Wednesday, 24 October 2012

Tools for Coping with Life

Since I've returned to work, I have less time to myself.  I realize that I've not been keeping up with my daily reading and guided meditation from "The Book of Awakening" by Mark Nepo.  I have replaced my "The Friendship Book 2012" and I find that I need to get myself back into the habit of reading it every morning.  These two readings were very helpful to me while I was going through my treatments.  They helped me psychologically and emotionally.  I also used to pray every morning while I was in treatment.  I would include prayers for other people and their circumstances but I also prayed for myself and my home using The Encircling Prayer.  It goes like this:

Encircling Prayer

The Sacred Three my fortress be
Encircling me.
Come and be round
My hearth and my home

During my prayer time, I would also hand over my worries and anxieties into God's hands.  Again, I haven't been keeping up with this daily practice.  Perhaps this is why I've been feeling down in the dumps again.  I've been allowing my work and demands of family to push aside my "quiet" time. 

Many, many years ago, I used to rely on and nurture my faith daily.  This helped me survive a traumatic time in my life.  As life improved, I still had my very strong faith but I didn't nurture it in quite the same way.  In my experience, if I don't nurture the spiritual part of me daily, I begin to grow away from God.  I begin to rely strictly upon myself.  Being human, I end up making mistakes and paying the consequences.  Sometimes those consequences take an emotional toll on me.  I've always said it is harder to stay close to God when life is going along smoothly than when there are problems.  I need to learn to continue to walk closely with God during the good times as well.  My bout with lymphoma last winter reinforced to me the importance of making time for my daily readings, meditations and prayers.  Prayer, for me, doesn't necessarily mean a formal prayer but it may involve going for a brisk walk and contemplating problems and worries.  Prayer may be in the form of recognizing what is causing me anxiety and then mentally handing it over to God to carry for me.

I write about all this today because I've had another night of anxiety and worry.  I'm worrying about my family and some of our issues.  I'm worrying about my physical health as well as my emotional health.  I have a follow up appointment with my doctor this afternoon.  It is just to go over the MRI results which I've been told verbally are all fine.  My concern is now over a shoulder that has been causing me pain since the beginning of June.  Is it arthritis because it often happens during the night and improves as the day goes on?  Can this be another result of the chemo?  Could the pain be some cancer getting into the bones?  I've been struggling with my voice for the last couple of days while I was teaching.  This morning I awoke with a scratchy throat similar to what I awoke with last November and was a symptom of the lymphoma.  I'm still very tired and fatigued.  Is this because of the chemo I went through or is it because the lymphoma is returning and I feel the fatigue?

The good news is my memory seems to be getting better.  I'm not losing words as often anymore.  As for the other worries, I'll try to hand them over to God.  My worries and anxieties feel like heavy metal weights on my shoulders that I carry with me constantly as baggage.  I will be mentioning my worries to my doctor this afternoon.  I never was a hypochondriac before but I feel myself becoming one now.  I don't want to be worrying about every little ache or sore throat.  The scary thing is that the symptoms of the lymphoma were so "normal" and could be attributed to minor ailments like the common cold.

I'm looking forward to the next few days.  I'll be going on a solo visit via train to see my brother and sister-in-law.  I always like travelling by train because it gives me numerous hours to read and relax.  I like watching the countryside go by as the train travels through rural areas.  I'm hoping this break will rejuvenate me and help me rest.  I'm also looking forward to seeing some extended family members that I haven't seen in 16 years!  My fear is that I will return and be exhausted from the travelling.  I'll be returning just in time to start my next week of teaching.  I may blog once more before I leave but most likely won't be touching base until sometime next week after I return.

Tuesday, 23 October 2012

Another Chemotherapy Side Effect?

As I mentioned in the last post, it has been a struggle in the last few weeks.  I am battling fatigue due to returning to work.  People see me return to work and assume I am fully healed.  They do not realize the exhaustion that I face on a daily basis.  This is only one component of my life that drains my energy.  On top of this, I am still a mother who worries about her family.  This worry also tires and drains me.  Because I seem healthy enough to be able to work, the majority of the household chores are falling on my shoulders again.  All these aspects combined with lots of family activity contribute to my fatigue.  There have been some extenuating circumstances thrown into the mix.  To be honest, some of these aspects of life create a feeling of anger within me.  I believe the anger springs from other people's lack of understanding and expectations that I should just return to "normal" immediately.  It's as if a switch should just be turned on and I'm completely better because the summer is over and I've returned to teaching my full load of music students.

The fatigue and exhaustion that I've been feeling have been a hurdle to trying to build my physical strength and stamina.  I want to get back to walking daily and at a brisk walk.  Unfortunately, I just don't have the energy.  This adds to my frustration with my body.  I have been feeling unhappy and dissatisfied.  I decided to search the internet to see if there is any correlation between chemotherapy and the "blues".  I was surprised and heartened to find the following link.

It is important to read this article completely as it provides a full understanding of what happens after the treatments are finished.  Society, myself included, think that chemotherapy side effects are all physical.  The thought is that as soon as the chemo regimine is finished, then the body can get on with healing.  I found it interesting that the article indicated that anger and depression can show up even years later after the treatments are finished.  I also found it interesting to read the statistics of the number of people who suffer a form of mental side effects much later.

When I started writing this blog, I indicated that I would write the blog until I was cured.  I've been receiving some pressure from numerous people to shut the blog down because it is no longer relevant.  Yes, I'm a lymphoma survivor.  Everyone who knows me believes that I am "cured". The reality is I am in remission. The lymphoma could return at any time. I remember my oncologist telling me that the first 18 months are the most crucial.  The odds of the lymphoma recurring are higher during that time.  My last cycle of chemotherapy ended on May 19.  This means that I am 5 months removed from treatment.  I will not be deemed "cured" until 5 or 6 years from now.  This blog has been a wonderful vehicle for me to be able to release my concerns, fears, worries and anxieties.  This was the reason I started it and the reason that I am continuing it.  Figuratively, it is like a steam pressure release valve.  As the pressure within builds, I write in my blog and it acts like  when the release valve is loosened and the steam pours out.

I have tried to be very sensitive to my family members and respect their feelings and privacy.  However, as I've mentioned before, our lives all intersect and impact each other.  I decided from the very beginning of my blog that I would share my experiences, thoughts and feelings whether they be raw and ugly or good and affirming.  Unfortunately, being diagnosed, treated and surviving lymphoma along with coping with life struggles is a process which encompasses a wide range of emotions and reactions.  I will continue to blog about my journey to being fully cured in 5 or 6 years.  There most likely will continue to be both good and bad situations and emotions along the way.  My hope is that someone else may one day read my blog and recognize they are not alone in their physical and emotional reactions to having lymphoma and going through the treatments for it.

Friday, 19 October 2012

A Buoy In The Sea of Life

It's been some time since I've been able to write a post.  Life has been hectic due to the fact that I've had family visiting combined with the art of parenting teenagers and working.  It's been difficult to get time to myself and I've realized that I really enjoy sitting quietly with no television, radio or computer providing background noise.  The peace of silence is very precious to me.  It helps calm my soul.  I am reminded of the need to keep myself balanced by nurturing the physical, emotional and spiritual parts of me.  I've not been doing this in the last month.and I find myself full of anxiety, frustration and unhappiness.

As I sit quietly and think about the last month, I visualize myself as a buoy that is anchored with a strong chain while the huge waves of life crash over me, heave me sideways and toss me up and down.  My faith in God is that strong, iron link chain that holds me in place during the storms of life.  I have to cling to my faith that I will be fine after the tempest of these trials.  I pray that all my relationships will not just survive these tumultous times but also flourish over the long term.  As I ponder the thought of a strong chain made up of thick, iron links, I am realizing that each link may also symbolize my cherished activities and "alone" time.  One link in the chain may be my love of gardening.  I've denied myself this activity over the last month because I felt the need to be with the family member that was visiting.  I also wanted to avoid being told "You must slow down", and  "Don't do so much".  Another link in the chain may be my meditation time with "The Friendship Book" and "The Book of Awakening".  Again, due to lack of time to myself and my own delay in replacing my "The Friendship Book", I've not been as consistent in reading the daily readings and taking time to contemplate them.  I've not been tending my spiritual self.  Due to this and the various challenges and crises in the last month, I truly have felt like I've been adrift.  The chain is still attached to the buoy but the buoy has been bounced around much more because the links have not been checked and maintained.  My faith is just as strong but it needs to be nurtured which means it needs to be fed and cared for.

At one point last week, I thought of how the lives of each individual family member impacts each other.  When a member of the family is struggling with his/her own life issues, it affects everybody else in the home.  When a mother is anxious about juggling her various roles as well as the well-being of her family, it affects the children, husband and even the pets in the home.  As this week has unfolded, it has been very stressful for everyone in the home.  On Tuesday, I managed to read "The Book of Awakening" by Mark Nepo and it really spoke to me.  I'm going to quote the meditation exercise as I found it very illuminating and helpful.

"Sit quietly and bring to mind your disappointments of dream and love."

"Breathe gently, and try not to be brought too fully into your sadness."

"Instead, breathe deeply and try to see each, not as a failure, but as a shimmering bead on a necklace your life is making."

"Breath cleanly, and let these gems lead you to the next."

As I just re-read this, it has helped again.  I have been struggling with trying to stay out of the dark hole of depression.  It's been very difficult.  I love the line "try not to be brought too fully into your sadness".  It is healthy to acknowledge the sadness but not to dwell on it.  The quote, "try to see each, not as a failure, but as a shimmering bead on a necklace your life is making", is the moment of true illumination for me.  I see it like the sun beginning to peek out from behind the dark storm clouds.  Each crisis, failure or struggle is like a pearl.  It is dull and rough at the beginning but as it matures, it becomes a simple, glowing orb which is added to our appreciation of life.

My sadness at this time comes from how quickly my body still tires, my feelings of failure as a mother, my unhappiness with my body image, my concern about my relationship with my children and the underlying anxiety about a recurrence of my lymphoma.  My strategies for coping with sadness (before it transforms into depression) are walking, gardening, reading, singing, playing music on the piano or on my flute and visiting with close friends.  Unfortunately, I've been unable to do these things due to spending time with a visiting family member.  I'm also still unable to sing as my voice is very tired after teaching.  I haven't tried playing flute because there is still some pressure and sensitivity in the area of my neck where the tumour was.  I don't want to aggravate it and I want it to fully heal before I try playing again.  When I've tried to play the flute in the past few months, this area of the neck ends up with some swelling.  It was good to visit with a friend yesterday and enjoy a good brisk walk at the same time.  I was able to go for another brisk, long walk last night which seems to have helped my emotional well-being.

Monday, 8 October 2012


It's Thanksgiving Day today.  I have so much to be thankful this year.  First and foremost, I am alive and able to celebrate with my family.

I spent the weekend in Michigan watching my son play more baseball.  The drive through Ontario and into Michigan was beautiful.  The trees are changing colours and the views all along the highway reminded me of a patchwork quilt.  The trees were a mix of greens, yellows, rust colours, dull oranges, bright oranges and briilliant reds.  It was a cold weekend but I had packed lots of warm clothes and as a result was quite comfortable sitting at the ball fields watching the team play Fall baseball.  The team had 3 losses and 1 win.  My son was the starting pitcher and winning pitcher in the winning game.  He pitched 4 innings and left the game with the score at 6-0.  My son always has to be at the field one hour before game time.  Yesterday we dropped him off at the field and went into the nearest town to get some gas and some grocery items.  We discovered that the road the ball field was located on showed up on the main road into the village (this was not the way we had travelled to get there).  So on our way back to the ball field, we turned onto this road.  It ended up being an absolutely gorgeous drive.  It was a narrow road that twisted and curved underneath mature maple trees.  As we drove along, the trees arched overtop of road just like a rural painting.  The colours were magnificent and it was a very peaceful setting.

The fall colours and the beautiful countryside brought up childhood memories of playing at my grandparents' farm during Thanksgiving weekends.  It would be crisp and cold just like this past weekend and then we would go into the farm kitchen where the turkey would be roasting and the various pies (apple, pumpkin, strawberry/rhubarb, etc) would be warming.  The memories of the warmth and the smell of the turkey, turnip, gravy and mashed potatoes are able to make my mouth water even today.   I am so glad to be alive to experience the crisp coldness this past weekend but more importantly to make more memories with my family.

So although there are still challenges, worries and anxieties in life, I can celebrate that I am alive and that the lymphoma is in remission.

Tuesday, 2 October 2012

I Refuse To Be a Victim to "Chemo Brain!!

It's been an emotional week in many ways.  I've tried to be there for my daughter and comfort her as she has been in pain with a broken finger.  I've tried to "mother" her and then respect her wishes to leave her alone.  I've tried to keep her safe and provided a "walking partner" as she chose to walk through an industrial area in the dark in order to meet up with some friends.  I've put up with her teenage attitude and tried to understand what it was like to be 14 as I've extended myself physically to my own detriment.  I've been grieving in my own way the loss of a friend due to cancer.  I've been praying for and grieving for a friend and her family as they continue to deal with the loss of her mother.

Some hurtful things have been said in the last few days and a lot of this comes from lack of world experience.  My husband and I made a choice to try to limit the impact of the chemotherapy on our teenagers' lives.  In hindsight, this may have been a mistake.  I've been accused of wanting to make people feel sorry for me and playing the victim.  I'm going to try to explain what life is currently like as I'm moving forward and getting back to living a "normal" life.

As stated in the blog in the last few weeks, I've returned to teaching privately and juggling my normal responsibilities.  I'm enjoying this return to health and normalcy.  The drawbacks and reality are I still tire easily and I'm struggling with some cognitive issues due to the very real and documented "chemo fog" or "chemo brain".  I'm trying to live with this and move beyond this.  In private moments at home with my husband, we discuss the memory issues because I need his help in remembering to do tasks and to recall conversations that I do not remember having.  I've been accused of "playing up" the chemo brain just for sympathy.

The reality is that I have forgotten appointments but thank goodness someone else in the household has remembered them in time so that nobody has missed any appointments.  Sometimes, I need my husband's help in order to compose a letter or memo because my brain hits a "wall" and I go completely blank and cannot finish the thought or come up with the appropriate words. At that point, I end up with a headache as well.  I have conversations with people and I am often stopping in mid-sentence as I try to grasp the word that fits but I can't remember it.  Yesterday (Sunday) I was cooking some bacon.  When finished, I would normally leave the bacon grease to cool in the pan and then pour it into an old margarine container that I keep in the refrigerator then toss in the trash when it is full.  Yesterday, my mind was not working or thinking correctly and I poured the hot grease into the plastic container.  The thing is I know better!!  And then I did the most idiotic thing and I picked up the melting plastic container to put it in the sink.  The hot grease oozed out onto 2 of my fingers and I got burned.  My husband witnessed all this and even recognized that this is not normal brain function for me.

I write this, not because I want sympathy and the "poor Cathy" thoughts but, because I'm trying to document what life is currently like as I move forward and continue to heal.  Today, I taught a lesson and then had a break before the next onslaught of students.  I realized I hadn't done my month end financial records for September and I was having to start my October records today.  So I spent time working on my month end.  I totally forgot about making supper!  I used to tbe able to multi-task and juggle all these responsbilities in a timely and efficient manner.  I have found that as I have returned to work, I am not able to multi-task like I once did.  Is this because of "chemo brain" or "chemo fog" or is this because I'm tired and my brain is tired after concentrating on teaching.  I don't know the answer.  What I do know is that as I attempt to live life normally, I'm struggling with some cognitive changes.  I refuse to be a victim but it hurts and makes it more difficult to move forward when verbal barbs are levelled at me.

I could choose to be a victim and dwell on all the hurts.  I'm blogging about it tonight because it is helping me to process what's going on and my emotions to it all.   The reality is that words hurt.  I'm recognizing the pain I feel so that I can let go of it.  If I don't recognize the pain it will continue to fester and hurt more.  The words from the last few days have lingered and were interfering with my ability to rest and sleep.  So I've dealt with them now.  I'm putting them down to the fact that not everyone understands and when people don't understand, they make wrong assumptions and conclusions which then translate into hurtful words.

Perhaps this entry will help someone else who is suffering from "Chemo Fog" or "Chemo Brain" understand it is a real side effect.  It is not something that is made up for sympathy.  Hopefully the following link will also help people understand.

I will continue to move forward and live each day to the fullest.  I am very pleased that my ability to sing is slowly returning.  I was able to sing in the choir for one anthem at my friend's mother's Celebration of Life on Saturday.  I normally sing soprano but that is still currently out of my range.  I was able to sing tenor.  Unfortunately, it did tire my voice and I had to leave the reception afterwards because too many people wanted to talk with me and my voice was tiring very quickly.  The good news is that the voice is coming back.  It is still tired two days later but it is getting better.  Yayy!!!!