The days are long but the years are short.

The days are long but the years are short.

That’s how it feels right now!!!  Tomorrow it’s two weeks since Jacqui came home and she is doing really well, she is up and around, not to her normal levels of energy, but just enough to get bored and antsy.
She is easily gaining minutes in her walking regimen and has had a few outings – movies, church, a pedicure (yes she gets ½ priceJ) and that kind of thing.   
She had her stitches out last Monday and the incisions look really good and are well placed for minimum visibility.  Her pain is manageable and decreasing slowly and we are working on her decreasing her more potent medications as we go along.  She wants to get off them so she can get back to driving and freedom!!!
We got notice of an appointment the other day from the Alberta Cancer Board and she is meeting with the chemo doctor on Feb 4.  This was a little upsetting as we were pretty sure there would be no more chemo, so we’re hoping it is just a check up and consultation and not a recommendation for more.  We have to do whatever we can to get rid of this, but the thought of more chemo is really disheartening.  So we’ll wait – again – to see what the appointment brings.
Surprises like that that make it hard, you just get going along and are brought right back down, I feel a bit like Golum (in the Hobbit).  He stays low to the ground, hands often up around his head in a defensive way, flinching at any move made towards him.  That’s me, I’m scared, I cringe because I’m afraid of what comes next, of receiving another blow.
I feel like I just want to take a deep breath, stand up straight, and get on with my life, but if bad news comes, I’m going to get flattened.  Like I was this past fall.  Maybe if I’m prepared, if something bad comes it won’t hurt so much, but is that even true?  Will I be able to take what comes better if I live my life prepared for the worst?
I don’t want that – I want to live, I want to run and dance and have fun with arms wide open, I want to be Maria from Sound of Music, not Golum.

And then I sit and talk with Jacqui

and she tells me things

her plans

her dreams for the future

come what may

she has hope

This was last Sunday, getting ready for church, you'd never know to look at her that she had major surgery only 10 days before!!!

Lets talk about something else

Dear Friends and Family

My Mom has been so great about keeping the blog up to date and I wanted to add my own voice to it. First of all Thank you. Thank you for your interest in my story. Thank you for your prayers, for all the positive energy you sent my way. You make me brave. I am so happy to be home, my mom and dad are great caregivers. Mom and I have been enjoying lounging and watching shows as well as entertaining!. My mom has given you all the particulars about what happened in the hospital and what is to happen next, so lets talk about something else.
In my recovery, breathing is a big deal. I have to be conscious of taking deep breaths. The night before my surgery I was searching Itunes for some new music and I looked at an artist I had found months earlier, Ingrid Michaelson, and I found a song called "Keep Breathing". She repeats "All we can do is keep breathing now". I repeated this to myself many times before and after my surgery especially when I was scared. This song gave me a lot of strength. No it was not a bible verse or a hillsong united song but I believe God helped me stumble upon that song, a little hipster diddy about breathing, and it comforted me during those scary days.
I didn't look at my bible too much before going into surgery but the one time I did I googled "verses for dealing with cancer" and it gave me a verse in Romans. I took out my Nana's little red bible to look it up and discovered she had already highlighted those verses. That was a surprising and encouraging moment. My Nana was such a faithful woman and to know I was finding comfort in something she had found special meant a lot to me.
Now that it is all over I am dealing with pain control and reminding myself that I need to relax. It is hard to be at home and be constrained to my bed or the couch, but when I try to do more I notice how tired I become. I am trying to decide on some creative projects to keep myself busy. Overall I feel happy, I hope that this is it. I will be downright pissed if it comes back, and I know you will be too.
I am very happy to be home, a little afraid that I will get bored over the next couple of months but so far I have had many visitors and even more promised visitors for the rest of the week. Please keep calling, please keep coming over!
Thank you so much for your interest in me and my family.
My mom is pretty good at this stuff hey? and what about those posts from my Dad? Tears!
Thank you for the kind notes, for the meals, for the little presents, and for those of you who pray at home, both the public and private gestures are equally treasured!

Thank you!
Love,
Jacqui

She's Home!

What a surprise!!!  Yesterday she texted me in the morning to say the Charge doctor had come in and said it looked like she could go home.  It wasn't her surgeon so I wasn't really sure that it would happen.  Then the nurse came and took off all her dressings, and the physio gave her the all clear and took her off the treatment list.  This news kind of took us by surprise as we have been told  all along that she would be in for 8-10 days.  We were a bit troubled because although a lot of the staff had been saying she wouldn't be in long, but her surgeon talked much more cautiously, saying that they wanted to be very sure not to release her too early.  So I made a couple of calls - to the surgeons office and I also spoke to the nurse for her room and they all assured us it was all good. 

Our big concerns were that they were rushing her because she was doing so well, but that's compared to all the other people that were in there.  Most are much older than her (and us for that matter) and in because they have severe conditions, she went in looking young and healthy and in comparison to everyone else, well....

So we got her all packed up and home by about 1:00pm.  She tried to rest, but it was just way too quiet compared to all the noise of the last few days.  I told her I would make things beep and make loud, rude noises to make her feel more at home, but she declined. 

It's great that she's home, no more back and forth to the hospital.  And a much better place to receive visitors!!!  

So she will be spending the next few weeks healing (she ended up with 3 incisions), doing breathing exercises and making her way from two - 5 minute walks a day to one 50 minute walk per day.  Gradual progress.  I was thinking that if her hospital time was so reduced, maybe her recovery time will be faster as well, but we won't push it.   

So many treats!

So after a good night in her own bed and a good breakfast, she took her first walk and did very well, so it's a start.  Pain is being managed and she's feeling pretty comfortable.

Her next appointments are next Monday with our GP to get her stitches out and then Feb 21 she meets with her surgeon to assess her progress - hopefully she will get the all clear to go back to work soon after that. We hope to hear from her oncologist in the next few weeks as well to see what the next step is. 

I felt like we were waiting and waiting for this all to happen and now that it has, guess what?  We're waiting again - haha - while she's recovering!  We're looking forward to lots of visitors and maybe getting a few projects done.  But I think I like this part better! 

Better Day

I don't really want to bore everyone with too much info everyday, but just wanted to put up something quick because yesterday's blog was so depressing (but true).

So the drainage tube is out - an ordeal, there was about a foot of tube inside her and the withdrawal was very painful, but it's gone! 

Now she just has the IV and the epidural tubes, so she's almost free. 

Nausea is much better, pain is under control and she did a lap around the nurses station and is pretty much able to walk with her prosthetic without the walker as well, so much more independence (and she beat us in crib!!!).

Her spirits are pretty good, especially when the drugs really kick in - haha, it's so funny - and she is asking for crackers and wants chicken nuggets. She hasn't eaten anything solid because of the nausea - maybe today.

All in all, I think she's gone from about 20% to 60% of herself.  

She is up for quick visits!

Now, today she really has to work on getting her lungs back to capacity - they are still very "quiet".

Thanks again for all the encouragement!

What a super sucky day!

We finally went back to her at the time we were allowed  (11am), and she was still dealing with alot of pain, she was so weak and gray - heartbreaking!  They worked with her and gradually started to get it under control.  She actually did very well advocating for herself, sometimes it is just a trial and error process (big error turning off the epidural) and she is very sensitive to medications.

Although the pain seemed to be under control, she was having a lot of trouble with nausea which was really tough because she needs to be up and walking to clear and expand her lungs but between her leg (quite puffy, so hard to put her prosthetic on) and feeling yucky it's a constant struggle and she was so tired!!!  Also her blood pressure was very low - at one point 80 over 40 something!

As the day went on, she started to perk up a little bit, and she got up for a little, but not for long.  She was really working hard on her breathing exercises and it just breaks my heart to see how hard it is for her to even take a deep breath.

She is in a very busy unit and nurses, physios, pain specialists and in and out constantly.  Her surgeon came in and said again how pleased he is with how everything went.  

By the time we left she was resting, her blood pressure was back up to low/normal, she had eaten some broth - so we felt a bit more hopeful.

So today - hopefully she'll get the drainage tube out of her chest.  Then more up and around, epidural out, pain control, good breathing and coughing - all on the road to getting home! 

She thinks that tomorrow might be a good day to start having visitors - again please text or msg us first.
Thank you so very much for all the words of encouragment in so many different ways - text, msg, voice mail - it's endless - it really helps to know we're not alone in this - you can't even imagine how much!
 

Long day, very long painful night....

Just a quick note. A very long day at the hospital waiting for her to get into surgery, have surgery and then come out of recovery. Ty joined us after work. What a long day -  we got here at 1030 and she was taken to pre-op at 1230 and then went in at about 1.  We got a call at about 4:15 that the surgery was done and had gone well.  We still hadn't seen her at 6:30. There was an issue with low potassium so she has had to stay in recovery longer.  Peter had been up to the unit a few times trying to get info.  At about 6:45, I got very panicky and had to figure out what was going on and just went and stood outside the surgical suite till someone walked by and felt sorry for the haggard, crazy eyed woman standing there (that was me). She said she'd find out what was going on.  She came out a few minutes later and said "your daughter said to say she's just fine". She said Jacqui was sitting up chatting away. And I thought - yep that's the right girl.  They tested her potassium once more and it was fine and we finally got to see her at about 7:45.  

The surgeon called us about 7 and said the surgery had gone very well, she didnt need a transfusion and they didnt see or feel anything extra or unusual.  He said the nodules looked exactly as expected, they will send them for biopsy and we will hear back in about 10 days or so.  She told us that they had alot of trouble getting the epidural in - it was very painful and they had to try a couple of times.  It also really hurt her when they put in the IV when we first got there, also took a couple of tries. 
She is in a 4 bed room, this is the special room while she is on cardiac.  She had tubes everywhere, the room is crowded (she is in the main -old- Foothills building - McCaig was just for admitting) and noisy and we helped her get organized and settled as well as possible.  While we were there, they got her up at the side of the bed to help the expansion of her lungs.  We left about 9 and it was so awful just to leave her alone.....
And then the night - she had to wake up every hour to have her vitals taken and practise breathing but apparently that was no problem because her pain was intense so she didnt really sleep.  Her blood pressure was too low so they stopped the epidural for a time to get it up and then when they started it up again, it stopped working properly, so have been trying to get her pain under control since about 3 - she feels so powerless.  The Pain Specialist has been in so hopefully things will get better soon.
We are headed back soon, can’t get in till 11:00. 
Thanks for all the messages, texts and everything
It feels pretty dark right now...

I just want a year

So I just wanted to let you know what is going to be happening – I think…

Jacqui is to be at admitting at 10:30 Thursday, January 3^rd and will then have surgery sometime after that, hopefully not a long wait because she can’t eat after midnight tonight!  

After her surgery, Jacqui will be moved to a special recovery area, almost like a small ICU, a 4 bed room with cardiac monitors and specially trained nurses.  Once she is stable and off the cardiac monitor she will most likely move to a room on Unit 61.  This is in the McQuaig Building – a new building at the rear of the Foothills main building.

It’s unlikely that she will be able to get a private room, as they are usually kept for patients who need to be isolated, so the best we can hope for is a semi private room  - I am disappointed about that because that means I won’t be able to stay over with her in the hospital like last time.  This actually makes me feel a bit desperate, but from other things we have been told I think this environment is much more structured than it was in her last hospital stay -  so we just have to trust that she will be well taken care of without my non-professional input – imagine that!

They are also stricter about visiting hours which are:

11:00am to 1:00pm and

3:00pm to 9:00pm 

Jacqui loves to have visitors and all are welcome, however, during the first few days, it might be best to contact us ahead of time.  I am not sure how they are about cell phones these days and I’m not sure how active Jacqui will be on hers, but I will make sure I check mine often.  So feel free to contact me in the following ways (listed in order of preference – but all are good)

Text – 403-993-1554 me or Peter 587-226-6565

Facebook Messenger

Email – pcwarner@shaw.ca

Or you can try calling my cell, but I probably won’t answer and I don’t have voice mail or you could leave a voice mail at home 403-278-8064 

So that’s kind of all the info we have right now, and info on the surgery results and everything will follow who knows when, basically our hope is for at least a semi-private room (if private is out of the question) with a good or no roommate and really kind, compassionate nurses. 

The following will be more of my ramblings, so no need to read on if you have other things to do - but Happy New Year!!!

On January 1, 2012, I decided to start a journal to record something I was thankful for everyday, this is some of what I wrote on the first day:

My focus this year is gratitude, to be grateful, so today, on day 1

I am gratefull for 2011

a year….not a great year

but a year of life and breath, joy and sorrow, fun and heartache, health and illness

filled with boredom and surprises, highs and lows, sunshine and rain and snow

that ended with Christmas together – us 4

and texting each other on New Year’s Eve, not together, but  not apart

it’s good

 

On December 31, I wrote: 

The end of “a year”

ups/downs, accomplishments/waiting

joy/sorrow, losses/beginnings, transitions/same-old

excitement/boredom

A year

Better or worse than others, I don’t know – I am happy, well grateful, that I started this journal because right now when there is lots of “scary” coming, I can remember and reflect on good!! 

So similar, could this be a pattern emerging? Is that “just how it is in this old world”? (that’s what my mom always used to say). 

For us this year was filled with a lot of sadness – other than the obvious.  While recovering from the loss of Peter’s dad in November 2011, we lost my little mama in June and then Peter’s strong little mom had a disabling stroke in late November and is now dealing with a slow rehabilitation.  Two of our siblings continued to battle serious health conditions and one battled a new diagnosis.  We lost a dear family friend.  Troubled relationships, breakdowns, some huge, some smaller, but it all feels huge when the heart’s involved. 

But – there’s another list - we’ve had graduations from university and high school, weddings and babies, travel, we’ve celebrated milestone birthdays and lots of other birthdays and anything else of we could think of to celebrate and I have my list of 365 things I was grateful for! 

As I was reading everyone’s comments on Facebook today about looking forward to a great year and all the usual sentiments of hope for the New Year, I thought, I’m not sure what I would put, I think I just want “a year”, one with life and breath and all the other stuff that comes with it and the grace to accept what comes.   

But mostly I just want good stuff (Oh there she is – the real Carol - haha)