Last Time Round (my poem)

Last Time Round

It's on my heart, all the time,
I think it almost every other second.
It's not a weight bearing down,
more like a balloon that lifts me,
a bit higher than I was on my own.

Do you see it floating there just above me?
Did you know you have the same balloon?
Just maybe you don't see it,
don't feel it's tug.
maybe you covered it up, but it's still there.

What if this is the last time?
This is the thought that is with me
every moment in all I do
and it's a gift from God, this thought,
like a balloon that tugs at me.

my last time to wrap a gift to give,
my last time to prepare a meal for those I love
Like a carnival ride that is closing down
this is the last time round folks.
Now how good is the ride?

You know the ride will circle around,
at least a few more times.
But you've heard the call,
last time round....
It will stop, sometime soon.

Now how do the trees look, blowing in the breeze?
Will you notice the clouds white in the blue sky,
the child laughing behind you, the father beside.
The sun, it warms your face
and your heart swells as you breath it all in deep.

Did the ride become so much more
when you heard the words last time round.
Now will you let the thought,
"what if this is the last time",
be the balloon that lifts you a bit more.

Teresa Bell
6:30am Christmas Eve Day 2014

Walk with me

This morning I could not sleep...2am get a glass of milk...3am eat some cereal...4am give up and get up.  I make a cup of coffee and peel apples, prepping two pans of apple crisp for today as a surprise for my kids and the staff at work.  Still not sleepy, couldn't think of anything else to do, so I put on my jacket and went into the office.  Driving in, I was thinking of the year end paperwork I could get done.

As usually happens when I am away from my desk, magically there appears an assortment of papers and things to do that was not there when I left.  I start sorting the pile;  magazine that goes into the recycle, bubble wrap package with my name on it that is probably a book I ordered for a Christmas gift.  I open it and it gets more interesting..there is a smallish box and card inside.

My parents always insisted - open the card first.  It's a Christmas card, a lovely card signed by someone I don't know.  Now this is getting good - I'm smiling and super curious.  Taped inside is another envelope.  I open the end and peek in - lined paper with hand writing on it.  Wow!  nothing is more intriguing than that.  I fully focus on the moment as I unfold the sheets and take it in...pretty handwriting, in paragraphs with indents - a true letter.  I begin reading....

I have cancer.  I'm not unique in that.  Many, many people have cancer.  I never meant to share my story publicly, its just kinda happened.  A little here, a little there.  Doors opened and I said yes.  And the sharing of my story has become the miracle I prayed for.  I thought I was praying for a cure, but God gave me something even better.  He gave my life this purpose; he gave me a chance to reach out and help someone else.

Back to the letter....it's from a woman I didn't know before, but I do now.  She too has this rare cancer called liposarcoma.  She too has felt alone, scared, afloat without much hope or support from the medical community, lacking information and yet, she desires to live her life fully.  She wrote to tell me about herself.  She shared that she found my story, my writings and it helped her.  That it gave her hope and strength.

“When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else." ~ Iyanla Vanzant ~ this quote shared with me by Mike and Bonnie Lang on a Survive and Thrive expedition.  

I'm just a small grain of sand in this world.  When I think of the big problem cancer is, it can seem that it needs a big solution.  And so I want to ask "God, why don't you do something?"  There have been and still are so many people who touch my life, each one helping me find the answer to this question.  The song "Do Something" by Matthew West best describes the answer.

So, I shook my fist at Heaven

Said, "God, why don't You do something?"

He said, "I did, I created you"

If not us, then who

If not me and you

Listen here https://www.youtube.com/watch?v=b_RjndG0IX8 
or read the lyrics here http://www.metrolyrics.com/do-something-lyrics-matthew-west.html

I prayed and I asked the Lord to use my life for a greater purpose. I promised I would give the control over to him but that I would need help hearing, knowing, understanding what he had planned for me. I would open my hands and let him place in them the gifts he had meant for me, and it might be hard to accept them.  Because sometimes those gifts don't look so pretty.  This morning these gifts look very beautiful indeed.  This letter, the words she took the time to write and mail, the connection across the miles has me thinking of the ways I have been connected with others through these cancer years, the way it has worked change in my life, seeing how my kids have grown up through it, hearing others say they live a little happier today, knowing without a doubt how much the people in my life mean to me, the trust and love I have for my husband, the chance to feel others support, to give help, to receive help, to walk with others, to take their hand...life is good and God is great.

Dear R, your gesture meant more than my words can express.  I am sorry I have not posted more about the specifics of my cancer care recently, I did not realize that others may be wondering.  I will write more in another blog after I look up the details from my reports.  The short story is I am doing very well.  I have tumors in my abdomen but currently we have stopped them from growing.  I took 5 cycles of Trabectadin in the fall (a chemo given over 24 hours, every 3 weeks) and a CT scan in November showed stable, that there was almost no growth in tumor size.  I feel good, very good.  And I look forward to connecting with you more.

Facing my fears (and the joy of a baby)

A cancer diagnosis causes many thoughts like: Am I going to die? How soon? What am I going to miss? What do I have to prepare for? What can I prepare for? 

There was a time in my cancer journey that I still remember well. It was the day I first faced my fears head on. I visualize a lot, it's how I think and process. I sat on my porch early one morning and mentally opened the door of what at that time was my greatest fear. I had never been able to speak it, out loud or in my head. But that morning I opened the door named "fear" to see what was hidden behind and I looked at it, with eyes wide open. I looked at it, acknowledged it.  I see you, my great fear. I know you now. There it was - "I was afraid of dying too soon".  And once I  faced the monster it didn't have the same hold over me.  Next I thought a lot about why "dying too soon" made me sad. Does the world need me? Well to be honest the answer is no. I would be missed but the world would continue. I realized it makes me sad because of all I will miss. Life here is so rich, so full of amazing moments and events, feelings, experiences, sights, occasions  and I don't want to miss. I don't want to miss a thing. This realization causes one to live with a different attitude. Seize the moments. Don't pass up, walk by, overlook. Appreciate. Acknowledge. Love without holding back.  

I'm thinking of all this now because something happened last week I didn't know if I would get to experience. At 45 years young, I know the joy of having a grandchild. When I accepted that there was no cure for my cancer one of the things I most feared I would miss was knowing my grandchild.  And here she is, in my arms, in my life, little miss Holly Grace!  It's like God reached down into the sands of time, swirled his hand in the future and poured a handful of future right into my life now. Oh, how my God blesses me!  

Be okay with whatever reality is mine, and my river poem

Comments to blog posts are amazing, I am so grateful when people take the time to write their thoughts and share with all of us. And for me, it's like getting a hug from you.  I wanted to share a particular comment posted by Mary on my last blog because in it she has given me an answer to a question I was afraid to ask.  

Mary wrote: "There might be many lessons here. I like to be okay with whatever reality is mine. If there ever comes a time when all I can be is empty, that will be enough for me. My husband will remind me that I have lived a full life, that I have loved deeply every moment I could. My loved ones will embrace me in whatever shape they find me, knowing how I lived and loved them when I had the power to do so. And this is okay with me. We all have limitations. Some of us will go out like firecrackers, some like the puff of smoke lingering after the candle goes out. The challenge is to be okay with your course, because there are some things none of us can control."

What she addressed is the root of what I was afraid of and her reply has brought me a lot of comfort. "Be okay with whatever reality is mine. My loved ones will embrace me in whatever shape they find me, knowing how I lived and loved them when I had the power to do so." I have imprinted these words on my heart and feel they will carry me through any time ahead when I feared I would not be all I want to be. Perhaps I forgot how powerful memories will be, that we don't have to maintain all the time.  There are times to time to rest and let go.  And maybe even enjoy that part of the ride;  like when you paddle the boat hard and then lift the oar and coast, enjoying the view of where you have arrived to.

taken on 2012 Qwyhee River "Survive & Thrive" expedition

I am in the hospital today on day 2 of chemo infusion.  I pulled out my journal from the Owyhee expedition and re-read it.  And here I must note that Mikey and Bonnie Lang are an amazing young couple who host young adult cancer survivors to these expeditions and I encourage any YA cancer survivor to consider taking a trip with them, see their facebook page Survive & Thrive Expeditions.    

Back to the journal entry - this was from day 3 on the river.  It feels like a poem, so that is the format I will write it in, but let me assure you it does not look this pretty in my journal :)

I am like the river

strong, determined to find a path,

but to do so I must be fluid, 

twisting and turning, sometimes seeking the narrow spot.

Knowing when to give in and go around the rocks, 

loud at times, pushing hard like the rapids,

quiet at times, calm, settled, seaming to rest,

and for the most part, gently flowing,

but always forward.

~Teresa Bell, June 16, 2012

As you can tell, the river trips have greatly impacted my life; Kayaking the Owhyee river in 2012 with Mike and river rafting the mighty Colorado through the Grand Canyon with Kaitlyn in 2013.  Here are some of my favourite pics.

Our raft in the rough rapids of the Grand Canyon -  Kinda' like life - terrifying at the time but really exhilarating when you come through the other side.

me and my girl Kaitlyn, enjoying the ride together

yep, sometimes life's like that - upside down without a paddle

a narrow spot can be so beautiful

calm waters on the Owyhee

me and my favourite person in the whole world - taking on the view of the river from Chalk mountain, which we hiked up before sunrise!

looking ahead at all those rocks - gulp!

even the mighty Colorado has it's quiet moments

The lesson from the hosptial bed next to me - flat or full?

I just finished chemo cycle #3, it was went smooth, without hiccup.  I'm home and on my third day of resting I start to rebound.  I'm ready to tell you about chemo cycle #2, not about the chemo but what happened while I was in the hospital that time.

Going up to the ninth floor I had a piece of paper from admitting with a room number written on it, but that was not the room the nurses directed me to.  For chemo #2 I was placed in a double room, my neighbor was already there when I arrived.  When you spend three days in a hospital room with someone you can't help but know a lot about their current situation.  Of course she had cancer, we all do on the ninth floor.  But she was so sick; in bed all of the time, sleepy, in pain, vomiting.  She could not eat, all her nutrition came from an iv bag.  And she was so like me in so many ways...similar age, married for 20+ years, two children pre-teen age.  The nursing staff was preparing her to go home for hospice care.  This lovely woman is not going to see Christmas.  She had numerous visitors who all seemed to love her a lot.  Her husband sat and talked quietly with her.  And so many health care professionals came to attend to her needs.  And yet, the thing I noticed the most was that she seemed emptied out.  Flat. Her eyes did not light up when I asked about her kids.  Her eyes did not light up when her husband came in the room.  Not angry, not sad, not crying.  Quiet and empty.  And that scared me.

I came home and kept thinking about what I had seen in the other bed.  Was her situation a parallel to my life, just on a different level?  Would that be me one day?  Would I become emptied out?  Would my love for life be gone, there be no joy in the everyday gifts?  It made me very angry with God; why had he let me be in that room, why did I have to see that?  Why did I have to look in that mirror?  The woman in the other bed...would that be me? 

Day and night I thought about it. It really unbalanced me.  I didn't want to end like that.  The life all gone before the life ended.  Does it become something you have no control over?  Is there a point when you quit caring and become just am emptied out shell?   Really God! was it necessary for me to see that?

I was still struggling with everything when one morning I was talking with someone at work.  It started with regular business conversation but moved to my trip to Haiti.  I said "going to Haiti fills me up".  And this sparked a conversation that closed the loop on my hospital lesson.  Because it was a lesson, one I am now grateful for. 

So often we are told to seek happiness;  do what makes you happy, find what makes you happy, be with who makes you happy.  So many things make me happy everyday, I'm naturally a happy person.  But what came up in this conversation I was having at work was (and I paraphrase here your words Randy), "it's not happiness we seek.  What we seek is purpose." 

The ah hah moment!  When we strive to live by our values and act on who we were meant we will live with purpose.  Do what we were meant to do.  Each of us was given our own unique set of talents and gifts.  Use them.  Please understand, that as I write I am talking to myself...I am not telling you what to do, I am telling you what I am feeling.  We don't need to be like someone else, in fact we should not!  Be who God destined us to be and take joy in being that person.  I so admire those really smart people who work in labs and figure things out, and at times I think I should study science, to be more like them.  But then I remember that's not my talent and it's okay I don't.  People say to me...I wish I was more like you, always optimistic and seeing the sunny side.  It's just how I am programmed.  Others are programed differently; some more cautious, slow to react, quick to anger.  We need all types of people in our world, it would be so unbalanced if not. So take delight in how you were made.  Your unique self is awesome.  Seek to understand you internal values and how they will drive your decisions and actions.  Go for your destiny.  Be who God made you to be.  Again it was a business meeting that brought this to me, funny how life lessons get put into business settings.  The presenter, Simon, was advising us to identify our core values, because whether we like it or not, our core values will drive all of our decisions, in personal life but also in business.  We were given a long list of values to help us get started thinking.  My top of the list, hands down, is "to help people".  When I do things that fulfill this mission I feel filled up.  When I love on my family I feel filled up.  And I'm not sure what value it would be labeled as, but I love being outside. 


Flat vs. empty.  Can I be filled up to my last breath?  Yes, I think it will always be a choice I can make.  I worry in writing this that if you, or someone you know, is struggling to feel filled with purpose that my words will make you feel you are doing something wrong.  Please don't.  First of all I may be wrong.  Second of all you are not like me, I only write about my life.   I would never want someone reading to feel they should be like me.  I want you to feel inspired to be yourself, to be all you all the time, to love being you, to take joy in it.  And to feel filled up by it. 

Dear woman in the bed next to me; thank you for being a part of my lesson, thank you for being an example to get me thinking and acting upon those thoughts.  I have spent time remembering friends who have passed away from cancer that shared with me their thoughts in those last months; Bernie Gray, Grant in Montreal and Joyce Olsen.  They did not die flat.  Their last days were full of their spirit, them being them. 

And there is my lesson.  I realize I want to live full.  I want to be full right to the last breath.  Living full is a choice.  I don't think full means full of energy, movement or any particular activity.  It's just how you are.  It's how I can be and this gives me hope, peace and joy. 

God Bless
much love
Teresa

Time to go to work on those tumors again

It has taken me a really long time to write this blog…it’s been on my mind but I've been so hesitant to put words to paper.  Why? 

Part of it is my family may read my blog, and I always like to tell them difficult news only once I have it sorted out in my head, or at least partially sorted out.  I try not to make it too messy for them.  As in...”here is what’s happening inside my body and here is what we are going to do about it”...have a plan. 

Part of it was a huge disappointment I had with God.  And who wants to write about that! 

And I guess part of it is this is a chapter I just didn't want to happen and writing about it is so permanent and real. 

But I committed to sharing my story in an open and honest way, as I truly believe that is how I may help someone else.  No one is alone in their journey; somewhere we are sharing the same experiences.   

The reality is that I have technically I have not been without tumors for a long time…but I have been able to ignore them.  July 2012 I underwent surgery to remove them, hoping for a tumor free status but a CT scan 3 months later revealed that we missed one, it was too small to detect at the time we operated.  We watched it grow, slowly, very slowly and February 2013 treated it with radiation.  That worked well for that tumor but, but by summer we knew from the scans that more were appearing.  I am fortunate that they grow slow.  We watch and wait.  It may actually be a medical term; what are you doing about those tumors?  We are using the Wait and Watch technique.   But in March 2014 though my oncologist Dr. Kavan in Montreal is saying we need to act on these.  Dr. Engel at KGH says surgery is very, very risky and difficult, so we go the chemotherapy route.  Dr. Kavan in Montreal and Dr. Gregg in Kingston both agree on the same treatment plan, and co-operate in my care plan –oh glorious that we have come so far in this sharing of my care.  The chemo we are going to try is called Trabectedin.  It’s also called Yondelis.  Essentially it works by sticking to the DNA in cells and damaging it, something about a low groove becoming a high groove.  This stops the cancer from growing and multiplying.  I can receive the chemo in Kingston, also good news.

Trabectedin has in interesting story, it was found in the 50’s and 60’s that an extract from a Caribbean sea squirt had anticancer activity. Further development had to wait many years but in 1984 KL Reinhart went scuba diving off the reefs in West Indies to collect the sea squirts he needed to study further.  Today the drug is derived from a synthetic process and was first dosed to humans in 1996. It’s available to me through a compassionate care grant, which is good as it costs about $7000 per treatment and it's not covered by OHIP.

The treatment plan is all worked out, our day to day plan is worked out. I go for a treatment every 3 weeks and am in the hospital 2 nights per treatment. After a treatment  I need a couple of quiet days to rest, then I am up and running full tilt again :)  We have figured out how to handle work at JB Print, how to handle my animal chores, get Tanner on the bus each morning, how to get to treatment, etc.  So many things to be grateful for and so very little in the way of hardships to cope with.
It’s going to be easy -peasy. 

And here is the truth…I didn’t feel very easy-peasy.  I didn’t want to feel positive and grateful. I wanted to feel mad and sad.  I tried giving myself time; time to process, time to adjust.  I didn’t like what the tumors were doing.  I didn’t like committing to treatment, the schedule and side effects.  We kept talking about how well we were going to handle all the details but inside I was saying “I’m not okay with this”.  What do you do then?  I don’t have any amazing words of wisdom here for you. 

What happened was quite unplanned and by accident on my part.  One evening I got home first, then Paula and Derek (daughter and son-in-law) came home.  Paula is pregnant (she is super sweet so I blame what I say next on pregnancy hormones) and early in our conversation something got said that resulted in a snippy remark from her.  I started to choke up and left the room.  This beautiful girl followed me.  She sat beside me as I cried, cried hard.  I don’t cry often, even in private it’s hard for me to let emotions out like that.  Then I talked.  I told her I just wanted to feel sad, angry and frustrated about it sometimes, to not be all positive and organized all the time.  It makes me feel like what is happening is no big deal and it is a big deal to me.  She listened.  Then we went downstairs and I told Derek the shorter version of it.  He listened.  Oh, how awesome they were to just listen, to not try and fix or correct me.  I felt free, validated and understood…such a relief.  I didn’t need the world to know, just someone.  Then Derek asked if he could pray for me and there was more magic because in hearing his words to God I heard what I was having trouble believing in myself.  Derek spoke of my example to others, my faith, my efforts to use my journey to help others and most importantly how God was giving me role to play in a great plan.  He reaffirmed me in the most truthful of ways – in prayer, cause I know he would not lie to God. 

One night I crawled into Mike’s arms, the safest of all places in my world, and I said “I’m a little bit scared” and he said “I know, me too”.  That was enough for me.  The rest I know.

That’s the truth of it all; being told my disease continues was hard this time.  It was not a new turn of events; it’s the same story of a chronic disease and has been for mine for years and years.  My life is so full of blessings right now; it’s really, really a beautiful life.  It’s all good.  I think I just needed time to get it all out.

There has been more happen, more lessons, more making sense of it all, more realizations and great outcomes.  I think I will post this first, and then tell more in the next blog.  This seems like a good place to sign out.

Please don’t take my honesty here to mean I feel any less supported, loved and blessed.  My life is tremendous.  My family, my husband, my children, my friends, my workplace – it all is more supportive than I could ever ask for.  Each day I count gifts…there are so many.  I love my life. 

Because I was afraid you might still feel I am in a sad place and to assure you I am not  I created a photo album of “things that make me smile”.   Pics that make me smile album

Haiti 2014 - How can I give enough to make a difference?

I have just returned from spending 2 weeks in Haiti serving with a medical mission team.  This was my second time, having gone with the same team last year to the same medical clinic.  Although many elements of this trip were the same, awesomely I learned many new and different things. 

First of all, I wish to express my deep gratitude to those who supported me in my desire to go on this mission trip.  My husband and children for supporting my choice, assisting with fundraising and packing and taking care of everything at home while I was away.  Family and friends who helped me prepare, donated supplies and financing.  Folks I didn't even know who came forward with donations and words of encouragement.  Being kept in your thoughts and prayers meant the world to me.

Secondly, it's important to me to thank my Haiti family.  The team I travelled this journey with welcome me with open arms and unconditional love.  Your support and encouragement lifts me up and makes me believe in more than I ever dreamed possible. 


If you ever see a sliver of a door opening to a mission trip in your life - go for it!  Going to a third or fourth world country allows you to see life from a new perspective and I guarantee you will be surprised by what you learn if you go with an open mind.  It's good for your soul.  There were many lessons and experiences for me this trip; God was so good to me.  I could write for days but I won't :)  however there was one message that was/is strongly on my heart and I would like to share with you now.  It's a question that played in my mind over and over. 

How can I give enough to make a difference?  In a country with a population of 9,893,934 we go for 2 weeks, with 29 suitcases of supplies and the knowledge we have the ability to treat about 1000 people.  It can seem like a very small drop in a large bucket.  My "sticky gut" condition starting giving me trouble the moment the airplane touched down in Miami and continued to hamper my physical abilities the entire mission trip.  We saw cases we couldn't give complete treatment for and we saw 100's of people in the village we didn't have anything for.  How is this making a difference?

It's a question I ask myself not just in Haiti, but here in my regular ole' Canadian life too.  How can I give enough to make a difference?  The answer came in bits and pieces over the mission trip, but I would like to give specific credit to a daily devotion I received from Ann Voskamp  http://www.aholyexperience.com/ann-voskamp/

I shared this one morning in Haiti, with our team at our 6:30am roof top meeting, as the roosters crowed, the sun shone bright, the mangos dropped from the trees and Haiti buzzed alive around us.

How can I give enough to make a difference?  What God has graciously given us is always enough to be abundant grace for someone else.   

In Mark Chapter 8 we read the story of how Jesus Feeds the Four Thousand 

8 During those days another large crowd gathered. Since they had nothing to eat, Jesus called his disciples to him and said, 2 “I have compassion for these people; they have already been with me three days and have nothing to eat. 3 If I send them home hungry, they will collapse on the way, because some of them have come a long distance.”  4 His disciples answered, “But where in this remote place can anyone get enough bread to feed them?”  5 “How many loaves do you have?” Jesus asked.  “Seven,” they replied.  6 He told the crowd to sit down on the ground. When he had taken the seven loaves and given thanks, he broke them and gave them to his disciples to distribute to the people, and they did so. 7 They had a few small fish as well; he gave thanks for them also and told the disciples to distribute them. 8 The people ate and were satisfied.

Haitian fishing boat

Jesus was moved to compassion - a Greek term meaning "that his insides turned over".  Jesus saw the needy and he was moved to compassion.  His insides turned over.  Compassion isn't a vague sense but a feeling so strong it causes  your insides to turn over, it shapes your body and life into a response. 

There will always be people who like the disciples say "how can you feed all these people in the desert?".  "How can I find enough in my own desert to feed one more?".  "How can I" often translates into "I can't".  Instead invite in all kinds of possibility with "how can I".  Jesus always answers our scarcity question of "how can I" with the abundant question "how much do you have".  Out of how much you have God can make enough to give.  The disciples answered "seven" and it was enough.  What God has graciously given you is always enough to be abundant grace for someone else. 

 

In the middle of the desert Jesus picks up just seven loaves of bread and gives thanks - he makes what he has into thanksgiving - and this is what makes him the bridge from God's generosity to peoples scarcity.  This is our God, he does not run out.  He simply invites us to be a part of running the miracles from Him to them.  God is in the generosity business and we get to be his delivery men.

 

What God has graciously given you is always enough to be abundant grace for someone else.  Giving thanks for what we have is the first step to building the bridge between what we have and peoples needs.   

 

I have been blessed with much.  My desire is to give thanks, continuously, for my blessings and the grace in my life and become a bridge between God's generosity and peoples needs. 

You can follow the full team blog at http://saskhaitimedicalteam2014.blogspot.ca/

my new job in Haiti - dental assistant - this was definitely a challenge
and learning experience for me

 

the gift of one hen makes a huge difference in this grandma's life

washing & bathing in the streams of water in Haiti

Elva visiting with her sponsored child Stephanie

 

Connections, they give meaning to everything

I think we probably have all asked ourselves at least once or twice - is there a purpose in all this?  Be it cancer or anything else in life that has challenged us, it seems natural and common to ask if there is a reason for it. Tell me there has been purpose to it all please God!  Give the struggle meaning.

Lately I have been vibrantly aware of an amazing web of connections...connections between people.  How each interaction, each connection, leads to something good.  Little connections; fleeting and brief.  Big connections; dramatic events and long spans of time.  Connections; everywhere, all the time, all important, all life changing. 

I am counting them in my journal...listing these gifts blessed to me in my life...these connections and interactions with others that bring joy, hope, satisfaction, understanding, learning, perspective, thankfulness. I could write for days and days of the many connections that have come into my life because of cancer.  People I have met, things we have shared, everyday miracles witnessed and the constant reminder of the goodness within us.  That human inner spirit that wants to help, share, heal.

I have been so blessed by others in my cancer journey;  people who helped me and invited me help them, those who shared their story with me and asked to hear my story, I have seen healing and been healed.

Survive and Thrive circle time in the Grand Canyon 2013

Recently it has been on my heart to help others, as I have been helped.  The Survive and Thrive expeditions I went on in 2012 and 2013 changed my life. These were like support boot camps for cancer survivors. Not only did the trips help me to heal emotionally but I also was blessed to see first hand transformation in the lives of other young adults, as together we opened up, shared and supported each other in getting our lives back on track.  It is my desire to see this type of support available in my community so I am venturing out, way out, of my comfort zone and initiating the start up of a young adult cancer support group.  We are calling it The Fight Back Club.

I started talking about it,sharing the desires on my heart and vision in my mind for what the Fight Back Club could be.  And miracle after miracle have followed - person after person coming forward with offers to help - help with there time, their resources, their knowledge.  Here we go, into new and uncharted territory.


May I ask something of you?
*if you live within driving distance of Belleville plan to attend our official launch of The Fight Back Club  which is a showing of the documentary film Wrong Way To Hope on March 31, 2014
*tell everyone about both the Film Launch and join our mailing list for The Fight Back Club

Check out:
Fight Back Club - a young adult cancer support group
Survive and Thrive - the expeditions
Wrong Way to Hope - the film

Life lessons are like fireflies at night - flickering bright, multitudes of them, so many I can't take them all in.  Oh but the joy in trying, to run through life, cupping these moments in my hands.~ Teresa




 

Hospital time and the gift of counting gifts

Almost 2 months have passed since I lasted posted.  I am not sure why I have avoided my computer...there was Christmas which was family time and the fact that our home computer has been on the fritz...but I also think there was some recalibration going on inside me.  Now I feel like writing :)

So much to share.......it will come out as chapters over the next few days in some sort of order (I hope).


my Facebook Birthday Post Dec 10, 2013 
I have been given many, many gifts in my life. I am a very blessed person. Recently I learned about counting gifts...counting the gifts God has given me day to day. This in itself has become an awesome gift...this "counting of gifts". This morning, on my 45th birthday, I awoke and it was one of those awesome awakenings when your mind is immediately alert. I started counting gifts.....
1) the weight of my body on the soft mattress
2) the presence of my husband next to me
3) the warmth of my blankets
4) the knowledge my children were all sleeping in comfortable, safe places
5) my body does not hurt anywhere at this moment
6) my body will have strength to rise out of bed
7) this is my tenth birthday celebration since being diagnosed with cancer
My heart feels peace, my body feels comfortable, my family surrounds me, my God loves me and I have been given yet another day to play in this awesome playground he created for me. Life is good!

To the Hospital
Just before my birthday I had a "medical event".  Sticky gut got bad, really bad.  It started out Friday Nov 29 in the afternoon as pain in the center of my stomach.  I finished up a bit early at work and headed home where I crawled under the blankets on the couch.  All plans had to be cancelled, which frustrated me.  Tanner came home from school and this makes me proud and breaks my heart at the same time...he recognizes I am sick and he knows what to do.  He asks if I need a drink of tea, or a blanket?  He hangs out in the same room as I am in, he reads or plays a game but he stays close.  When I vomit he does not flee the room..he is the only family member who can hang in for that!  Again, he asks if I need anything; a cold cloth, a glass of water.  Family comes home.  They go about their evenings, a little bit around me and a little bit on their own.  A blend, keeping me involved in life but letting me do what I need to do and not asking anything of me.  Everyone goes to bed and I stay on the couch.  But as night came on I realized this time it was different.  The pain was intense!  not much compares to labour pains but this did.  To be medically specific in case you want to know..nothing was moving in my gut at all (vomiting brought up nothing, it was like a trap door was shut at the top of my stomach and nothing was moving down either).  At 2am I woke Mike up with those dreaded words "I need to go to the hospital".  

Quinte Healthcare - Belleville General Hospital now has an amazing emergency department and I have only good things to say about the care I received there.  I was seen in triage and immediately escorted to a room within ER.  I had the good fortune to be seen first by Dr. Istead, who has seen me on most of my trips to ER so gratefully, I did not need to explain much.  IV fluids, pain medication and a chill pill were the first order of business.  Oh, so grateful.  Blockage within my bowel was certain but how bad was it?  I was taken to Trenton for a CT scan (Belleville CT was not available).  Awesome care. I was bundled up and accompanied by an ER nurse to Trenton, taken by Emergency Transport.  I was so grateful for that nurse, who stayed with me the whole time, as I could not speak for myself.  Between the pain and the medications I was fairly incoherent.  Even now, the events of the night are all mixed up in my mind.  Back in Belleville the scan was reviewed and a full blockage was evident.  I was then introduced to something new - an NG Tube.  When the nurse tells you something is not going to be pleasant you know you are in for a real treat.  The insertion of the NG tube was shocking and I will admit - awful.  However, it also was the key to relieving the pain.  You can google the details but a Nasal Gastric tube goes up your nose, down your throat and into your stomach.  Then gentle suction will take the gas and fluids out.  It hurts going up your nose, it makes you gag down your throat but oh, the relief!  I am sharing some pics because this blog is all about honest sharing.  At this point I was feeling pretty low.  I hurt, I was tired, I was thirsty and I was fearful.  However, my family rallied around me and got me through. My sister showed up at the hospital and stayed with me through all the ugly stuff.  My husband is a rock, doing what needs to be done and never letting me down.  My kids all stayed in touch.  Surgery seemed eminent and BGH knew I needed to be in Kingston for that...so bundled up, along with my nurse and off to another emergency room.  Kingston General emergency  was chaotic and I was grateful for my nurse who took me through all of it and didn't leave until I was safely settled in a bed in a quiet space within the ER.  I was admitted, and moved to a bed - I ended up on the orthopedic floor so it was quiet..my room mate was a sweet elderly woman who had fallen.  Me, I had my NG tube.  Now something to know about an NG tube...it whistles all the time, out a tube that sits next to your ear.  Between the whistling and the constant pressure of the tube in my nasal passage I had a pounding headache.  But I started to improve.  My body was healing itself of the bowel obstruction and with the NG tube relieving the pressure in my stomach I was feeling much better.  By Monday I was able to eat a bit, have the tube removed and get walking the halls.  Tuesday I went home.  Actually what the report says is "Ms. Bell left hospital on Dec 2 without being assessed for discharge."  Yep!  I left without being discharged.  But not in a bad way...I talked with the nurses at length and they agreed I was doing very well.  The problem was the surgeon who admitted me was extremely busy in ER and was not available to come assess and discharge me.  I really wanted to go home, eat my own food and sleep in my own bed.  

To be honest, sticky gut is not what the doctors call this condition :) these are bowel blockages, caused by the distress to my body from past surgeries. Scar tissue is sticky and stringy and it winds around my bowels.  The mesentery wall is badly damaged.  My doctors are not surprised; it was to be expected and simply is a side effect of multiple surgeries.  

Here is the Magic
The thing that medical care could not do for me but God did.  Grace.  Fierce grace.  Yet another chance to realize the gifts in my life.  Recently a friend introduced me to the teaching of Ann Voskamp through her book One Thousand Gifts.  I had thought of myself as a grateful person but this book opened my eyes to a whole new level of gratitude.  I won't begin to try and tell you what the book teaches, I encourage you to read it for yourself but I will tell you it has given me an altered perspective on everything.  I makes lists all the time now, lists in my mind, lists spoken out loud, lists written in a journal...lists of gifts in my life.  Small gifts.  Large gifts.  See the gifts.  Feel the gifts.  Recognize the gifts.  Acknowledge the gifts. Gods fierce grace in my life.  Give thanks, receive joy.  

In the hospital I found myself listing gifts.  Like a ticker tape in my head....Mike's hand holding mine as we walked into the hospital, always strong, always with me....not having to wait in triage....ice chips on my parched throat, cool and soothing....  I find it hard to pray in these crisis moments.  I think I am afraid I will ask God for something, something that is not meant for me and it won't be mine. My fear is feeling disappointed in God. But listing gifts connects me with God.  I know he is there with me, that he holds me in his hands, I know this because I count his gifts....honest nurses who tell you when something is going to hurt....my sister showing up in my emergency room like she always does....the doctor who remembered my case from before....  Life can feel dark in the hospital and time can pass very slowly.  Counting gifts fills the space with goodness.  I was transferred from emergency to a room in the middle of the night.  Time was mixed up, I was exhausted but not sleepy.  I believed surgery was imminent, waiting on doctors who were discussing my case.  Listing, the ticker tape running....the nurse who settled me into bed, getting warm blankets for my chilled body and tucking them in all the way around me...a male nurse who surprisingly knew exactly how to tuck blankets around you and right up to my chin...oh the comfort....  As I improved the list continued....the nurse who listened to my frustrations with the resident visit....who agreed I was ready to have the ng tube out and made it happen...hot shower and fresh gown....family taking care of family at home....  And then I was back home.  I wrote down what I could remember of the listing but it does not matter so much that I have it in writing as that I counted the gifts at the time.  Taking time for thinking, settling in, absorbing, letting go.  Most of all, the gift of knowing giving thanks brings more grace.

Some hospital stay photos...

Emergency room, NG tube in, lots of pain, lots of drugs

2 days later, tube just removed, feeling much better

first meal....liquid, liquid and yes, more liquid

Definitely feeling better, playing around with how to fashionably wear a hospital gown.  I like this look - pant to cover my but so I can walk the halls for exercise.

first solid meal, ick! need to get home