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 

Happiness can be found, even in the darkest of times, if one only remembers to turn on the lights.

Happiness can be found, even in the darkest of times,

if one only remembers to turn on the lights.

I've been a little negligent since the last post and we've had an  appointment in between so it's time for an update.

First things first.  Jacqui had an appointment with her Oncologist on July 14th and we got the results of her latest CT scan.   We decided that the results were good news.  It's weird how we go to the appointment, listen to what the doctor has to say, ask our questions and then we will sit and choose how we're going to take the news.  In this case it was me, looking at Jacqui and Peter for agreement when I said "I'm going to take that as good news!" and having them nod in agreement.  It's not black or white, good or bad, it's kind of gray.

So the news was this:  There are two tumors (I think) that are of most concern, they are ones that had grown rapidly between October and January, one of which took away the option of surgery and then there are a few little ones that are not of too much concern.  The doctor said that the big, bad duo had not grown significantly - he said that some CT scan readers may not even see a change and then little ones were the same size, maybe even a bit smaller.  And that is the good news -  little to no change so she is stable and that is good.  Of course great would have been disappearance and horrible would be if they had started growing rapidly again. So the "gray" is stable and that's good. 

I thought at the time, "well that's a few more carefree months" - this news buys time for all sorts of things,

more time to recover and build up strength

more time to discover new cancer treatments

more time to enjoy the summer

more time to travel

more time worry free

more time to live, love and laugh with friends

or even

more time to lie on the couch and watch TV if we want to

After all isn't that what everyone wants - more time?

So now Jacqui is busy getting her paperwork together so she can go back to work (starting with Dr. ordered part time) on Tuesday.   And we'll just keep on going until the next appointment at the end of September. 

It's amazing how we (our family) has developed the ability to compartmentalize our lives - the cancer is there - like the annoying bully at school - but it's summer holidays so we won't think about him (or her) until a day or so before school starts and who knows maybe when we go back, we'll find that the bully has moved away during the summer. 

We've read, seen and heard some interesting takes on living with cancer over the last few months. The first is a book (and now movie) called the "Fault in our Stars".  A story about young people living with cancer - the guy is an amputee (as a result of a cancer similar to Jacqui's) and the girl has lung cancer - Jacqui related to both of them.  And I loved the way they portrayed the parents dealing with their children having cancer.  To us it was authentic.  Some of the scenes and reactions just made us laugh and/or cry because they were so recognizable.  The book was actually written for young adults but it was well written and we thought the author must have had some insider information (kind of like the author referred to in the book). Now it's been made into a movie and we really  appreciated the real look they took at living with cancer, a kind of behind the scenes story. Things that are hard to say or that you don't want to try to explain were depicted in such a way that we felt validated (dumb word - but it works).  Like this quote:

Much of my life had been devoted to trying not to cry in front of people who loved me, so I knew what Augustus was doing. You clench your teeth. You look up. You tell yourself that if they see you cry, it will hurt them, and you will be nothing but a sadness in their lives, and you must not become a mere sadness, so you will not cry, and you say all of this to yourself while looking up at the ceiling, and then you swallow even though your throat does not want to close and you look at the person who loves you and smile.”
― John Green, The Fault in Our Stars

Happiness can be found, even in the darkest of times, if one only remembers to turn on the lights.
- Albus Dumbledore