Back from El Salvador, and reality sets in

Back from El Salvador, what a wonderful thing -  to be able to go to that country, so full of beauty and poverty and be able to help in real ways.  Sometimes at home, when we are giving to charities and causes, we wonder 

how far our dollars really go, there you get to see the effects right before your eyes.  And if you're lucky enough to be able to go back again, you see families so grateful, making their homes and lives in these simple structures.  And to share it with my kids... It feels like a gift to my soul to be a part of this.

Back from El Salvador, and reality sets in.  Nothing between us and surgery anymore.  Christmas is over, we're home from El Salvador, all the buffers are gone.  Then, an unexpected call from the surgeon - another appointment on Thursday.  What is this about, is there something new on the CT scan or is it just routine?  Fear and panic set in, it's not usually good news, but we can't think that way, but how do we stop?

I heard this song today and it reminded me of my dad, I remember him playing it ...

Well there's a dark and a troubled side of life.

There's a bright and a sunny side too.

But if you meet with the darkness and strife,

The sunny side we also may view.

Keep on the sunny side, always on the sunny side,

Keep on the sunny side of life.

It will help us every day, it will brighten all the way,

If we keep on the sunny side of life.

Oh, the storm and its fury broke today,

Crushing hopes that we cherish so dear.

Clouds and storms will in time pass away.

The sun again will shine bright and clear.

Keep on the sunny side, always on the sunny side,

Keep on the sunny side of life.

It will help us every day, it will brighten all the way,

If we'll keep on the sunny side of life.

Let us greet with a song of hope each day.

Though the moments be cloudy or fair.

Let us trust in our Saviour always,

To keep us, every one, in His care.

Keep on the sunny side, always on the sunny side,

Keep on the sunny side of life.

It will help us every day, it will brighten all the way,

If we'll keep on the sunny side of life

 

June Carter Cash

 

 

 

 

 

 

I'm just going to follow the bus...

The Pessimist complains about the wind

The Optimist expects it to change

The Realist adjusts the Sails

-       William A. Ward

The other day I taped a dime to my desk at work. 

It reminds me that life can turn on a dime…both in good and bad ways.

I recently saw a clip from a movie where someone’s life changed in an instant in a really good way – you could just see the relief, the joy, the wonder.  I was jealous, I want something really big and life changing to happen – but only if it’s good.  

So when I taped the dime to my desk, it was just a reminder to not want to be somewhere else, be someone else or have or do something else.  Life can turn on a dime, so live what is – I guess that's adjusting the sails.

And this brings me to the realization that it’s January now and my thoughts are turning to what is coming.  It’s been easy to forget with a busy fall and Christmas and all the fun, but here we are.  A CT scan yesterday and a phone call the other day from the pre-op clinic quickly brought reality crashing back.  Another appointment on Monday, blood tests next week and then surgery on the 27^th. 

But before that - El Salvador – the plan is that Jacqui, Tyler and I (not Peter this trip – maybe next time???) leave one week today – I am so excited to be able to return there again. The first group left today and will build 15 houses and then our group will build 15 houses in our week – just think in two weeks 30 families in El Salvador will have new houses to move into – Homes.

Homes where they can lock the doors and windows and leave so that they can go to work to provide for their families. 

Homes with real floors and roofs that will help them to keep dry in the rainy season. 

Homes in which the walls are secure and won’t shake and fall apart when the volcano rumbles and there are earthquakes.

That is so amazing; it gives me a feeling of relief, joy and wonder to be able to be a part of this.  Hey – wait a second – isn’t that what I am looking for – hmmm.

 

I was asked to do the blog for the week we'll be in El Salvador and I have asked Jacqui to help me.  It will be on the Stepper Custom Homes Facebook page and I will share the link on my Facebook page and then try to link it on here as well for those that don't have FB.  

 

I have a couple of concerns, first obviously for health - for all, but mostly for J as we don't want anything to cause any delays to the surgery.  Also a volcano 40 kms from where we will be staying spewed ash and gas last week - nothing since and conditions seem to be fine now but hey have been monitoring things and as we know life can turn on the dime.  

 

Yesterday Peter and I went to the funeral of a young man taken suddenly last week and his father talked about driving home from Edmonton to Calgary in a blizzard after hearing about the death of their son.  He said driving was so difficult because not only were they were in shock but visibility was terrible because of the snow.  A Greyhound bus came in front of them and they followed it all the way home to Calgary.  They couldn't see anything - nothing around them, not what was in front of the bus, only the back of the bus - so they just followed the bus.  In the end all they needed to do was trust the bus to guide them.

 

I'm just going to follow the bus...    

 

Turn your face to the sun and the shadows fall behind you

Last week, we got a call from Dr. McFadden's office - Jacqui's surgery is booked - January 27th - and she'll have another CT scan and the pre-op work done the week before we leave for El Salvador.

That was easy....

Last year at this time we were wracked with worry, waiting for appointments, dates, not knowing what to expect.  And this time it's all there ready and waiting.

And then the "what if's " start:

Is it going to be worse if we wait

Shouldn't we just be getting it out now

What if she gets sick in El Salvador

 

I know that's what lots of people are thinking too - and the answers are:

 

Who knows?

It's basically the same time frame as last year - there's a line-up!

She could get sick at home too.

"People say you can’t have faith and fear at the same time. But you can. I’m exhibit A. I prefer to think, Courage is fear that has said its prayers. So I said my prayers"

(I stole that from an article on Anne Lamott's Facebook page)

 

Last week I posted a youtube video on my Facebook page (http://www.youtube.com/watch?v=WOlpdd7y8MI) - Jimmy Kimmel had parents tell their kids that they'd eaten all their Halloween candy and then video tape it and send it in to him - nice! Anyways, the reactions were predictable - poor little kids.   It was interesting to watch the way they had grouped the clips - it seemed like the first group just burst into tears of shock and horror, the second group were mad and the third group was resigned - one said "maybe next year we can share" - how sweet is that?  The whole thing was just fean (funny/mean - I made that word up).

 

As I thought about it later that day, I realized that it is a really good illustration of how I've reacted to each time we've been given the bad news -

 

First time - shock, open-mouthed horror and deep sadness

Second time - anger and deeper sadness

Third time - resigned, very sad, but strangely, with a bit of hope  

 

Why hope?  Where did that come from?

It doesn't make sense,

but as long as there is life

 and there is something to be done,

there is hope.

Sometimes this cancer goes away

 

 

I've had many people tell me they are so angry about this recurrence and just don't understand or know what to say to us or what to do

 

Rejoice in hope

Be patient in tribulation

Be constant in prayer

 

 Turn your face to the sun and the shadows fall behind you

~Maori Proverb

 

 



Time to learn a little Spanish!

Time to learn a little Spanish!

The appointment with the surgeon, Dr. McFadden, went well on Friday.  He is a very soft spoken, kind and caring man who takes the time to sit down and talk to us like he has all the time in the world. 

Even though we've only really met him a few times, and it's been quite a few months by now, he remembered so many little details about Jacqui's last surgery and about her life that he referred to during the appointment.  This was so reassuring - we feel like he really does care, that she's not just a number.

He told us that her surgery this time would be very similar to last time, that there could be minor complications due to scar tissue and that her recovery might be a little longer this time, but that he thought she would do just fine having it and he expected positive results once again.  He has a way of telling us all the things that can go wrong and then saying "But you're not a risk for that, you'll be fine".

Jacqui told him about wanting to go to El Salvador and he said he didn't think there would be any additional risk for her to have the surgery after her return - then I asked him at least 2 more times if he was sure :)    If all goes to plan (duh duh duh - famous last words) all the preliminary testing will be done before we go and then she will have the surgery a week after her return - so the end of January.

Dr. McFadden asked her about going down there and she told him that people have shown her overwhelming love and kindness over the past years that she feels like there is no way to repay that so she wants to give back by giving to these people who are so needy. To which he replied "I like Scotch" - Bedside manner and a sense of humour!!!

So we left the appointment feeling really good - which is weird - she still has cancer, still has to have major lung surgery, but she gets to keep the El Salvador hope alive.

 

Instead of the cancer taking away El Salvador, it can just wait it's turn.

 



I want to go to Disneyland

The appointment at the Tom Baker Cancer Center was yesterday - Jacqui had an Xray followed by consultation with 3 doctors and a resident - a bit of a three ring circus at times - at one point, it was Jacqui, Peter, I, 2 Drs. and a resident in the very small consulting room at once!  It was overwhelming to say the least.

 

Especially since the news was not good - the two little suspicious spots seen in the CT scan 6 months ago on the left lung are no longer just suspicious - they have grown (one from 4mm to 1 cm and the other from 4mm to 6mm) and they have to be removed. Yes, they are cancer, metastasized from the original - very typical for synovial sarcoma. 

Again, our hearts broke

 as Jacqui sat quietly with tears

rolling down her cheeks

 while being told the news. 

 

Then she proceeded to tell them that she was going to El Salvador to build houses in January - they would have to work around that, then she looked at us and said "I want to go to Disneyland".

So we keep marching on....

One bit of good news was that other than the two, there weren't any other shadows on the left lung and the right lung is clear.  That is a big deal.  Although there was a bit of confusion as the tech had read the scan wrong and said there was a spot on each lung.  Our favorite Dr. Pulaski quickly went to check and came back to say the right did look clear - there had been a mistake. 

 

Thankfully we didn't have to wait long to get an appointment with the Thoracic surgeon - same one as last time - his office called today and she is going for a consultation on Friday.

 

So in answer to all other questions - my answer is "I don't know" and I will alternate that with "We have to wait".

We process this - in our family - in 4 very different ways, it's hard to mourn this loss of hope (not totally, but the hope that this time it would be okay), try not to worry about what's coming (we've been through this and know what to expect) and comfort each other at the same time - collectively we feel bored with this disease and it's demands and exhausted from keeping it together.

 

Thanks to all who have been reaching out, supporting us with your thoughts and prayers and in so many other ways.  One of the hardest parts is that everyone is so supportive and we feel like we are  disappointing everyone once again.  This is not meant to be a plea for sympathy or self serving, it's just so touching to see how many care so deeply - it's humbling. 

 

So bad news....

but then someone reminded me about the Farmer from my last blog...

Maybe...

Maybe

This afternoon is the CT scan - and yesterday someone told us this story:

Maybe
Once upon the time there was an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit. “Such bad luck,” they said sympathetically.
“Maybe,” the farmer replied.
The next morning the horse returned, bringing with it three other wild horses. “How wonderful,” the neighbors exclaimed.
“Maybe,” replied the old man.
The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune.
“Maybe,” answered the farmer.
The day after, military officials came to the village to draft young men into the army. Seeing that the son’s leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out.
“Maybe,” said the farmer.


It's all perspective.....Happy Thanksgiving!

Thanks John!

So people having been asking - How’s Jacqui?

So people having been asking - How’s Jacqui?  How is she feeling?  What’s next? – so I guess it’s time for a little update.   

Summer flew by, starting with the flood and then Jacqui moving out at the beginning of July.  Tyler got busier in his job and is rarely home, and we’re almost feeling like empty nesters again – he’s looking forward to making us real empty nesters again! 

It was summer - road trips and plane trips, lazy, long dinners on the deck, tomatoes from our garden, weddings, bare feet, being warm  

Now it’s fall – long sleeves, routine, falling leaves, jackets, dark mornings and evenings, chilly air and appointments.... 

So to answer the questions:   Jacqui is doing well - living in her new place, enjoying work, going to music festivals, hanging with friends, making plans to go to El Salvador to build houses in January.  She looks healthy and is feeling really good...

What’s next? 

On Monday she went for blood tests

October 14^th –  CT scan -  yes thanksgiving day 

October 21^st - Tom Baker Clinic for a checkup and meet with her oncologists to find out the results of the scan

October 28 – another follow up visit 

I’ve hesitated even talking about this and now even typing it puts a lump in my throat and I am back to reminding myself to breathe.  I don’t want to seem fatalistic or pessimistic, but no matter how positive we may seem - it’s scary.   

I have to think back to that blog I wrote awhile ago about turning around into the darkness (the unknown) and just taking tiny steps to see what it holds.  "So much has been based on what I can see within the light, maybe I need to use other senses and accept the darkness (the unknown) and the beauty that is hidden within it."

So I can go into this two ways: 

Walk in slowly, shoulders hunched in protection, my arms folded around me, breathing shallowly and my eyes squinty in case something looms up that I don’t want to see.  
 

Walk in confidently with my arms open, a smile on my face – expecting the very best – positive thoughts, making plans, future hope - savoring every moment...come what may.

I'm doing a bit of both - trying for more of the second.

So if you are so inclined, we would appreciate your thoughts and prayers.