look forward to more!
I was glad to see the end of 2012. Though Christmas did turn out to be fun, I was never really well. The last days of the year found me in dark places again, Low grade fevers persisted and I found myself again with too much time to think but not enough energy to even go to a yoga class or walk very far. I imagined worse case cancer scenarios and became increasingly impatient. My behaviour must have been almost intolerable for Dick as I vented my anger and frustration on the person closest to me.
I saw my oncologist on New Year's Eve and she started me on a new antibiotic. Either that and/or the sun that came out in the new year gave me a new perspective yet again as I started to feel better. I am learning that illness renders weakness that for me is hard to comprehend and live with and it takes wellness to understand that. I read back in my journals (sketchy as they are) from past years and found that I have struggled each winter since our return to Canada with what some people call SAD, or seasonal affective disorder. Even though I felt almost guilty then, that I could allow myself to wallow in despair, this year was compounded by breast cancer and illness caused by chemotherapy.
My recovery over the past 10 days has included another cycle of Taxol, my latest chemotherapy which could have laid me low. Instead I have felt almost "well," and have fleeting thoughts of what life might be like after chemo. I was able to snowshoe with friends on Tuesday and hike with my club yesterday.
When I checked in on Facebook today, there were many new posts. One of them was written by an old friend from our Vancouver school days and could not have been more timely ~~~ "lessons in practical optimism - those who have the strength can carry mountains." He wrote this while adding a link to this blog. For those of you reading this, you will know that the photo of me here has Mt. Everest in the background. In 2008 that was the hardest thing I had ever done. Breast cancer treatment is now the hardest thing I have ever done but with friends like Steve who wrote that post, I will conquer this and strive to "carry more mountains."
Maybe too I will learn that strength comes in different forms. What I have considered as weakness may not be that at all. Uncertainty is unsettling too but again, this is a new norm and something else that I can and need to learn from. Though the roller coaster ride continues, every positive step and thought is a step forward. I cannot always stop the negative thoughts but I can work to minimize them!
2013 was also the start of an amazing goal for our youngest child, Andy now age 20. He is raising money for "Right to Play." I am adding his link:
http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565
Andy has already completed 6 triathlons since his first on January 1. Twice so far he has asked me to walk part of the 10 k runs. Normally he actually runs them but I was so happy that we had those walks together this past week and I look forward to many more. Maybe I will even be able to manage 10 k one of these days.
The photo was taken on Tuesday on Cypress Mountain. It was pouring rain in town but snowing lightly on the mountain. I look forward to more!
Sunday, December 23, 2012
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.
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.
Thursday, December 20, 2012
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!
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!
Tuesday, December 11, 2012
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?
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?
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