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.