Choosing chemo treatment again - same gig, new tune.

Earlier this year I had made the decision to be ok with choosing no treatment, knowing I still had tumors and these tumors would continue to show progression each scan.  The rationale was that the tumors grew slowly, no pain or symptoms, quality of life was good and treatment was not going to 100% eradicate the disease from my body.  So it was a good option and I was happy with it.  And then.....

The first of March I felt a lump; hard, round and the size of about a walnut, close to the surface of my skin, low in my pelvis, almost in the groin area.  I have never had tumor that could be seen or felt at the surface so I was not sure.  It could be something else.  I watched it for a few weeks - it grew and started to make walking hurt.  A CT scan was already booked for March 17, so I called my oncologist in Kingston, Dr. Gregg, and expressed my concern.  He booked me an appointment to see him the same day I went for the scan.  Awesome care.  Dr. Gregg waited for the report of the CT, then we talked.  Yes, it was my current tumor situation but different now is it had grown through the abdominal wall and was forming a tumor between the skin and muscle layer.  And the growth was such that he was recommending I consider a treatment option.

In my typical fashion, I wanted to explore my options.  I discussed radiation with Dr. Faulkson in Kingston Cancer Centre.  I explored clinical trials by consulting Dr. Razak at Princess Margaret. I also talked with other medical professionals by email.  Dr. Gregg presented my case at the tumor board and reported back that radiation was ruled out as too much risk to my organs, a newly FDA approved saracoma chemo drug called Eribulin (Haloven) was too toxic compared to the potential and it is not yet approved for funding in Sarcoma (only breast cancer) and the combined expert opinion was my best option was an older chemo regime known as Gemcitabine and Docetaxel combined.  Here is a 2007 study link on this drug.  It is normally a 3 week cycle, but we are going to give me 4 weeks to be a bit easier on my system.

April 14 was my first treatment - Gemcitabine only.  This was done at the Kingston Cancer Center (at KGH) and I was impressed by the system, nurses and facility and all went smoothly.

April 22 was the second part of the first cycle - Gemcitabine first followed by Docetaxel  The Docetaxel is more toxic and included a few surprises...the worst being ice gloves and ice socks!  Seriously, I wore them for 90 minutes! The ice is to protect my nail beds so I wore them, even though I hate cold feet, as the thoughts of losing my nails and getting infections was even worse. As well I need to take steriods (Dexamethasone) for a 3 days. It was a longer day as we had arrived at 12 noon but by 5pm we were on our way home.  24 hours after the Docetaxel I am to give myself a Neulasta injection.  I am familiar with this, as I did the same when I was taking the MAID chemo regime in Montreal back in 2010.  Or at least I thought I was familiar with it...but the day after the shot the side effects started and there came the surprise.

Side effects...the big factor in is treatment worth it?  The first part, the Gemcitabine, was easy to manage.  I was more fatigued for a few days after, and my skin became more sensitive to sun but all in all very manageable.  However, the combination of Docetaxel and Neulasta was a different story.  Sunday evening everything started to hurt in my bones and muscles and by Wednesday the soreness had manifested into a pretty severe headache and back pain.  Thursday the pain hit it's high point, and it was pretty bad.  But then Friday morning all was better, by afternoon the last of the headache was gone, and I was feeling much more like myself again.

May 11 it's back to Kingston Hospital to meet with the oncologist and discuss the next cycle of chemo.  Some adjustments need to be made...a burn developed on my arm, a result of some chemo leaking under the skin at the injection site so we have opted to go with a PICC line now.  The pain it seems was a side effect of both the Docetaxel and the Neulasta, so I am going to double the steroids (watch out family, no sleep for momma and the Roid-rage is going to get worse, I am sorry) to help reduce inflammation and improve recovery time.  And I will get some Tylenol with codeine for better pain control when needed.  My blood counts are acceptable so Cycle 2 can begin tomorrow.

HAIR TODAY, GONE TOMORROW
I hope my tumor responds as quickly to the chemo as my hair has!  Quickly moving towards not needing my hairbrush any more.  Hello hats this summer :)

Hair thinning out

Bald spot appearing

Molting chicken look

Ick! keep that out of the drain

Hat On :)

Being a Mom with Cancer

I think one of the biggest impacts cancer has had on me was to change me as a parent.  A parent who loves the small moments...strives to spend time but even more than that...I relish watching them grow up...just to be present as they move though the ages and stages of growing up is so incredibly special to me.  

When I first felt the pressure of my cancer diagnosis I thought of all the things I wanted to teach them, tell them, impress upon them.  But with time, that changed.  They will develop into adults just fine with or without me.  Now I want to share the real me with them...who I really am, with all my faults and quirks. 

Earlier in my cancer journey I thought thought about all the things I needed to teach my children.  I worried had not taught them enough about cooking, or growing food, or budgeting.  I had not taken them to church enough, read bedtime bible stories.  I had not told them enough of their family history.  How could I make up for all this in the time I had left? I worried about the things I might not be here to help them through; schooling, weddings, babies, first homes, job loss, fights with their spouse, illness...oh the list went on and on in my head.  How could I make up for this?  And then God put in the lives of my daughter friends whom had lost their mothers and I could see that although they miss their moms, all these things I was worrying about he had taken care of in other ways.  And then a read a book by a mom with terminal cancer and she spoke so wisely of the community of women that she knew would surround her children when she was gone.  And not just for a week or a month, but women who would walk alongside her children through all stages of life.  Aunts, sisters, grandmas, cousins, mother-in-laws, friends, co-workers - they will be there along the way. It will be okay.  God has this.  He knows what to do.  

Once I let go of all these anxieties, I was able to uncover the true sadness I felt about living with cancer.  Here it is - I am sad about the things I will miss.  I cry a little inside every time I say it to myself.  But, here is the big thing - all my stress and anxieties were blocking this truth and the beauty of this knowing this truth is that over this I have control and choice.  So I made a choice and I strive to remind myself to live by this choice everyday.  

This is what I choose:  I will delight in the moments of my children's lives.  I will delight in being here to see them become their own unique selves.  I will delight in being able to comfort them, or at least sit beside them, in the hard moments.  I will delight in celebrating their accomplishments with them.  I am grateful for the simple gift of being present in their lives.

..."moments of being", those times when life becomes so concentrated that an individual moment seems to exist forever. ~ Virginia Woolf, Giving Voice to Sorrow  

"When I fully enter time's swift current, enter into the current moment with the weight of all my attention, I slow the torrent with the weight of me all here." ~ Ann Voskamp, One Thousand Gifts

Giving in is not the same as giving up

“Giving in is not the same as giving up.  Giving in is not weakness, in fact it takes a lot of strength.”  Teresa Bell Facebook post Jan 2106

There was a time many years ago that I remember writing in my journal “I will not accept walls in my life.  I will crash them down, climb over them or dig under them.  Whatever it takes.”  At the time I was in the hospital for a week of IV antibiotics treating a system infection brought on by my PICC.

I would no longer write this of myself.  So where am I now?  Somewhere different but it’s a good place. 

Since 2003 I have seen a lot of cancer doctors, been to a lot of hospitals, had a lot of chemo and related drugs, surgery, radiation, have logged a lot of miles for medical care, and spent a lot of time, energy and money in the pursuit of control of my cancer.  The ripples of this have been felt far and wide among my family, friends and work.  Has it been worth it? ABSOLUTELY. My life has been so rich; full of wonderfulness, love and joy and I am grateful for every moment of it. 

The doctors tell me there currently is no other treatment options for me, nothing that in their opinion will be of benefit.  I have heard this before but the difference is that at this time I concur.  I don’t want to have surgery or take a drug just for the sake of “doing something”.  I am okay with just letting things be for now.  In fact, I am looking forward to some time without a calendar full of medical appointments, side effects, not devoting time and energy to cancer.  I tried two clinical trials in 2015, and at present there does not seem to be anything else available in Canada that I qualify for.  At one time I had thought of going to the US for clinical trials.  But now I feel the toll it would take on myself and my family, along with the risks, is not worth it.  So instead of banging down medical walls, I am going enjoy the view from this side.  This view includes more time at home and with family, more time for the things I enjoy, simplicity, quietness, more predictability and choice.  
It’s not giving up; it’s choosing to enjoy the moment I am in.  

Holly's first ice-cream cone

Ice cream is fun at all ages when you eat it together

Mike and  I on date night 

out with my young man Tanner

Fam time building house

Fam time building barn

the power of a woman with a new vacuum

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

Bowel Obstruction, Infection and Many Days in Hospital

On June 29, 2015 I went to Ottawa Hospital for the first day of a clinical trial for BBI608 (https://clinicaltrials.gov/ct2/show/NCT01775423).  The plan was I would take the first dose of pills, and then stay for 8 hours in Pharmacology in the hospital as an outpatient.  Over the course of the day multiple bloods tests would be taken for data for the research.  The side effects expected were limited to fatigue and minor digestive complaints.  I would spend the night close to the hospital at the Rotel and return the next day for one more set of blood work and vitals before going home with a 30 day supply of the drug.  My husband and I had booked 2 days off work.  But that is not what actually happened. 

Lots of  blood collection planned for research data

Pretty innocent looking pills - minion like!

I did take the pills in the morning but by noon I was getting familiar pain and gurgling in my left side – bowel trouble.  It quickly escalated to vomiting, diarrhea and a lot of pain.  The nurses put a nasogastric tube (NG tube) in.  The pain got intense and sometime that afternoon I passed out.  The Pharmacology unit does not typically have this type of situation but the nurses were amazing.  I was transferred to the ICU unit in septic shock.  Multiple images and assessments were done thru the night and in the morning Dr. Nessim took me to the OR urgently for septic shock caused by a large bowel obstruction.  In the OR it was found that my large bowel was completely necrotic (black and ruined from years of living with strictures caused by scar tissue from previous surgeries) and necessitated removal of it as well as 10cm of small bowel.  I was given an Ileostomy https://www.youtube.com/watch?v=_h9gXzi7KtU.  The amazing part of this was Dr. Nessim is a sarcoma surgeon so she also debulked a lot of my existing Sarcoma tumors.  How blessed I was to be treated by her in this emergency situation. 

I had a really hard time in the ICU.  I didn’t know what was happening, there was a breathing tube in my throat but I didn’t really understand.  I was confused…I thought I was being held against my will, drugged and kept from my husband.  It was terrifying the thoughts that were in my mind.  I would see the nurses preparing needles and I would be crying no, no.  I don’t remember my family being there although I know they were. 

I think even worse was what my family was going thru.  Mike watched me go from bad to worse that first day, passing out and nurses rushing around me as I hit a critical status.  In the night they called him into the hospital at 2:30 am because they thought they were losing me.  Then he had to wait as I went into surgery, a procedure that was high risk.  Then he had to stand by while I was in ICU, a machine breathing for me and my body very sick.  But after a couple of days I was recovering – the breathing tube removed and I was moved to a regular hospital room. 

I was like a rag doll in the bed, so weak and with an incision that seemed to almost have cut me in half.  Here though I could see family and the fear started to leave me. I still struggled with hallucinations…I knew every time I closed my eyes the room would change.  It changed in my mind and then when I opened my eyes I would have to sort out what was reality again.  I am realizing now that it was the effects of pain medication but at the time it was hard to make sense of anything. 

Discharge Day July 8

I would like to share you what it was like for my family but that is their story to tell.  It is a heavy load my family carried through this and I am so proud of how they banded together to support each other and me.  It is truly in the hard times that you see how amazing people are.  

July 8, it was 9 days after surgery that I was discharged.  I was able to get up and walk slowly, eat tiny amounts and it all agreed I would heal better at home now.  I was still in pain and my heart rate was too high, about 115 at rest but no reason could be found for it.  Mike took me home.  That night it was heaven to be with my family and sleep in a regular bed.  But in the morning I woke up not feeling well.  I had a glass of water and vomited it up.  Then I started to feel wrong.  I tried to eat, managed a scrambled egg, but then vomited again.  I went to bed with chills.  I asked my Mom to call an ambulance and I arrived at BGH emergency mid-afternoon.  I had a horrible experience there but won’t share the details in this blog.  About midnight the doctors at BGH decided I needed to return to Ottawa.  At CT scan showed there was a lot of fluid in my abdomen.  I was taken by helicopter which was a wonderful experience.  The paramedics explained everything that was going to happen, I was made as comfortable as possible on the stretcher and carefully transported by ambulance to the helicopter.  I was settled into the helicopter, well wrapped in a blanket and headsets so I could hear what was being said.  The view of Belleville at 2am was breathtaking.  And it only took 45 minutes to get to Ottawa.  There I was taken to the emergency room by the air paramedics, and they made sure I was safely handed off to the nurses in the ER. 

IV nutrition - yum yum

Ottawa was quick to take action, getting me to a room and assessing what was going on inside me.  Everyone agreed I was sick.  The CT scan that Belleville Hospital had done was not included in my paperwork and it proved to be impossible to get a copy of it sent to Ottawa (my last little vent about the problems encountered at QHC Belleville).  So I had to do another one CT test which was hard for me.  The medical team came to see my shortly after the scan was done.  It appeared there was a leak in my small bowel causing large amounts of ascites/bowel content to be leaked throughout the greater peritoneal space and I had Peritonitis.  AKA big mess of infection.  Surgery was considered but would have been very difficult considering my recent surgery.  Instead, a radiologist placed 2 drains in my abdomen.  This procedure hurt but it was effective and fluid started draining thru the tubes and out of the peritoneal space which meant we could avoid surgery.  I also got the NG tube back (down my nose into my stomach) to drain fluid and provide relief.  I was taken off food and liquid of any kind and put on a TPN supplement (nutrition thru IV) so my bowel could rest. 

And here I stayed til Aug 1.  34 days total in hospital. 

Facebook Posts - my words written during the hospital time

July 12 - Finally feeling up to making a post. I came home Wednesday July 8 and loved getting to hug my kids. Spent a quiet evening and sleeping my first night in 9 nights outside of a hospital. But I got up Thursday knowing something was wrong. These weren't typical healing from surgery feelings. I had a cold clammy sweat going, was vomiting up the water I drank, and my ostomy bag was producing far too much liquid. I was dehydrating fast. So by 1:15pm I was back to Belleville Emerg. It was a long wait, 5 hours before they started me on fluids and starting looking into what was going on. A ct scan showed fluid in my abdomen cavity and it was decided I needed to be back in Ottawa hospital. I did get an exciting helicopter ride and by 4am was in the Ottawa Emerg. The continued to stabilize me with fluids. unfortunately the cd of the ct scan done in Belleville didn't go with me and in this day of technology there seemed to be no way of transferring those image so I had to endure a second scan on Thursday. Hard because I had to drink the contrast dye and hold it in for the test, when in fact my body was by then determined to vomit up anything I swallowed. But test got done and within 30 minutes the surgery team was in my room with the results. A hole had formed in my small intestine, leaking fluids out of my stomach and into my body cavity. At first the surgical team thought I would have to go back to surgery that night - reopen the full incision, clean out the cavity and repair the hole. But then they came up with a second option - using radiation guided imagery place 2 drains into my abdomen. Plus a stomach tube ( down my nose). If we can clear the fluids away then potentially the hole can repair on its own. And we avoid surgery! The tubes were in place 2 hours after the scan was done and my relief was instant. So now we give it time. Nothing by mouth for me, tomorrow I will start feeding by IV. And we will let the tubes continue to drain. Antibiotics are given too just to help ensure we prevent infection. I feel quite good. I'm up doing shuffle walks. I can read books now. And this is my first look at Facebook in weeks. I'll be in hospital for the week at least. But everything is going in the right direction and I'm getting excellent care so it's all good. Thank you for your continued thoughts and prayers. I really appreciate your care and kindness. Much love. Hope there is not too many typos. Love teresa

Monday July 20 - it's hard to believe I am starting my fourth week in the hospital, and looking at at least a couple more. Talk about a 360 in life. I am grateful for the medical care and healing that is possible for my body. I can't imagine what it would feel like to not know how we were going to pay for medical care like our US neighbors. Or to live in a country where this care would not even be an option. These thoughts of gratitude give me patience. But still, I miss home. I have drains in place to keep all that toxic fluid out of my abdomen, so the tear and heal. No food, but strangely I have gotten very used to that. I am fed good stuff like lipids, amino acids and electrolytes directly to my blood through the IV. I am also grateful to everyone who is filling in for me at work and keeping things done at home. I miss you all, and hope everyone is having a wonderful summer. Enjoy your day.

That’s the facts of what happened.  But the story is much bigger than just the facts.  It’s taken me a long time to write about it.  Partly because I was really sick and writing at the time was impossible.  Then I was home but so tired and writing still seemed impossible.  And then it all seemed too overwhelming, I didn’t know where to begin and where to end the story.  This is not going to be my usual blog, I only have snippets to share instead of a complete thought.

The hospital time – when I returned with the infection I was placed in a 2 person room, next to the washroom (not the window).  At first this was fine, but over time, it really wore on me.  Not being by the window meant I had limited space, the curtains were drawn on both sides of me all the time, and I never saw outside.  It seems trivial now, like I am whining, but as the days wore on it got hard.  Time passed to slowly.  I didn’t have meals.  I read and read and read books.  My concentration was poor so I couldn’t manage any ‘projects’.  I found myself literally watching the second hand on the clock, tracking time 5 seconds at a time.  5 seconds 12 times became a minute.  Then 5 minutes.  Then ¼ hour.  Then 1 hour done.  The bowel rest was good for me, the pain subsided, the draining lessened and I was up walking the halls.  But still, I had to stay.  And stay.  Without knowing when the end would come.  I wish I could tell you a stronger story but I promised to be honest in this blog. 

There were many good moments in the hospital too.  Amazing nurses!  Excellent doctors! Visits from family and friends :)  The first morning there a friend called to say she was in Ottawa and had a couple of hours to spare – did I need anything?  What a blessing as I had arrived with nothing at all.  She arrived with a care package of essential toiletries, books and care items.  It was the best!  Family came to visit as much as they could.  One day Mike arrived and I got a pass to leave for a few hours.  He took me to sit along the river and watch the ducks play, then for ice-cream.  He was so kind.  I must have looked a mess and really wasn’t very capable but he smiled and made me feel like it was the best date ever.

Good news – no pain now.  I looked back on my journal and realized I had been having pain from the bowel strictures for many years.  Now that the damaged bowel has been removed I don’t have any of this pain.  How quickly we forget that we no longer feel.  My side is 100% comfortable now…I never have to spend time nursing a partial obstruction.  This is good.

I have no special way of ending off this blog.  Healing continues.  My path continues to wind up and down hills, sometimes with a clear view and sometimes not.  It is a good path.  My Lord holds me gently even when I can't feel his presence I know he is with me.    Bonds with family grow and strengthen.  Life is unpredictable.  And kindness is powerful.  

Much love and hope,

Teresa