Next Steps

Appointment at Tom Baker Cancer Clinic

 

You know you've been there way too many times when you recognize and comment on how a lot of the usual nurses are away.

However, familiarity isn't always bad - when Jacqui's doctor came in to the examination room, we were all happy to see each other - not in this situation necessarily but he's such a nice, caring man and we feel so good in his hands. 

He was just gathering information before we got there - as I mentioned last time the documents were just sent to him on Friday, but he had called Dr. McFadden to discuss everything and he was starting to form a plan. 

The real issue here is the position of the newest tumor.  As mentioned before it is between the ribs, at the back, near the spine - to operate would be very difficult because of where it is located and they don't want to run the risk of not getting it all.  That's where treating it with radiation or chemo comes in.  If they can kill the tumor with radiation or shrink it with chemo, this should also take care of the spots that are in her lung as well. 

After taking some time to talk to the radiation specialist they determined that radiation wasn't the best bet because the tumor is just too close to the spine.  So it looks like it will be chemo.  In her last bout, she had pretty much her limit of the type she was given - the primary chemo cocktail that they use for Synovial Sarcoma. - doxorubicin and ifosfomide - but Dr. Puloski said that there are secondary ones that they use that can be very effective as well - there is also the possibility of clinical trials. 

He also determined that this tumor was the cause of some pain that Jacqui has been having in her back as well as a couple of bouts of more severe pain she's had over the last little while.   

So next steps - next Monday, there will be a panel discussion on her case where they will decide the best course of action for treatment.  After that, we should hear about an appointment with Dr. Morrison, her chemo doctor (he wasn't there today for consultation) and she'll probably have to get another PET scan before they start on anything. 

So in the meantime, she's going back to work tomorrow - once again they are being very accommodating for her and we'll just be waiting to hear when her next appointment is - Dr. Puloski didn't seem to think it will take to long to get things started - I hope not!!!

And of course she still wants to go to Disneyland (grow up Jacqui- haha - I've created a monster).

I want to say thank you again from all of us for the outpouring of love that so many of you have shown us in so many wonderful ways.

Today we arrived home to this:

So much love!  Life and love go on in spite of everything!

Everything can be taken from a man but one thing: 

the last of human freedoms -

to choose one's attitude in any given set of circumstances,

to choose one's own way.

-Viktor Frankl

Jacqueline and the Terrible, Horrible, No Good, Very Bad Day

Jacqueline and the Terrible, Horrible, No Good, Very Bad Day

Well that wasn't at all what we'd wanted.  Yesterday we went to see Dr. McFadden and it wasn't just the routine, pre-surgery visit that we'd hoped. 

He is such a nice man and we could tell that it hurt him to tell us that things had changed.  The two spots were still there in her left lung and had grown a bit, not unexpected, but there were also 3 more that had appeared since the CT scan in October - which would still had of been fine to carry on as planned.  But the big change was there is a new tumor - 2cm by 1/2 cm that is outside of the lungs, also on her left side between the ribs near the spine. 

This is alarming because it gives evidence that there could be cells in other parts of her body - there may be some that aren't showing up yet.  Anyways, the short story is that the lung spots become secondary and the emphasis is on the one between the ribs.  Dr. McFadden said it would be very difficult to reach at the same time as the lung surgery and that it wouldn't be a good  idea to go in and only get part of it and disturb the cells.  He didn't want to talk for the oncology specialists but suspected that they would want to do radiation or chemo or both to reduce it and then maybe do surgery. 

So the good news is that there is no surgery on Monday, but that's also the bad news as the surgery won't take care of things as we'd hoped. 

Naturally we are once again horrified, disappointed and very sad.  We are feeling numb, tired and a little hopeless.  We all stayed home today - very thankful to have understanding workplaces - and just had time to process things.  Jacqui was able to sort out some things at work as she was preparing to be on leave for her surgery and now doesn't know what will happen.  Once again they have been so supportive and sympathetic towards her. 

So next - well Jacqui got busy today and rather than waiting for them to call with an appointment time and date, she phoned the cancer center and was able to get an appointment for Monday at 2:15.  I don't know what kind of information they'll have yet - or  if they'll have a plan, but it will make us feel better to get things started - at least get in to gather more information.   

The one bright spot was the thought that if it wasn't for our trip to El Salvador, we probably would have pushed for the surgery to be done earlier, which would have meant that she probably wouldn't have had a second CT scan and these new ones would have been left to grow unseen for a few more months - so if there is any good - that would be it.  But that does kind of feel like I'm reaching - maybe that's just looking on the sunny side - like in the last blog...

 

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...