Clinical Trials - what I have learned so far.

trial¹

/ˈtraɪəl; traɪl/

noun 

1.

a.    the act or an instance of trying or proving; test or experiment

The doctors say “you should consider clinical trials now”.  Seeking clinical trials as a treatment is indeed a test I am learning.  It’s not easy nor is it simple.  You don’t simply go to the doctor and say hey, hook me up with a clinical trial.  It’s a whole new beast.  So here I am putting on my boots, picking up my shovel and getting down in the trenches to dig for a clinical trial.  I’m not alone though.  I am grateful for those who are jumping into the trench with me.  Help is coming from others who have been this route themselves, sharing their experiences and gained knowledge.  Help is coming from those who have knowledge of the science or the process.  But still, it is hard digging. 

Practically speaking, this is where I have gotten to so far.  I have learned:

1. There are a couple of national databases of clinical trials and this is a good place to search.  It nets you a long list of potential trails, based on the search criteria you ask for.  It gives you a summary of the clinical trial, location and current status.  But what do I do with this long list of potential clinical trials?  This is where it gets more difficult I have discovered. 
2. You don’t take the list to your doctor and expect him to spend the hours it would take to read through them all and advise you on the best choices (I have learned).
3. You don’t go to one hospital and expect them to inform you of, connect you to or advise you on all the clinical trials you may want to consider (I have learned).  Each hospital will tell you of the clinical trials going on within its walls.  But it’s like shopping for a new dress…you have to visit each store on its own. 
4. Clinical trials are about research and collecting data.  They are not about individual patient treatment plans.  Makes sense.  But from the view of the patient, this has an impact.
5. Seeking a clinical trial takes a lot of time and energy on the part of the patient.
6. Clinical trials – my opinion – seem to be like shooting an arrow in the dark.  Some will hit the target.  Many will not.  You roll the dice, you take your chances.
7. New treatments only come about by patients being willing to participate in clinical trials.  It is a pay it forward action.

And so the next chapter of my cancer journey has begun. 

As always, with much love,

Teresa

It’s raining…thank God it’s raining…

I woke up this morning early, 4:30 am is my version of early.  I think a combination of not being able to sleep plus a desire to do some journalling inspired me to leave my bed.  I was feeling too hot so I stepped out on the deck for some cool air and was surprised to feel mist.  Could it really be raining?  It’s been so unseasonably dry, the grass is turning brown and the hay is not growing – very unnatural for the month of May.  Dry and parched.  No growth.  

With growing excitement I put on my shoes and went out to stand in the open garage door.  Yes, yes indeed, it was raining.  I think I was holding my breath as I took it in.  Wind blowing, small raindrops gently falling.  Then I saw the evidence….puddles!  It had been raining for a while, perhaps all night.  Eyes closed, now taking deep breaths, to take it all in.  The sounds of the birds, pleased with the rain.  The trickling of water off the roof.  I think I could hear the earth drinking up this much needed moisture.  Oh the thirst that was being satisfied.  

I put on my jacket and walked more, wanting to relish in it.  It’s dawn, there is light but no sun yet, I can see but it is all in grey tones.  The world is dark, moist and damp….a place where things can grow again, a nourishing place.  Deep breaths, good air in, stale air out…..hear the birds, hear the wind blow the trees, feel the cool damp air….breath deep, cool air in, warm air out….seek, accept, grow and be at peace with it.  Open my hands, palms up, fingers slightly curled and relaxed, arms reaching out a bit….receive the rain because it is good.  With it comes refreshment, nourishment.  

God is kissing my forehead, looking down on me, with me.  He knows how hard it is and he asks me to trust him with my heart.  Trust him with all the things I want to care for, I want to nurture and keep under my wings.  The things I desire to see cared for.  I believe God is telling me I can trust these things to him.  

Tears run down my cheeks as I write because I want to remain here, right here with my feet on the ground and my face turned to the sky….and I want to stay in the garden of my life.  I want to watch it grow, take in the beauty of it, walk with my hands touching the leaves and my eyes seeing the newness. 

How do we find peace in the hard, dry places? Perhaps the secret lies in the rain. 

Evidence of the rain, that is falling and has fallen through the night.

Looking at my hands this morning, holding them up to receive what is raining down.

I hear all the different sounds of the birds.

The hard edges

Being at a seeking treatment phase of my disease means I am spending a lot of time thinking about the cancer that sits inside me.  Reading about research and clinical trials and trying to understand the science.  Asking opinions, reaching out, reading, reading, reading.  

But it also causes me to seek treatment for my heart.  To feed my soul, to find answers or at least some understanding.  I am seeking peace with this hard edge of life.  And there is good stuff.  Without this disease, without the ball of unwanted that sits in the core of my body, would I seek this nourishment for my soul?  Would this quest of enlightenment and understanding exist?  These past weeks I have sought to read the words of others; gain wisdom from their stories.  I have thought a lot about my heavenly Father.  I have looked back on my yesterdays and at my today with different perspectives.  And it enriches me.  How is that?  That this awful disease that lives within me, unwanted, brings about so much wanted change? 

I am reading the words of Kara Tippetts, in her book The Hardest Peace.  I thought the book would make me cry.  So far, it has not.  I read the book, I read her words, knowing that she passed away just a short time ago.  I am reading the words of someone coming to grips with her diagnosis, writing with stark honesty of her days living with a cancer she knew would end her days, knowing that has become her reality.  She is no longer here to tuck her children in at night, or to kiss her husband in the morning.  What this book does is give me new perspectives, an opportunity to grow myself.  I see what a mess I am, and that it’s okay.  I see the hard edges of my life and I realize that it’s in those hard edges that the best has come from. 

The hard edges are still very hard.  But my fear of them is lessening.  Those hard spots can become the sweetest spots, if we will allow it.  If I can open my hands to them.  In those hard places we see the most love.  We see the best in each other.  Being there with someone in their worst can open the door to so much of what we are seeking.   Even though we don’t want the worst and we spend a lot of energy avoiding the hard moments, it is those moments we avoid the most that bring us the most.  Or they can, if we open ourselves to it.  This is the space grace occupies.  Where the fabric of life is torn, and God’s light can shine through, it’s in the rips and tears that the grace is found. 

Thank you Father in Heaven, for your patience with me, for never giving up on me, for loving me always, for spoon feeding me the lessons I seek but then resist.  Thank you for the abundance you have poured over me.  I am so blessed.  Today Lord I ask you to help me see the beauty and possibility in the hard spots.  And even more, I pray for your help in sharing with others so that we may experience together your grace in those hard edges.  Thank you for the gift of your son Jesus.  You gave the hardest gift to save us.  I know I need to seek more understanding of Jesus, draw closer to him.  I see that in others and I know it’s still missing in me.  As you know Lord, I am kind of a mess, and yet, I know you love me despite it all.  Thank you for the grace you pour over me.   Your child always, Teresa.  Amen.

Even storms have a purpose

so the cancer grows, bit by bit, it grows.  The reality is it's never really stopped growing for years now.  But we can forget about it for periods of time.  And that's good, it's good to have a break, good to focus on all the others things that are a part of life.  Today the doctor advises me to think about treatment again, to not let it go unchecked for much longer.  This news is not what I nor people around me wanted to receive.  We want life to be rosy and lovely all the time.  Of course we do.  But why?  Why do we not love the storms too?  Storms have much purpose when you stop to think about it.

I was in the barn tonight, cleaning stalls, brushing the horses, listening to them munch hay....I was thinking about how life is so much like the weather.  We so look forward to the clear days, when the sun shines and the wind gently blows?  Or the calm night when the stars glow bright.  I pushed the wheelbarrow outside to discover that a storm had blown in.  Gone was the mild night.  The rain pelted my cheek and the wind swirled my hair.  At first I tucked my head down and hunched my shoulders.  But then I lifted my chin, and once again felt the rain hit my face and the wind tussle my hair.  Sure it was rougher and harder but it was not actually bad.  

So tonight, I lift my chin to feel the rain, to love the storm.  

This is not me in the photo, but I love how she is smiling up into the rain.

The night before a doctor's appointment.

It's bedtime the night before a doctor's appointment...I've already seen the test results.  Yep, I still have cancer.  Yep, it's still growing slowly.  Do I think about cancer often?  Yep, every single day, sometimes many times a day.  What do I think about?  Everything.  But tonight I find myself in a strange place with my thoughts.  I realize I am reminiscing.  So much has happened.  There has been so much time spent on my cancer...thinking and talking about it, planning, attempting to control, seeing doctors, going for treatment, going for tests, thinking about it some more.  And in the midst of all that time spent on cancer a lot of life has been lived.  In 2008 I was told 2 more years, and I went to Mexico desperate for options.  In 2010 it was a heavy chemo regime in Montreal.  Yet here it is, 2015.  In a few weeks I will celebrate 25 years of marriage with a man has hung in there with me honoring all his promises; for better or worse, in sickness and in health.  The baby boy who grew in my belly at the same time as the cancer is becoming a strapping young man with wide shoulders and a smile that always reaches his eyes.  Our daughters are no longer children, they are both adults making their own journeys in life, women whose friendship I now cherish.  There has been the hallmark occasions; the birth of a grandchild, attending graduations, weddings, trips and the list goes on.  There has been many moments that are less grand in description but perhaps more grand in impact; a conversation that touched on subjects rarely spoken of, a walk in the woods, an early morning chat over coffee, a moment with a stranger, a smile that said 1000 words.  Things that happen when you are open to receive and grateful for the gift.

The Lord has blessed me with so much, given grace and then more grace.  I've done a lot of things I am not proud to speak of, taken much for granted, been careless with my gifts and my time and yet still, I am abundantly blessed.  "a wretch like me"

For all that has happened, all that I have gotten through, I feel unsettled tonight.  I can read the test results and I know the cancer continues to creep.  In me there is still a desire to plan my life.  What treatment?  When?  For what result and for how long?  Despite all I have learned about letting go, I admit today I yearn for a concrete plan.  And that is not possible.

This is not a typical post I know.  Usually I have a specific message to share.  Not today.  Today I simply share that I feel a bit lost.  Not unhappy.  Just a bit lost in the fog.  Perhaps my life in general is like that...work, home and health...all are foggy and unclear in direction at the moment.  It's like that in the mountain pass at times...when you are passing through a narrow spot, it can be hard to see the path.  It's okay, it's just a place I am passing through. (more on my thoughts on narrow spots in past blog post Weed the garden...how God helped me to handle this rough 

I write all this because I feel connected with those of you who have walked this journey with me in your own world...sometimes you have written to me and told me of the things we share.   You have let me know how our lives connected.  Thank you for that.

with much love, Teresa

First chemo day, 2010 - Jewish General in Montreal

Tanner and me waiting for the bus - no hair Mom - fall 2010

With my girls, Christmas 2010 - no hair, no care - much love.

I can live with this

I have my CT scan report in hand.  I have read it top to bottom, bottom to top and all in between.  It's a good report, Mike and I give it a B+.  Not the very best it could be but certainly no where near the worst.  A little bit above average we think.  It uses words like slight, similar and mild.

Towards the end of the report it the final sentence and it reads on my Jan 7, 2015 test as follows:  "slight interval growth in abdominal retro-peritoneal and pelvic masses".

That's it...cancer is still there.  Getting a wee bit bigger over time.  And here's the thing I realized after reading the report....I find myself thinking "I can live with that".  At first I didn't realize the impact of that thought, and then there was an ah ha moment - there was a time when my first thought would have been "Will I die from this?"

2015 is starting differently for me.  I find my calendar is filling up with ambitious plans.  I didn't mean for this to happen, it's just the path I seem to be on.  Doors keep opening up.   There was a time when my intentions were to simplify, do less, make it easier for when I was sick.  Ha!

We have sold our house after only 3 showings and 6 weeks on the market.  So we are moving :) purging, packing and embracing building a new home for our family.

We decided not to travel anywhere this winter but then a call came asking us to join a mission trip to Haiti.  So we are packing bags and going to serve in Haiti in March.

New opportunities keep cropping up.  2015 is not going to be a year of decreasing.

Yep, I can live with cancer.  Live life full and wide.  Thank you God.

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