29

I've been wondering what to do with this blog and it feels like it's done - when we started it a few years back, it was to inform everyone what was going on as Jacqui was living with cancer. And now that we know the end of her story here with us, it seems like it's time to end, but before I do, I have one more thing to share.

Time is moving on and we're not rushing to go through and organize all of her things, but one thing we have found a lot of, as we sift through, is journals - every where we look there are journals and of every colour, size and shape.

I think she started journalling the day she learned how to write and before that she just drew pictures.  Not that this is surprising to us - we bought her many of these journals and there were many times we found her late at night busily writing down all the very important things that were going on in her life. 

All the exciting, thrilling, devastating, happy, sad, scary, annoying, concerning, delightful, indifferent (not many of those), weary, pleasant, obnoxious, angry, elation, eager, disappointed, peaceful, upset and pleasure filled moments of her life.

And now the question is - do I read them?  Other than a few pages here and there, I have decided that I won't.   I want to believe that our relationship was good and strong and open and that she told me the things I needed to know but still kept some secrets to herself. 

But yesterday, I found a journal that I hadn't seen before and it was from her last days.  When it fell open, I noticed that the script wasn't as neat as usual, things seemed a little bit scattered but she had been writing a lot.  I was sticking to my 'Don't Read" policy, but I noticed that one page had a marker, so I took a look.  Here is what it said:

Today is her 29th birthday (and in a few days it's 3 months that she's been gone) and I think that her life was lived very well and that she will be remembered for not only the things she's written above, but also for the thousands of little memories she shared with so many.

Happy Birthday Jacqui, I can't wait till we can spend it together again. I'll love you forever!

Love,

Marmie  xo

6 Weeks...

Today is 6 weeks since the service for Jacqui....

Yesterday it was seven weeks since she left us....

So many things have happened since then that she would had so much to say about:

Big Brother has started, this season's disastrous Batchelorette, more George and baby Charlotte pix, Michael Buble expecting his second child, we saw Jurassic Park World without her, concerts both large and local have come and gone without their biggest fan.

Birthdays of family and friends, Father's Day (although she had gifts stashed away that we found or received in the mail),  wedding showers, baby showers, special visitors from England and El Salvador, gatherings of family and friends for Canada day, Stampede breakfasts and parties, sunny afternoons/evenings on patios and nacho night...now Tyler has to make the guacamole - he's doing pretty good - she taught him well.

And for me, Facebook and Instagram are just not the same without her - for those of you that follow me on Instagram (carolsunshine) you know that I have started posting pictures of her every week on Thursday for "Throw back Thursday" - #tbtjdubs #missingjdubs - I just can't help myself - I just miss seeing her face on there so much. So to those that follow me, thanks for the indulgence.

I've gone back to work part time, to a place I really love - so that helps.   Peter and Tyler went back a while ago.  Life is moving forward, life is moving on...or so it seems.

Everyday, a hundred times a day, I wait for a text or a call from her and then remember.

Everyday, I turn around to tell her something and then remember.

Everyday, when I'm home, I wait for the door to burst open and for her to rush in and tell me something new.

Tears are always close to the surface and constant reminders bring them closer, but I'm getting really good at hiding my shock when they come and gulping back my feelings.  Not always, but I can look pretty well adjusted, I can laugh and enjoy myself.  I try not to feel bad when I use her things - like her car - it's like I'm admitting she's not coming back. Don't get me wrong, I am not swallowing my feelings, I just try to keep them for a more appropriate time.

Having said that, when others cry or show sadness when they're with me or remember her in many different ways, it actually makes me feel a little better.  It reminds me that she was loved, and in turn, we are too.

People ask "How are you doing?" and the truest answer is "Fine, considering..."

As I've said before it's like living with chronic pain, or more fitting, an amputation.  I'm fine, I'm functioning, but just trying to learn to live with one of my parts missing - constantly adjusting, never completely comfortable.

Jacqui did it so well, I can only hope to follow her example.

I have heard from several people that were unable to be there that they would like to see the video of the service and this seemed the best place to post it for easy access. Thanks to the efforts of Justin and Kyle, it is posted below.  Please note because of copyrights there is no sound for the picture videos, but they were both posted a few weeks back in this blog if you would like to get the full version. 

 http://youtu.be/ghzaaqEQ8GU

#100daysofhappy

Jacqueline's #100DaysOfHappy

In the face of bad news, Jacqui decided to post 100 days of photos
of things that she was grateful for. 

This video was lovingly created by her close friend Michael Berlando
and played during Jacqui's funeral service on May 29th.

https://vimeo.com/130348558

The video

Last week at the service for Jacqui, those who were there may or may not know that the video at the end froze before it was finished and there was one more section.  Here is a link to the full version:

https://vimeo.com/129452289

Thanks so much to my brother David, for putting this together - she would have loved it!

Also I will probably post a video of the service and also the 100 Days of Happy video sometime in the near future.

Thanks again for caring!

And now it's all over, except for the crying

I'm sitting in my living room by myself and it is silent for the first time in days

In the freezer are the remains of the copious amounts of food that has been prepared and delivered to our home by loving hands

On every other spare surface are bunches of flowers - all sizes and shapes - all beautiful tributes in various stages of decay

In the corner sits a bag with cards and well wishes from so many and a book with names of those who came to pay their respects

There was a service that I think she would have loved and we were overwhelmed that so many wanted to share this with us

A walk to remember to her favorite places

But there is something missing and my heart aches

And now it's all over, except for the crying

Jacquibook

May 23, 2015

The out pouring of love and kindness to us in the past few days has been overwhelming and wonderful - someone said we should change the name of Facebook to Jacquibook.  It will take us a while to go through everything, but please know that each message and email is read and cherished. 

I wanted to let you know about the service we will be having.  The details are all at:

https://mhfh.com/tribute-ajax/print-obituary.html?id=28103

Jacqueline Michelle WARNER

August 19, 1986 – New Westminster, British Columbia May 21, 2015 – Calgary, Alberta Our princess, Jacqueline Michelle Warner left the ball at the stroke of midnight on May 21, 2015. Jacqui was born on August 19, 1986 in New Westminster, BC. In 1996, she moved with her family to Calgary, AB. She attended Langley Fundamental and Prince of Wales Elementary Schools, RT Alderman Junior High, Lord Beaverbrook High School, Capernwray Bible School and Mount Royal University. She received her history degree at the University of Lethbridge in 2012. Jacqui had a motto saying “I don’t like, I love” and she displayed this in all she did – and her passions were many: travel, music, movies, TV, British History, the NY Yankees, her faith, her chosen career, but nothing surpassed her passion for her family and friends. Jacqui lived the last five years of her life with synovial sarcoma, and she filled these years to the brim with all of the things she loved. She leaves behind her loving parents Peter and Carol, her devoted big, little brother, Tyler and her sweet kitten Miss Jany Valentine. She also leaves behind her grandma Nancie Warner and many aunties, uncles and cousins that she adored and was so proud of. Her grandfather Warner, nana and papa Hooge, aunties Gloria and Norma and Buddy will be so excited to see her on the other side. Memorial Services will be held at First Alliance Church (12345 – 40th Street S.E.) on Friday, May 29, 2015 at 2:00 p.m. Forward condolences through www.mcinnisandholloway.com. Donations may be made to her favorite charities through: http://www.youcaring.com/synovial-sarcoma-research-358681 In living memory of Jacqueline Warner, a tree will be planted at Fish Creek Provincial Park by McINNIS & HOLLOWAY FUNERAL HOMES, Fish Creek, 14441 BANNISTER ROAD S.E. Telephone: 403-256-9575.

All are welcome. 

(Obit and messages below added to this book from website, not originally in blog)

Hedy Serger (nee Bergman) 

Thursday, June 11, 2015

Hi Carol;

I’ve been thinking about you lately so I thought I’d google you. Came up with your moms obituary which is where I found your married name. I was so very sorry to read your daughters obituary. I can’t imagine your pain but I want you to know that I’m praying for you and your family. My husband Michael and I have three children. Two sons and one daughter, all married with children. Our daughter Erin Siemens is 10 months older than your daughter so my thoughts are very much with you. We live in Steinbach Mb. If you are interested in chatting I’d enjoy that. Love and Prayers, Hedy

Caryna Pinheiro 

Tuesday, June 2, 2015

My sincere condolences Peter. My prayers will be with you and your family. In Portuguese we use the word “saudade” to describe the feeling of missing someone. It also signifies that you shared many especial moments worth carrying in your heart for the rest of your life. 

May you find strength in the love you share with your family. 

Blessings,

Caryna Pinheiro

Allis

Tuesday, June 2, 2015

Dear Carol, Peter and Tyler, 

I’ve just watched the video of Jacqui and it does not take much to see that she was an incredible young woman – full of love, wisdom, intelligence, and sensitivity.

I am overwhelmed by her beauty and I am sure with a strong soul like Jacqui’s – she will always be with you.

With much love – and my profound condolences.

Allison xoxoxo

Cathy Pritchard 

Monday, June 1, 2015

I am so sorry to hear of your loss. Please know that my thoughts are with you. I firmly believe you now have an angel eternally watching over you with love.

Marvin 

Monday, June 1, 2015

Peter, 

My sincere condolences to you and your family. 

Marvin

D

Monday, June 1, 2015

Peter and Family, 

My deepest sympathies to you and your family, I am so sorry to hear of your loss.

My thoughts and prayers are with you all. I hope you will find some comfort in your memories of your beautiful daughter.

May God bless and comfort you all during this difficult time.

D

Monday, June 1, 2015

Peter and Family,

My deepest sympathies go out to you and your family. I am so sorry to hear of your loss.

My thoughts and prayers are with you all and I hope your memories will give you some comfort.

May God bless you and give you strength.

Helga Thordars

Monday, June 1, 2015

Hi Carol and family,

I heard of your loss and you have been in my thoughts….. you have my heartfelt sympathy and condolences my old friend….thinking and praying for you guys,

Your childhoold buddy,

Helga

Paul Prochnau 

Monday, June 1, 2015

Thank you for sharing your family’s journey of heartache at your daughters memorial service. It was very honoring to Jesus, to her, and to your community of friends and family. The next morning I read a devotional by George Matheson out of “Streams in the desert” and it made me think of you.

(May 30th). Your family will be in my prayers in the days to come, especially Tyler.

mark and pam macd

Sunday, May 31, 2015

Carol, Peter and Tyler 

We were very sad to hear of Jacqui’s passing. While we can’t begin to imagine what you have and will continue to go through we do know what a great and strong family the Warners are … we have you in our thoughts and prayers …. Mark Pam and family

Valerie Ekelund (Hamende) 

Friday, May 29, 2015

I attended Prince of Wales Elementary and R.T. Alderman Junior High with Jacqui. We have been out of touch for a long time, but my thoughts and deepest condolences are with her family and friends now. It was a privilege to have known her for the short time that I did. She is an inspiration and has left a lasting impression on so many.

Peter and Nora McAleer 

Friday, May 29, 2015

Dear Carol, Dear Peter, Dear Tyler;

Our deepest sympathy on the loss of Jacqui. May God welcome her unto the Peace she deserves and grant you and the extended family peace-of-mind in celebrating her life and remembering

her always. 

Peter and Nora McAleer, Peter and Kristiane McAleer, Dennis and Jennifer Jeffery

Bob and B

Friday, May 29, 2015

Peter, Carol and Tyler. We are sending Thoughts and Prayers to you as you Celebrate the remarkable Life of your beautiful daughter Jacqui. We Love you and you are in our Hearts. 

Love Bob, Bonnie and Aunty Gwen Thompson xoxo

John Francis 

Friday, May 29, 2015

Peter and Carol,

My deepest sympathies to you and your family over the passing of Jacqueline. I am very saddened to hear of your loss. Peter, you had shared with me this journey so I thank you for that; and as a parent, I can certainly understand your grief right now. Know that my prayers for you are that God’s peace will embrace you, comfort you and give you hope. 

I am so very sorry for your loss.

-John

Tracy and Jack Grainge 

Thursday, May 28, 2015

We are phenomenally sorry to hear of the loss of your daughter/sister. There are no words I can share that would be adequate at this time. Please know that you are in our thoughts and prayers.

Tracy and Jack Grainge, with love and support from Roger, Bruce and David Lane as well.

Kim Armstr

Thursday, May 28, 2015

Thinking of all of you this friday….my sincere and deepest condolences to all of you. I shall miss seeing her on Fb and reading about her journey.

Lynette & Bill Blayney 

Thursday, May 28, 2015

“What we have once enjoyed, we can never lose. All that we love deeply becomes part of us.” -Helen Keller 

We can’t begin to imagine what you are feeling, but let us share our heart-felt condolence. We are so very sorry for your loss Carol, Peter and Tyler. 

-The Blayney’s

Kathleen Duff 

Thursday, May 28, 2015

There truly are no words that can comfort the loss you have experienced. I can’t understand or relate to your pain so I will not even try! My thoughts and prayers as they always have been are still with you now and I there is ever anything you need or I can help with please know I am there! She was an incredibly strong woman and a beautiful sole but again you already know that! 

Truly devastated by your loss!

XOXO

Kathleen and Howard

Nicola Pare 

Wednesday, May 27, 2015

Jacqui,

You loved fiercely and will be missed fiercely. I remember the very first day I moved in and we became instant friends. We spent the day touring around Lethbridge. You as my tour guide, the wind at our backs, it really could not get any better. To finish off the evening we plopped down on the couch, flicked on the tele and started watching Saturday Night Live. Kristen Wigg came on the screen and was playing an infamous bald with baby hands and a snaggle tooth and you looked over with a cheeky grin and burst out laughing. Proceeding this, these words escaped your lips, ” you look like Kristen Wigg. We immediately went into hysterics. This was when I knew I had found my match and we would be the best of roommates. Three years we had together and that three years will never be forgotten. There was never a dull moment with you. You were the life of the party and always had a story to tell. My memories of you are so fond Jacqui and I am so very honoured I had the opportunity to do life with you. Thanks for joyfully living this life setting an example for so so many. Life is not too short, it is exactly as long as it it supposed to be, a statement that will keep with me forever. I have learned much from you. How to love, how to laugh, how to just be me. I sure hope you are tearing up the dance floor in heaven Midge. What a delight you were and will continue to be.

Cathy Groves 

Wednesday, May 27, 2015

May loving memories ease your loss and bring you comfort. You are in my thoughts and prayers.

Hilda & Bob Bennett 

Wednesday, May 27, 2015

Dear Carol ,Peter & Tyler

Just to let you know you are in our thoughts and

prayers 

Hilda & Bob Bennett

David Morris

Tuesday, May 26, 2015

Dear Carol, Peter and Tyler, 

Our love and sympathy to you from the team at the Intensive Palliative Care Unit. 

I thought you might be interested in knowing the impact that Jacquie had here with us. Last week I found her blog entry “Life is Not too Short” on the printer on the unit. One of the nurses had been following Jacquie’s blog after having cared for her while here on the unit. She was so impressed she wanted to share it with others. 

I too was impressed with the wisdom and faith that Jacquie exhibited in that thoughtful reflection. I mentioned it to the team gathered in rounds on the morning of the 22nd of May. One of the doctor’s asked if I might read it aloud for the whole team. We did not know that Jacquie had passed the night before but she was very much on our minds and she spoke to us all very eloquently that morning. 

May God continue to give you all the strength, wisdom and comfort you need at this time. 

Sincerely,

-David

Craig Rieger 

Tuesday, May 26, 2015

Please accept the heartfelt condolences from our entire team at Fit Metabolism. We are praying for strength, peace and the presence of the Lord that surpasses understanding for your entire family.

Ingrid & Brian Morris

Monday, May 25, 2015

Dear Carol, Peter and Tyler,

From everything we know about Jacqui through reading blogs and listening to people who knew her, missing her goes without saying but her Love will be with you forever. She has left an indelible impression behind never to be forgotten by anyone, especially her beautiful loving family. Sincerest Condolences ,

Ingrid and Brian Morrison

Barry Matthews 

Monday, May 25, 2015

The women with the great voice was left …. there is a huge whole. Great sympathy to Carol, Peter and Tyler. 

-Barry Matthews

Melissa & Chris Spaetgens 

Monday, May 25, 2015

We would like to express our sincere condolences to you and your family. 

Melissa & Chris Spaetgens

Pauline and Benoit 

Monday, May 25, 2015

Peter and family, please accept our most sincere condolences. Our thoughts are with you in these difficult times. 

Regards,

Ben and Pauline

Uncle Michael Hooge 

Monday, May 25, 2015

Dear Peter and Carol , Offering my condolences on the passing of your daughter Jacqueline. I had the pleasure of meeting her at her grandmother’s memorial. May you experience God’s nearness and His love at this time. Love you Mike

Amanda Myers 

Monday, May 25, 2015

My heart goes out to her family and friends. My thoughts and prayers are with you in this difficult time. I have only met Jacqui on a handful of occasions and during these brief moments I can understand how big an impact she had on the world in such a short span of time. Her memory will live on in those she has blessed with her time here.

AJ 

Sunday, May 24, 2015

Please accept my sincere condolences for your loss. Know that God is aware of the tears you are shedding. (Psalm 56:18) He will soon do what is said at Acts 24:15, which promises us of a resurrection of our loved ones. May that bring you hope. Take comfort in your good memories and allow your family and loving friends to help you through this difficult time.

Linda Hartwig 

Sunday, May 24, 2015

Jacqui’s strength and positive attitude was certainly part of who she was but please know that her core came from you, her family. For her to know she had this amazing support throughout her ordeal reinforced that she wasn’t on this part of her journey alone. There can be nothing harder than what you’ve been through and take peace in knowing she’s now safe and out of pain.

Much love, your Smith cousins, Graham, Linda and Gordon.

Jacob MacLean 

Sunday, May 24, 2015

My heartfelt condolences for your loss. Jacqui was a mutual friend to my wife & I. We had the privilege of meeting & getting to know Jacqui where we used to work for many years. In the time we knew her, she proved a constant reminder of truly living life to the fullest. She appreciated things in a perspective not many see; she challenged the norm & brought a smile to our hearts with her positivity, smile & laughter. We love and miss you always.

Susan Cranst

Sunday, May 24, 2015

Dear Carol, Peter and Tyler.

There really aren’t any words that convey the sadness that I feel for yourselves and Jacqui. Reading about her journey described what an amazing young woman she is. Her outlook on life was truly inspiring. She has left her family and friends with a lot of great memories to cherish forever. The only comfort is that she is no longer suffering and is at peace.

Take Care of yourselves

Love Susan

Barbara Williams 

Sunday, May 24, 2015

Dear Carol, Peter and Tyler,

We are very sorry for your loss. May every cherished memory of Jacqui comfort you in the days ahead. She was truly a special young lady and although we did not know Jacqui well, following her blog was such an insight to how selfless and full of love she was. The strength you all shared on this journey is an inspiration. Words cannot begin to describe how sad we feel for all of you. Love Barbara and Dan Williams

Bev Gneo 

Saturday, May 23, 2015

My heart breaks for your loss.

Kayla Shartau 

Saturday, May 23, 2015

I went to the UofL with Jacqui. It’s been amazing watching her on this journey. How she made her life beautiful, fun and full of passion.

Though unfairly cut short her life was full. 

My condolences to her family.

Wendy and Jim Amy 

Saturday, May 23, 2015

Dear Carol Peter and Tyler – we would like to express our deepest sympathy in the loss of your shining princess. We will not be in Calgary to attend Jacque’s service but please know that our thoughts will be there with you all. Hold on to the memories. 

Sincerely,

Jim and Wendy

Suzi and Barry Bate 

Saturday, May 23, 2015

Carol and Peter – I’m sure Jacqui had lots to do with your coping throughout these horrid and amazing five years. And she’ll be pleased with her “event” on Friday, no doubt! Please know that your family has impacted so many others including ours. Jacqui is in every rainbow you’ll see and all the beauty that surrounds you, whether it be a Lilac tree or the clear running stream nearby. You’ll never lose sight of her, but that doesn’t mean you can’t live on. Allow for the grief and the change. Our thoughts and love are with you all.

Kim Armstr

Saturday, May 23, 2015

My sincere condolence to the Warner family. Hugs. She was an angel and will be missed!

The Stroke of Midnight

Last night our little princess left the ball just before the stroke of midnight.

We are so sad to say that Jacqui is gone.  Last Sunday, the pain came again and this time it couldn't be stopped.  She has been heavily sedated since Monday and last night she'd had enough and decided to start on her next adventure. She'd had many meaningful visits over the past few weeks with many that she loved deeply and was at peace.  A little visit from little Miss Jany yesterday made things complete. Peter, Tyler, Britt and I were with her and the last words she said were "I love you".  Which sums her up to a tee and please know that she loved you all too.

May 12, 2010

On May 12, 2010 my mom and I went to meet with Dr. Puloski. I knew him to be a orthopaedic surgeon and I was seeing him for the results of a recent biopsy of the falling arch in my left foot. That was why we were at the foothills hospital that day. We didn't think much of what was happening and we felt that it was taking a long time to see him. We even asked the secretary why the wait was so long and she told us that some people were being told they had cancer for the first time and they needed extra time with the Doctor. "Oh! Those poor people" we said to one another and decided to wait patiently... little did we know that our world was about to be shattered into an entirely new one.

You know the story and what happened next, the amputation, the chemo, the surgery, and more chemo and here we are FIVE years later.

It is unreal to think about that day, I remember it very clearly. It was one of the worst days of my life and it ushered in a whole new world and existence. These last 5 years have been nothing short of incredible. Incredible in both good and bad ways. Those of you who have been close with us throughout this journey will agree with us. What a 5 years with Synovial Sarcoma.

I want to share a video with all of you where I speak a bit about the last 5 years. I was approached by Jacob Pisesky a couple months back to help him with a school project. He is in journalism and made a short video about my journey with cancer and some of my thoughts and insights. The video is 4 minutes long and I hope you will take the time to watch it!

 Jacqui interview.mp4

I had to download it on my computer to watch it - the file was too big for my phone so be aware that you might need your computer!

I want to thank Jacob for letting me be apart of his video! He scored an A+ on it which is pretty incredible. It was really cool to sit and reflect when Jacob was asking me his different questions. I hope the link works and that you can enjoy it!

A little note from Carol:

Just an update on what is happening and where Jacqui is at. 

Although Jacqui is technically in care at the Hospice, they are being very lenient with her and she is able to get passes, so she is spending much of her time at home.   This "limbo" time has become very special as an immediate family and is one that we want to dedicate to time together and with her very closest friends.  You may have seen happy posts on facebook or instagram, but please know that these times are very intentional and well planned as time is becoming more precious.

Thanks for your understanding and support. 

Life is Not too Short

Life is Not Too Short 

by Jacqueline Warner

People always say “life is too short” or “live today like it is your last day” and so on.

Those phrases are meant to be encouraging but since I was diagnosed with cancer in 2010 I have struggled with them.

Your life is exactly as long as it is suppose to be. Call me a Christian, and a believer in fate or destiny, but I feel this to be true.

Your life is as long as it is suppose to be.

The idea that “life is too short” tends to mock all of your accomplishments. It tells you that all the concerts you saw, the trips you took, and experiences you had were not enough. This is simply not true.

My life will not last too much longer.

Yes there are things I have not had the pleasure of doing but there is so much that I have done!

“Live each day like it is your last” is also silly because on a daily basis you cannot be on the beach or at Disneyland. You have to be at work, you have to be helping people, cleaning the house, or just resting at home. Some days will be “boring”. I rest a lot.

Stop making your life a race to accomplish everything and instead appreciate everything that you do accomplish.

Maybe that is all those phrases ever meant to say but I always found them to be mocking me.

“Do more! See More! It’s not enough! Why haven’t you tried this yet? Hurry!”

Your life is exactly as long as it is ever suppose to be.  Rest in that. What I have never done is done, cut by the sharp knife of a short life.

I did everything I could do with my time and it is Good!

For Every Three Questions We Get One Answer

One week later.

Last time we updated, Jacqui was coming out of heavy sedation and the Drs were trying to find a balance between the sedation and pain relief - well, mission accomplished!  On Thursday, she came out of the deep sedation and they did manage to relieve the pain with yet another new medication and since then she has been more back to her old self.  

Our hope was to then get her home.  But because of the results of the latest CT scan, the medical team is very reluctant to send her home.  Her situation is such that although as always, she looks and seems just fine, those darn tumours are very determined and just continue to grow unchecked.  As mentioned in the last post, the CT scan shows she has only a sliver of lung capacity left and they are concerned (and somewhat certain) that something catastrophic could happen suddenly again and they don't want her to have to risk not getting proper care immediately should this happen.  

They recommended a Hospice - and Jacqui was able to move into one closer to home on Tuesday - as she left the hospital, Drs, nurses and aides took turns to come in to say goodbye, wish her well and give hugs.

She is calling her space at the Hospice her condo in an old folks home - and she wasted no time "Jacquifying" it - Homesense is just across the street.  Although medically it is where she should be, she just seems so out of place.  She is the youngest by decades and every new staff member that walks in assumes I'm the patient - so either she's looking really good or I'm really looking like I need to be there - yikes.  It is much quieter, private and she can basically come and go as she pleases.  The food is better, the wifi is currently iffy, but she is coaching them in getting it up to her standards.  But as always, everyone loves her there and she is making her mark yet again.

So that's all well and good, but the fact remains that things are changing -
it's apparent when we bring her home and she has trouble going up and down the stairs
it's apparent when she puts on her Lulu Lemons and they are baggy
it's apparent when it's hard for her to eat because of the way the tumours are pushing on her oesophagus
it's apparent when she is out of breath and has to rely on her oxygen tank
it's apparent when she is too tired to see a friend - very apparent
it's apparent when she says "I just don't feel very well"
it's apparent that we have no idea what is next.

So this is my life,

and I want you to know that

I am both happy and sad

& I'm still trying to figure out

how that could be

*perks of being a wallflower

   

She's a wonder...

Last Saturday morning, for a few minutes it seemed like the cancer had inhaled - pain was absent, all was well and plans were being made - and then it exhaled and it was like a fiery breath. Pain came back In a way that it had never been felt before.  After a few hours of trying to extinguish it ourselves with what we had at home, we realized that something must have changed and we needed to get some help.

So off we went to the Foothills ER to find some relief.  Unfortunately going to the ER as a cancer patient isn't the best option and neither is going to any hospital on a weekend - we had to deal with several unfortunate and very frustrating missteps but eventually got her a room.  It still took a bit of time to bring things under control but by Monday evening things were looking better and Tuesday morning we were hopeful that she might be coming home soon.  

But the cancer took another breath and this fiery exhale was worse than the first.  The pain became unbearable and they ended giving her a drug that has made her very sedated, she has been mostly sleeping but she has no pain.  Now they are working on balancing the pain and sedation so she is comfortable but more responsive.  Such a fine balancing act.

Anyways, that's a quick update and for those of you that have been messaging and texting Jacqui and not getting responses - that is why.

And things have changed, there was another CT scan and if possible things are even more grim, this poor girl is fighting so hard against a body that is betraying her.  She's a wonder... 

Grateful not Grateful

To start - Jacqueline is stable here at home, we're just going one day at a time, so this entry won't really have any news. It's more just an observation I wanted to write about, so feel free to ignore - I know this isn't about me haha!!!

A few years ago closer to the start of this whole cancer thing, I started off the year with a gratitude journal - I have several journals for different things and this just seemed a good and natural thing for me to do.  I kept it up faithfully for a few years and it was great to help me to focus in both the good and bad times but frankly last year every day it was becoming a huge chore and it was getting harder and harder to come up with things or it was the same thing over and over because some days were just so difficult. 

My last entry was on November 19/14 and this is what I wrote:

"Here is what I'm not thankful for today - chemo starts tomorrow, we probably won't be able to go to El Salvador in January (and a few other things too personal to share).  I will have to look hard for something today"

And that was it - she did start chemo and we didn't get to go back to El Salvador and I guess I didn't find anything to be thankful for that day because I never opened that journal again - until recently

And then I read this:

It is not joy that makes us grateful

It is gratitude that makes us joyful - Brother David Steindl-Rast

That inspired me to try this again but as I started I realized that for now, during this hard time, many things that I feel grateful for have a flip side, for example:

I'm so grateful that I can be home to be with Jacqueline BUT I'm so ungrateful that she's going through this

Or

I was so grateful for the great run I had on this beautiful morning BUT ungrateful that she can't run with me anymore. 

So I think I will change my journal to a "Grateful not Grateful" journal - I think it's more real, more honest, more me.  I guess I just like the balance - apparently a feature of a Libra.

We must embrace pain and burn it as fuel for our journey

A long week at the hospital has finally ended!  Jacqueline is home from the hospital and the pain is being managed much more efficiently.  Those of you who have experience severe pain know that when you are being treated you are constantly asked what your level of pain is, on a scale of 1-10 (10 being the worst).  When Jacqueline went in to the hospital last week, her pain was consistently about 6-7, spiking to 8-9 often throughout the day, now it is hovering around 3-4 with very few spikes.  We would love it to be 0, but that would likely mean a constant sleepy state. She is feeling pretty good about where she is at and we are finding her more herself than she's been since January. 

We found out some interesting things in the hospital after all the usual poking and prodding and testing:

- The tumors are growing, her left lung is now about 95% taken over (a big increase from a month ago)

- Her heart has been pushed completely over to the right side

- She is operating on a 30 - 40% lung capacity

This is all bad news, but the amazing thing is that although these things are traumatic, because they have been relatively gradual, her body has adapted and she is still not needing oxygen - pretty amazing!  But of course with things as they are we know that things could change quickly and so we continue to try to live each day intentionally:

we must embrace pain

and burn it as fuel for our journey

                                      Kenji Miyazawa

Her condition, these facts, open the door for many very serious conversations that are hard and sad, but she was able to have some of them - with us, with friends and with others that brought some healing and hope.  Being at this stage brings what you think and believe into focus in a way that never truly happens any other time.

Her time in the hospital was very eventful, two different rooms, 7 different roommates - men and women - MANY interesting, some very sad stories.   So often over the years the staff have looked at her as young and healthy other than the cancer (which makes me crazy so I remind them) and this is somewhat understandable as she is probably the same age as the majority of the nurses and 30 - 40 years younger than any patient.  But this group of nurses was different and they really took the time to engage with her as not only a patient but as a peer. Recognizing that Jacqueline is going through something they don't otherwise associate as something that could happen to them.  Often we'd come in and one of the nurses would be sitting down just chatting - it was really nice.  Also the doctor, resident and all other staff were so kind - that really helped to make it so much better  - because from the moment she arrived she was asking when she could go home.

Speaking of which, she did get a couple passes on the weekend so one night we went to a family friend's house and visited with dear old friends who had come from far and wide to all be together. Events had to change because of the hospital stay but the joy of being together was wonderful!  And the other was just at home - just the family - some well needed "alone" time, a visit with Jany Valentine and of course Nachos (it was Sunday after all).

So she's home, the medication is organized - thank goodness.  I have taken a leave because organizing that is a full time job - and this Sunday is Easter -  a time of renewal and hope  - and in our journey we are reminded:

there is no hope unmingled with fear

and no fear unmingled with hope

                                                                                               Baruch Spinoza

Joy comes to us in moments

It's been almost a month since the last post - time flies when you're having fun... that is true, but it also flies when you're not having fun and this last month has not been fun.

Since her last post, Jacqui has been living with pain as the tumors continue to make their presence known and cause problems as they take up space in her body.  We have had a great home care team visiting us often - nurses, social workers, physiotherapists and even a doctor - who knew they still made house calls.  It has been very comforting to know all these kind people are only a phone call away.  She has had to increase her pain medications weekly and the amounts (to us) are staggering.  She just doesn't feel like herself and every day has it's surprises.

Many of you who follow her on facebook and instagram may find this confusing - she looks so good - but that's only part of what's going on right now, but in spite of everything she still manages to find joy. And she likes to record those moiments - it's not sugar coating or hiding the reality - it's a choice to mark the special times to get through the ones that are not special at all. 

It's like the little jar that Jacqui got from a friend the other day - it's filled with little pieces of paper - on each one is written something that she loves about Jacqui so when she is having a hard time she can read one and feel a little bit of relief - a moment of joy. 

Peter, Jacqui and I did manage to get away (Tyler house sat and took care of princess Jany Valentine) - Victoria, Ucluelet/Tofino and Vancouver.  It was very nice to have a change of scenery and see a few friends and family, but the reality was that pain was a constant companion.  It was good, we were so happy for the beautiful places we saw and stayed and all the experiences but there was always a cloud - figuratively and literally too!!!  Monsoons - but we didn't mind too much because it took away the pressure to do and see everything which is how we usually do things - we could relax a bit more and take it easy. 

We got home on Monday and after a visit with the home care nurse on Tuesday, Jacqui was admitted to the hospital yesterday to try to reconfigure her medications to hopefully provide some relief.  Disappointing place to be - she is missing a concert tonight and plans have to change for a big fun event that was planned for Saturday,  Peter and I are celebrating our 32nd anniversary in the hospital with her today.  It's not good, it just is, we aren't feeling sorry for ourselves (any more than usual haha) and we're not in denial, but these are the moments where we have to just look for the joy (all the love that is constantly being shown to us) and be grateful (we're together) and just do what needs to be done. 

We're not feeling brave or inspirational or strong (these are things we hear - not our evaluations of ourselves!) - we are just living the life we've been given and trying not to squander it. 

Once again we have to say thank you from the bottom of our hearts for the out pouring of love that we receive on a daily basis from so many - in so many creative and wonderful ways - it is overwhelming.  Jacqui is trying to keep up with the thank you notes, but some get missed and we just can't even ever say thank you properly - so please know that each kindness you show - from the smallest to the biggest - is appreciated so very much.

Scans and tests are happening, we'll update soon. 

Joy comes to us in moments - ordinary moments. 



Love Jacqueline

We saw the doctor last Monday and received the dreaded news that there isn't much left that can be done. There are two possible treatment options that may give me a few extra months but they will could really damage my quality of life and don't offer cure, just maintenance and a bit of time - so it's a matter of quality vs quantity. He says without anything, it's likely a matter of months - not years, but who knows?

At this point, I have decided that I want to live my life to the fullest while I can, one day at a time. I want to spend my time with my family and my friends. I want to continue to go to concerts if I can and maybe go on some trips within Canada. I want to read and listen to books, I want to watch good tv and movies, I want to colour with good markers in cool design books. Finally I want to spend time talking and laughing with the people I love. I do not want to do more chemo that will cause hair loss and nausea and extend my life by a few mere weeks/months, none of which I will be able to enjoy very much.

The big question is: Am I giving up?

I have been dealing with this since May 2010. I had been dealing with the pain of the tumour for countless years before that.  I didn't know it was a tumour, assumed it was a falling arch and Dr's thought at first it was Plantar Faciatis or a benign cyst. Once Synovial Sarcoma was diagnosed, my foot was amputated within a month. I did chemo, and was back at school the following January -  I only missed one semester of school. 

I spent the next 2 years going for check ups that were all clear. Just a few months after the 2 year mark, where I could switch from every 3 month to 6 month check ups, we found out that the cancer had metastasized to the lungs, common for Synovial Sarcoma. Devastated, but determined I started a new job and then went on leave 3 months later for surgery. I recovered and went back to my regularly scheduled life. 

I knew the tumours weren't all gone though, I knew there was more work to be done. Thankfully I had a year and went to El Salvador but then back to Chemo. This was the hard one, I had to live in the hospital for one out of every three weeks and it was brutal. Many of you will remember this.

After I finished chemo, 2014 turned out to be the coolest year! It was filled with concerts and trips and I felt lucky to be alive! When the cancer reared up again this time I knew that it was here for good. Based on Synovial Sarcoma facts and just based on instinct I knew it wouldn't let me have much longer. Still I tried. I did more chemo, I've dealt with excruciating pain and I've tried to do it all with a smile on my face.

I have worked hard, I am not a quitter. I am making a choice to live out the rest of my life as happily as possible with the people that make me happy. 

Cancer is not a fight and I am not losing. It has been a challenge, it has been a journey but in no way am I losing.  Cancer is a bully and it picked me, but I've done my best to stand up to it and not back down.

I have surrounded myself with the kindest and most generous of friends. It is astonishing the things people have creatively given to me over the years, humbling and incredible. I am constantly in awe of the love that surrounds me. That is how I have been able to do this, that is why I am brave and strong because you have made me. Thank you. Cancer is lonely but you have made it much less so. Know with peace that you have made these last 5 years some of the most incredible of my life. 

I am not saying cancer is a gift, I certainly would have liked the gift receipt if it was, but I am saying thank you for supporting me. In big ways and small. Those silent prayers, sending out light and love, I felt that - I feel that. Thank you. The big gestures, you overwhelm me, and sometimes I think it is too much, but I know that's how you express love and I am grateful for that. Thank you for all of the love. 

Everyone who has this cancer views it differently and everyone responds and acts according to how they are able. 

The other day my mom said she wanted to get back to a time where we can just live. We can plan a trip, we can go on walks around fish creek, we can have fun family nights but we don't have to do it all with the cancer lingering above us, wouldn't that be nice?  Another friend put something so eloquently into text that I had to share it. My friend said:

"At the end of the day it's disappointing we are in the "worst case scenario" of this challenge. It's not that I brush this situation off, but rather choose not to define our memories, our relationship, or future memories by the battles you face on a physical level. By all means I will acknowledge the challenges that we both will endure, but refuse to let that dominate the words, the emotions, the time and the image of who you are as an individual. Our relationship will always transcend the physical world around us. I'm incredibly grateful you've allowed me to join you on this journey and I look forward to being there in the next epic episode of our relationship." 

That is how I want you and I to finish things - however long I have, remembering that life goes beyond these twenty some years. 

Wow, I sound really positive and up beat don't I? 

My nurse asked me "aren't you mad?" And I said "No, I am just sad and disappointed" 

I wanted all of your prayers to work, I wanted to be your amazing cancer success story, I wanted to be that local hero that defied all odds.  But at least I have a super rare cancer, it's so hipster of me!  I am sad, but I don't want to be regretful! I have done so much in this amazing life of mine! 

Please be gentle with us. I have made my decision, I know there are many cancer "cures" out there and if you find anything that directly and positively works with Synovial Sarcoma I would love to hear it otherwise it will only cause us stress and the feeling doubt we're not doing enough. 

As for now, I'm not planning on going anywhere too soon!  Thank you again for all of your love and support.  

Love Jacqueline,
Carol, Peter, Tyler, and Jany too

Back we go.....

Back we go.....

Today after weeks of trying to get this pain under control, Jacqui is going back to the hospital for a few days to try to get to the bottom of things.  So do we want this?   Not at all, but trying to figure this out at home isn't working either.

So in addition to that we're just trying to:

Carve a tunnel of hope through the dark mountain of disappointment.

Martin Luther King Jr

Chronic Pain

Hi,

We said we would update you once we had the results of the CT scan and then frankly, we forgot to! Oops! 

The Doctor sat down that Monday a few weeks back and said "I have good news!"  The tumours are stable, they are responding to the treatment. They haven't shrunk and they certainly will never go away but they are stable. This means that I am able to continue with this treatment for the time being and we will do another CT in a couple months to track its progress.

It was pretty incredible to hear the words "I have good news" come from one of my Doctors. It was also interesting to think about what "good news" has now become. It wasn't "they are gone" or "they are shrinking" the good news was that things had stayed the same. The perspective of what "good news" is/means has changed for us a lot in the last almost five years. I did chemo that week and I am doing chemo this week. Chemo is fine, it is a 1/2 hour and the biggest side effect for me is that I am tired for a day or two. I don't mind doing chemo.

The big issue lately has been pain. I was in a lot of pain before Christmas and was giving a regime of medicines that really helped to combat the pain. I felt wonderful, there was zero pain for weeks. One of the medications I was on was a steroid and it was starting to affect me emotionally. I was becoming over sensitive and quick to anger - essentially I was experiencing some "roid rage".  The Doctors said that steroids are great for combatting inflammation but after awhile the side effects outweigh the benefits and this was becoming the case. So they began to ween me off the steroid and the pain surged in a new way and in new spots in my back. I have since met with the pain clinic. There were 2 doctors and a pharmacist and they listened to my story and the symptoms I have had. They came up with a new pain plan and I have been trying that out this week. It has not been a magical cure. My lower back is in a lot of pain despite all the medication I am on. The pharmacist has called a couple times to see how I am doing & make suggestions. I am glad to have so many readily available resources. The great thing about the pain clinic is that they have many options and ideas and it is hard to stump them. If what I am trying doesn't work we will try something else until there is a proper solution. For now I sit with either an ice pack on my back, my heating pad, or my fancy new shiatsu massage pillow. They all help in some way but the pain is chronic and it is exhausting. 

We haven't had the chance to escape for a trip yet but maybe in the spring. For now I am just really needing this pain to get under control. It is frustrating and causes me to miss out on things and I HATE missing out on fun things! 

For a number of reasons, we have decided not to share the blog link via Facebook anymore. If you wish to receive updates you can automatically have updates emailed to you if you fill in the "Follow by Email" spot at the top of this page on the right (on the web version).  We will also update our statuses but we are no longer going to share the link via Facebook.   We love your comments and encouraging words (although we're sorry we can't always reply to all of them) and there is a place below where they can be left or you can also email us directly at carolsunshine4@gmail.com .

So that is the latest, 

Thanks again for reading and for your love and support! 
Jacqui