More from Peter....

Faith versus hope.

 

I used to be pretty certain that I knew the difference between these two words. Faith is believing in something you know to be true but can't necessarily prove it. Hope is just wishing for something - like I hope to win the lottery,  however lately I feel like my faith has turned to hope. I hope there is a God, I hope Jacqui’s surgery goes well. When I try to analyze why I am feeling this way, I guess I am just not as certain as I once was, about anything. I think for the most part I was living in a fantasy world, living my life with really no major tragedies or problems. When something does happen you assume things will work out the way you want them to and when they don’t, then what? Bad things happen all the time, to everyone, really, that is life. It basically comes down to how you are going to handle it when the going gets tough.

In the movie, Signs (I know it has Mel Gibson in it but still a good flick) he gives this speech to his brother (for you movie buffs out there, I altered it slightly and took out the reference to the spaceships) He says to his brother:

 

“People break down into two groups when they experience something lucky.

Group number one sees it as more than luck, more than coincidence. They see it as a sign, evidence, that there is someone up there, watching out for them.

Group number two sees it as just pure luck. Just a happy turn of chance. For them, the situation is fifty-fifty. Could be bad, could be good. But deep down, they feel that whatever happens, they're on their own. And that fills them with fear.

Yeah, there are those people. But there's a whole lot of people in the Group number one, they're looking at a miracle. And deep down, they feel that whatever's going to happen, there will be someone there to help them. And that fills them with hope.

See what you have to ask yourself is what kind of person are you? Are you the kind that sees signs, sees miracles? Or do you believe that people just get lucky?

Or, look at the question this way: Is it possible that there are no coincidences?”

Does Jacqui have cancer for a reason? is there a message of hope that she is living out?  Am I too close to see it or am I refusing to look for it. I know she is an inspiration to some, (myself included) probably more than we will know and probably more of one than if she had been living her life as I would have planned out for her

I need to look at the positives, yes Jacqui has cancer, again, but the upside is we still have her and we still have a fighting chance to beat this effing disease. Hope. Some aren’t given a chance to fight, they lose their life in an accident or some terrible way, and they are gone. I would think that would be so much more difficult to handle as there is no hope in that case. 

I have people saying to me that they can’t imagine how they could handle the situation we are in and to be honest, there are some days where I don’t think I can handle it and yet life continues, your job still brings you to work each day, you continue to breath, eat, live and sleep (sleep is more difficult but may be overrated too) you continue to function even when things seem less important, less meaningful, you continue to live your life and try to remain hopeful. And really, no matter how bad you think things are there really are people living through way more difficult situations then the one you are in.

So this holiday season, all I really want is to put hope in my faith and faith in my hope. I really want to be in that first group and see the signs and evidence that there is someone up there watching out for us.

We have a date!!!

We have a date!!! Jan 3…

No Brady Christmas for this Carol! But that’s okay, at least we know something.

I had started this entry this morning, but didn’t have time to finish before I had to run to yoga, I have to practise my breathing so I can teach Jacqui the yoga breathing technique to help her gain lung capacity after the surgery.  Anyways, I’m so glad I didn’t post what I had, I was feeling very discouraged, it wasn’t pretty, I felt really at the end of what I could handle - I felt like I was floating in a big bubble of water and trying to breathe…hmmm isn’t that drowning? Sadly that feeling is not eased by comfort eating or binge drinking…

When I got home there was a voice mail from the surgeon’s office regarding a surgery date, after another voice mail we finally touched base and it’s set for January 3^rd.  My reaction was absolute relief; it’s just so exhausting to just be in limbo.  I’m sure other emotions will follow as reality sets in, but it’s so good to have a starting point.  And this is only the beginning.

Earlier in the week, Jacqui called to see if there was any indication of when it might be and was told that the schedule was only set a week in advance and we would find out seven days before – that was so frustrating, a week before when – will that be 2 weeks, 2 months, what????  It is such an awful feeling to have absolutely no control, to try and plan even the littlest thing while having this big thing hanging over our heads. 

So, now I feel like we can actually plan for Christmas, with no pressure – I suddenly realized that apparently I have all my Christmas shopping done, I seriously don’t even know how that happened!  And our neighbors brought over a bunch of baking yesterday – so that’s done -  and a bottle of wine – so maybe just a little bingeing!!!!

Many people say “God’s timing is always perfect” – maybe, but I wonder sometimes!!!!!  Many, many years ago I heard a song about God’s timing that has always stuck with me when I’m waiting for something – this is one of the verses:

In your way and in your time

That’s how it’s going to be in my life

And though some prayers I’ve prayed may seem unanswered yet

You never come to quickly or too late

And I will pray and not regret the time

In your time – there is rest 

Don’t regret the time, just rest – when will I learn? 

She really is 1 in a million!!!

Very quick update after a 3 hour series of appointments today - first of all no surgery date yet!  Now that all the pre-admission requirements have been met, setting the date is the next step.  I think Jacqui may call Dr. MacFadden tomorrow or the next day to spur things on, whether that will do anything or not I don’t know, but we don’t want them to forget us.

So she met with a nurse who took all her vitals, then someone came in to do an EKG, then the anesthesiology doctor came in to talk about that and pain management after surgery and then we spent some time talking with the physiotherapist about getting her lungs working well asap after surgery.

The process is to get patients up and around as soon as they can after surgery, same day if possible, this helps to clear out the air passages, aides in the healing process and helps to prevent any developments ie pneumonia.  Of course she has a little extra challenge because she might have trouble fitting in her leg after the surgery so it will be hard to get around.  Crutches and walkers may not be an option because she won’t be permitted to lift more than 10 lbs after surgery and both of these require lifting her own weight,  so we are going to have to be creative, but everyone was very positive and encouraging about her otherwise good health and hopefully quick recovery.

The whole thing was exhausting, J had to go to work after the appointment, I came home and fell asleep for an hour! 

What is synovial sarcoma?

Synovial sarcoma is a type of soft-tissue sarcoma. It is a rare cancer. Only about 1 to 3 individuals in a million people are diagnosed with this disease each year.  

She really is one is a million!!!

Some thoughts from Peter

-but first a quick update

Wednesday, Jacqui had a phone appointment for pre-admissions at Foothills with a nurse named Val.  It took about ½ an hour and they gathered a lot of information from J and asked a lot of questions.  Looks like she has to avoid a few things for up to 14 days before surgery so she hasn't been told to start yet, so timing.....?

This morning she had to have bloodwork done and then on Monday she has her pre-admissions appointment at the Foothills where she will visit 3 different departments and come home with a booklet detailing how surgery will take place and all sorts of other information.  Maybe we'll get a better idea of the date after that - or not.

Peter wrote what's below a little bit ago - it took him awhile to be okay to share it - I know it will be shocking to some (hahaha), but I do alot of the talking and sharing, so it's great that he can give his perspective as well:

Putting my thoughts down in writing, kind of a new thing for me but here goes. 

My Daughter has cancer, again. As a Dad, this is something I can’t control and I can't fix. What a helpless feeling. Aren’t Dads supposed to fix things? Have all the answers? Never let their kids see you cry? This is so frustrating and so humbling. To know I am not able to be my child’s superhero. It breaks my heart. To know I can't help prevent this, I can't stop this and I can't fix this makes me question what can I do? And yet, Jacqui has never once asked me to fix this, stop this, prevent this. She continues to amaze me. In all honesty, she has become my super hero. I always thought your kids were supposed to learn from

you however I have quickly learned that this is a two way street and I continue to learn from her and I couldn't be more proud of her.

As a man of faith, there are days when i think I used to be a man of faith,  but deep down it’s still there but my faith has been tested far beyond what I can comprehend. There are days when I question why her, why my family, why do we have to go through this again. Questions that I know can't be answered until I meet God one day. For now, I have to trust and really just marvel in the way that His love shines through the many people who have cared for us and continue to amaze us with their outpouring of love and support. That in itself can be hard to take as you are taught that it always better to give than receive, better to help than be helped. But as nice as those sentiments are all you can do is accept the love and say thank you. Which of course you feel that it’s never enough, for now that’s all I can give back.

Waiting... waiting for appointments, waiting for Doctors, waiting for tests, waiting for results. So difficult to be patient, knowing its a process that you have to wait while it unfolds. Yet life goes on. Some days you wish you could just fast forward through all the commercials so you can see what happens in the show. Yet sometimes its what happens during the commercial break that can effect how you feel. Jacqui looks great, and is feeling well. So unlike last time where she actually had a pain in her foot, that affected her lifestyle, there was something showing that was affecting her health. this time around its unseen and unfelt. This makes it more unreal and yet more scary as its invisible. So as the days and weeks go by, day to day life starts to take the appearance that everything is ok and yet this black cloud is hovering over us. A cloud, which at this point we are unsure how bad of a storm is brewing... So you never get too comfortable because that you know that a storm is coming, you just don’t know how bad it will be.

 

I want a Brady Bunch Christmas...

So here is a little update:

Jacqui had her tests at the Pulmonary Lab on Wednesday.  They seemed to go well as she only had to have 3 out of the 4 tests (they only do the 4th if there are issues with the previous 3) - so that's good!  They will analyze and send the results to Dr. McFadden (he got a 4.8 out of 5 on "rate your doctor" by the way) and we'll hear at some point I guess. 

Now the next steps are - on Wednesday she has a "phone" appointment with a nurse and then on the following Monday (the 10th) she has an 2-3 hour assessment appointment - both are part of the pre-admissions process.

That's kind of good and not so good, the good is that steps are being taken, but it doesn't look like she'll be able to get her surgery in with enough time to be home from the hospital for Christmas - we don't want her to have to be there for Christmas Day. We would have liked to start the year off with this behind us!  Anyways....

This is my Christmas wish - that the surgery would be done, she would recover well so that her 8-10 day hospital stay isn't extended for any reason and then is home in time for Christmas Eve - wouldn't that be heartwarming - kind of like when Mrs. Brady gets laryngitis and gets her voice back just in time to sing in church on Christmas Eve (Brady Bunch Christmas 1969).  Oh 60's sitcoms, everything always turned out just right!!!

We are so lucky!? :)

I woke up this morning to a really nice message from a great friend who also sent this link along about gratitude:

 

https://www.youtube.com/watch_popup?feature=player_embedded&v=nj2ofrX7jAk

 

What an wonderful way to start the day, time to stop and reflect.  More than anything I had such enormous gratitude for this friend who in his own busy life took the time to think of us and share something so beautiful and touching.  Then I thought "I'm not that nice, I only think about myself!!!!" and my next thought was "We are so lucky"  which then made me laugh because some wouldn't think we're all that lucky right now, but it would be so hard to do this by ourselves and I'm so thankful we don't have to!  Humbling!  

Tomorrow Jacqui has her appointment at the Pulmonary Lab at the Foothills, not really sure what that involves, but it's good to have things to do, it makes it seem like we're getting somewhere.  She has also been contacted by the Pre-Admissions nurse to get set up for that testing as well.  Still waiting for a date but having these things done seems like progress.

 

But what is progress.......every once in a while I get a flashback to the whole hospital experience last time.  For us it was a very good experience considering, but I have a certain dread and can't imagine it will be as good this time.  Last time I slept in her room every night for 10 nights except one or two -  she had a private room and the nurses were so accomodating.  Will she get a private room again, will the nurses be as kind, how will she manage if I can't stay with her, all these things running through my mind.....what if, what if.....

 

So I started out with gratitude and moved quickly back to worry - the circle of life - so I'm going to watch that video again, read all my messages from friends and family and get myself on the right track again! 

 

Be joyful in hope

patient in affliction

faithful in prayer

 

 

Hope

Hope

hope remains undeterred.
she pulls on her jeans, ties her boots
and walks out the door for another test.
she glows below the autumn trees
feet hitting pavement as they’ve always done.
hope is my best friend,
sometimes i’m unsure if she’s beside me
or within me
if these boots are mine or hers.
- Mary

I just found this on this website:
http://sarcomahelp.org/sarcoma-stories.html

The greatest freedom is the freedom of not needing to know what is going to happen next

It was American Thanksgiving yesterday, and we had to celebrate a little.  Jacqui and I were both off work and Peter took one of his million vacation days.  Poor Ty had to work though.  We spent it well – we watched the Macy’s Thanksgiving Day Parade in the morning…

 

Then we went to see Skyfall in the afternoon, ate turkey sandwiches and pecan pie for dinner and had a fire and played dominoes for a while in the evening.  I was thankful for a slow, lazy day in the middle of all of this.

 

We talked things over after the appointment Wednesday, slept on it and Jacqui came to the conclusion that she wants to get this over with.  So she has phoned the surgeons office and hope to get a date soon.  Now we are not sure what soon really means – how full they are, but she is motivated to have this surgery sooner rather than later.  As we mentioned the other day, she has to have a few tests done before – one of which is in the pulmonary lab and that’s scheduled for next Wednesday (the 28^th). So that’s a start anyways. 

This would mean recovery over Christmas, which is a bad news/good news scenario – bad, we won’t be able to everything that we traditionally do, and good because it takes the stress away from having to do everything we traditionally do.

We would just hope that if she was to go in early that she would be home for Christmas – ideally that would mean having surgery no later than Dec 15^th,   with a good recovery.  The other option would be to have it between Christmas and New Years.  It would just be nice to start the New Year with the surgery behind us.  So that’s our prayer.

 I would just love to plan this all out on a schedule, but I am very (very) slowly learning that sometimes…

“The greatest freedom is the freedom

of not needing to know

what is going to happen next”

Oh man – I should be feeling very free!!!!! Still working on the surrender, patience, gratitude…

 

 

Things are starting to happen!

This is what Peter wrote in an email to his mom and siblings – it makes my blogging easy tonight…

"We met with the Surgeon this afternoon and at this point, surgery is really the only option. Jacqui has three lumps one at the top of her left lung and two near the bottom but all 3 are on the outer edge which apparently is a good thing. Sounds like she would be in the hospital for about 10 days as its considered major surgery and certainly one with risks.

As for the operation, they would make 3 or 4 small incisions and go in that way which is much less invasive however she will be in a lot of pain and discomfort afterward. As you can imagine it will be painful to breath let alone move about, recovery would take 4 to 8 weeks barring any infections or problems with the staples etc.

As far as timing, sounds like its up to Jacqui, they could do it before Christmas, in between Christmas and New Years or early in the new year. Pros and cons to each scenario. We were happy they didn't talk of wanting to take the lung completely and from the sounds of it the surgery would be the only treatment, so no chemo or radiation. This is good news however no guarantees the cancer couldn't come back... 

They will be scheduling her for a lung test and some pre surgical lab testing which will be done in the next week or so and then Jacqui can decide regarding the timing of the surgery. Right now she is leaning towards sooner rather than later however she is really enjoying her job and kind of wants to keep going. Obviously living with the thought of having to go through this is tough to imagine."

Peter summed it up very well – but I have to just add – Jacqui amazed me once again with how she handled herself at the appointment – she seems so composed and thoughtful, and once in a while a little tear will escape – it breaks my heart watching her being so brave in such an overwhelming  situation – I want to be just like her when I grow up…

We have a date (not the big one - but it's something)

Finally - we heard from the Thoracic (lung) surgeon’s office!!!!  Jacqui has an appointment with Dr. McFadden on Wednesday, Nov 21 at 2:30 pm.  They originally called last Thursday, but in a comedy(?) of errors, we ended up knowing they had called and not having any information and not being able to get in touch with them – so close, but so far…….

So that’s what we have, a date…..I don’t know what we’ll find out – I hope for an action plan, I hope for a surgery date, I hope we can get this all over with, but it may just be more info gathering and more talking – and and and – if I was writing this with a paper and pen, that line would have ended with a scribble that covered the page – my written version of impatience!

You know that excited feeling of anticipation you have when there is something really cool thing coming up – like a great concert or someone fun coming to visit or getting new shoes or a first date (I think – it’s been awhile) that’s how I’ve felt since I found out about the appointment a few hours ago – and then I think – “Oh yeah” and reality sets in again – but it’s amazing what makes you happy when stuff like this is going on. 

I did go to a great concert the other day – Leonard Cohen (no haters please- you know who you are) and it was wonderful – what a gifted man – so many of his lyrics spoke to me so deeply.  I went to bed singing that night….words of comfort and petition….it always amazes me how there are people I will never know or ever even meet who know exactly how I feel without my having to say a word.  It just goes to show King Solomon was right when he said:

What has been will be again;

What has been done will be done again;

There is nothing new under the sun.

Annoying when you want to be special, but comforting when you don’t.  Can’t wait till Wednesday……..

The Perfect Trinity

Yesterday I felt sad....

Just a few little things caught me off guard and I felt heartsick.  So I vented to a few (lucky) people. 
One helped me to laugh, one helped me to cry and one helped me to think - the perfect trinity!   

Don’t miss the diamonds….

Jacqui talked to a nurse at the Tom Baker Sarcoma Clinic today who told her that the doctors would be discussing her case in “rounds” on Monday.  This is where they all get together and discuss the best course of action – I thought this was happening sooner, but I guess it takes a while to get them all together – obviously they are not reading this blog and don’t know how impatient I am!  Anyways, they said we should hear something next week…but we’ll see. 

There is so much going on, so much I need and want to do, plan for, hope, but I feel like I’m on a phone on hold with really bad muzak playing – I just want to hang up. 

Jacqui’s been at Apple for a month already, I can’t imagine if she had decided not to start the job – sitting around waiting for something to happen.  I was thinking the other day about how hard it was to wait when we first heard about the shadows – we were so desperate to find out so she would be able to figure out what to do about her new job.  Well we found out not even 24 hours before she was to start, she really didn’t have time to think about it and just went for it.  If she found out earlier, she may have decided that she shouldn’t start with such uncertainty in her future.   The nicest part was how encouraging they were with her, a brand new employee, and told her they would support her and work with her in what she had to go through – amazing…… So in retrospect, the timing was perfect  – something to keep in mind each time I feel that helpless sense of lack of control – I just have to trust that there is someone in control and remember examples like this one….the diamonds!

The unthankful heart discovers not mercies

But the thankful heart sweeps through the day

And as the magnet finds iron in sand

So it will find in every precious hour some heavenly blessing

 

 

A bit of good news...

Today Jacqui heard from the doctor – other than the 3 nodules on her left lung, her PET scan was clear!!!  To put this in perspective, PET scans will show up everything, including “false positives” – and if there are any questionable “things”, they have to be tested  to make sure they are of no concern before they can get going on the real issues.  This is good news!!!

Unfortunately, the nodules are still on her left lung, of course, and so they will be talking about the next step in the sarcoma clinic today and we expect to have another appointment at some point to talk about they type and date of surgery – note I don’t say “soon”, because this is a waiting game. 

A friend gave me a pamphlet called “Dealing with the Frustration of Waiting during a Serious Illness” -  Hmmm, I thought, now that’s something I can relate to!!  I found one paragraph very true:

“The work of dealing with a serious disease involves many challenges:  fear, worry, pain and discomfort, stress and occasional frustration.  One experience, though, is constant in the journey through illness:  waiting.”

Sometimes when I feel tired of waiting or have had a lot of questions from others, I feel like I’m doing something wrong, that I need to be on someone’s case to get things going – but I have to remind myself that this is normal, it’s part of the process – it’s actually very humbling to have to surrender control of your daughter’s well-being to someone else, but…

In the meantime, Jacqui is loving her new job and is glad she has been able to keep busy these last few weeks.  It really makes me feel so much lighter (and I think I can speak for Peter and Tyler too) to see her taking on this challenge and enjoying herself so much in the middle of so much uncertainty.

Thank you all so much for your continued support – in so many wonderful ways - we appreciate this so much.  And now we’re back to waiting again…..

Surrender - it isn't easy in little or big things. We are lucky to have accepted the choice to do so.

 

Do I want to see the future?

Tuesday I woke up feeling impatient. Jacqui’s PET scan was last Thursday and I am tired of waiting for “what comes next”. Not that I’m in a hurry to do the surgery thing or whatever else will be involved but I just find waiting so hard – hmmmm, my mom always told me that if I was impatient, I would have to learn patience. You were right mama.

It’s just so hard to wait, I want to skip to the end and read the last page of this book!!!!! I was talking to a friend awhile ago and she said she wished she could just see 5 years ahead, it would just be so nice to know how things would all work out. A few days later I went to see the Hunger Games. I was so anxious while I was watching it and I was so scared for Katniss and Peeta – what was going to happen??? Well, I’m sad to say, I had read the book, in fact I’d read the whole trilogy, I knew exactly what was going to happen – it made no difference, I was still so nervous and agitated. Soooo, I guess I really do have to live it out.

Anyways, all that to say, no news yet, but it gives us a few days to pretend that all is well and forget a bit.

The sun comes up, it’s a new day dawning

It’s time to sing your song again

Whatever may pass and whatever lies before me

Let me be singing when the evening comes

 

Whatever may pass and whatever lies before me…..

Here we go....

                        “Honest cries from a breaking heart are better than a hallelujah sometimes”

So this whole blogging thing is new to me, but I need a way to share with whoever wants to know what is going on and how we’re doing without putting it all over facebook or sending out endless group emails.  This way you can check up if and when you want to and it gives me a place to say it all one time, and you’re not receiving endless emails from me. 

I want to say first of all that this will be my blog – although some of the things I say and thoughts I have will reflect what Jacqui, Peter and Tyler feel, I can’t speak for them and going through this journey – again – is so personal and different for each of us. 

To just give a quick explanation of what the current situation is, these are the things we know:  Three nodules were discovered on Jacqui’s left lung.  They are cancerous, not lung cancer, but Synovial Sarcoma, that has metastasized to her lung.  They are 99% certain that the nodules are cancerous, so won’t do a biopsy before removing them, because it’s essentially the same thing.  The doctors assure us this is treatable and that she has lots of positive indications for this – she is young, has no other symptoms and it’s taken over 2 years for the nodules to appear (the longer the time from her original surgery, the better). 

The current thought is that she will have to have surgery to remove the nodules which will involve anything from removing the individual nodules to removing the whole lung.  This will be decided when the Thoracic surgeon looks at the PET she had on Oct 25.  When this is determined, they will set a surgery date and when the surgery is done and they know more of what they are dealing with, they will decided on whether or not to do chemo. 

So we don’t know much other than it’s baaaaa-aaaaaack!!

How am I?  (remember I can’t speak for the rest of my family) – well frankly this is my worst fear – the call I never wanted to get and I am heartbroken, disappointed, terrified, horrified and overall so sad that Jacqui has to go through this again. 

This is not what I want to be doing with my daughter, I don’t want to be “that family” but it is what we have to do and so I truly and sincerely want to make this experience as meaningful as I can.  I don’t want to sound like a Pollyanna about this, but I talk to a lot of people who go through seemingly exciting events - complaining the whole way, so it’s all what you do with it. 

The other day a friend had this on his facebook page:  You really have no control over 10% of what happens in your life, The other 90% is determined by your reaction……………    I like that sentiment (not really sure about the percentages though)  I want to experience every moment, appreciate what is going on, appreciate the love and kindness that is showered on us from family, friends and strangers while not ignoring the darker feelings I may feel or the feelings of Jacqui, Peter and Tyler.  I DON’T want to waste my time being bitter or depressed.   

I am a person of faith and I am thankful for that hope that I have, but honestly, sometimes it is hard to be hopeful and I spend a lot of time ranting and raving.  But I heard these words in a song:

“Honest cries from a breaking heart are better than a hallelujah sometimes”