Tuesday, 19 November 2013

My Invisible Fear and Anxiety

For the most part I've been able to enjoy life and live each moment to the fullest since I finished my chemo and have been in remission.  I look back at all my fun activities and deep moments of connection with family and friends in the last 16 months and I can truly say that life is good.  Now here comes the but.  I still grieve for the singing voice I used to have.  This was such an integral part of my identity.  I would sing around the house.  I would sing with the radio.  I would sing in the shower.  I would sing while I played the piano.  I sang all the time.  I can sing tenor now and maybe on a good day, I can sing in the alto range.  But regardless of the day, my throat hurts after singing and there feels like there is a lump of hard something in the throat.  I have returned to singing in the choir at church although I have not been to practice or church for the last couple of weeks because I was busy.

On November 9, we travelled to a dear friend's 80th birthday party.  This was in another city and required staying overnight.  We enjoyed seeing our friend and her family.  It was a wonderful afternoon tea in a century home called Osler House which is a bed and breakfast as well.  The tea was excellent as well as the dainty sandwiches, pickles, homemade scones with jam and clotted cream, the shortbread and the birthday cake.  The afternoon went by very quickly. This lady is the mother of my husband's childhood friend.  We don't see these friends very often any more as we have all moved away.  We went off to our hotel and settled in to relax for a bit before we went to dinner with my husband's friend.  I was very tired which could be explained from the travel as well as the rush to get some Christmas baking done for an early family Christmas gathering on Nov. 16.  But regardless of the logical reasons why I may have a deep fatigue where it is difficult to complete my day, I do have fear of the lymphoma returning.  We did have dinner with our friends and as has been happening for the last number of weeks, I had bloating, gas and stomach pain.  This has been happening after every meal and snack that I have ingested since Thanksgiving.  Again my invisible companions that are fear and anxiety let me know they are with me.  The next day, my husband and I made a short jaunt to visit our son at university and have lunch with him before returning home.  It was so nice to see him!!

As I mentioned, I've been very tired and dragging.  Night sweats have returned with a vengeance.  They may be caused by menopause and I wouldn't be as worried except that I have the deep fatigue which I had in the summer and fall of 2011 before being diagnosed.  These 2 symptoms combined with the new symptoms of belly pain, bloating, acid reflux and indigestion feed the anxiety and fear that hum just under the surface of my consciousness. I've been handling my anxiety by keeping busy.  As I mentioned, I spent the last couple of weeks baking and cooking in preparation for a family Christmas gathering we had this past weekend.  It's been a busy time which could explain my fatigue.  Before I played the piano at the Cancer Centre on Friday, I had packed the van with all the food, presents and our clothing so we could get on the road for the trip to my hometown.  We left Friday at 1:00, picked my son up at his university and continued to my brother's home where we stayed Friday and Saturday night.  This was eight hours of driving.  We drove another four hours (round trip) to the Christmas event on Saturday and then another eight hours home on Sunday. Extended family is important and we really enjoyed ourselves even though my symptoms were constantly with me.

In the midst of the preparations last week, I had a scheduled check-up at the Cancer Centre.  This is when my blood work is done to look for the elevated protein in the blood that would indicate lymphoma.  When I was diagnosed with the specific type of lymphoma on January 4, 2012, that protein was not elevated in my blood work. I was seen by a "fellow" (like a student doctor).  I told him about my fears and hoped that I would be reassured that everything was fine.  He examined me.  What has added to my anxiety is that he was tapping and feeling around my abdomen on the left side.  He spent a fair amount of time in that area which I believe is where the spleen is.  I remember that an enlarged spleen is another identifier of lymphoma.  After talking with me and examining me, he went to confer with his mentor which is the hematologist that I have been assigned to since Dr. Meyer moved away.  I am now waiting for an appointment to be scheduled for a CT scan.  The hematologist wanted the CT scan done this week.  I remember vividly that the waiting and the unknown future feed my anxiety and fears.  It doesn't help that this is all happening just like it did 2 years ago.  It was exactly 2 years ago that I had a sore throat and hoarseness.  The same symptoms are happening again.  So I find myself praying and repeating my mantra "one breath at a time, one moment at a time, one step at a time".  I'm trying to take one moment at a time.  When the fear starts to take hold, I focus on one breath at a time.

I'm also continuing to take each day as a gift.  I fill it with responsibilities to keep me distracted from my fear.  I spend my "down time" with family and friends as well as practising the piano.  Making music is a balm to my soul and helps ease the tightness of anxiety that is taking hold.  Friends and family see me and I look well.  I smile.  I laugh.  I enjoy their company.  I don't want to appear as a neurotic "basket case".  However, the fear and anxiety are there.  There has been an entry in my Mark Nepo book, "The Book of Awakening" that mentions identifying the emotion, acknowledging it and then breathing deeply to release it.  I find this helps because it acknowledges the reality of what I'm feeling and then I can breathe and release it for a little while.  This is especially helpful in these times when I'm waiting for appointments and I have no "news" to share.  I don't want to worry my friends and family needlessly so I carry my fear and anxiety within until I either have confirmation that everything is just fine or that we have the next step.........  My hope is that everything will be fine but my fear is that the lymphoma is returning.

I guess I'm writing all this to remind myself and others that people aren't always what they seem.  We may see people on the street who look "normal" and "healthy" but they may be struggling with demons of which we are not aware.

Saturday, 2 November 2013

Strong Winds and Wild Waves

What a glorious day this has been!!  When I had a check-up at the Cancer Centre in April of this year, I noticed there was a grand piano in the foyer at the main entrance to the Cancer Centre.  I had a strong urge to play and share some music that day with the various staff, patients and family eating lunch at the tables, waiting for appointments or waiting for rides to come and pick them up.  As I ate my lunch that day back in April, I watched the number of people coming and going.  I truly felt a strong pulling sensation to give back to all the staff and employees for all their positive support throughout my chemotherapy treatments and check-ups over the last year and a half.  Since April, I've discovered who I needed to contact in order to have permission to play the grand piano in the foyer of the Cancer Centre.  Last week, I was granted this permission to play on Fridays from 12 to 1 p.m.  Today was my first day of playing some background music on the Steinway that is in the foyer.

As I set out from my home, I was pelted with leaves and twigs from my maple tree in my front yard.  The wind was tremendously strong and vocal as it whipped the leaves off the trees and snapped twigs from their branches.  I needed to hold on to the steering wheel with both hands as the wind buffeted my van while I drove to the Cancer Centre.  At one stop light, the wind rocked my van from side to side as if there were large men shoving on my van.  Once I was parked, I had a 10 minute walk to get to the Centre.  I was literally bent over to make progress down the street against the gusting wind. 

Once I arrived, I got myself settled at the piano with all my music.  You see, I'm not very good at memorizing music.  I never have been.  But....put some written music in front of me, and I can play almost all of it.  I had spent the last week picking out music that would appeal to various types of people.  Some people like classical while others like pop or jazz.  Some people even like rock or country.  I am always nervous performing in front of people.  The thought of being the background music and not the main attraction always is a much better fit for my temperament.  So today, I was able to play music as background music to people eating their lunches, or waiting for appointments or waiting for family members to come down from appointments.  Some people were even just waiting for their transportation home.  This relaxes me as I am not the focal point of the venue.  I played some classical, jazz, big band, children's music, reels, rock and pop music.  I even played a few selections from musicals.  I was acutely aware that the acoustics in this foyer are very lively and it does not require a lot of volume.  I had fun and was able to just enjoy playing without an excess of nervous energy.

At one point, a gentleman stood behind me, listened and watched while I played.  When I stopped playing to change music, he mentioned that he had heard me perform a reel and he thought I must be from the east coast.  I looked at him and noticed that his jacket said "Schneiders Male Chorus".  I asked him if he was from Kitchener.  He indicated yes and I stated that I had seen his jacket.  He used to direct the Schneiders Male Chorus.  I looked at him again and he seemed vaguely familiar.  Through our conversation, we discovered that he used to direct me when I was a teenager in the Ontario Youth Choir.  Talk about a small world.  His compliments on my playing took on new meaning!  This was a man that knew his music and was very well educated in music as well as a fine performer in his own right.  I felt a warm glow within as I realized that my strong urge to give back to the Cancer Centre was in fact also returning a wonderful gift back to me.  I received many other compliments from people who were in the foyer throughout the noon hour today.  Unknownst to me (and thankfully so), my first performance at the Cancer Centre was actually an audition of sorts.  I passed and am now allowed and welcomed to play every Friday during the noon hour.

As I battled the wind back to my van, I was filled with a deep joy.  I am so blessed!!  Although I don't sing very well anymore and I don't seem to be able to play the flute anymore, I am able to still make a difference to someone else's day through my music!  Music has always been such a large part of who I am and I have been feeling sorry for myself as well as lost.  Today's experience was absolutely wonderful and magnificent!

Once at home, I started working on some of the administrative tasks associated with my studio teaching.  The afternoon flew by.  In the late afternoon, a new friend contacted me, knowing that I love the water down at the lake and that I am willing to stand in the wind and the rain to take pictures as I try to capture the lively and angry waves.  She asked if I would like to go with her to capture the roiling water in the high winds today.  I was torn.  I should finish the paperwork I was working on.  But on the other hand, the paperwork will be there tomorrow but the high waves may not be.  So I made the impulsive decision listened to my inner voice to abandon (take a break?) my responsibilities and grab the camera to go down to the lakeshore with my friend.

I am so glad that I followed the urgings to go to the lakeshore.  The winds were so strong that I was being moved around.  A fir tree was bent at a 45 degree angle due to the winds.  The high grasses were almost levelled to the ground as the wind whipped them sideways.  The waves were higher than I've ever seen!  They had to be close to 12 feet high!  My pictures were fantastic!!  They're still on camera because after spending an hour down at the lake, I then exchanged my camera for my van keys and picked up some other friends to go to the local OHL game.  It's been a super, super day!!

November is normally cold, wet and windy.  It signifies Remembrance Day and the beginning of the long, dark winter days.  Today was anything but long and dark.  It was glorious and exhilarating!  I loved  the wind.  I loved the wild waves with their angry looking white caps.  I truly have an affinity with the water in all its forms whether it is calm and still or roiling and angry.  My music was a gift that I was able to share today.  I also shared some friendship and maybe even kinship with a new friend.  How thoughtful it was of her to ask me to accompany her to the lakeshore!  I've been feeling a little blue due to the end of the summer months.  Today reminded me that I can embrace the not so nice days of winter, enjoy them and accept them as a gift.