I have been waiting for an appointment for my chest CT scan. The hospital called the other day and I'm scheduled to have it on June 4 (Monday). Then I will continue to wait for my oncologist appointment to get the results and also at the same appointment have blood work done and a check up in preparation for my upcoming Rituxan maintenance chemo.
Since my last post, I enjoyed a celebratory evening out with my fellow "Grace Notes". These are a couple of friends that I make music with. We performed together back in April and had decided that we would have an evening out together to celebrate our performance. We went out for dinner and then to The Thousand Islands Playhouse see Shakespeare's "The Tempest" which was performed by a local theatre group called The Kings Town Players. A mutual friend of "The Grace Notes" played the lead role. We thoroughly enjoyed our evening.
I have continued to take advantage of the warm, sunny weather to play in my gardens. I have planted my beans, beets and tomato plants in the vegetable garden. I have also planted some kale in containers on my patio. I weeded another section of my flower garden by the patio and transplanted 2 cucumber plants and another tomato plant in that area. I have a garden area that I have kept as a herb garden and also I have asparagus growing in that section. Unfortunately, my sage did not weather the winter well this year. So the other day, I went at it and cut it back. I have hope that it will grow again as there were some green live spots in it.
My asparagus and my rhubarb have been growing well. I am the only one in the house to like asparagus but I do try to cook it differently in an effort to tempt my hubby's (and son's) taste buds. They seemed to like last night's creation which was very simply asparagus laid across the grill on the BBQ. Then I served it with butter, salt and pepper. My rhubarb is very prolific this year and I have made more concentrate to add to my water as well as rhubarb loaf, rhubarb cake and rhubarb crisp. Hubby's preferences so far is my rhubarb custard pie, the rhubarb moon cake, rhubarb crisp and then the rhubarb loaf.
I am looking forward to my son's graduation from university next week and also a visit with my father-in-law. In the midst of all this, there will be the CT scan, a regularly scheduled mammogram and my continued vaccinations.
Hubby and I continue to get out on the motorcycle as much as we can. I am not losing weight and I am feeling good. I love listening to the birds while I sit on my patio in the early mornings and after supper. It is so peaceful and also entertaining to watch the mother birds teach and feed the fledglings that have just left the nest. We have a pair of cardinals that regularly visit our bird feeder. This year we also have a couple of house finches that have been regular visitors so far.
Do I worry about my health? Yes. It is always there in the back of my mind but it is no longer in the forefront. I am now at a point where I am enjoying my yard, my family and my friends. I'm off now to go for a walk with my best friend. Then I will help her divide some hostas and move them around. I also intend to visit another friend's booth at the local farmer's market. If there is time in the late afternoon or this evening, I will cut the grass. If not, I will do it tomorrow. My energy is good. If I do too much, then it takes me a couple of days to recover. So I just try to pace myself.
Wednesday, 30 May 2018
Saturday, 19 May 2018
Living Life to the Fullest
After weeks of uncertainty and continued waiting and watching, I have finally managed to put the uncertainty to the side and enjoy living again. It probably helps that Spring seems to finally have arrived. I've always enjoyed the simple act of hanging my laundry outside on my laundry line. The morning sun warms up my patio which is sheltered and faces east. When I hang my laundry outside in the mornings, the sun feels absolutely wonderful as it warms me up. As I pin the laundry on the line, I see and hear the yellow finches, blue jays, cardinals, chickadees and grackles. I find the bird songs very soothing and they bring a smile to my face. Some mornings I even hear the local chipmunk scold me as I work on my patio.
I've also been enjoying the warmer weather by digging in my flower garden around my patio. There used to be grape vines around the patio which gave us privacy. I used to pick the grapes in the Fall and make juice and jam with them. However, I pulled the grape vines out several years ago because I wasn't using the grapes and it was a bit of a mess. On the east side of the patio (front of the patio), there was still ground cover (periwinkle/vinca) and an aggressive plant that has purple bell-like flowers. Last Fall I decided that I wanted to pull out all of those plants and put in some hydrangea bushes. I started at the beginning of May to dig out and rip out the roots of these various plants that I no longer wanted. I wanted a fresh slate to work with in that flower bed. It has been hard work and very tiring. I can only work at it for about 20-30 minutes and then I need to rest for about 30 minutes. Early this week, I transplanted a couple of small hydrangea from another area of my garden into this east bed by my patio. I hope they take and thrive but if not, I'll dig them up and buy a couple of hydrangea to put in their place. Also earlier this week, I planted some beets and green beans in my vegetable garden. Timing for that was perfect as the next day we had a soaking rain that will help the seeds grow. On Thursday, I bought a new hydrangea bush to put in the last spot of my garden when I have finished ripping out the old plants. Yesterday morning, I finished ripping out the last bit of plants and roots. The new hydrangea went in and my hope is that the rain today will help it to take root.
The act of ripping out the plants and roots in my garden has been very therapeutic. There's such an irony and parallel to my health situation. How I wish that I could just go in and rip out the enlarged and growing spots that we all believe are some lymph nodes. If only I could dig them out, rip out the roots and keep it from growing back. At this point in time, this can't happen. The doctors have deemed it too risky for me. So there I have been, ripping and digging in my garden in the same manner I wish I could do to myself. Like I said, this has been very satisfying and therapeutic. Working with the sun on my back and listening to the birds while I work has been enjoyable. It was very satisfying yesterday to dig out and pull out the last of the roots. I'm very happy with how my flower bed is now looking. Let's hope the two small hydrangeas will take and grow. As of yesterday afternoon, there were a couple of green little leaves at the base of each plant so I'm hopeful.
For the last couple of weeks, I have been thoroughly enjoying my asparagus and my rhubarb that grow in my gardens. I love this time of year when the new growth appears and I can hardly contain myself as I wait to get the first taste of my garden. I love both asparagus and rhubarb. Last week, I made my rhubarb cake which didn't last long in our house. This may explain why I have been gaining weight as I have not denied myself the pleasure of my rhubarb in its various forms. I've been eating stewed rhubarb, rhubarb infused water and my first rhubarb custard pie of the season. The rhubarb custard pie is Hubby's favourite. Unfortunately, with me being at home, I was tempted and indulged that temptation by eating his pie. I'll just have to make another one in this coming week.
This is my birthday weekend and Hubby always takes me away on the motorcycle for the weekend. On Thursday night, he had cut the grass in the front yard. I know his plan was to cut the grass in the back yard on Monday when we arrive back home. He has been such a huge support and rock for me throughout this last year. So I decided to make his life a little easier and cut the grass in the back yard yesterday morning after working in the garden. I really struggled to finish cutting the grass. I was to meet Hubby for lunch and when he saw me, he knew that I was exhausted. I must admit that I did too much yesterday morning. I was very sore and slow moving for the rest of the day.
I must back up and mention a birthday celebration I had with my best friend on Wednesday night. For several years, we have been celebrating our birthdays together as they are within a week of each other. She hosted our birthday celebration and I supplied the dessert. I made my grandmother's pecan pie which served topped with a scoop of butterscotch ice cream with a drizzle of Cabot Trail (a maple cream liqueur). My best friend created a lovely menu with a Hawaiian theme. We had a great time!
As I read what I have written, I think that I have every reason to be tired this weekend. I must admit that as I climbed on the back of the motorcycle yesterday, my muscles were very sore. Hubby planned our weekend away and we rode for 2 hours straight to our destination. When we stopped at the park on the St. Lawrence River, I warned Hubby that this was not going to be a graceful dismount for me. Normally I can climb on and off the bike without making it wobble too much. I always keep my weight centered so it is easier for Hubby to hold the bike upright. Not early last night. I was stiff, sore and very unsteady as I climbed off the bike. Hubby really did feel the bike wobble back and forth. We both wandered around the park briefly as we stretched out our muscles. Hubby then told me to get back on the bike and off we went to our rental accommodations for the weekend. It is a lovely little home. Although it is in the village, we feel secluded by the fence, trees and shrubbery that surround the house. There are several bird houses around and lots of bird traffic.
I packed lightly for this trip due to lack of space in the bike. As a result, it did not take long to unpack and settle into our accommodations. Our hostess was so kind! She left a little container of home made cupcakes for our enjoyment. She also left us some fresh eggs and some milk for our use. After exploring our home for the weekend, we put together a small grocery list and went for a walk to the local inn for a pub dinner. On the way, we shared our memories of coming to this village for my obstetrician appointments 24 and 21 years ago. There has been some growth in the size of the local plaza in that time. At the inn, Hubby and I both had fish and chips. Hubby had a local craft beer called Rurban and I had a Guinness. After dinner, we walked to the plaza and Hubby bought some beer for the weekend and we bought some groceries for our weekend.
Last night, we expected today to be a very wet and rainy day. Our plans were to just hunker down in our "home" and read. This morning I awoke at 5:30 to see the sun shining and the birds singing. Of course, I had to turn on the television and watch the wedding of Prince Harry and Megan Markle. When Hubby woke up about an hour later, he joined me and we watched the wedding. Then Hubby made me a lovely breakfast. The sun was still shining so we decided to go hunt for some geocaches in the village. We walked about 2 to 3 miles by the time we arrived back to our "home". We found 3 of the 4 geocaches that we decided to look for. The village seemed to be having a "Garage Sale Day" throughout. There were many garage sales including one at the local Anglican church. Just as we approached the last of the geocaches, the rain drops started to fall sporadically. Our thoughts were that if we got soaked, we would just throw our clothes in the dryer that is at the house. We found the last geocache and then walked back to the park on the St. Lawrence River. We decided to have our lunch at the food truck there. The rain had stopped so we ate our lunch at the picnic tables that overlooked the river. The temperature dropped and the wind definitely was colder than when we started out this morning. Our first geocache that we found this morning was in this park. I found it somehow satisfying that we ended our long walk in this same park while we enjoyed our lunch. Just as we walked up the driveway to our accommodations, the rain drops started to fall again. The rest of the afternoon has had a steady rain. Hubby watched the Toronto Blue Jays game while I had an afternoon nap. As I write this, the Jays have lost their game 5-4. Hubby is now having a nap. We will have a steak dinner. Hubby will barbecue the steaks and the potatoes on the supplied propane barbecue and I will cook up the two cobs of corn that we bought at the local grocery store.
As I finish up this long post, I am enjoying a hot cup of earl grey tea. I mentioned to Hubby this morning that by digging in the garden and thoroughly enjoying the outdoors this past week, I have finally managed to put aside the uncertainty and fear of my health situation. Hubby and I are living life fully with no regrets. I did have a pulmonary function test on Tuesday. This was to test my breathing and lung function. I had one at the beginning of October 2017 in preparation for my stem cell transplant. This time, I did notice that I was coughing at the end of each phase of the test. I am still waiting for the chest CT scan appointment to be booked. My hope is that I will continue to enjoy each day and this beautiful warm weather. The all encompassing beauty of nature has always been a balm to my soul. Spending time with my friends and family is also a healing salve that helps me enjoy life fully each day. I have a busy social calendar again this coming week but in the meantime, I am enjoying my birthday weekend away. I believe tomorrow and Monday will be sunny days so I expect that we will hop on the bike and explore the surrounding area while we hunt for geocaches. Carpe Diem....truly.
I've also been enjoying the warmer weather by digging in my flower garden around my patio. There used to be grape vines around the patio which gave us privacy. I used to pick the grapes in the Fall and make juice and jam with them. However, I pulled the grape vines out several years ago because I wasn't using the grapes and it was a bit of a mess. On the east side of the patio (front of the patio), there was still ground cover (periwinkle/vinca) and an aggressive plant that has purple bell-like flowers. Last Fall I decided that I wanted to pull out all of those plants and put in some hydrangea bushes. I started at the beginning of May to dig out and rip out the roots of these various plants that I no longer wanted. I wanted a fresh slate to work with in that flower bed. It has been hard work and very tiring. I can only work at it for about 20-30 minutes and then I need to rest for about 30 minutes. Early this week, I transplanted a couple of small hydrangea from another area of my garden into this east bed by my patio. I hope they take and thrive but if not, I'll dig them up and buy a couple of hydrangea to put in their place. Also earlier this week, I planted some beets and green beans in my vegetable garden. Timing for that was perfect as the next day we had a soaking rain that will help the seeds grow. On Thursday, I bought a new hydrangea bush to put in the last spot of my garden when I have finished ripping out the old plants. Yesterday morning, I finished ripping out the last bit of plants and roots. The new hydrangea went in and my hope is that the rain today will help it to take root.
The act of ripping out the plants and roots in my garden has been very therapeutic. There's such an irony and parallel to my health situation. How I wish that I could just go in and rip out the enlarged and growing spots that we all believe are some lymph nodes. If only I could dig them out, rip out the roots and keep it from growing back. At this point in time, this can't happen. The doctors have deemed it too risky for me. So there I have been, ripping and digging in my garden in the same manner I wish I could do to myself. Like I said, this has been very satisfying and therapeutic. Working with the sun on my back and listening to the birds while I work has been enjoyable. It was very satisfying yesterday to dig out and pull out the last of the roots. I'm very happy with how my flower bed is now looking. Let's hope the two small hydrangeas will take and grow. As of yesterday afternoon, there were a couple of green little leaves at the base of each plant so I'm hopeful.
For the last couple of weeks, I have been thoroughly enjoying my asparagus and my rhubarb that grow in my gardens. I love this time of year when the new growth appears and I can hardly contain myself as I wait to get the first taste of my garden. I love both asparagus and rhubarb. Last week, I made my rhubarb cake which didn't last long in our house. This may explain why I have been gaining weight as I have not denied myself the pleasure of my rhubarb in its various forms. I've been eating stewed rhubarb, rhubarb infused water and my first rhubarb custard pie of the season. The rhubarb custard pie is Hubby's favourite. Unfortunately, with me being at home, I was tempted and indulged that temptation by eating his pie. I'll just have to make another one in this coming week.
This is my birthday weekend and Hubby always takes me away on the motorcycle for the weekend. On Thursday night, he had cut the grass in the front yard. I know his plan was to cut the grass in the back yard on Monday when we arrive back home. He has been such a huge support and rock for me throughout this last year. So I decided to make his life a little easier and cut the grass in the back yard yesterday morning after working in the garden. I really struggled to finish cutting the grass. I was to meet Hubby for lunch and when he saw me, he knew that I was exhausted. I must admit that I did too much yesterday morning. I was very sore and slow moving for the rest of the day.
I must back up and mention a birthday celebration I had with my best friend on Wednesday night. For several years, we have been celebrating our birthdays together as they are within a week of each other. She hosted our birthday celebration and I supplied the dessert. I made my grandmother's pecan pie which served topped with a scoop of butterscotch ice cream with a drizzle of Cabot Trail (a maple cream liqueur). My best friend created a lovely menu with a Hawaiian theme. We had a great time!
As I read what I have written, I think that I have every reason to be tired this weekend. I must admit that as I climbed on the back of the motorcycle yesterday, my muscles were very sore. Hubby planned our weekend away and we rode for 2 hours straight to our destination. When we stopped at the park on the St. Lawrence River, I warned Hubby that this was not going to be a graceful dismount for me. Normally I can climb on and off the bike without making it wobble too much. I always keep my weight centered so it is easier for Hubby to hold the bike upright. Not early last night. I was stiff, sore and very unsteady as I climbed off the bike. Hubby really did feel the bike wobble back and forth. We both wandered around the park briefly as we stretched out our muscles. Hubby then told me to get back on the bike and off we went to our rental accommodations for the weekend. It is a lovely little home. Although it is in the village, we feel secluded by the fence, trees and shrubbery that surround the house. There are several bird houses around and lots of bird traffic.
I packed lightly for this trip due to lack of space in the bike. As a result, it did not take long to unpack and settle into our accommodations. Our hostess was so kind! She left a little container of home made cupcakes for our enjoyment. She also left us some fresh eggs and some milk for our use. After exploring our home for the weekend, we put together a small grocery list and went for a walk to the local inn for a pub dinner. On the way, we shared our memories of coming to this village for my obstetrician appointments 24 and 21 years ago. There has been some growth in the size of the local plaza in that time. At the inn, Hubby and I both had fish and chips. Hubby had a local craft beer called Rurban and I had a Guinness. After dinner, we walked to the plaza and Hubby bought some beer for the weekend and we bought some groceries for our weekend.
Last night, we expected today to be a very wet and rainy day. Our plans were to just hunker down in our "home" and read. This morning I awoke at 5:30 to see the sun shining and the birds singing. Of course, I had to turn on the television and watch the wedding of Prince Harry and Megan Markle. When Hubby woke up about an hour later, he joined me and we watched the wedding. Then Hubby made me a lovely breakfast. The sun was still shining so we decided to go hunt for some geocaches in the village. We walked about 2 to 3 miles by the time we arrived back to our "home". We found 3 of the 4 geocaches that we decided to look for. The village seemed to be having a "Garage Sale Day" throughout. There were many garage sales including one at the local Anglican church. Just as we approached the last of the geocaches, the rain drops started to fall sporadically. Our thoughts were that if we got soaked, we would just throw our clothes in the dryer that is at the house. We found the last geocache and then walked back to the park on the St. Lawrence River. We decided to have our lunch at the food truck there. The rain had stopped so we ate our lunch at the picnic tables that overlooked the river. The temperature dropped and the wind definitely was colder than when we started out this morning. Our first geocache that we found this morning was in this park. I found it somehow satisfying that we ended our long walk in this same park while we enjoyed our lunch. Just as we walked up the driveway to our accommodations, the rain drops started to fall again. The rest of the afternoon has had a steady rain. Hubby watched the Toronto Blue Jays game while I had an afternoon nap. As I write this, the Jays have lost their game 5-4. Hubby is now having a nap. We will have a steak dinner. Hubby will barbecue the steaks and the potatoes on the supplied propane barbecue and I will cook up the two cobs of corn that we bought at the local grocery store.
As I finish up this long post, I am enjoying a hot cup of earl grey tea. I mentioned to Hubby this morning that by digging in the garden and thoroughly enjoying the outdoors this past week, I have finally managed to put aside the uncertainty and fear of my health situation. Hubby and I are living life fully with no regrets. I did have a pulmonary function test on Tuesday. This was to test my breathing and lung function. I had one at the beginning of October 2017 in preparation for my stem cell transplant. This time, I did notice that I was coughing at the end of each phase of the test. I am still waiting for the chest CT scan appointment to be booked. My hope is that I will continue to enjoy each day and this beautiful warm weather. The all encompassing beauty of nature has always been a balm to my soul. Spending time with my friends and family is also a healing salve that helps me enjoy life fully each day. I have a busy social calendar again this coming week but in the meantime, I am enjoying my birthday weekend away. I believe tomorrow and Monday will be sunny days so I expect that we will hop on the bike and explore the surrounding area while we hunt for geocaches. Carpe Diem....truly.
Saturday, 5 May 2018
CT Results and Next Steps
I had my appointment with my oncologist on Wednesday, May 2. The results of my abdominal CT scan on April 25 shows that "The Spot" in the right side of my abdomen has grown. It still is not going to be accessible for a biopsy. The CT scan also showed I have a new spot in the left side of my abdomen. It is too small to get a biopsy yet so we are still in the "Watch and Wait" mode. Once this spot on the left side is big enough, the radiologist believes he/she will be able to access it by going through my back with an IVR (guided needle using ultrasound/CT technology) to get the biopsy. However this spot needs to get bigger before this can be done.
Physically, I am feeling good for the most part. I am feeling very tired and I am breathless with very little exertion. This concerns my doctor so he has ordered a chest CT scan for me. I am currently waiting for the notification of that appointment. In the meantime, I continue to live life fully and as completely as I can. I had a great visit with a friend of mine on Friday morning. I am enjoying doing errands such as grocery shopping. Today an old friend of mine, from out of town, dropped by for a visit. This afternoon, Hubby and I went out on the motorcycle for the first time this season. We rode along some of our favourite backroads and visited Westport before returning home. Tonight, we're having our best friends (couple) over for the evening. I made a goat cheese, avocado and bacon dip for the chips as well as a jug of white wine sangria for my friend and I to share. The temperature has been dropping as the afternoon goes on, but I am determined to have our first little campfire tonight. I've warned our friends to dress warmly. Life is too short and I'm determined to enjoy my favourite things right now.
Although I received disappointing and worrisome news about my health this past week, I will enjoy the warmer weather now. I will continue to fully live in the moment and fill my life with my favourite activities. I will surround myself with the warmth and love of friends and family. I will be digging in my gardens and sitting on the patio reading my books. I will do all these things until I am physically unable to. I believe that my physical health will not deteriorate so quickly that I can not enjoy my summer.
I continue to fund raise for the Relay for Life which will be held June 22. If you wish to donate click on the following link.
http://convio.cancer.ca/site/TR/RelayForLife/RFL_ON_even_?px=4345136&pg=personal&fr_id=23710
Physically, I am feeling good for the most part. I am feeling very tired and I am breathless with very little exertion. This concerns my doctor so he has ordered a chest CT scan for me. I am currently waiting for the notification of that appointment. In the meantime, I continue to live life fully and as completely as I can. I had a great visit with a friend of mine on Friday morning. I am enjoying doing errands such as grocery shopping. Today an old friend of mine, from out of town, dropped by for a visit. This afternoon, Hubby and I went out on the motorcycle for the first time this season. We rode along some of our favourite backroads and visited Westport before returning home. Tonight, we're having our best friends (couple) over for the evening. I made a goat cheese, avocado and bacon dip for the chips as well as a jug of white wine sangria for my friend and I to share. The temperature has been dropping as the afternoon goes on, but I am determined to have our first little campfire tonight. I've warned our friends to dress warmly. Life is too short and I'm determined to enjoy my favourite things right now.
Although I received disappointing and worrisome news about my health this past week, I will enjoy the warmer weather now. I will continue to fully live in the moment and fill my life with my favourite activities. I will surround myself with the warmth and love of friends and family. I will be digging in my gardens and sitting on the patio reading my books. I will do all these things until I am physically unable to. I believe that my physical health will not deteriorate so quickly that I can not enjoy my summer.
I continue to fund raise for the Relay for Life which will be held June 22. If you wish to donate click on the following link.
http://convio.cancer.ca/site/TR/RelayForLife/RFL_ON_even_?px=4345136&pg=personal&fr_id=23710
Friday, 27 April 2018
Waiting and Enjoying the Small Moments
I am still waiting. I had my CT scan two days ago and now I await my appointment with my oncologist on Wednesday to get the results. In the midst of all this waiting, I am taking all the small moments of joy that I can. Yes, I am filling my time with friends and activities as it has been helping me cope with the last 6 weeks of waiting. But life goes on.
Last Friday, April 20, there was a 20th Anniversary celebration of Music West which is a series of 4 concerts every year. The concerts are reasonably priced to offer various genres of music to a broader range of people. Music West also acts as a fundraiser for the local church. Over the years, I have performed with my friend twice. Once we performed a duet on flute and oboe. In 2011, she and I performed a music hall act. She dressed up in top hat and coats to play piano and accompany my persona "Dame Cathy". It was a memorable performance and full of laughter. Our duo became a trio when a friend of my friend happened to stop by while we were playing piano duets in 2015. Our trio started out as two of us on piano while our third friend sang. Then we transformed into my friend playing piano and two of us singing duets. We gathered together for music and fellowship once a week. Throughout all this time, my voice was slowly healing after my last bout with lymphoma in 2012. Through the act of healing and friendship, we called ourselves "The Grace Notes". We performed at the Music West 20th Anniversary celebration on Friday night. We sang "Homeward Bound" and "Poor Wayfaring Stranger". What a wonderful evening we had! Our performance filled us with the joy and celebration of life. We enjoyed listening to the other musicians in the first half of the evening and then thoroughly enjoyed the Victorian melodrama that was performed in the second half of the evening. For me, this was a moment of enjoyment and forgetfulness. I was able to forget, for a little while, the seriousness of my health situation.
As I've mentioned in previous posts, I have been enjoying watching my Kingston Frontenacs' deep foray into the playoffs. They made it to the third round for the first time in 25 years! Unfortunately they lost last night, but the players and organization will never know how much it helped me to get through the last 6 weeks of waiting. I was able to look forward to going to the games. I thoroughly enjoyed the games. I lived in the fun moments of those evenings at the hockey rink. I know the players are still just "kids" but they provided me with entertainment and a reason to live in the moment. I was able to enjoy small moments of time with my hubby at these games.
The weather has warmed up in the last week and I have been taking advantage of it. In order to fill my time and soothe my soul, I have started to clean up my flowerbeds from last Summer and Fall. I was too weak at that point to put my beds to sleep for the Winter. I am still concerned about how quickly I seem to tire this past week. I try not to worry about "the spot" but I do wonder if I'm feeling tired and exhausted because of it. Puttering in the garden has been soothing earlier this week. It has rained the last two days but today looks like it is going to be a day filled with sunshine. I will continue to tackle the weeds and perennials that are overtaking the gardens. I have a plan to change some of the beds and move new plants into some spaces. My energy is not where I would like it to be, but I do what I can and then rest on the patio while I listen to the birds and watch them flit around.
I am still in wait mode until Wednesday. I intend to enjoy as many small moments as I can. I am looking forward to seeing my son on the weekend. I am enjoying the small act of hanging my clothes on the line outside to dry. The small moments help me to cope. I am so thankful that Spring seems to finally be here as I wait.
Last Friday, April 20, there was a 20th Anniversary celebration of Music West which is a series of 4 concerts every year. The concerts are reasonably priced to offer various genres of music to a broader range of people. Music West also acts as a fundraiser for the local church. Over the years, I have performed with my friend twice. Once we performed a duet on flute and oboe. In 2011, she and I performed a music hall act. She dressed up in top hat and coats to play piano and accompany my persona "Dame Cathy". It was a memorable performance and full of laughter. Our duo became a trio when a friend of my friend happened to stop by while we were playing piano duets in 2015. Our trio started out as two of us on piano while our third friend sang. Then we transformed into my friend playing piano and two of us singing duets. We gathered together for music and fellowship once a week. Throughout all this time, my voice was slowly healing after my last bout with lymphoma in 2012. Through the act of healing and friendship, we called ourselves "The Grace Notes". We performed at the Music West 20th Anniversary celebration on Friday night. We sang "Homeward Bound" and "Poor Wayfaring Stranger". What a wonderful evening we had! Our performance filled us with the joy and celebration of life. We enjoyed listening to the other musicians in the first half of the evening and then thoroughly enjoyed the Victorian melodrama that was performed in the second half of the evening. For me, this was a moment of enjoyment and forgetfulness. I was able to forget, for a little while, the seriousness of my health situation.
As I've mentioned in previous posts, I have been enjoying watching my Kingston Frontenacs' deep foray into the playoffs. They made it to the third round for the first time in 25 years! Unfortunately they lost last night, but the players and organization will never know how much it helped me to get through the last 6 weeks of waiting. I was able to look forward to going to the games. I thoroughly enjoyed the games. I lived in the fun moments of those evenings at the hockey rink. I know the players are still just "kids" but they provided me with entertainment and a reason to live in the moment. I was able to enjoy small moments of time with my hubby at these games.
The weather has warmed up in the last week and I have been taking advantage of it. In order to fill my time and soothe my soul, I have started to clean up my flowerbeds from last Summer and Fall. I was too weak at that point to put my beds to sleep for the Winter. I am still concerned about how quickly I seem to tire this past week. I try not to worry about "the spot" but I do wonder if I'm feeling tired and exhausted because of it. Puttering in the garden has been soothing earlier this week. It has rained the last two days but today looks like it is going to be a day filled with sunshine. I will continue to tackle the weeds and perennials that are overtaking the gardens. I have a plan to change some of the beds and move new plants into some spaces. My energy is not where I would like it to be, but I do what I can and then rest on the patio while I listen to the birds and watch them flit around.
I am still in wait mode until Wednesday. I intend to enjoy as many small moments as I can. I am looking forward to seeing my son on the weekend. I am enjoying the small act of hanging my clothes on the line outside to dry. The small moments help me to cope. I am so thankful that Spring seems to finally be here as I wait.
Wednesday, 18 April 2018
Still Waiting and Filling My Days
It will only be one more week before I have the CT scan and then only 2 weeks from today that I will get the results. The waiting period for this time is almost done. I expect that my life will consist of more of this kind of routine for several more months or years. I have always said that waiting is the worst. The fear of the unknown and the uncertainty of where your life (or what's left of it) is going.
As I mentioned in last week's post, I have been filling my days with visiting friends, going to hockey games and doing activities. The OHL hockey team that I follow and cheer for is The Kingston Frontenacs. They won their second round of playoffs by beating The Barrie Colts last Friday night. The third round of playoffs begins tonight against The Hamilton Bulldogs. While there haven't been hockey games, I've been following the Toronto Blue Jays and the Toronto Maple Leafs on television. My days are spent cleaning the house, knitting my sweater, reading and visiting friends. I have also started watching Netflix. I've been watching 2 series. One is called "The Crown" and the other is called "Longmire".
I have to admit that I am bored. I look at what my days consist of and it seems totally meaningless. I have always wanted my life to make a difference. When my children were at home, my time was filled with being a mother and also working from home as a private music teacher. My life was full and meaningful. Every day I could say that I was making a difference in someone's life. Once I started working in the Tuck Shop at the local hospital, I could tell myself that I was leaving an impact on the various people I met through work. It might not have been a life altering impact but I always tried to give people a smile and leave a positive imprint. I am no longer allowed to work at the Tuck Shop until I have all my vaccinations updated. This could take over a year. I am left now with days that gape in front of me and nothing of importance to fill them.
So I have decided to fund raise for Relay for Life in Kingston. I have joined the team called "The Cancer Honour Guard". The event will be held on June 22. I have set my fundraising goal at $1,500. I am now actively fundraising to help research for all the cancers and also for the local support programs through the local Canadian Cancer Society office. I would love to hear someday that a cure has been found for my Follicular Lymphoma. A cure!! Not another round of chemo or stem cell transplant to push it into remission a little longer before it returns. A cure! That could end this uncertainty that many of us live with. The lymphoma will come back. We just don't know when. But with the help of research, maybe I will be alive long enough to hear the words, "There's now a cure!". If you want to donate online to my Relay For Life campaign, the link is:
http://convio.cancer.ca/site/TR/RelayForLife/RFL_ON_even_?px=4345136&pg=personal&fr_id=23710
If you would prefer to send me a cheque, contact me and I will give you my address privately.
I also mentioned last week that I was worrying about "the spot". It continues to be difficult to see if it is my worrying that is causing the various physical ailments that stubbornly seem to be afflicting me. It was pointed out to me that worrying is a symptom that I am not trusting God. I was glad that my friend pointed this out to me. I did not take it as a harsh judgement. It was a reminder that, yes, I need to trust God. I need to hand over my worries to Him and trust Him as I have trusted in the past with other difficulties. My faith is being rocked to its core. I have found myself mentally asking God "Where are you?!". "Why are you not answering all the many prayers that being put forth on my behalf?" "Why are you not answering my prayers?" "What have I done to deserve this when I only try to spread joy and positivity?" All these questions have been met with silence. Nothing. Then I find myself questioning His existence. Maybe it's all true what was suggested many years ago in university. Maybe humans have created God and that God did not create humans. This week, I have been returning to my favourite scriptures to bring myself comfort. I have been praying for friends who are also struggling with their own illnesses. I have been doing my daily devotions in an effort to come back to my God. I am hoping that maybe all this "testing" will eventually bring me back closer to God. Maybe at this point, Jesus is actually carrying me. I don't know. This adds to all the uncertainty. In my life, I have had many struggles. I'm tired of all of this. Perhaps this is why God seems so far away or non-existent. I haven't given up on God but I am seriously questioning Him.
I must also mention that in January, I started to sing with a couple of friends once a week. This has been very helpful and a time of healing and forgetfulness. Back in February 2011, I had performed with one of these friends in a music series called "Music West". At that time, I created a persona called "Dame Cathy" and performed several numbers as a 1900 era music hall performer. "Music West" is celebrating their 20th anniversary this year and I was asked to return and sing again. This time, I am singing with my current friends and we call ourselves "The Grace Notes". We will sing this Friday but due to lack of time, it will be just a couple of numbers. I am looking forward to this and it has proved to be a great distraction from my "worries".
My geographical area was hit with snow and ice this past weekend. It is slowly melting but today looks like a dry and clear day. I think that I will force myself to get out and take a walk. Maybe fresh air will also help me feel "better".
As I mentioned in last week's post, I have been filling my days with visiting friends, going to hockey games and doing activities. The OHL hockey team that I follow and cheer for is The Kingston Frontenacs. They won their second round of playoffs by beating The Barrie Colts last Friday night. The third round of playoffs begins tonight against The Hamilton Bulldogs. While there haven't been hockey games, I've been following the Toronto Blue Jays and the Toronto Maple Leafs on television. My days are spent cleaning the house, knitting my sweater, reading and visiting friends. I have also started watching Netflix. I've been watching 2 series. One is called "The Crown" and the other is called "Longmire".
I have to admit that I am bored. I look at what my days consist of and it seems totally meaningless. I have always wanted my life to make a difference. When my children were at home, my time was filled with being a mother and also working from home as a private music teacher. My life was full and meaningful. Every day I could say that I was making a difference in someone's life. Once I started working in the Tuck Shop at the local hospital, I could tell myself that I was leaving an impact on the various people I met through work. It might not have been a life altering impact but I always tried to give people a smile and leave a positive imprint. I am no longer allowed to work at the Tuck Shop until I have all my vaccinations updated. This could take over a year. I am left now with days that gape in front of me and nothing of importance to fill them.
So I have decided to fund raise for Relay for Life in Kingston. I have joined the team called "The Cancer Honour Guard". The event will be held on June 22. I have set my fundraising goal at $1,500. I am now actively fundraising to help research for all the cancers and also for the local support programs through the local Canadian Cancer Society office. I would love to hear someday that a cure has been found for my Follicular Lymphoma. A cure!! Not another round of chemo or stem cell transplant to push it into remission a little longer before it returns. A cure! That could end this uncertainty that many of us live with. The lymphoma will come back. We just don't know when. But with the help of research, maybe I will be alive long enough to hear the words, "There's now a cure!". If you want to donate online to my Relay For Life campaign, the link is:
http://convio.cancer.ca/site/TR/RelayForLife/RFL_ON_even_?px=4345136&pg=personal&fr_id=23710
If you would prefer to send me a cheque, contact me and I will give you my address privately.
I also mentioned last week that I was worrying about "the spot". It continues to be difficult to see if it is my worrying that is causing the various physical ailments that stubbornly seem to be afflicting me. It was pointed out to me that worrying is a symptom that I am not trusting God. I was glad that my friend pointed this out to me. I did not take it as a harsh judgement. It was a reminder that, yes, I need to trust God. I need to hand over my worries to Him and trust Him as I have trusted in the past with other difficulties. My faith is being rocked to its core. I have found myself mentally asking God "Where are you?!". "Why are you not answering all the many prayers that being put forth on my behalf?" "Why are you not answering my prayers?" "What have I done to deserve this when I only try to spread joy and positivity?" All these questions have been met with silence. Nothing. Then I find myself questioning His existence. Maybe it's all true what was suggested many years ago in university. Maybe humans have created God and that God did not create humans. This week, I have been returning to my favourite scriptures to bring myself comfort. I have been praying for friends who are also struggling with their own illnesses. I have been doing my daily devotions in an effort to come back to my God. I am hoping that maybe all this "testing" will eventually bring me back closer to God. Maybe at this point, Jesus is actually carrying me. I don't know. This adds to all the uncertainty. In my life, I have had many struggles. I'm tired of all of this. Perhaps this is why God seems so far away or non-existent. I haven't given up on God but I am seriously questioning Him.
I must also mention that in January, I started to sing with a couple of friends once a week. This has been very helpful and a time of healing and forgetfulness. Back in February 2011, I had performed with one of these friends in a music series called "Music West". At that time, I created a persona called "Dame Cathy" and performed several numbers as a 1900 era music hall performer. "Music West" is celebrating their 20th anniversary this year and I was asked to return and sing again. This time, I am singing with my current friends and we call ourselves "The Grace Notes". We will sing this Friday but due to lack of time, it will be just a couple of numbers. I am looking forward to this and it has proved to be a great distraction from my "worries".
My geographical area was hit with snow and ice this past weekend. It is slowly melting but today looks like a dry and clear day. I think that I will force myself to get out and take a walk. Maybe fresh air will also help me feel "better".
Tuesday, 10 April 2018
The Emotional Effect of Lymphoma "Wait and Watch"
I am still waiting for my CT scan appointment on April 25. Back on March 7 when my oncologist let me know that a small spot had been seen on the PET scan, he also asked if I had been having diarrhea. I had answered no because my bowels had been affected by the high dose chemo and I thought that it was just a matter of time before my body would be back to "normal". In hindsight, I'm now wondering if my bouts with diarrhea are actually attributed to "the spot". Now I'm more worried. This becomes a vicious cycle for me because my body has always responded to stress by loosening my bowels.
On Saturday morning, I also had a bout of vomiting along with the diarrhea. Was this a flu bug? Was this because of emotional stress? Was this a worsening side effect of "the spot"? These questions and uncertainty continue to play havoc with my emotional well being. I have spent the last week worrying and struggling to keep from spiraling into an emotional dark hole. I have two more weeks before I have the CT scan. Then I will get the results from my oncologist on May 2. So in total, I have another 3 weeks of worrying and waiting.
I look well. Everyone who sees me says how well I look. I may look well but emotionally I'm struggling. I recognize that I've been trying to just fill my days to keep busy so I don't worry or think too much. I've been trying to visit with friends, get outside and clean up the gardens. I've been trying to go for walks which are often cut short because of the diarrhea. I've been keeping my house much more clean and tidy in order to keep busy. Then when it is time to go to sleep, my mind takes over and I worry. Sometimes I can fall asleep right away but then I wake up in the middle of the night and worry.
In order to prevent myself from becoming depressed and to stop the worrying, I've been reading and listening to soothing music. I have also started a new knitting project which is a sweater for myself. I continue to attend the Kingston Frontenacs games as they are in the second round of play offs. This helps me get through my days. I may have to avail myself of some other resources through the Cancer Centre to help me get through this Wait and Watch stage. I may also look into what support services the Canadian Cancer Society offers locally. I will discuss this with my oncologist on May 2 depending on what the CT scan results are.
In the meantime, I have committed myself to being the Relay For Life Community Champion for the local Canadian Cancer Society. I expect that I will be doing media interviews and giving speeches about my cancer journey. I will not be entering my team "Cathy Conquers Cancer". I have found the last number of years that it was difficult to get enough team members to join my team. I am seriously considering joining another team and fundraising for the Relay For Life. I may not be able to walk the full 6 hours on June 22 because I am expecting to be in the chemo lab on the 21st for my "maintenance" injection of Rituxin. I will be walking the Survivors Lap. Perhaps the time spent fundraising for the Relay for Life and my time fulfilling my role of Relay for Life Community Champion will help me get through this emotional ordeal of the "Wait and Watch" period.
Cancer is more than just a physical ordeal. It can be emotionally debilitating too.
On Saturday morning, I also had a bout of vomiting along with the diarrhea. Was this a flu bug? Was this because of emotional stress? Was this a worsening side effect of "the spot"? These questions and uncertainty continue to play havoc with my emotional well being. I have spent the last week worrying and struggling to keep from spiraling into an emotional dark hole. I have two more weeks before I have the CT scan. Then I will get the results from my oncologist on May 2. So in total, I have another 3 weeks of worrying and waiting.
I look well. Everyone who sees me says how well I look. I may look well but emotionally I'm struggling. I recognize that I've been trying to just fill my days to keep busy so I don't worry or think too much. I've been trying to visit with friends, get outside and clean up the gardens. I've been trying to go for walks which are often cut short because of the diarrhea. I've been keeping my house much more clean and tidy in order to keep busy. Then when it is time to go to sleep, my mind takes over and I worry. Sometimes I can fall asleep right away but then I wake up in the middle of the night and worry.
In order to prevent myself from becoming depressed and to stop the worrying, I've been reading and listening to soothing music. I have also started a new knitting project which is a sweater for myself. I continue to attend the Kingston Frontenacs games as they are in the second round of play offs. This helps me get through my days. I may have to avail myself of some other resources through the Cancer Centre to help me get through this Wait and Watch stage. I may also look into what support services the Canadian Cancer Society offers locally. I will discuss this with my oncologist on May 2 depending on what the CT scan results are.
In the meantime, I have committed myself to being the Relay For Life Community Champion for the local Canadian Cancer Society. I expect that I will be doing media interviews and giving speeches about my cancer journey. I will not be entering my team "Cathy Conquers Cancer". I have found the last number of years that it was difficult to get enough team members to join my team. I am seriously considering joining another team and fundraising for the Relay For Life. I may not be able to walk the full 6 hours on June 22 because I am expecting to be in the chemo lab on the 21st for my "maintenance" injection of Rituxin. I will be walking the Survivors Lap. Perhaps the time spent fundraising for the Relay for Life and my time fulfilling my role of Relay for Life Community Champion will help me get through this emotional ordeal of the "Wait and Watch" period.
Cancer is more than just a physical ordeal. It can be emotionally debilitating too.
Wednesday, 28 March 2018
Follicular Lymphoma Maintenance Treatment
I've had a great week! I enjoyed a wonderful dinner and evening with friends when we went to see Foreigner on Saturday night. I also really enjoyed the show by Chilliwack as the opening act. On Sunday, Hubby and I went for a good long walk in the cold sunshine. There is still some snowy bits in the woods where the sun has not been able to reach it and melt it. It's been too cold for the snow to melt on its own.
I'm going to back up a bit to my January 31 appointment with my oncologist. That was the first time he had mentioned that I may have to have a maintenance program of Rituxan for a period of 2 years. This is a normal procedure for patients with follicular lymphoma. At that appointment in January, my doctor decided to wait before starting the maintenance program. On March 7, when the PET scan came back showing something new in the right side of my abdomen, my doctor was torn whether to start the rituxan maintenance program or wait and see if this spot grows bigger. The rixtuxan may cause it to shrink and then they wouldn't know what it was. Another form of lymphoma? More follicular lymphoma? More serious chemotherapy to treat it? Nothing could be decided about any of that until a biopsy is done. When I saw my oncologist on March 14, he again mentioned that I may have to start the rituxan maintenance program before the end of March. Apparently, our medicare (OHIP) will cover the cost of the rituxan maintenance if it is started within 6 months of my last rituxan chemotherapy. This was done at the end of September. The end of the 6 month window is the end of March. On March 14, he was still undecided about what to do.
On Monday of this week, I received a phone call from my oncologist. He had decided that it would be prudent to start the maintenance program. If we started it after the 6 month window, I would have pay for the injections. That would be $10,000 for each injection. Thank goodness my doctor made the decision to start the maintenance program asap. I had my first injection yesterday morning. It takes 3 hours to have the rituxan intravenously. I will have to go every 3 months for 2 years and this will help to keep the lymphoma in remission longer. Because I started it yesterday, I do not have to pay the price tag of $10,000 each time. That math adds up to $80,000 in the course of the 2 year treatment plan.
Because I had an allergic reaction to my very first rituxan treatment way back in January 2012, I always have to have 2 benadryl pills before the nurses can start the rituxan. One of the side effects of rituxan is flu like symptoms like headaches, joint pain, fever and nausea. So, again before treatment can be started, I also have to take 2 tylenol. Once those pills are downed, I am started on a bag of fluid for hydration and then the ritxan goes in. Yesterday, I was very tired when I returned home in the afternoon. That was a result of the combination of the benadryl and the rituxan.
This morning, I am still tired and unmotivated to do anything. Thank goodness I don't seem to have any nausea although last night I wasn't very hungry for my supper. Even this morning, I forced myself to eat some breakfast although I didn't really feel hungry. Life goes on. This is just a part of my life with lymphoma. I'm hoping to do some light cleaning this morning and then maybe even get outdoors and work in the yard. On Monday afternoon, I was able to start raking up the leaves that I was unable to rake in the Fall. I'm hoping that I can tackle that again this afternoon. It will all depend on how I feel. I know from past experiences with chemo that if I push myself and do too much, then I feel ill.
With Easter coming up this weekend, I have been thinking about the crosses we all have to bear. There is always someone worse off than me. I know that sometimes my "cross" gets a little heavy and that's when I realize that God has given me strength and support through prayers and the love of family and friends. So although we all have our "crosses", this Easter I am going to enjoy my weekend with family. I'm going to enjoy my time with Hubby. Life is good!
I'm going to back up a bit to my January 31 appointment with my oncologist. That was the first time he had mentioned that I may have to have a maintenance program of Rituxan for a period of 2 years. This is a normal procedure for patients with follicular lymphoma. At that appointment in January, my doctor decided to wait before starting the maintenance program. On March 7, when the PET scan came back showing something new in the right side of my abdomen, my doctor was torn whether to start the rituxan maintenance program or wait and see if this spot grows bigger. The rixtuxan may cause it to shrink and then they wouldn't know what it was. Another form of lymphoma? More follicular lymphoma? More serious chemotherapy to treat it? Nothing could be decided about any of that until a biopsy is done. When I saw my oncologist on March 14, he again mentioned that I may have to start the rituxan maintenance program before the end of March. Apparently, our medicare (OHIP) will cover the cost of the rituxan maintenance if it is started within 6 months of my last rituxan chemotherapy. This was done at the end of September. The end of the 6 month window is the end of March. On March 14, he was still undecided about what to do.
On Monday of this week, I received a phone call from my oncologist. He had decided that it would be prudent to start the maintenance program. If we started it after the 6 month window, I would have pay for the injections. That would be $10,000 for each injection. Thank goodness my doctor made the decision to start the maintenance program asap. I had my first injection yesterday morning. It takes 3 hours to have the rituxan intravenously. I will have to go every 3 months for 2 years and this will help to keep the lymphoma in remission longer. Because I started it yesterday, I do not have to pay the price tag of $10,000 each time. That math adds up to $80,000 in the course of the 2 year treatment plan.
Because I had an allergic reaction to my very first rituxan treatment way back in January 2012, I always have to have 2 benadryl pills before the nurses can start the rituxan. One of the side effects of rituxan is flu like symptoms like headaches, joint pain, fever and nausea. So, again before treatment can be started, I also have to take 2 tylenol. Once those pills are downed, I am started on a bag of fluid for hydration and then the ritxan goes in. Yesterday, I was very tired when I returned home in the afternoon. That was a result of the combination of the benadryl and the rituxan.
This morning, I am still tired and unmotivated to do anything. Thank goodness I don't seem to have any nausea although last night I wasn't very hungry for my supper. Even this morning, I forced myself to eat some breakfast although I didn't really feel hungry. Life goes on. This is just a part of my life with lymphoma. I'm hoping to do some light cleaning this morning and then maybe even get outdoors and work in the yard. On Monday afternoon, I was able to start raking up the leaves that I was unable to rake in the Fall. I'm hoping that I can tackle that again this afternoon. It will all depend on how I feel. I know from past experiences with chemo that if I push myself and do too much, then I feel ill.
With Easter coming up this weekend, I have been thinking about the crosses we all have to bear. There is always someone worse off than me. I know that sometimes my "cross" gets a little heavy and that's when I realize that God has given me strength and support through prayers and the love of family and friends. So although we all have our "crosses", this Easter I am going to enjoy my weekend with family. I'm going to enjoy my time with Hubby. Life is good!
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