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.
Friday, 27 April 2018
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.
Subscribe to:
Posts (Atom)