Farewell 2014

Greetings Everyone, 

2014 is coming to an end. What an incredible year this has been. I started it out in El Salvador with Stepper Homes. We built houses for people in need and became friends with many beautiful people despite our language barrier.  Throughout this year I took more trips and saw many concerts! I got to go to Seattle again, Disneyland for the fourth time, to see my family in Vancouver twice, and I went to Montreal for the first time! I saw Beyonce and her husband Jay-Z perform at Safeco Field! I saw Michael Buble again and I saw Jack White! I even bought a Volkswagen Beetle! My Dream of all Dream cars! In February I recived a Kitten whom I absolutely adore! I also participated in #100daysofhappy, focusing on happy moments in every day life. I made a photo album to commemorate it! 

In some way this year was ***Flawless.

Then there was chemo, this was the longest break I had to take from work. I was gone from the end of January to the beginning of August. I only went back to work for around 3 months. Apple has been so good to me and I am honoured to be apart of that company. The long-term support has been easy to acquire and keep going. It has been such a relief admidst all of the other drama. 

The chemotherapy had some positive effects but it was clear that the cancer was becoming stronger. Still my doctor was comfortable giving me a break for a few months and letting me resume my life. He now has me back on treatment. Many of you read of our drama around Christmas time - yesterday we were able to see him and we have more information. 

While I was at the Rocky View hospital the Doctors and nurses shed light on how serious the situation is. I had only done two rounds of this chemotherapy but there hadn't been any proof of results yet. The Doctors had me speak with home/palliative care. They seemed very serious and very dire about the cancer. Since meeting with the Home Care Nurses I now see this as a great resource. They will be as involved as they need to be. 

For now I am in relatively good health so I won’t need them as much but in the future they will be a great resource. They can help with medications, with prescription delivery, with mobility care, and more. They are a liaison to have on your side. The Doctors at the Rocky View did scare us and leave us with little hope but my Doctor, Dr. Morris, said to me yesterday “we know you better”. He still has hope. Hope that we can make the cancer stable, stunt it’s growth. He said that they treatment I have been doing was not given the chance to work. He wants to do two more rounds and then check the results with a CT scan. He did let me know that the situation is serious. He said without treatment I would only live for about six more months. He predicts longer with treatment but this is a very sobering thought. 

I know that this is hard for you to read. Imagine how hard it is for me think about. Everyone writes on my wall and likes my pictures and does their best to be encouraging and see the positive side. I appreciate this, but it is also okay to sit and think on this with sobriety and feel sad. It is the reality. Your emotions are never wrong, it is okay to feel bad and to reconcile with your negative emotions for a time. 

I am going in for chemotherapy this afternoon. I will be administered a 1/2 hour of medication and then we will repeat this the week after next. I am glad that Dr. Morris still sees reason to try and to hope. He is an honest man and we will continue to have honest conversations as the months pass. 

This year was full of surprises. I don’t think I have ever had a busier year! 2014 was incredibly happy and sad and I am so thankful for it. Thank you for your continued love and support. For those of you who don’t post anything but simply read, I thank you for your quiet support. 

On a very happy note - our renovations are done and we can finally enjoy our entire house! The main floor looks incredible! I've even done some renovations to my bedroom and am loving the changes! This house is such an enjoyable place to be! :) 

Here is hoping 2015 brings a miracle, 15 is my favourite number so maybe something great will happen!

Happy New Year 

Love, 

Jacqueline 

PS: A picture of Jany enjoying the fire because she is my favourite thing in the world. 

Update

Those of you who are friends of Jacqui on Facebook may have already seen this, but I wanted to just post this for those of you who hadn't seen it.

This is what she wrote:

Update:  I've been experiencing some extreme pain lately, all in relation to the tumours in my left lung.  I've had a sore lower back, sore shoulder and this weekend very shallow breathing.  Went to the ER this morning and was treated immediately as I had a fever and a rapid heart beat.  They've given me a blood transfusion because my hemoglobin was too low. It's been a tough weekend and a rough day!  I could really use your light, love, prayers and well wishes!  I know you all will have many questions, sadly I don't have the answers, so please be gentle.

Thank you for your continued love and support. 

So this is Christmas.....

So this is Christmas.....

The. Weirdest. Christmas. Ever. 

I keep wondering why I keep hearing Christmas music and seeing so many ads and then I give my head a shake and remind myself that it's "The Most Wonderful Time of the Year!"

Here's why I'm so confused - two reasons:

Firstly, we're renovating our house and we've been living in the basement since October 13th.  As I don't like to eat out much, I've managed to be very creative with a crock pot, rice cooker and hot plate (plus we've had a little help from our friends who have taken pity on us and brought us food).  Ty moved out early on in the reno, so that made life a little less squishy, but it's been interesting and annoying and fun all at the same time.  Christmas decorating is "minimalist" this year - just a few decorations we've managed to find.  But the end result is going to be fantastic and it's on schedule to be done around December 23.

Not hard, not challenging, it's self imposed and just inconvenient (and kind of fun).

Second - this part is hard and challenging, forced on us and very inconvenient (no fun at all).

Jacqui had her second round of chemo on Wednesday.  The doctor advised us to go the "Port" route and so she had the port inserted on Nov. 25 and had her first round on Nov. 26.  This chemo is administered for one hour, on one day, every other week.  Jacqui thinks it's short and easy with the port - the best chemo ever.  But there are still the side effects to deal with - mostly exhaustion and it's hard when the actual chemo part is so short to remember that it will still take a while to recover. She'll continue with this chemo until the end of the year and in the new year there will be another scan and the doctor will decide what actions to take next.

And then there is the pain, so much pain over the last few weeks.  Sometimes it's just a dull ache and sometimes stabbing pain that lasts for a few hours before subsiding.    It looks like it's fluid buildup in the lungs  - so now there's that to figure out.  She's tired and she hurts and it feels like enough...when we look for the light at the end of the tunnel, sometimes all we can see is darkness.

That's when it's time to look at our little Christmas tree and it's lights remind us of the light and hope of this happy season.

Merry Christmas!!!

What your friends with cancer want you to know (but are afraid to say)

What your friends with cancer want you to know (but are afraid to say).

I found a link to a blog on a friend's facebook page (thanks Iris) and thought it summed things up really well.   Here it is if you're interested:

What Your Friends With Cancer Want You To Know (But Are Afraid To Say)

August 7, 2014 by Kim Helminski Keller

The inside scoop from someone who’s been there.

People with cancer are supposed to be heroic.

We fight a disease that terrifies everyone.

We are strong because we endure 

treatments that can feel worse than the actual malignancies

We are brave because our lab tests come back with news we don’t want to hear.

 The reality of life with cancer is very different from the image we try to portray.

Our fight is simply a willingness to go through treatment because, frankly, the alternative sucks. Strength? We endure pain and sickness for the chance to feel normal down the road.  Brave? We build up an emotional tolerance and acceptance of things we can’t change. Faith kicks in to take care of the rest.

The truth is that if someone you love has cancer, they probably won’t be completely open about what they’re going through because they’re trying so hard to be strong.

For you.

However, if they could be truly honest and vulnerable, they would tell you:

1. Don’t wait on me to call you if I need anything.  Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you’ll say “no.

2. Let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off.

3. Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness.

4. Forgive me.  There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me.

5. Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me.

6. Take pictures of us. I may fuss about a photo, but a snapshot of us can help get me through tough times.  A photo is a reminder that someone thinks I’m important and worth remembering. Don’t let me say “I don’t want you to remember me like this” when treatment leaves me bald or scarred.  This is me, who I am RIGHT NOW. Embrace the now with me.

7. I need a little time alone.  A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away.  I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing.

8. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing a cancer diagnosis with the day-to-day needs of your family. My children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kids. Please. My spouse could also benefit from a little time with friends. Grab lunch or play a round of golf together. I take comfort in knowing you care about the people I love.

9. I want you to reduce your cancer risk. I don’t want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes – stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat. Please go see a doctor for regular check-ups and demand follow-up whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life.

10. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world God created, and thank Him for bringing us together.

While we may not be thankful for my cancer, we need to be grateful for the physicians and treatments that give me the chance to fight this thing. And if there ever comes a time when the treatments no longer work, please know that I will always be grateful for having lived my life with you in it. I hope you feel the same about me.

Although the perspective is different than mine (the writer is a mother with cancer)  I agreed with almost all of it - the only one I was iffy on was #3 - don't be afraid to ask what's really going on - it doesn't have to be the focus of every conversation, but it's been a pretty huge part of our lives for 4 1/2 years, so to never mention it at all really feels weird.

We are so thankful for all of the support and love we have received from family, friends and even strangers - we couldn't do this alone.

Update:  Very tough week

The pain that Jacqui had been experiencing increased a lot and she made the decision to stop work a  few days early.  Since then it's been really tough finding the right medications - ones that will ease the pain without making her sick.   So I think we may have the pain figured out, now we just have to get some food in her.  

Next week:  Doctors appointments and decisions to make

Things are still up in the air about which type of chemo she will undergo, but she has an appointment on Monday and we'll have to make that decision then.  In the event that she does have to have a port, she has that set up for Tuesday morning.  

Either way treatment should start next week.

       

Change of plans

Change of plans

A few weeks ago Jacqui started feeling a familiar pain. She called her oncologist's office and after a short wait, he called her back himself to ask about her symptoms.  He said he'd line up some tests for her and so in the last two weeks she has had a CT scan, a bone scan and a hip X-ray.  Today we went in for the results and things were as we had suspected.

The good news is there are no new tumours and the bone scan and X-ray were clear.  

The bad news is that the existing ones are growing rapidly. One has grown almost 2 cm since September.  

So, once again, plans are changing and chemo is back in her future - very near future.

There are two choices for chemo.  The first choice  (Pazopanib - targets a specific pathway to interfere with the growth of cancer cells) is a newer treatment that is not approved for wide use in Canada yet, but it is approved for testing.  The difference is cost - until it is approved for use, there is no insurance coverage. Her doctor is going to look into getting funding for it, but that's up in the air, we'll make our decision when we hear more.  This is administered in pill form.

The second (Gemcitabine - interferes with the growth and spread of tumour cells) is approved for use and would be a fine option as well.  This would be administered intravenously and he thinks it would be best to have a port because of the constant strain on her veins.  That would mean a small day surgery to insert the port and then chemo could start right away.  

Both have lots of fun side effects.

So - more disappointments and more losses - it never gets easier.

But we are thankful for a wonderful, caring, and very knowledgable medical team that take all the time we need.   We are thankful for the people in our lives who we can be really sad or really happy with.   We are thankful for the thoughts and prayers of so many - some of which we have never met.

We pray for peace and wisdom.

"All we can do is try to rise beyond the question 'Why did it happen?' and begin to ask the question 'What do I do now that it has happened?'" -- Harold Kushner

When something is set there is nothing to be brave about

If you flee from pain and failure, then you run into them everywhere you go. 

If you find some way to open to them instead, then they may bring their hands from behind their backs and place flowers on your bed.   

Barbara Brown Taylor

Jacqui met with her oncologist on Monday and received the news that the tumors in her lungs are on the move again.  Growing - and fairly rapidly.  Although this wasn't a total surprise, after the last appointment, in July, where things were stable,  it was still disappointing.  Hope dies hard and there is always the hope that the news will be good.   This was not good news. 

Jacqui, as always, took it in her stride and went on to tell the doctor that she is fine and she doesn't want any treatment until she feels unwell.  It's kind of a catch 22 - she feels well, but in order to stay well we have to try to stop the tumors from growing, so she has to have chemo again - and that will make her feel unwell.

I wish it was like following a recipe and that the steps were laid out and if you followed them it all just worked out, but it's not like that at all.  How are we, with so little experience or knowledge, supposed to make these kind of decisions? 

But the decision is hers and over the next couple of months she has plans to go to Vancouver (twice) and a couple of concerts and El Salvador in January.

So we can hope two things:

- that she'll stay healthy and strong until after the El Salvador trip and then she'll look into further treatment

OR

-  symptoms will make themselves apparent long before it's time to go so our decision is clear      

Jacqui also wanted me to add this quote she heard today:

"When something is set there is nothing to be brave about.

It gives me the strangest feeling of power, 

if I am going to die anyway I can do what I want" 

     

A long way of saying "YOLO"







September 2014

Hello Friends and Family,

Well its the start of a new month, I suppose I should go on another trip! See you on the 15th Montreal! A friend of mine got an excellent deal on plane tickets so we are heading out east to see one of Canada’s most amazing cities; naturally we are going to a concert too! We are seeing The Gaslight Anthem! I am excited to head out East! I have explored many places in Europe and the US but in Canada I have only been to BC and AB. I am eager to see more of this beautiful country! 

I have been back at work for nearly a month now! I am working, as per the doctors request, 4 hours a day/ 5 days a week. It has been a pretty good re-assimilation back into the company. My co-workers and friends have been as helpful as they ever were and I am thankful to be back at the job I love. 

I celebrated my 28th birthday on August 19th. I cannot even comprehend that I am 28. I hate that the number is so high but I am acutely aware of how lucky I am to be 28 years old! It is a weird feeling! I have 2 years to plan an epic 30th birthday party…Mexico anyone?  For birthdays my family has a tradition, the birthday person picks a restaurant the rest of the family has never been to. For my birthday I picked my favourite pizza place UNA! It's on 17th ave and we ate 3 of the most delicious pizzas on earth! We've been to New York and Chicago so we know good Pizza! 

The crazy fun activities have continued as I spent last weekend dancing in the sunshine with my friends at X-Fest. We saw so many bands including Foster the People, Serena Ryder, Tegan and Sara, and the legendary Jack White! We had a blast dancing and screaming to our favourite songs! 

So the Cancer Stuff. I have a CT Scan on the 7th and results on the 29th. This will determine how the tumours are growing and if immediate treatment is necessary. I may be able to continue working for a while or I may be required to head back into the hospital! We are naturally hoping that I can go on for another few months!

I am doing pretty well, it’s nice to be working again.

I am still doing my best to fill my life up with good people, good music, and good food! So far I am doing pretty well!

Thank you for your continued love and support!

 Thank you for reading our little blog 

xoxo

Jacqui