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…..