Being in the light, before I can see the sun

It's Jan 8, 2016 and I am sitting in the darkness of the early morning, (on a beach in Mexico to be exact).  I have been abundantly blessed with a week of vacation with Mike, Paula, Derek, little miss Holly, Kaitlyn and Tanner.

I got up early this morning as I wanted to watch the sun rise over the ocean.  At 6:30 am it is still dark.  I sit quietly; listening to the waves, listening to my heart, seeking my Lord's presence.  Striving to be in the moment, not reviewing the past, not planning the future, just sitting in the here and now.

This is what I wrote:

I sat in the dark.  I could not make the light come.  I could only wait, staying aware.  There were steps. At first looking out over the ocean I could only see darkness.  In time I realized I could see where the beach sand met the ocean water.  Some definition.  Then more clouds became available to my sight and a sliver of moon.  They had been there all the time.  It's not that they just arrived, but my ability to see them changed as the light arrived.  And yet, I could not tell where the light came from.  It just was.  Now it is fully light and yet, still, I don't see the sun.  But I do see it's effects in the view in front of me.

In time, a glorious red ball of sun rose up over the horizon and into the sky.  It was just as beautiful as I had anticipated.  And yet, it is the lesson of the light that I think was the reason I was on the beach that morning.

feeling such abundant grace, love and gentleness around me,
with peace and hope,
God Bless,
Teresa

Being honest about a tough time

 I continue to write this blog because of what I learned on a Survive and Thrive Expedition spending 8 days with an amazing group of people who shared the common experience of cancer.  I learned that when we share our story in an open and honest way we can help someone else in their journey.  And we also can help ourselves. I wrote this blog three months ago,but did not post it.  It is like opening my heart red raw and bare and I am afraid, but I feel strongly compelled to share it now.  It is a part of my journey, and if it's a part of my journey it may also be a part of yours.  And maybe God wants me to tell you it's okay.  

This blog is never to give advice, it is only to share my journey so that you may take from it what is good for you.  Do not fear for me.  I have healed a lot since I wrote this.  A few days after I wrote this I shared it with someone close to me, someone I trusted and felt could bear hearing my words.  And I sought professional counselling.  And I gave myself time and gentleness.  

"When you come to the end of yourself, that's where something else can begin."  Kara Tippetts

I wrote this Oct 15, 2015.  I no longer feel bent so low but I want you to know it has turned out to be an amazing place to go from.  It constantly amazes me how the complex paths in life can open our eyes to the amazing and wonderful.  It's like light that was always there but we did not realize it. 

so here goes......direct copy and paste from my journal...

I need to talk about what I’ve been going thru but it’s hard, it’s more personal than anything I have shared out loud before ever.  Much has happened and I want to catch up my blogging.  The short story is I became very sick over the summer, spent the month of July in the hospital, and then August and September recovering at home.  I am still in recovery mode I recognize now, but it’s a complex recovery, not just muscle and skin.  I will write about the summer hospital experience in another blog, with lots of medical details to share.  But today, today I must write about my heart and mind and this place I have never been before.  It’s hard, because it’s things I have kept so deep within myself.  Some who know me well and love me strongly have seen a glimpse of it in my eyes I think.  And I am only writing of it now because through this I struggled to feel God, I felt I could not hear him and I was lost.  But his grace broke through my barriers, he found me and loved me.  And now I should share because the telling of my story may help someone else.

I’ve lost my place in the world.  I used to feel confident in my positions…wife, mom, business partner, volunteer…I contributed, I did things, I moved ahead, accomplished, and people counted on me.  I now feel inadequate.  It’s a short sentence and just one word, but to just speak it in my head brings tears to my eyes.  Inadequate.  Feeling inadequate has pulled the foundation out from under me. 

Yes, part of it is not being able to perform as I used to.  I am not a powerhouse at work anymore, I don’t think I could pull off even a family dinner or if I did it would take me a whole week to do it.  Things don’t rapid fire in my brain anymore.  Women do this…we are like zing zing all over our brains with thoughts and I don’t have that now.  I think, but of one thing at a time and often I lose the thought before I can bring it up.  My world is lists and reminders of what I want to get done or else I would simply forget day to day.  Physically things are different, and I don’t understand my body.  Sometimes it feels strong and able.  Often I am short of breath, lacking muscle strength and worst of all just plain tired.  Sleep eludes me. 

But the real struggle is deeper than muscles and brain cells.  At times a sadness just wells up in me, like a bubble that starts at the base of my ribcage, forces it way up the center of my chest, into my throat and finally the pressure leaks from my eyes and exhales thru my mouth.  I hang my head and question “what, what do I do now?”  And there is no answer.  Just a hollowness.  What is this?

What is this?  It could be stress, my way of processing the trauma my body went through over the summer.  It could be change; that my life is changing and I am not good with change that I don’t direct.  It could be that I am not sure of my direction in life, that this will take time to sort out. 

I’ve lost connection with people.  Some very close to me and this hurts the very most.  It’s a deep knife in the gut when I think on it.  How do I find the connection again; feel close and comfortable, with purpose, bringing something to the relationship?  How do I not feel inadequate? 

I have been given so much through these past 4 months.  Given so much love, care, thoughts and prayers from those around me.  And yet, I don’t know what I have to give back.  It’s not enough to just be present in their world…for me it’s not enough…how do I find my way back to fullness?

What am I missing in my seeking?  Is it time and patience?  Is it something more than that?  Am I seeking the wrong things?  Am I letting life stuff (work, bills, houses, etc) take over who I am?

There are days that feel very deep…sinking deep into something that I can’t pull out of.  I know it’s a place that is wrong for me. 

But this week, after one of the hardest days, a vivid rainbow appeared in the sky, and later I saw one of the most brilliant sunsets ever.   And I felt God again.  I felt that his love has always been there, I just lost my ability to accept it.

There is a massive lesson in all of this that I am in the process of learning.  I’m at the awful part, where I don’t have a clue.  I’ve just assembled the parts of the problem, and maybe not even that is done yet.  Usually I write once I have sorted it out, but this time I am sharing at this stage (sorry, not true, I did not share til now that I have moved on from this place in my journey, this written today Jan 16).   It’s not pretty.  It’s not uplifting nor inspiring.  It’s just honest. 

Do not fear for me.  Do not feel you need to lift my spirits or cheer me up.  Just walk alongside me.  Be honest.  Be real.  Most of all be kind to each other. 

much love,

Teresa

Clinical Trial try #2 - MG1 Maraba/MAGE-A3

Trial - as a verb means "test"

In September I learned there was another Clinical Trial being offered in Canada that I would qualify for.  It was the Maraba Virus and you can read the official details at https://clinicaltrials.gov/ct2/show/NCT02285816

The Maraba virus used in this trial is a rhabdovirus and has this bullet-like shape. It was discovered in sandflies around the Maraba region of Brazil, and has been engineered to seek out cancer cells and do two things. As an oncolytic virus, it replicates inside the cancer cell and destroys it, while also triggering an immune response that recognizes the cancer as a threat. 

Read more on the CTV news article http://www.ctvnews.ca/health/canadian-study-to-use-two-cancer-fighting-viruses-in-world-first-1.2463322

I decided I wanted to try it.  And yes, I was nervous after what had happened with the last clinical trial. 

I was approved for the trial and the schedule was set out as follows:

• Tues 27 Oct, for signing of consent, blood tests, urine sample and ECG. 

• Wed 28 Oct, CT scan (here I will tell you that for the first time ever I vomited during the CT scan!  it was awful!  I get nauseous often when the contrast dye is injected and chewing gum has always been enough to get through it.  Not this time.  All of a sudden, while lying flat on my back in the CT machine, I vomited straight up in the air - all over the machine and then the vomit came right back down into my eyes and all over the place.  Horrifying.  The technician was so kind.  First he said, "OK, that happened but now we have to do the test" so I lay still, held my breath and got scanned.  Then he handed me some towels, helped me get up, again assured me this happens as if it was just another everyday occurrence, and gave me a clean gown to wear home.)

• Thurs 29 Oct, biopsy will be done in the ultrasound department. Expect to stay with us for 4 to 4 1/2 hours in total. Tumor samples were needed before starting the treatment.

• Tues 3rd Nov, virus treatment day 1.  Arrive at 8am and expect to stay until around 5pm.  So here's what happened....the virus was injected by IV into my arm.  4 hours later the side effects started, as expected. I had chills, oh so cold and was shaking quite violently.  My heart rate was very high.  The nurses kept piling warm blankets on me and giving me medications to help offset these effects.  This went on longer that expected and I didn't leave the hospital til later in the evening.  My poor husband go the job of playing nurse as we were to stay in Ottawa that night so we would be close to the hospital if anything went wrong.  I admit I did not feel well at all.  It was like having the worst flu ever.

• Wed 4th Nov, this day we were supposed to just hang out in Ottawa (originally my thought was we might do some shopping, ha!) but I felt rough so we returned to the hospital.  My head hurt really badly.  They put me in bed, with more warm blankets and pretty strong pain medication was needed but by 5pm it was over and I just felt tired.  To the Rotel for another night, with Mike again playing nurse. 

• Thurs 5 Nov, biopsy #2 will be done in the ultrasound department. Expect to stay with us for 4 to 4 1/2 hours in total.  These tumor samples will determine if the Maraba virus reached my tumor.

• Fri 6 Nov, virus treatment day. Expect to stay until around 5pm.  This treatment went much easier and we left at 5pm to go home.  

• Tues 10 Nov, Day 8 blood test in Pharmacology Ottawa

• Tues 17 Nov, Day 15 blood test in Pharmacology Ottawa

• Tues 01 Dec, Day 29 blood test in Pharmacology Ottawa

• Tues 15 Dec, Day 43 blood test in Pharmacology Ottawa

• Mon 21 Dec, Day 49 CT scan - to determine effectiveness of treatment.

Unfortunately this treatment did not have any positive effect on my tumors.  The doctor was kind and emailed me as the day of my appointment there was an ice storm.  His words were, "I did the measurements for the 2 target tumors.  The cancer is 19.8% bigger which is technically stable disease.  20% would make it “progression”.  Overall  looking at the other spots as well, my impression is stable to minor growth.   I sorry this didn’t work better for you."

What did happen is I tried something, I met some amazing doctors and nurses and I contributed to research. 
All things I feel good about.

I feel quite well at present and plan to spend some time now simply enjoying life; living in the goodness of it all and feeling gratitude for all I am blessed with.  

much love, Teresa