The day after my Dad's funeral I had a CT Scan. Imagine my delight when the Dr. told me the results the very next day. She had good news that the visible masses of the previous scan were no longer there. Great news. This could mean that after the 5th and 6th Doxil treatment I could get a break from chemo for awhile. How long? Who knows but I am hoping for a lengthy reprieve! Dad is smiling down at me!
Doxil apparently is doing the job but these side effects are brutal. See my December 7th post. Doxil apparently is a one trick pony. According to the Dr. I can only have it once because it can damage the heart with prolonged use. After the 6th dose I will probably not have it again if I recur and I probably will. But there are other drugs out there and I don't want to get acquainted with any of them anytime soon.
In the meantime I had my 5th treatment on January 10th and the sixth dose will be around February 7th. After this, taking care of myself will be top priority as it generally is. Do you think I sit around all day eating Cheetos and drinking beer? :) I will continue with good eating habits, more organic produce and more activity. We will probably plan a trip or two. Who knows? It has been a long time since I have felt this optimistic!
Happy New Year!
Sunday, January 12, 2014
Final Days of December 2013
Obtaining a stent for my father to alleviate the jaundice was not to be. The doctor at the hospital showed me on his computer what the cancer looked like via a recent CT Scan. How vivid to see where the cancer resided as he matter of factly discussed this 15 minute procedure. But the cancer had spread so much it was blocking the bile duct from the liver.
While my mother and I waited the porter waiting to take him to recovery told us about her father who had died of pancreatic cancer. I am finding that most people who have faced this disease end up succumbing. The prognosis is not good at all and even though we knew this we always hoped to get a few more months. Her father went quickly and her story reminded us of the eventual outcome, no matter what. Whatever medical intervention that presents itself does not mean it will prolong life and certainly does not mean he will be comfortable.
Never the less we took him home and discussed next steps. Within the week he was back in hospital to have a tube inserted from the outside. Full discussions were held with his pain and symptom management physician, Dr. Ward from Hospice Waterloo Region and our family. Truth be told she gently encouraged us to leave him be but as a family we felt we had to try and alleviate this bile to buy him a few more weeks. These decisions are not easy and are heart wrenching and she fully supported our decision. His stay in the hospital was over several days while they dealt with low blood pressure and too much iron in his blood. After 6 units of platelets he was good to go with the procedure. This was December 18th. After a couple of days of recovery in hospital he was transferred home and was housed in the living room in a hospital bed. He did not leave that bed except for once when we physically lifted him out and placed him gently on an easy chair for a change of pace.
These last few days of his life were stressful and gut wrenching. Pain was ever present but under control with medications and eventually a pain pump. His appetite greatly decreased and fluid intake diminished. He survived Christmas and still was conscious enough to recognize all of us and talk very briefly. We had PSWs through the CCAC come into the house 3 times a day to care for him but my mother was the front line care provider. She was by his side all day and only slept in her bed when she felt he was asleep for the night. We provided her with a baby monitor so she could hear him breathe so hopefully she could rest.
When someone is so sick you would think that they spend most of the day sleeping peacefully but this is not the case. There is much movement and some attempts to get out of bed which would be fatal. Down time for my mother was minimal even with help from CCAC. A nurse was visiting every day and the caring physician would visit when needed. The front door was a revolving door when you add deliveries for medication or equipment. And then there was the phone. It rang all the time and my mother had to ignore it many times. Many of her meals were on the run. We helped where we could with necessary purchases for his care, food and support. But the spouse is always the one to bear the brunt.
My mother had decided after Christmas to look into Lissard House. It was clear to her that Dad would not last much longer and caring for him was taking a toll. The application process began but his condition deteriorated even faster and within days she knew he would not make it to Lissard House. Even so she had decided that moving him was so physically painful for him that transporting him anywhere was out of the question. He was to die at home and this was to be the best option.
The healthcare people through CCAC and Hospice Waterloo Region are wonderful. Without their help Dad would have ended up being in hospital on some acute care floor and this would not have been what we wanted for him in his final days.
New Year's Eve came and went but the inevitable occurred around 9 pm on January 2nd. Even Franca made it from New York having arrived on New Year's Day. He knew she was also there with us even though he could not speak anymore. He did squeeze our hands in recognition. My Dad went peacefully with his family around him.
We will miss him so much but his suffering has ended and he is in a better place. It is hard to believe he is not here anymore.
While my mother and I waited the porter waiting to take him to recovery told us about her father who had died of pancreatic cancer. I am finding that most people who have faced this disease end up succumbing. The prognosis is not good at all and even though we knew this we always hoped to get a few more months. Her father went quickly and her story reminded us of the eventual outcome, no matter what. Whatever medical intervention that presents itself does not mean it will prolong life and certainly does not mean he will be comfortable.
Never the less we took him home and discussed next steps. Within the week he was back in hospital to have a tube inserted from the outside. Full discussions were held with his pain and symptom management physician, Dr. Ward from Hospice Waterloo Region and our family. Truth be told she gently encouraged us to leave him be but as a family we felt we had to try and alleviate this bile to buy him a few more weeks. These decisions are not easy and are heart wrenching and she fully supported our decision. His stay in the hospital was over several days while they dealt with low blood pressure and too much iron in his blood. After 6 units of platelets he was good to go with the procedure. This was December 18th. After a couple of days of recovery in hospital he was transferred home and was housed in the living room in a hospital bed. He did not leave that bed except for once when we physically lifted him out and placed him gently on an easy chair for a change of pace.
These last few days of his life were stressful and gut wrenching. Pain was ever present but under control with medications and eventually a pain pump. His appetite greatly decreased and fluid intake diminished. He survived Christmas and still was conscious enough to recognize all of us and talk very briefly. We had PSWs through the CCAC come into the house 3 times a day to care for him but my mother was the front line care provider. She was by his side all day and only slept in her bed when she felt he was asleep for the night. We provided her with a baby monitor so she could hear him breathe so hopefully she could rest.
When someone is so sick you would think that they spend most of the day sleeping peacefully but this is not the case. There is much movement and some attempts to get out of bed which would be fatal. Down time for my mother was minimal even with help from CCAC. A nurse was visiting every day and the caring physician would visit when needed. The front door was a revolving door when you add deliveries for medication or equipment. And then there was the phone. It rang all the time and my mother had to ignore it many times. Many of her meals were on the run. We helped where we could with necessary purchases for his care, food and support. But the spouse is always the one to bear the brunt.
My mother had decided after Christmas to look into Lissard House. It was clear to her that Dad would not last much longer and caring for him was taking a toll. The application process began but his condition deteriorated even faster and within days she knew he would not make it to Lissard House. Even so she had decided that moving him was so physically painful for him that transporting him anywhere was out of the question. He was to die at home and this was to be the best option.
The healthcare people through CCAC and Hospice Waterloo Region are wonderful. Without their help Dad would have ended up being in hospital on some acute care floor and this would not have been what we wanted for him in his final days.
New Year's Eve came and went but the inevitable occurred around 9 pm on January 2nd. Even Franca made it from New York having arrived on New Year's Day. He knew she was also there with us even though he could not speak anymore. He did squeeze our hands in recognition. My Dad went peacefully with his family around him.
We will miss him so much but his suffering has ended and he is in a better place. It is hard to believe he is not here anymore.
Saturday, December 7, 2013
Doxil Side Effects
So far I have had 3 doses of Doxil. Different chemo drug and different side effects.
I do get the usual run down feeling and fatigue a couple of days after chemo but that clears up fairly quickly. The following week is pretty good but then I hit the 10 to 14 days after chemo. All hell breaks loose..... This is the period of time where my immune system is at its lowest. Low blood counts. Risk of infection.
My mouth develops sores. Painful sores. I tend to stay away from anything too hot, too spicy, too hard, too salty, to acidic, etc. It is like having cankers all over your mouth. Not pleasant at all. But I find that popsicles help to numb my mouth for a little while. I also have something called 'Magic Mouthwash'. It is basically a topical anesthetic that I gargle with and then swallow. It numbs my mouth for about an hour. Feels like when I have been to the dentist and had a tooth pulled. Helpful especially at night to fall asleep without the pain. Clears up within a week or so. Thank God!
There is a side effect that is with me all the time and it developed after my second dose of Doxil. My hands and feel are experiencing something called 'hand and foot syndrome'. Hands are constantly very dry, tingly, hot and easily develop cracks if I am not careful with moisturizing. They can also get painful if I use them to much in a strenuous manner. Chopping vegetables, vacuuming, taking the dog for a walk, etc. You get the idea..... Anything that requires a grip. My feet are hot and dry as well but luckily not painful and I make it a point to ensure I smear moisturizer a couple of times a day.
My skin in general is not the same. Quite dry and I have also developed a rash around the arm pit area. That is itchy and gross looking. The rest of me has some discoloration especially around the areas of clothing contact ie waistline. The skin is darker and dryer. Parts of me appear to have been over exposed to the sun.
The main recommendation for this dry and hot skin is soaking in some ice water and Udderly Smooth Cream. I call it the cow cream. Too funny. This is for cow's udders. Keeps them smooth and supple!
The other side effect I will not discuss and it involves the back side.
Was in to see the oncologist this past Thursday for my pre chemo assessment and she is going to request a reduction in my next dosage to see if it will help with some of these side-effects. Next chemo appointment is next Tuesday (10th). Also a CT Scan will be scheduled for early January. So far my CA 125 numbers have been going in the right direction and I am currently sitting at 113 which is a drop from 386 in August. YAY!
In other news my father has developed jaundice. He needs a stent to drain bile from his liver and they have taken a CT Scan to determine if he is a candidate. We should know more this Monday.
I do get the usual run down feeling and fatigue a couple of days after chemo but that clears up fairly quickly. The following week is pretty good but then I hit the 10 to 14 days after chemo. All hell breaks loose..... This is the period of time where my immune system is at its lowest. Low blood counts. Risk of infection.
My mouth develops sores. Painful sores. I tend to stay away from anything too hot, too spicy, too hard, too salty, to acidic, etc. It is like having cankers all over your mouth. Not pleasant at all. But I find that popsicles help to numb my mouth for a little while. I also have something called 'Magic Mouthwash'. It is basically a topical anesthetic that I gargle with and then swallow. It numbs my mouth for about an hour. Feels like when I have been to the dentist and had a tooth pulled. Helpful especially at night to fall asleep without the pain. Clears up within a week or so. Thank God!
There is a side effect that is with me all the time and it developed after my second dose of Doxil. My hands and feel are experiencing something called 'hand and foot syndrome'. Hands are constantly very dry, tingly, hot and easily develop cracks if I am not careful with moisturizing. They can also get painful if I use them to much in a strenuous manner. Chopping vegetables, vacuuming, taking the dog for a walk, etc. You get the idea..... Anything that requires a grip. My feet are hot and dry as well but luckily not painful and I make it a point to ensure I smear moisturizer a couple of times a day.
My skin in general is not the same. Quite dry and I have also developed a rash around the arm pit area. That is itchy and gross looking. The rest of me has some discoloration especially around the areas of clothing contact ie waistline. The skin is darker and dryer. Parts of me appear to have been over exposed to the sun.
The main recommendation for this dry and hot skin is soaking in some ice water and Udderly Smooth Cream. I call it the cow cream. Too funny. This is for cow's udders. Keeps them smooth and supple!
The other side effect I will not discuss and it involves the back side.
Was in to see the oncologist this past Thursday for my pre chemo assessment and she is going to request a reduction in my next dosage to see if it will help with some of these side-effects. Next chemo appointment is next Tuesday (10th). Also a CT Scan will be scheduled for early January. So far my CA 125 numbers have been going in the right direction and I am currently sitting at 113 which is a drop from 386 in August. YAY!
In other news my father has developed jaundice. He needs a stent to drain bile from his liver and they have taken a CT Scan to determine if he is a candidate. We should know more this Monday.
Friday, November 15, 2013
Doxil Treatment #3 - November 12th
This past Tuesday I had my 3rd round of Doxil. All went well and no reactions to speak of with the infusion. I did have more blood work before the infusion could begin because my neutrophils were not at normal level the previous Friday. If the numbers are not healthy they will not administer chemo. Luckily the blood work came back normal and we could proceed.
The good news was regarding the CA 125 number. It is decreasing since we started Doxil and I am sitting at 137 from 386 in August. The numbers are going in the right direction and this is indeed good news!
My father is doing quite well these days. He is comfortable and his pain medications are providing good quality of life. He is a little more talkative and more alert with fewer periods of drowsiness. His appetite is actually better than it has been but I don't think he will gain back any of his lost weight. If he can only stay at current weight we will be happy.
The good news was regarding the CA 125 number. It is decreasing since we started Doxil and I am sitting at 137 from 386 in August. The numbers are going in the right direction and this is indeed good news!
My father is doing quite well these days. He is comfortable and his pain medications are providing good quality of life. He is a little more talkative and more alert with fewer periods of drowsiness. His appetite is actually better than it has been but I don't think he will gain back any of his lost weight. If he can only stay at current weight we will be happy.
Tuesday, October 15, 2013
Chemo Later
Later on today I will be going to hospital to get my second infusion of Doxil. After my last infusion I experienced few side effects. The usual fatigue, nausea and generally blah feeling was there but was short lived. Let's hope for more of the same this time around. (or less)
My CT scan is showing signs of disease throughout my upper abdomen. It is not in one place just sprinkled about. I am not experiencing any pain and am carrying on with life as per usual. I should be getting more exercise and attending the Well Fit program at U of W but have trouble getting there for 8:30 am. I think I need to try and attend later classes. I just feel I need more than 8 or 9 hours of sleep most days and getting up earlier than 8:00 am is tough. I know cry me a river...... For so many years I was getting up at 6:30 am to get ready for work! How things change!
At my last doctor's appointment I was informed of a Doxil drug shortage. That is concerning in the general scheme of things but our local hospital seems to have a good supply. I will check on that later.....
My Dad is doing well as well as can be expected. The radiation treatments have seemed to do the job of alleviating some abdominal pain. He is more alert these days and participates in conversation. Unfortunately, he is quite wobbly on his legs and we have to be vigilant to protect him from falls. This is most concerning for my mother who is stressed and tired most of the time. The CCAC or Community Care Access Centre is helping out more now with a personal support worker attending to my Dad for his showering needs and providing more assistance with light household cleaning. A nurse visits a couple times a week or whenever necessary.
We do what we can but of course we cannot be at their house 24 hours a day. Luckily Franca is coming to visit for a week. We are expecting her later today. It will be great to see her and John and for her to see Dad and Mom.
My CT scan is showing signs of disease throughout my upper abdomen. It is not in one place just sprinkled about. I am not experiencing any pain and am carrying on with life as per usual. I should be getting more exercise and attending the Well Fit program at U of W but have trouble getting there for 8:30 am. I think I need to try and attend later classes. I just feel I need more than 8 or 9 hours of sleep most days and getting up earlier than 8:00 am is tough. I know cry me a river...... For so many years I was getting up at 6:30 am to get ready for work! How things change!
At my last doctor's appointment I was informed of a Doxil drug shortage. That is concerning in the general scheme of things but our local hospital seems to have a good supply. I will check on that later.....
My Dad is doing well as well as can be expected. The radiation treatments have seemed to do the job of alleviating some abdominal pain. He is more alert these days and participates in conversation. Unfortunately, he is quite wobbly on his legs and we have to be vigilant to protect him from falls. This is most concerning for my mother who is stressed and tired most of the time. The CCAC or Community Care Access Centre is helping out more now with a personal support worker attending to my Dad for his showering needs and providing more assistance with light household cleaning. A nurse visits a couple times a week or whenever necessary.
We do what we can but of course we cannot be at their house 24 hours a day. Luckily Franca is coming to visit for a week. We are expecting her later today. It will be great to see her and John and for her to see Dad and Mom.
Monday, October 7, 2013
Chicago!
On September 30th we went to Chicago with Pat and Suzanne for a long weekend. It was fabulous! Their waterfront is beautiful and runs for miles. The city itself was wonderful and exciting. We stayed at a hotel outside the downtown in a neighbourhood called 'Lakeview' and close to Wrigley Field. It was just an easy 15 minute bus ride to the downtown area. We found this to be a positive and enjoyed returning in the evening to relax and then explore the surrounding area to find a place to eat. Many restaurants to be found and with the lovely summer like weather we had many a meal outdoors.
During our time there we experienced a architectural tour via boat along the river, a tall ship sunset tour on Lake Michigan, a walking art deco architectural tour, and a water taxi ride. One day we rented the public use bikes and rode along the waterfront. That was wonderful. We used public transit the whole time and it was excellent. We purchased a 7 day pass for $30 bucks and we more than got our money's worth. We were so fortunate the weather was so great it made the whole time there very enjoyable!
During our time there we experienced a architectural tour via boat along the river, a tall ship sunset tour on Lake Michigan, a walking art deco architectural tour, and a water taxi ride. One day we rented the public use bikes and rode along the waterfront. That was wonderful. We used public transit the whole time and it was excellent. We purchased a 7 day pass for $30 bucks and we more than got our money's worth. We were so fortunate the weather was so great it made the whole time there very enjoyable!
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| Iconic Sign |
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| Southside view from John Hancock Building |
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| View of Navy Pier |
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| Cloud Gate at Millennium Park |
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| My crew |
Tuesday, September 17, 2013
A Journey with Doxil has Begun
Yesterday I attended the Chemo Lounge to get my first dose of Doxil.
The chemo nurse had my file online and she knew I have a history of chemo sensitivity so she insisted that I get into a bed. If something is to go wrong then it is easier to work on me from a bed rather than a chair. I didn't put up much of a fuss! Since this is the first time then the regular pre-meds are in order i.e. steroids and antiemetics (Zofran) which were taken at home. My previous protocol of Taxol and Carboplatin called for copious amounts of more steroid and benedryl to get my body to take the drugs without reaction. This in turn made me sleep. This did work for 14 rounds but is now is not an option any more. As you will recall in my last posts the long infusion of Carboplatin only also brought on an allergic reaction.
Doxil is only one bag of chemo drug and it is red. Reminded me of a strawberry dacquiri. Which I would have loved but alas no more alcohol while in treatment. They say I can have one drink per week but that is hardly worth it. Perhaps one glass of wine with a special dinner.
Anyway they pumped this red devil into me at the regular infusion rate and nothing happened. Probably the nurse sitting next to me during the first 10 minutes had something to do with my successful infusion. Let's hope this keeps up. Next infusion is scheduled for October 15th. In the mean time I have a CT Scan scheduled on October 1st with review on October 4th with the doc.
The chemo nurse had my file online and she knew I have a history of chemo sensitivity so she insisted that I get into a bed. If something is to go wrong then it is easier to work on me from a bed rather than a chair. I didn't put up much of a fuss! Since this is the first time then the regular pre-meds are in order i.e. steroids and antiemetics (Zofran) which were taken at home. My previous protocol of Taxol and Carboplatin called for copious amounts of more steroid and benedryl to get my body to take the drugs without reaction. This in turn made me sleep. This did work for 14 rounds but is now is not an option any more. As you will recall in my last posts the long infusion of Carboplatin only also brought on an allergic reaction.Doxil is only one bag of chemo drug and it is red. Reminded me of a strawberry dacquiri. Which I would have loved but alas no more alcohol while in treatment. They say I can have one drink per week but that is hardly worth it. Perhaps one glass of wine with a special dinner.
Anyway they pumped this red devil into me at the regular infusion rate and nothing happened. Probably the nurse sitting next to me during the first 10 minutes had something to do with my successful infusion. Let's hope this keeps up. Next infusion is scheduled for October 15th. In the mean time I have a CT Scan scheduled on October 1st with review on October 4th with the doc.
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