Sticky Gut and feeling less than perfect

I thought I should blog today  (written Nov 23) as today I don’t feel my usual self.  And if I am to share with complete honesty and openness this cancer journey then I have to share the less than perfect days too.  Today I don’t feel like I can conquer the world.  Today I am quieter.  I am still feeling thankful for the many gifts already given to me this morning;  waking up in a comfortable bed, a warm house, seeing the crisp frost outside, washing sheets for my kids beds and taking my husband coffee to name a few in the past hour.  It’s a good life.  But today, today I feel vulnerable and out of control, and I admit, I am not comfortable here. 

This less than perfect feeling is probably brought on by my latest bought of what I call sticky gut.  That is not a medical term the doctor’s use, but they don’t disagree with me when I use it.  Basically the multiple surgeries have left a lot of scar tissue in my gut – the doctors say its strands of stickiness that web all over my abdomen.  Your digestive system is always moving around and with the sticky scar tissue this can cause partial blockages.  Things just get stuck in the wrong place.  And there seems to be only two ways to get things in my gut right again.  Either is moves back on its own or there is a major surgery.  We all agree I should avoid more surgery at this time so it’s up to my body to do the work of fixing.  While things are stuck, it hurts, sometimes a lot.  My guts say no to food, anything in there has to come up (vomiting) and of course no new food and often not even much to drink.  Wears a person out.  Osteopath massage helps and I am blessed to have someone close by who helps with house calls.  It’s a matter of time and resting.  Sticky gut can happen at any time and I have not found much of a pattern to it.  I have been blessed to not have much of it lately but it struck Tuesday.  Mid-morning I was thinking oh, stomach pains, I must be extra hungry.  Part way through my lunch I realized oh no, this is not hunger pains.  By afternoon I was vomiting and hurting a lot.  Wednesday found me a ‘flat stanley’ as I call it…no energy, flat on the couch, drinking only little bits, hurting still.  Thursday morning I thought I was better and went to a meeting with the most wonderful group of people, The Probus Club of Quinte, but still very weak and by afternoon hurting again.  Friday morning I woke up to find my guts felt right again.  Food in, water in, I’m moving around again.  But it slows you down.  This is Saturday morning now and I am still not back up to full steam. 

This morning I find myself seeing so many projects around me that I am not getting done.  Things I started, things I want to finish, but I don’t see where the time is to do them.  A book to finish.  Pig and chicken farming notes to write and file.  Family bills to reconcile and file.  Dog hair sits in large tumbleweeds all over the place.  Seeds I was saving from the garden to store.  Herbs I dried that still are in the paper bags.  Horse stalls are dirty.  Winter mitts not out.  Folded laundry sitting all over not put away.  Chicken pen not winterized.  I am much less than beautiful.  Less than able to handle all life is.  It’s not a lack of gratitude.  It’s a lack of ability I feel.  So what do I do with this feeling?  I have to go now; there is a schedule to be kept.  I am promising myself not to edit this part, which I will leave it as is and add on later. 


Gift from my husband (it was not our Anniversary). Awesome!

It’s Sunday evening now.  I am feeling blessed and at peace.  How did this come about in just 36 hours?  I have so much to be thankful for, and feeling gratitude seems to fix a lot of what appears wrong in life.  Have I mentioned that I am married to an amazing man? A man I admire.  A man whose character is good, honest and sincere.  This man and I are best friends and he knows me so well.  We got in the car to head out on our planned weekend trip and he said…how are you doing?  I replied “struggling” and he said “want to talk it out”?  Now a man does not always ask this, a man does not always choose to open himself to this kind of conversation but at this moment my man did it.  And you know what? In under ten minutes he had heard my words and shared back his thoughts…and it made so much sense!  I think also just being listened too helped a lot.  I did not pull myself out of the huge hole I was digging myself, my husband did. 

Sometimes we can do that for someone…if we really mean it and we can follow through on listening, really listening…we can ask, “How are you doing?”  We probably ask this a hundred times a month but maybe every once in a while we can ask it, really want to hear the answer and change someone’s day.

Chemo pill - lingering - time and stacking stones

it's a single pill...pale pink, flesh tone really, fairly large as far as pills go and the coating has no taste.  Inside this pill is chemo, a word I seem to use as almost insignificant now, an every day word.  Oh, it's just some chemo.  Like oh, it's just some vitamin C.  But this pill is my current treatment plan and is far from insignificant.  This pill is my hope for time.  When you are in the midst of cancer treatment they call it your "active" treatment but I think of my pill as "lingering" treatment. 

The pill is called V-16 and it's an Etoposide Chemo.  I found this info: Etoposide belongs to a class of chemotherapy drugs called plant alkaloids.  Plant alkaloids are made from plants, in this case derived from the May apple plant.  The plant alkaloids are cell-cycle specific which means they attack the cells during various phases of division. Interesting really, I would like to learn more about how it works.  But for today I will tell you what I know...I take one pill a day for 21 days, then take 7 days off and start the cycle again.  The goal is that it will keep the tumors I have stable...perhaps shrinking a little, perhaps growing a little, but with no significant change for a long period of time.  My oncologist says I may be able to stay on it for a year, maybe two years.  When we compared this option to the risks associated with radiation, surgery or stronger chemo, and although these treatments could have resulted in being tumor free, this lite weight chemo seemed a far better choice.  The side effects are typical of chemo, but with this light dose they should be minimal, and allow me to live a fairly normal day to day life.  Two years of stable with minimum side effects....good choice.

And yet, it was not all easy.  Driving home from the oncologist appointment in Montreal, where we discussed all the options, considered the possible outcomes, and came to a conclusion that my husband, the doctor and I all agreed was best...driving home I found myself going through a range of emotions that played out for a few days.  I have always preferred to tackle things head on, go the hard way if needed and net the best possible result.  Choosing this chemo did not feel like that.  Instead of banishing the tumors from my body, I am going to let them stay.  A concession.  A slight giving in.  A hard pill to swallow.  But also a gift, the gift of two years of having physical strength, a feeling of overall wellness and time...what shall I do with that? 

Bedtime was when I decided would be the best time to take the chemo pill.  Then if there was any immediate nausea or unwell feeling I would sleep through it.  But I will admit, and it surprised me to feel this way, the first night I put that pill in the palm of my hand I had a hard time putting it in my mouth.  I looked at it, I thought of the chemicals and cell killing toxins inside it.  Chemo when a nurse hooks up an IV seems different than this.  Here I was, about to willingly swallow poison. 

Today is my last day of the first cycle and tonight I will take pill #21.  Side effects?  tiredness is all I have to report.  Not an all day tired, but a knowledge now that I won't be the life of the party after 8pm.  Hair is still intact, appetite is definitely intact.  Day to day, I feel awesome. 

Thanksgiving..today is Thanksgiving Sunday.  I love Thanksgiving.  I love the fall, the harvesting, the cool air, the sense of putting up for the winter season the bounty of the summer.  Its a time of celebration, of giving thanks, of feeling joy and preparing for the winter when we cuddle inside and rest a bit. 

I find it truly spectacular how different things come into my life, at just the right timing, and they intersect to create "ah hah" moments.  Fierce Grace.  God is masterful in how he delivers guidance and answers to me.  2013 has been a wild year of experiences and adventures but now the lessons seem to be different.  There is this chemo, which asks me to "linger" in treatment.  There is my quieter home now with less children in it.  A friend invited me to a book club...I have never taken part in a book study group so it was unusual to be asked but the timing fit in easily so I said yes.  The books is called "One Thousand Gifts, A Dare to Live Fully, Right Where You Are".  At first I wondered if there was much I would learn, as I feel I am pretty good at living in the moment and feeling grateful for the gifts in my life.  God has shown me though that there is reward in keeping myself open and expectant, to not jumping to conculsions...to quiet my mind and wait.  So I went with my hands open, waiting to see what God would place in them.  We are only 2 of 5 sessions into the study but already I have been given much to think about. 

The book we are reading in the study is written by Ann Voskamp so please know these are her words, not mine.  I don't know if it will make sense, but I want to share some parts I have highlighted in the book.  A part I am really drawn  to is where she and her brother-in-law are talking about coping and understanding the loss of his child, his second son to die as an infant, a pain I can't imagine.

"If it were up to me...I'd write the story differently!"  "Just that maybe...maybe you don't want to change the story, because you don't know what a different ending holds."  "There's a reason I am not writing the story and God is.  He knows how it all works out, where it all leads, what it all means."  "Maybe...its' accepting there are things we simple don't understand.  But he does."

"I wonder too...if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually be places to see.  To see through to God."

I think on this...the need to let go of what I want life to be, my version of perfect and let God have control.  Not only to give over control, but to seek joy in his plan, all of his plan, not just the parts I like.  And the notion that the hurts in life, the holes created in our hearts, are the clearest views to see God.  that's a big thought. 

"Joy is the realest reality, the fullest life, and joy is always given, never grasped.  God gives gifts and I give thanks and I unwarp the gift given; joy."

gives, give, joy...so simple and yet, so taken for granted and so difficult at times. 

And now the book is taking me onto the path of time....unhurried time...taking time...having time.  Here I think is a lesson for me.  I have always struggled with time...not enough time...never enough time to take care of my home, do things with my children, get things done at work.  Cancer makes time a stark reality.  I thought I had changed..changed priorities and how I spent my time....but perhaps God has more to teach me here.  I hope so.  Fierce grace.  He continues to give to me.  Molding the hard clay my life is, into a beautiful useful vessel.  I am grateful for the heat, the fire that has been needed to mold me.  For the unending attention. 

Time..taking time...stacking stones.  Ann Voskamp also spoke in the video last week of the ancient art of stacking stones.  They would create a stack of stones, each stone to count a blessing in their life, a time when God had blessed them, times of faithfulness.  And then future generations would see the stack of stones, and hear the stories recounted to them.  As part of the study we were asked to think of examples of how stones had been stacked for us by past generations.  As I look back on yesterday I realize it was full of stacked stones and it happened when I gave time.  I stopped by my daughter's new home, randomly pulled in for a visit and our conversation repeatedly reflected on how my grandparents (her great-grandparents) had impacted our lives.  Stories...stacked stones.  I came home to work in the garden...called my mom who was making pies...invited her to have come have a tea break with me.  We sat by the garden, my son beside us, watched the pigs root, snipped the basil.  Stacked stones.  Later I came upon the wood splitting crew...my Dad and my son working together to split the wood.  My husband stacking.  To see the three of them together, to see my son working alongside his grandfather, learning from him how to handle the wood that seemed to heavy to lift by rolling it up a board to the splitter, to watch him work out the mathematics of how many cord of wood...stacked stones. 

taking time...stacked stones...stacking stones...giving thanks...a happy and blessed Thanksgiving.

with much love,
Teresa

My son and my Dad
 working together

Pigs tilling the garden

Paths

This has been on my heart since Sunday, and I feel so compelled to share it this morning, despite the fact I have a zillion things to do (sorry work, sorry cleaning).

Last Sunday I went to Church, arriving early to drop off some Step & Fetch materials to the pastor and found myself feeling very at odds.  I didn't feel like sitting down yet, I felt unsettled and found myself drawn to the outdoors.  So, out I sent, strolled across the parking lot and saw a walking path I didn't know existed.  Afterwards I learned it is a popular walking area.  I crossed through some brush and the first thing I encountered was the train tracks.

My first instinct was to sit down on the tracks, right on the wooden beams at the crossing, and stare down the tracks towards an imaginary oncoming train.  I was contemplating how my cancer compared to an unseen but oncoming sometime train.  Fortunately at that  moment someone came along on their own walk and since I did not want to look like a suicide attempt I strolled past the tracks, said good morning and moved on.  How good it was that simple single interruption occurred (God does work in such simple ways at times).

What I saw next changed a lot of what I had been thinking.  The past weeks of tests, appointments and decisions had me very focused on my cancer.  And focused on the train that I know is out there but I still can't see.  But God simply turned my eyes away from that and showed me a path.  And as I stepped out on that path, it quickly split into many paths.  Choices.  One path went hard right, one went hard left and one in middle dipped down into a darker tree covered area.  Many paths, all for me to pick from.  And I don't think any of them were bad, just different.  Ah hah moment! 

I choose the dark tree covered path to explore.  Explore is a good word because I was not sure that was the path I wanted but I was curious if it led to the water.  What I encountered surprised me - at the end someone was living there - a home of sorts was set up, a fairly looking tent type home.  I weighed my curiosity vs. respect for this persons space and did not further inspect, but instead walked to the side to the waters edge to view the shore for a moment.

Then I went back the path I had came.  Ah hah!  The path I choose I did not have to stay on, I was just exploring that path and I could go back and try another.  Perhaps this was my lesson in my oncoming train - it was okay that I had explored that path for a few days, but it did not take me to a place I belonged - and I had the option to go back and try another path.  Oh, God is good.  Many paths, all for me to explore and choose.

As I walked back to church I noticed some areas were wide open, meadows with lots of space and room.  Some were narrow and well trodden by many.  Some like the one I explored dipped down and was dark for a while.  Many paths, all different. 

The last thing I noticed was that at times there were other people on the paths.  Some I nodded to (I am sure the owner of the tent home passed me and he gave me the most respectful silent nod of his head) and others I stopped to chat with.  We are not on our paths alone.

Many lessons learned walking the path that morning.  It set my heart at ease, I am feeling both peace and freedom. 

I took some pictures of the paths, as I wanted to remember how I felt and what I thought, which I will share  here with you too.

God Bless,
Teresa

Train track, where I was going to sit, and contemplate this view

 

Many paths for me

...it dipped down, and got darker...
 

Letting Go

I have been noticing I have not been writing this blog in my head...that is different for me.  Usually I am writing, editing, thinking some more and re-writing in my head long before I start at the keyboard.  But this time, strangely, my mind has been very quiet.  Where is the processing? the pondering?  Why do I sit here this morning with no pre-conceived notion of what I will write?  I have no idea, so I shall just start and see where it goes :) 

The past month as been filled with appointments and I realize now it was exhausting, although at the time I thought it was just a little bit of extra running around.  The month of September had me in Montreal five times and Kingston twice; PET scan, Ct scan, Renal function test and consultations with radiation specialist, surgeon and oncologists. This many medical days bring mixed feelings.  I am reminded of Haiti and the people there with cancer and so very few options, and I feel both grateful for and yet humbled by my excessive use of the medical system. The flurry of tests and appointments came on like a fast storm...I didn't see it coming and it hit hard.  I should have, in hindsight realized that when we said (in July) let's give it the summer and decide in the fall that deciding would mean a lot more than just one visit with my oncologist. 

I think what also made it so exhausting was the decision making.  Decision making has always been hard for me, a source of a lot of stress and sleeplessness.  I have been on a fact gathering mission, striving to ensure I have not overlooked any possibility for treatment options.  Then pooling all the information together and deciding, which we did last Thursday, the 12th.  Now that we have decided on a treatment plan and I have a clear course of action for the next few months I feel my shoulders relaxing and me letting go of all the tension I was holding in my body.  I am sitting outside this morning, watching the sun rise, and am reminded that each morning is a gift.  The gift of a fresh start, a new day.  I close my eyes and feel the sun shinning on me...I breath deep...breathe in hope, breath out  the old.  Let go, begin new.  I feel calm now, peace in trusting that God has this, I only need step out into the new day  he has given me. 


My thinking place by the river

Medically speaking I have 2 new tumors, they are not large but they sit in a tricky place - one at the head of my pancreas, tucked in behind the duodenum and one is hugging my aorta.  Good news is they are slow growing.  My options were:  surgery with the risk of losing half the pancreas and duodenum, radiation with a high risk of permanently damaging my bowel, or chemotherapy to control but not eradicate the tumors.  This is where I am practicing the art of letting go.  I have always gone for the maximum treatment, as is my nature to go for it all.   I am a charger in life, I take it by the horns.  The river trips taught me a lot about letting go. Holding life with soft hands, not clenched fists.  If I am clenching my fists around something, it hurts a lot when it's being taken from me but if my hands are soft, things can be taken away easily, but also....very important...new things can come in.  Fluid strength.  Fierce grace.  Perhaps the grace should be upper case right now.  Fierce GRACE.  Letting go.  So something new can come in. 

We choose the gentle chemo, it's called V16.   I will take a pill, it's easy, no trips to hospitals, minimal side effects, no down time in life.  The goal is the chemo pill will keep the tumors stable, prevent more growth.  Literally, this is an option I can live with.  And live well.  There is potential it can keep the tumors stable for a year or two.  When it stops working we can still look at the riskier options. 

The last 48 hours have been a time of reconciliation within me, perhaps that is why there have been no words in my head.  A good friend sat and talked with me recently and she helped me more than she probably knows.  She heard my words, she was honest about what she saw in me, both past and now.  My husband has walked every step of this journey beside me.  My children have all become strong yet gentle and wise people through this journey.  I am blessed.

Change - noticing how change feels

I've been thinking a lot about changes in my life, noticing how I react to change and how many feelings are triggered because of change.  This summer it has felt like there were a lot of changes in my life.  Some I knew were coming, such as the one I am fully experiencing for the first time this morning - there are now only 3 people living in our house.  Paula was married in June and Kaitlyn went to University yesterday.  The girls were early risers, and often in morning they would be gathered with me in the kitchen for an early morning coffee and chat.  Not today. Today starts the different, quieter mornings...as my guys like to sleep in and they are not all that chatty when they do awake.  It's not bad, in fact it is very good for a multitude of reasons...but at the same time it's difficult and amongst all the happiness I am feeling about these changes there are some sad spots. 

Change associated with health care...that I have been really noticing this past week.  How quickly a day can change and how it makes me feel, the phases and variety of emotions that go with change.  Last week I had a consultation booked with my radiation oncologist, to look at the recent CT scan and see if there was any possibility of radiation treatment for the tumors.  The day started out fun, traveling by train with my sister to Montreal as we had so much to catch up on that we talked the entire trip, non-stop actually and time flew by.  Arriving at the hospital in good time, I was checked in and ready to see the doctor as 12:45...perfect.  I felt so prepared, with my scans, past radiation reports, questions written down...ready to meet the doctor and discuss my options.  Boom...change.  2 hours later the doctor still has not seen me.  Why does not matter to my story, but trust me, at the time I sure wondered that a lot!  I had to make a decision...because the train home left at 4pm.   So quickly we had to think of as many options as we could, and decide on our next steps.  I opted to leave my information with his secretary, along with a note so the doctor could review and hopefully phone me.  But it was so stressful!!!  and I kept questioning myself.  Should I do this, should I have done that?  As we made our way out of the hospital, through the subway  and onto the train I noticed my range of emotions.  Denial as the clocked ticked away in the waiting room...no, this is not happening, he will call me into his office any minute now, there is still time for the consultation.  The calm discussing of what to do with the secretary...me saying oh it's okay, it will work out.  Walking away from the hospital and that appointment that felt like it had cost so much to get to (in time away, planning and money) in a calm surreal state.  All through the subway I questioned myself...why didn't I be more forceful at the hospital, should I have stayed overnight...all should have, could have thoughts.  By the time I got to the train I was getting really angry at the doctor.  Then sitting on the train I felt like crying, just so let down and deflated.  During the ride home I moved into what I think of as buffer time...I just let it rest, not actively think about it, let it go for a while. 

What actually happened is the doctor did look at my information the next day, phoned and left me a message saying a couple more tests were needed before he could determine my radiation options and he would have those booked for me.   These tests resulted in more change that I struggled with.  First was the call to go for a PET scan, which meant a full day away Tuesday.  The same as the changes with my daughters recently, this change would result in something I wanted to happen but it was still hard adapting.  This was the day we had planned to celebrate my daughter's birthday with a camping trip, but we had to change.  This makes me mad about cancer, that it gets to play the trump card in life.  Everything else has to change to accommodate the cancer card.  I do know that there is always choice, but to be honest, this is how I was feeling at the time.  Kaitlyn had an awesome attitude about the appointment, and opted to cancel the camping and instead travel to Montreal to the appointment with me.  We turned it into a good day, and it makes me happy when my kids show me they have developed the ability to alter plans and turn things around so it's a positive. 

Wednesday was a tough day.  I was tired from not sleeping well, the travelling and testing and I was behind at work.  And now I find I have another test to go for, the next day in Montreal again.  I was honest and open with those around me...I let them know I was struggling.  And they helped me.  Had of I tried to handle it all on my own, hide the struggles and put on a brave front I probably would have ended up really stressed inside, and cranky on the outside.  Instead the day got much better.  Folks at work stepped up to assist me, and then my daughter Paula called with a wonderful surprise...she had gotten the day off work and would go to Montreal to the test with me.  This changed everything.   The day ended up being awesome, giving Paula and I time together. 

This is not a deeply reflective blog, more an observance.  Reading back over it, I don't like the sound of myself.  Where is my gratitude in all this?  I was surprised at the range of emotions I experienced when faced with change. Things change, all the time.  Sometimes we see the change coming and sometimes it a surprise.  Sometimes its a small ripple and sometimes its a huge wave.  But always, there is change.  Like a flowing river, life is always moving, adapting, changing course - fluid.  That is the secret I suppose, to stay fluid.  Every moment, every "thing", it's something we are going thru.  And there is the key word...thru.  We are always going thru.  We don't stay stuck in any one situation.  Like the river, our strength comes from being fluid.  Fluid strength. 

ps...here's where I am at in my cancer journey details:
- June Ct scan shows 3 small tumors are growing
- next step is information gathering - consult with radiation oncologist and surgeon, get their opinions
- more information from tests - PET scan, renal function test, another CT scan
- make a decision - take all gathered information to consult with oncologist in Montreal, review, assess and decide on a treatment plan

Funny, in writing this I already see how I am relying on the planning to give me a sense of control.  I don't think this is wrong, it seems necessary and practical to plan these steps out but in reflection I will endeavour to remain more fluid about changes that may happen.

Change;  how it makes me feel, what I do when I see it coming, how I react when is happens suddenly, watching myself experience change - interesting.  Thought provoking. 

Adding on a couple of days later....
Interesting how things pop up when you need them...I was looking for this a few days ago when I was feeling overwhelmed by the changes in my life recently...and today I found it when cleaning up my old emails. Give it a listen if you like.  I am not a Buddhist, but I was able to appreciate much of what she says about change and permanence. 
http://www.youtube.com/watch?v=MIo13Lqc4Rg

Weed the garden...how God helped me to handle this rough patch

My Grandpa and I

I grow a garden, a vegetable garden, and I do it because a) I like the idea of eating food I grew, self sufficiency and b) it's what I grew up with, my parents tuaght me the vegetable garden was an important source of our food and c) I have very fond memories of my grandfather caring for his vegetable garden which in my child's mine was a large, beautiful space that he tended with a gentleness and persistence.  I never thought of it as a life lesson until recently.

Let me back up a few weeks, back to June 25 when I went for a CT scan.  CT scans are the tell all of my cancer life, they show everything.  I have often wished there was a special scanner in my closet, that I could just step in front of like a mirror and could check on what was happening inside me.   The realty is I have to wait for CT scan results.  Because my doctors and I have developed a relationship over time, they know me well enough now to let me have my results before I go for the official in office consultation.  This is so much better me.  This time I really thought I would read the words NED, which means "no evidence of disease" and is the golden words for Sarcoma patients.  I felt with the proven success of the radiation on the bladder area tumor, plus the new trail drug Votrient I was on, plus the abundance of good fresh juicing I was drinking and my overall healthy feeling that this would be the moment of ahhhhh...no more tumors. But when I held that report in my hand, that was not what I read.  I will put in writing the results later in my blog but that is not what is most important, first I want to share what has become so strong in my heart since reading those results.

It's the first of July and this is where I was at.  I was feeling heavily burdened, I just did not know what to do, what to think.  I felt sad, disappointed, lost.  I paid attention to my body and there was no lift in my step, my shoulders leaned forward, my jaw was slack.  I sighed, a lot.  My mind was working all the time and yet not working.  At work and at home I had no focus and did not accomplish much.  Those around me could see it, and yet they knew they could only give me time to work it out myself.  When I say I don't stay rosy pink all the time, this is what I refer to...I have these moments too.  I think everyone has times like this, with a life event that is greater than they had capacity for.  Sometimes it lasts for an hour and sometimes it's longer.  Judy, the mom of a young woman who lived and died of osteosarcoma, spoke about how their family handled these dark times - they agreed to let it wash over them for 24 hours and then they had to move on.  I knew I would move on, I was committed to it, but I was not sure how and I turned to my God for help.  I prayed for help, to know what to do next and then I waited with all the patience I could muster (and if you know me you know patience is not one of my virtues when I want something to change).  Watching my new son-in-law and his friends cope with the death of a close friend taught me a lot during this time, and I tried to model their complete and utter faith in God to lead them through this narrow spot.

This is going to be a long blog..I am warning you now..so go get a coffee or tea now and settle in with me :)

a narrow spot, climbing chalk mountain,
 the Owyhee River Kayak trip, June 2012

Narrow spots in life...another teaching I learned from a great woman Gabrielle Roth (I attended a conference in 2012 that she spoke at).  She said - "picture our life as a trek across the country and picture encountering a mountain range...you know you must cross through it and the pass will become very narrow, steep and difficult...but, and here is the joy and hope in it all...but you can pass through it".  And adding my own twist to her story, you can choose to get stuck at the foot of the mountain and never pass through to the other side.  You can't see the other side, so you will never know what you are missing but what if it's so beautiful!!! and it probably is.  And what about the amazing things you might encounter on the pass through to the other side of the mountain!!! and who wants to stay stuck in the dark shadows anyhow.  Narrow spots in life...they will be there...they will be hard to pass through...but they will be worth going through.  My faith allows me to believe this.  This is where I feel fierce grace...it has to be fierce when in a narrow spot.

Mike and I at the top of Chalk Mountain, well worth the climb

I prayed, I prayed asking "what do I do?"  "help me God to understand what you want me to do with this?"  "how do I cope?"  "how do I help those around me cope?"   And then I tried to be silent, open and patient in my heart and mind...which are all new things for me, things I have been learning through my journey with cancer.  The old me would have stormed ahead with my own armor on.  The changing me is trying to wait for God to put the right shield and sword in my hand.

Here is what happened.

my garden, today, July 27, 2013

Mid July I am strolling across the yard having come from the barn.  It's early, quite early and the sun is just coming up.  My family is sleeping.  The world is peaceful, I have let the horses out and they are grazing in the field beside me.  Throughout the night it had rained a lot, the ground is soaked.  I am still wearing my pajamas (as I often am at this time, having thought I was just slipping out the the barn quickly to let the horses out). I paused at my garden, and saw a lot of weeds..tall big weeds, filling all the space between the vegetables, which had been bothering me for many weeks, knowing it was getting overrun with the weeds.  Inspired because the soil was wet, making it so much easier to pull, I grabbed a tall weed and pulled it out. It came out so easily and it was so satisfying that I pulled another, and another.  Next thing I knew, I was head first, immersed in the garden, pulling and pulling.  For the next hour I worked in the silence of the morning, pulling and clearing.  And that is when I heard God, in my heart, saying "just weed the garden".  I don't have to come up with any great plan, just "weed the garden".  Simply take out what does not belong, take out the things that choke, clog, prevent growth.  Don't make it complicated or something that needs a big plan, just start with one weed, then the next.  The time is right now, the soil has been loosened with the rain, just reach in and pull.  So that is all I need to do and I have take a lot of comfort and reassurance from it.  God has this.  All I need to do is weed the garden, take the things out of my life that are not good for me.  Keep it simple, just reach in and pull, one at a time.  God has helped, he has loosened the soil of my life with a solid drenching rain. So that morning, after I had all the weeds pulled I sat down in a chair at the end of the garden.  I realized that the task of weeding that had seemed huge and overwhelming for so many weeks had been easily accomplished in short period of time without being exhausting.  I looked at my garden, thinking how much it resembled my life.  It was made up many different types of plants, which had been planted with a plan in mind but how they grew was affected by the sun, rain and wind since the seeds were first sown.  There was now a beautiful organized chaos.  Some plants were flourishing, some not but all together my garden was a thriving.  And it was beautiful.  Beautiful just the way it was, in it's purpose and plan.  It had survived the time when the weeds had seemed to overrun it...grown wild and untended...when the weeds were taller than the vegetables...some weeds still existed, there would always be some weeds but that was okay too.  My life was explained to me that morning, when my mind was quiet and my heart was open, waiting, expecting God.

There is more to write, but right now its time for me to head outside and enjoy the day ahead.  I will be back later to finish up.  Love, Teresa

Where I have been these past months...

...it's been a long time since I posted...sorry to have been so absent...I was carried away living life!  It's been a whirlwind of good things since my radiation treatment in February.  Since then I have had a family holiday in the sunny south which is always a great thing to do in the winter, and it was even more sweet this year as I had been away for 2 weeks for the radiation in Montreal.  I just loved having the down time to hang with my family.  Next there was the fulfillment of a life long goal - I joined a the Sask Haiti Medical team for mission work - you can read the team blog at http://saskhaitimedicalteam.blogspot.ca and to tell you what it meant to me personally deserves a blog post all on its own.

Serving in Haiti, what a blessing in my life.

I loved, just loved, being able to spend a few moments with each patient.

Mike and I dressed for Church in Haiti

 Then there was the event every Mom dreams, the marriage of my oldest daughter.  The wedding took place June 22, and it's was a personal event so I won't post much of the details, but I do want to share how incredibly, powerfully grateful I am to have experienced this day.  When having cancer is poking around in your mind you wonder if you will get to be a part of these kinds of life moments, just an example of not taking anything for granted.  I loved every single moment of the wedding, from the time her husband-to-be asked for our blessing, to the planning to the day itself. 

Mike and I watching the marriage of our eldest daughter.

Paula and her Dad - I was so proud.

Faces of Cancer video project

We are still alive

An article was brought to my attention, "A Tattoo on the Brain" by James Salwitz.  In it, he writes, "...we must understand that medicine often causes deep injury beyond that of the flesh...When someone is treated for disease, their body is invaded. Any invasion of the body that scars bone, muscle, and vessel, also scars the mind. How can we predict how deep a wound may become, and how much it may transform? Is it the person or the act?  It was just a minor procedure, a one day stay in the hospital, not really much pain, rapid  recovery, she was back to work in two weeks, but somehow the wound buries  deep into the core of a mind changed forever, a deep pain that never  heals.  Stage 1 melanoma … take out the ovaries …  a near lethal  aneurysm … no big deal … really? As family and friends of patients, we must also remember that healed and Healed are not the same thing.   Just because the body is better, does not mean that the mind has followed.  We need empathetic support and understanding long after the crisis has past.  New trauma or stress can release demons, and we must all be aware and sensitive, for yesterday’s surgery is tomorrow’s pain. Finally, as patients we must understand we have been changed.  There is something brutal about invasive medical care, which may affect us deeply. We must be gentle with ourselves and realize healing is more than tissue deep.  Healing is of the mind, and may in part take a lifetime...”

I’ve been thinking on this a lot since reading it.  Do I feel like this?  Do I understand this thought? Can I empathize with it?  I have seen some comments written in response to the article, people expressing extreme relief that someone else gets how they feel.  While my heart hurts for their pain and distress, I find that although I want to empathize with someone who feels like this, as it sounds like a sad and awful place to be, I must admit I don’t understand it.  Does that make me a bad person?  I hope not.  It does make me realize how important it is that we allow each other to have our own unique feelings, that we not insist anyone conform to how they “should” feel.  

Last week I had the pleasure of meeting a friend for breakfast while I was in Montreal.  I am always looking for the upside of everything :) and one of the upsides to being in Montreal for an extended stay (10 days for radiation) is that I have a chance to meet up with my buddy Grant.  Grant and I met while staying in the same hospital room for chemotherapy in the spring of 2011, and we have remained friends since.  He has recently been through some very intense treatments so I asked him if he felt invaded, scarred on an emotional level or wounded other than flesh.  What he said to me was profound, words I will reuse and probably start to adapt as my own.  He said...I am still alive, and that is what we are asking of the doctor when we go for treatment...to stay alive.  This resonates with me.  When I sit in front of my medical team, be it the surgeon, oncologist, radiologist, lab technician, etc., what I am asking of them is to assist me in my quest to stay alive.  It is my choice, and perhaps we forget that we always have choice.  No one or nothing “gave” us cancer so we cannot expect someone or something to “take” it away.  As with everything that “happens” in my life, the one thing I have 100% control over is how I react and my ability to make choices.  I asked the surgeon to invade my body, I asked the oncologist to kill my cells with chemo, I choose these things.  They were not inflicted upon me.   These things were done in response to my request “help me stay alive”.  I choose to feel gratitude for these things.  I suppose could react to surgery by viewing it as an invasion, or consider the chemo a permanent scar on my soul, but really, these were gifts to me.    I don’t think it’s possible to feel grateful and hurt at the same time.  I am filled with gratitude, gratitude for skilled surgeons hands, gratitude for nurses who help me when I can’t help myself, donors who helped build the hospital I seek care in, the doctor who attends conferences to advance his understanding of my disease, drug research and chemo that eats up cancer cells, gratitude for friends taking time to write a note saying they are thinking of me, the list is endless.  When my head, heart and soul focus on gratitude I don’t feel like a victim, I feel blessed and bestowed upon.  And as Grant said...we are still alive...this is good.

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend." - Melody Beattie

As I sit down to write more it’s a day later.  I have just finished 10 days of radiation treatment and having been away from home I am probably even more than my usual reminiscent self.  While all I have written still feels true in my mind it would be wrong of me to not also share that I don’t maintain a rosy, gratitude infused attitude all the time.  There are times when I feel angry, sad, let down, frightened, bewildered, panic, disappointment, frustration and there are times when I can’t take another step...when I have to just pause before I can go on.  I heard a Mom speak, back in 2009, about her experience of watching her daughter fight and eventually die of osteosarcoma cancer.  She said something I try to remember, “When bad news came, we (her daughter and herself) allowed ourselves 24 hours of feeling all the negative emotions we had, but then, after the 24 hours, it was time to get on with life”.   Because as Grant so wisely and simply said, “We are still alive”.  You just can’t argue with that.

p.s.  I learned that in the Spring of 2013 my friend Grant passed away.  This post is the most read post on my blog and I dedicate it to his friendship and wisdom.  Grant was in the bed beside me during a chemo stint at the Jewish General Hospital.  He was the one who started the conversation, went for the morning coffee and reached out in friendship.  Thank you Grant.  You made a difference in my life.

Treatment again...here we go...round 6

Like a boxing match...the bell rings and round six begins.

Oct, last fall, my CT scan showed a small tumor at my bladder area which we were sure was more sarcoma and a small nodule in my lung which they could not be sure what it was but potentially was my first metastasis. As my post "what do you say in a moment like this" reveals, this news was extremely difficult the time.  My doctor in Kingston felt these were slow growing and we could watch and wait...scan again in April.  However my Montreal doctor wanted the scan done at 3 months.

Jan 15, 2013 was the 3 month Ct scan and it showed good news from my point of view.  Good news is the 9mm lung nodule is now gone.  This is very good news indeed.  Good news is there are no new tumors.  I believe there are 3 forces at work in this...faith, fasting and good luck.  The bladder tumor did grow a bit more, from 3cm to 5cm.  After seeing the doctors in Montreal, their concern is the tumor will break through the bladder wall which would of course be serious trouble.  The tumor has to go and the treatment recommendation I again consider to be good news.  The possible treatment options were surgery, drug therapy or radiation.  The radiologist says he can radiate this tumor, which is the least invasive, lowest side effect option. I have had my lifetime limit of radiation to most of my abdomen but this tumor is below that field.  The possible side effects during treatment and two weeks after it are:  don't consume food rich in fiber, raw vegetables and fruit, wear loose clothing over the area, protect skin from sun, don't swim in salt water, frequent urination, mild diarrhea. Okay, lets do this!

Getting radiation markings done Jan 2013

 My plan...to take the train to Montreal and stay at the Canadian Cancer Society lodge while going for treatment daily at the Jewish General.  I went for my markings on Jan 23rd.  This is how it went...first I got a gown and had an iv put in my arm...standard stuff.  Then I lay on my back on the Ct table and a blue pillow filled with what seemed to be foam dots was placed under my feet and lower legs.  The air was then sucked out of the pillow, forcing it to mold around my feet and legs.  This I am told is a mold that I will fit my feet back into which will ensure I am placed in the same location on the table for radiation.  Then I got that lovely dye by iv (plus I drank some earlier) which makes me feel warm and nauseous.  I have found that chewing gum as the dye is going into my arm iv helps a lot. Using the Ct scan, laser beams are shone on my abdomen and the technicians mark out my tumor.  3 small tattoo dots are made, one middle of my low tummy and one on each side of my hip.  They tell me some calculations need to be done and then I will be called back to start radiation.

Feelin' good in the classic hospital gown :)

Life does not stop for cancer.  Sometimes cancer stops life plans though.  Right now something different is happening - my plans in life seem to be meshing with what cancer is requiring.  In March my husband and I are planning to join HaitiArise, a team bringing medical care to Haiti. This has been something in my heart I have wanted to do for many years. My nature is not to let anything hold me back from doing what is important to me and my drive is really strong.  But I recognize this mission and my health affect a lot of people and it's not just about what I want to do.  I have prayed on it.  I still am praying on it.  It feels right, what I am doing and the plans that we have made.  Potentially a lot of obstacles could be coming up and aside from the fact that I have a tumor and it needs treatment, everything else is falling into place so easily and perfectly that I feel strongly God is putting this path in front of me. Faith is taking the first step when you can't see the whole staircase.  ♥


It's important to have fun, everyday.  My sister went with me to Montreal on Jan 23rd for the markings and boy, did we have fun!  We packed an awful lot of stuff for a one day trip.  It could have been considered stressful, with the train being delayed going down and the risk of missing our train back home but we didn't let it feel like that.  We laughed, we a lot.  As silly as this is, here is a video clip of how to have fun on the train.  Keep lovin' life, every moment you can.  Thanks sis, love you, a lot.

Honoring medical days

Yesterday I went for a CT scan.  Today I begin the travel to Montreal to see my oncologist Dr. Kavan at the Jewish General in Montreal.  I can remember, way back (well, not so way back) when I would pack as much as I could around the test/appointment time and day.  I can clearly remember taking my lap top with me on a test day in Kingston and sitting in the waiting room entering stock definitions into the pricing software for work.  I look back on that memory now and all I can see is a gross mix-up in priorities.  I have changed my thinking since then.  Medical dates are important, I have always thought that.  But how to conduct myself around that date is also important.  It's a stressful time and even though I have become comfortable, used to and usually good at handling these days I recognize that there is a lot going on in my mind and body.  There is physical requirements of the test, such as taking the contrast dye, being hit with radiation from the machine, and the traveling.  And there is lots going on with my emotions and adrenaline.  Now I give myself a break on test days.  I make it a special day, to me it's respecting and honoring myself.  This is hard to put into words.  I guess if I were saying it in words out loud to myself it would go something like this...."today is an important day, you are going for a Ct scan.  Naturally you are going to be feeling anxious about the results of the test, wondering if the scan will confirm good or bad news.  I know the test makes you feel nauseous and upsets your digestive system, that afterwards you have a hard time not binge eating on treats.  To today I am giving you permission, not just permission but an order, to take it slow, do some things you enjoy today and don't think about anything other than being gentle with yourself". 

So today, instead of squeezing in an hour of work before I left I took that extra hour I had in Belleville to do some things I had been wanting to do, like go to TSC and try on overalls to find ones that fit me (gift from Mike from Christmas), have a wee visit with my sister (always fun), then I headed to Kingston and arrived early.  I parked down by the water and walked back to the hospital, poking my head into a couple of interesting shops along the way.  I went in for my test, got my magic drink (the contrast dye) and then went back to Princess street for a bit more exploring.  I returned to the hospital for my test time, chatted and smiled with the other patients and nurses.  After the test I met with my parents and we had dinner together.   Then I bought a coffee and 2 deserts (the after test binge eating that I still do on occasion, I have no idea why, but I do) and drove home listening to some great tunes on the radio.  Test day - a day to be enjoyed.  A gift from me to me.

I was looking for cartoons about waiting rooms and came across this one...it makes me laugh!  All the medical tests and strange body things start to seem normal on a cancer journey and this cartoon seemed to capture the essence of it.  Besides, it's really funny and you gotta laugh at yourself sometimes.  After abdominal surgery I always seem to spend a lot of time focusing on poo :)

Take one step, take one more, take one more....

Today I started back into running - got my butt outside and moved it!  Why today? when I have been meaning to get back into it for months now.  Well, I set a goal and signed up for a run on Mother's Day 2013, the 10K Run for Kids Cure.  Not only that, but we now have a whole team going so I am really committed.  The preparation seems daunting - 16 weeks of a training schedule to follow - 3 days per week.  But today I realized that I should start the same way I start anything that seems overwhelming - by taking one step.  Then one more.  Then another.

"Take the first step in faith. You don't have to see the whole staircase, just take the first step."  

 ~ Unknown ~ 

I then got to realizing this is how I get through all difficult things.  I focus on the steps.  Not the whole staircase.  If I look up to the top step is looks too far away, and the climb too steep but if I focus on the first few steps, on even just the next step if need be, then it's manageable.  I am doing that now with the diagnosis of my cancer being back.  The initial shock of the Ct scan results; the tumor by the bladder being detected and the possibility of lung spots has settled down.  I have my next steps and now it's manageable.  I don't know how it's all going to work out but I know I can take a few more steps.

The race belongs not only to the swift and the strong,  
but also to those who just keep running.
~ Unknown ~

I found this prayer on the Cancer Crusade website and it has become a purpose I have taken into my heart ... (http://www.thecancercrusade.com, which has been a source of encouragement, humor and information for me for many years now).

Dear God, help me find that place inside me where there are reserves of strength and courage I have yet to use, and lead me to share that strength and courage with others who are struggling
to find their own.
Amen 

On the Survive and Thrive Expedition this past summer, on the Owhyee river, one morning the group awoke an hour before dawn so we could hike up a seemingly huge mountain to watch the sun rise.  I know all of us were doubting we could make it to the top. It was a quiet group that early morning, as we took it one step at a time.  We reached the top and it was breathtaking, so worth it!  A lesson I aim to remember.  Here are pictures of us hiking up and enjoying the rewards of our efforts. 

Just take a step, have faith and take one more step.  Love, Teresa

Teresa & Mike, Owyhee River, top of the ridge, June 2012