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