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 

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

So I commend the enjoyment of life

 Well, it's been awhile - and no news is good news - right?  Right!

These past weeks have been good weeks!  Since the last appointment, on May 27, it's been like a reprieve. The time between appointments, when Jacqui is feeling well and there are no treatments or tests or pokes or prods, are times when we can almost feel - or pretend at least - that all is good and that's  how we've felt. 

I've talked to other people with "chronic" cancers and they feel the same - it's almost like having a license to live normally between appointments.  When things are going well, you can defer worry and pain and thinking about the future until a day or two before the next appointment.  Denial? maybe, but who cares - why waste time worrying about bad that might or might not happen.

California/Disneyland was exactly what we wanted it to be - hot, fun, exhausting and relaxing.  Hugs from Mickey, tears of joy during the "World of Color" show, riding bikes along the boardwalk on Newport beach, mojitos by the pool at our hotel and so much more packed into 5 days.  As you walk into Disneyland, you walk under the train tracks and there is a plaque mounted that says:

“Here you leave today and enter the world of

yesterday, tomorrow, and fantasy.” 

I know there will be those of you who don't drink the "Disneyland Koolaid" (hater's gonna hate), but we love it and for us it really meant leaving all the garbage behind and we didn't talk - or even think - about cancer, chemo, pain, losses, any of that junk, we just bought into the fun and fantasy and had the best time.  Another great thing about it for me was that we were there on what would have been my dad's 90th birthday - it was wonderful to be there in a place where I had such fun memories of him.  One other thing I have to mention is that upon arrival in our hotel room we were met by the most fabulous and large basket of Disney goodies, huge Mickey shaped cookies and bottles of wine!  We have tried to find out where all of that came from, as well as a surprise in our mailbox a few days before our trip, but haven't had any luck.  So to those responsible - if you read this - we will have to respect your anonymity and just say thank you!!!

  

And it wasn't just the girls that got away, Peter and Tyler took a trip to their "Disneyland" - Yankee Stadium in New York for the Subway Series between the Yankees and the Mets!!  

 Also - big news - Jacqui's hair is growing back - what started out as little dark smudges have turned into eyebrows, eyelashes are growing rapidly and her hair is gone from a little fuzz to spiky to almost ready to lay down - we're just trying to figure out what color it's going to be.  It just happens so fast and so good to see signs of life. 



So what's next?   Well her next CT scan is July 7 and then the follow up appointment is July 14.  Don't know what to expect with that, what the scan will show, whether she'll get the "all clear" to go back to work or what.....

And in the meantime......birthday parties, a concert, a wedding, out of town guests, travel, long summer nights on our deck (sorry neighbors), bike rides, runs in the park, good stuff.....

So I commend the enjoyment of life,

because there is nothing better for a person under the sun

 than to eat and drink and be glad.

Then joy will accompany them in their toil

 all the days of the life God has given them

 under the sun.
Ecc 8:15

It's not happy, so we just have to be happy

It's been a few weeks - good weeks  - of recovering from that last brutal round of chemo, catching up on things that have been forgotten during the last few months, a regular routine - no hospital visits - scheduled or emergency.  The times between appointments or treatments - when Jacqui is looking well and feeling well and hopeful are the times that we can forget for a little while and pretend that life is  "normal".  

The funny thing is when Jacqui is feeling so good and looking so good, it's hard to imagine that there is really anything bad going on behind the scenes at all - people say this to her all the time.

But an appointment is coming and before we go to see the doctor, we need to sit down and talk about:
- what questions we want to ask
- what questions we don't want to ask
- all the types of treatment, alternative treatments, alternative medicines, clinical  trials
- when she can go back to work, can she go back full time

I don't want to forget anything important - so I make lists on my phone, in my journal, in my notebook at work, on the notepad on the fridge, on my hand to write down somewhere else later.  And I read up on Synovial Sarcoma, I read things that make me hopeful and I read things that make me cry.

These weeks as we've celebrated births, reunions, birthdays, graduations, weddings, showers, mother's day, sunny days, Peter and Ty went to NYC - each event - though I try to stay in the moment, sometimes my mind wanders to "what if's".  Most days are good, a few aren't. 
 
And today was the appointment - the usual routine:

- check in

- wait

- blood test

- wait

- see the nurse, get vitals taken

- wait

- and then the doctor comes in and we dutifully ask all the questions on our list

- really there's not much to say other than when we asked if he thought the chemo was successful, he said she looks better and feels better so sometimes that's better evidence than what's on the CT scan

- there are no answers

- basically we have to wait

- until they do the next CT scan in July and we get the results 

At that point we'll see how things are and make a decision on further treatment - different chemo, surgery, radiation - who knows?  It's such a rare, unknown cancer - I find myself envious of those who have common cancers - with tried and true treatments - that's just how weird this gets.

Today he used the phrase "advanced cancer" and other related, suggestive phrases - that's hard to hear. It seems like all there is to do right now is to wait and be patient.  As I just said to a friend, it's not happy, so we just have to be happy,  sooooo......

 - we leave Friday....

Where there's life, there's hope

Quick update. 

Last Monday we had Jacqui's appointment to get the results of the CT scan she'd had.

The results were not really what we wanted, but I am not really sure what we were expecting either.  So, to sum it up quickly, she had a CT scan in January, (the one that showed the tumors were growing and surgery wasn't an option) and then a PET scan in February, which confirmed this and showed that they'd grown a little more and then the latest one, that showed that although the spots have shrunk, they are still bigger than they were in January. 

So the good news is that they have stopped growing, and in fact have shrunk, but the bad news is they are not gone.   Now what?  Well her Dr. said they'll now treat her cancer as a chronic disease, they'll monitor her regularly with X-rays, CT scans and that type of thing and then treat her as needed when and if there are changes.  Possibilities are different types of chemo, radiation, surgery...miracles.

She had one last round of chemo this week (this type's effectiveness decreases with each round and the side effects increase with each round - so they didn't feel any more than 4 would be worthwhile especially since she's had so much trouble with side effects already).  True to form, it was very hard on her and it didn't make it easier knowing that it's less effective but still as hard to take. 

We were all a bit distraught at the results of the CT scan, but two bits of hope came during the week.  the first was when we were leaving the hospital on Monday, she bumped into the man that she had shared a room with during the last round.  He was diagnosed with a similar type of cancer 11 years ago and was told at that time that they could only treat him palliatively, no real hope and now it's 11 years later - not all easy - but as he told us when we were leaving last time "Where there's life, there's hope".  The other was when the Dr. came in to check on Jacqui during chemo and when she expressed some distress, he said, the news is not bad, the chemo is working, and we still have lots of options.  Little things, but little bits add up to greater hope. 

One day at a time.  We were talking about that the other day - it's much harder when you have no choice but to live one day at a time - when it's not just a good philosophy for how to live your life but how you have to live your life.

We have her home now and she is relieved to be done the chemo, and because hope is hard to lose - she is looking forward to feeling better again, getting back to work, making summer plans and growing some hair. 

And then we'll see...

Fear cannot be without hope, Nor hope without fear

I am slowly going crazy

One, two, three, four, five, six, switch!
Crazy going slowly am I
six, five, four, three, two, one, switch!

Just when things are calming down, all hell breaks loose.

So Jacqui wrote the blog just a few short days ago, on Monday morning, and she was pretty much feeling back to normal after a tough round. 

And then it was Monday night...before she went to bed she said the inside of her left arm, just above her elbow, was hurting and we took a look and it was swollen and reddish.  We thought maybe she had pulled a muscle or bumped it or something and decided to see how it looked in the morning. 

In the morning it was not looking any better, and was very tender so I gave her a few Tylenol and a bag of ice and said if it didn't get any better she should ask them about it when she went for her CT scan later that morning.  So it didn't get any better - and they took a look at her arm and sent her straight to the ER.  It turned out to be a Thrombosis (blood clot) - one in her arm and then another one in her neck.  Thankfully she didn't have to remain in the hospital, but now has to give herself injections everyday to thin her blood and help to dissolve the clot.  She had pain medication that was easing the pain somewhat, but it was still quite swollen.

Friday morning she woke up with her whole forearm swollen and of course when she called the doctor's office they said she should go back to emergency to get it checked out.  So back to the hospital she went - more time to sit around and wait.  The only good thing here is that when you are receiving chemo you not only have a cancer card (literally) but you have a "Go to the front of the line" letter so that if you do end up in ER, you get in and seen quite quickly - yay cancer perks - is that a thing? - well I guess it is because when she arrived there was a 3 hour wait!  Anyways, she was only in there about an hour and they said it looked like normal complications of the clot and gave her another prescription.

Anyways, all these ups and downs and twists and turns have us all feeling like we're walking on egg shells, it's hard not knowing it's going to be okay even one 1 half day to the next - changes can happen so fast.  And even if a day goes well, you don't know what's around the corner and these days it seems like the surprises are often not good ones.

Hope - it's good to have hope, but the problem with hope is that the opposite is disappointment and when hope keeps turning to disappointment, you start to feel numb - to everything - nothing is as fun, happy, sad, good, bad or whatever, it's all kind of indifferent - and that's a weird place to be.

I tend to live my life feeling emotions fully and when I don't, I just don't recognize myself sometimes.

Fear cannot be without hope
Nor hope without fear    
Baruch Spinoza

3 down

Hello Everyone, 

It has been awhile since we updated you on what is happening.

I have officially finished 3 rounds of Chemotherapy.

This could possibly be the half way mark.

Tomorrow morning I am going in for a CT scan. This CT will show if there have been any changes to the tumours I will have the results of the CT scan on April 28.

These results will determine if chemo has been effective. I will either be continuing with 3 more rounds of chemo or considering radiation treatment or surgery.

I am not sure which of these I would prefer, they are all horrible in of themselves  

So that is all that we know. When we know anything more we will let you know! ;)

The third round of chemo was difficult. I was in the hospital from Wednesday to Saturday. I gained 10 pounds of water weight overnight which was horribly uncomfortable and a symptom of the chemotherapy. Thankfully I lost it all in a couple days but it was frustrating. My leg wouldn’t fit and had to use crutches or be in a wheelchair to get around.

The bright spot was that my mom’s sister, Grace came to be with us! She visited from Tuesday to the following Monday. She came to the hospital during the day to be with me when Tyler, Mom, and Dad were all at work. It was nice to spend so much time with her, we watched chick-flicks and made rainbow loom bracelets! 

Easter Sunday was a really enjoyable day! My mom and I went and saw Mamma Mia! We had seats in Row 6 and enjoyed every minute of the performance! If you have seen Mamma Mia you know what makes it so much fun! Mom and I love going to theatre and have been so fortunate to see many of the classics! This was such a lovely way to spend the afternoon! We are making plans to see The Book of Mormon next year when it comes to Calgary!

We spent the evening with The Hooges eating amazing food and being so ridiculously silly and laughing way too hard…so a typical get together!

Thank you again for your continued support. We will write again soon to let you know of any further developments!

Jacqueline!

Better, Blonder, Balder, Bump, Bastille

Better, Blonder, Balder, Bump, Bastille.

Let me explain...

Better:

This second round was so much BETTER!!  After the issues Jacqui had last round with nausea, weakness, hallucinations, blurry vision and then the high fever that put her back in the hospital, her Doctor decided to change the way they were administering the Ifosfomide.  They still gave her 3 doses, but instead of full strength, over 3 days, in 6 hour stints, they gave her 75% of the former dose, over 3 days, in 21 hour stints.  The drawback was being an inpatient instead of being able to go home each night.  But what a difference for her. No trips back and forth each day, one IV, rather than a new one each day and wonderful care while she was in - she could even have visitors which really helped pass the time.

Blonder:

Unfortunately one of the side effects of this type of chemo is hair loss.  Her hair started it's departure two weeks after the initial round.  As it was coming out in clumps, J decided to just go in and get her head shaved and be done with it.  Her good friend told her that his mom's friend had a wig salon and they arranged for us to go and see her.  So Jacqui, the friend, the mom and I found ourselves in a little room in the salon (he even brought wine to make it more festive!) with a cute little lady who really seemed to know her stuff.  Although at first we weren't sure  - the first wig she brought in was a chin length, light blonde wig - a huge change from the long, wavy, brown she'd been growing out for the last 3 years.   But when she tried it on, all of us loved it - it was such a surprise and after trying on a few others, she decided to stick with the first and now she's loving the blonde. 

 

Balder:

 

I work for a great company called Stepper Custom Homes and the people there have been a wonderful support for us during this entire roller coaster over the past few years.  As a show of support for both Jacqui and another beautiful woman battling cancer in our company, they decided to have a head shave (and in one case a very long beard shave) to show their care and solidarity in this for the two.   The buildup to the day was fun, on Wednesday there were about 5 guys committed to shaving their head's and then the challenges started.  At the end of the day on Friday, there were 16 brave men that bared their head's to the cold weather and one chin that hadn't seen the light of day in many years.  Money was raised to help with expenses for the two, but more than that was the love that was expressed in this outpouring - both awesome and humbling - that people would take the time and put the effort to show they care in such a tangible way.  Peter and Tyler were among the shaver's, so I am currently the only one in my family with hair, I suggested that I get blonde wigs for them also, but my offer was turned down and/or ignored - rude!

 

Bump:

 

Jacqui, after the initial week had been feeling so good!  And then, this past Wednesday, I had to be out of town overnight for a conference and that evening Peter called to say that he'd had to take her in to the hospital because she was feeling very weak and dizzy and had a bad headache.  There was no fever, but he was concerned because these were possible side effects of the chemo and when he called they had advised that she go in to be looked at.  They checked all her vitals, kept her in for a while and she started to improve as the hours went by.  Finally they decided she was well enough to go home again - we were relieved she didn't have to stay in .  At home as we talked about what might have caused this, she told us that as it had been such a nice day (finally) she had taken some time to go for just a little run (yes run!!!) and it had just felt so good.  That and a late night at the "Kings of Leon" concert the night before proved to be a bit much - as would be for a lot of people - let alone someone undergoing CHEMOTHERAPY!!!!  Haha, can't keep a good girl down, but we're only laughing because it turned out well - we'll have to keep a sharper eye on her. 

 

Bastille:

 

Speaking of concerts, this last week was full of concerts for Jacqui, she had planned to go to two, then went to see the Kings of Leon at the last minute also.  She missed one because of the incident above and the final one was Bastille on Friday night.  The day before, her friend told her she had a surprise for her - she'd arranged for her to sit in on an interview a radio station (92.9X) was doing with Bastille on Friday afternoon.  So fun, the two of them were able to meet the band, get some pix and then sit in the studio for their interview and live performance of one of their songs. 

 

In telling these stories of kindness to Jacqui, let me say these are just a few of the many ways people have reached out and shown love and support - it continues to awe and inspire us.  Thank you!

 

All in all this second round, round "B" has been so much better, what a relief.  Tuesday is the start of the next round and it looks like they will admit her again so we're hoping she manages as well.  My sister is coming to help and hang out so we're excited about that!

I read this the other day - someone's mom had told her this:

It's a marathon.....

When you get tired and feel worn out, DON'T STOP. RUN ANYWAY.

When you feel drained and parched and starved and desperately far from the finish line, DON'T STOP. RUN ANYWAY.

When you feel sick and close to dying, and feel like thousands of people are easily passing you by while you're there giving your best and not moving an inch, DON'T STOP. RUN ANYWAY.

You may not win the WHOLE race, but you will win YOUR race, meet your goals, and accomplish something spectacular.

 

 

Jacqui if you're reading this - no running for you - yet....

Worn

Round Two:  

Well after a few short (very short) days of feeling pretty good, but tired, Jacqui goes back in for her second round of chemo tomorrow.

We weren't sure if she would be strong enough or that her white blood count would be up enough for her to start again this week, but all seems okay, so here we go again.  It's really hard to start this again, I can see by Jacqui's face that it's just so much - too much.  We don't know how this round will go, but know from past experience that it just gets a little harder each time.  

But there are a few changes this time:

• First of all she is going to be admitted to the hospital, which is good - in that she doesn't have to travel back and forth each day and bad - because she doesn't want to have to stay in the hospital again
• they are going to reduce the dosage a bit because of how hard it was on her body
• they will give it to her more slowly, but continuously over a 24 hr (or so) period - it's usually 3-8 hour days - this is good because she won't have to have the IV re-inserted every morning, which can get really difficult as the weeks go by

She will be in for 2-3 days depending on how she responds to everything and then home to recover again.  It all just makes her feel tired and sad, and yet you wouldn't know it to see her, that spark just always keeps shining so bright! 

There is a song that I heard the other day called "Worn" by 10th Avenue North and it describes very well how we're feeling right now....

I'm Tired I'm worn

My heart is heavy

From the work it takes

To keep on breathing

I've made mistakes

I've let my hope fail

My soul feels crushed

By the weight of this world

And I know that you can give me rest

So I cry out with all that I have left

Let me see redemption win

Let me know the struggle ends

That you can mend a heart

That's frail and torn

I wanna know a song can rise

From the ashes of a broken life

And all that's dead inside can be reborn

Cause I'm worn

I know I need to lift my eyes up

But I'm too weak

Life just won't let up

And I know that you can give me rest

So I cry out with all that I have left

Let me see redemption win

Let me know the struggle ends

That you can mend a heart

That's frail and torn

I wanna know a song can rise

From the ashes of a broken life

And all that's dead inside can be reborn

Cause I'm worn

My prayers are wearing thin

Yeah, I'm worn

Even before the day begins

Yeah, I'm worn

I've lost my will to fight

I'm worn

So, heaven come and flood my eyes

Let me see redemption win

Let me know the struggle ends

That you can mend a heart

That's frail and torn

I wanna know a song can rise

From the ashes of a broken life

And all that's dead inside can be reborn

Cause all that's dead inside will be reborn

Though I'm worn

Yeah I'm worn

It makes it even harder to face - if that's even possible...

As some of you know, Jacqui is back in the hospital.  She started feeling a bit feverish on Friday, but nothing over the magic number of 38 degrees, so we weren't too concerned until Saturday evening when it was finally over 38 and she called the "Chemo Line".  They told her she should go in to an ER to get checked out.  Thankfully when you have chemo, you get a letter that let's you by-pass the line up and you get right in so we didn't have to wait at all.  

When they were getting her checked in her temperature was up to 40, rising that evening to 41 at one point - pretty scary.  After many samples of blood were taken, she was given 4 different antibiotics to fight off whatever was bugging her (literally).  Blood tests came back in about an hour showing that her white blood cells (the ones for immunity and fighting off bugs) were completely depleted.  Not so surprising after having chemo, but she'd had an injection to prevent this - I guess it just wasn't enough. 

They fought the fever all night and it took till Sunday evening before it came down to a more normal spot, but then went up again a little bit. 

She spent the night and most of Sunday in the ER, but in the brand new South Hospital it was a very nice private room so we weren't too concerned.  Sunday evening she was moved to a regular huge private room and is currently very comfortable there. 

After the little spike last night, her temperature has been pretty normal and she's feeling quite good.  The doctor today said she has to go about 48 hours without a fever.  The blood tests haven't been conclusive about what has caused the fever, but they aren't too concerned as long as it doesn't come back and her white blood count improves - which it has - to .6, they would like to see it at 1 (around 2 is normal). 

So she will likely be in a least another day or two - which is very discouraging for her.  She had lots of plans this week on what would have normally been her good week, so it's pretty disappointing (and scary and stupid too). She is accepting visitors - gowned, gloved and masked visitors  -  she has to be protected from any germs.  

It's also hard knowing we have more rounds to look forward to and wondering how she will react to them - it makes it even harder to face - if that's even possible...

It’s okay to fall apart for a little while

Hello Family and Friends

My Mom asked if I would be willing to write about how round one went. We have been able to speak or text with many of you but I know lots of you are curious.

 
This round was hard.

Day one was fine. Dad and I went and watched Legally Blonde (our favourite movie) and things were pretty good. I didn't feel too sick or anything that wasn't manageable.

Day two my mom took me and our good friend Cathy joined us. Things became more difficult this day. I started to have lucid dreams. I thought doctors were talking to me and I would turn to get my mom’s opinion and realize my eyes were closed and I'd open them and there wouldn't be anyone other than Mom and Cathy!

Day 3 was awful. My sweet brother Tyler and cousin Alyssa took me for this treatment. I have hardly any memories from this day! I apparently told Alyssa my new socks were from lulu lemon on more than 3 occasions! I talked with my Doctor, but only remembered having done the following day. I remember being in the car on the way home and starting to talk back to the radio and then stopping myself realizing that I was not talking to a human! I don't remember coming into the house or going to bed!

Saturday was fine though! I was loopy on drugs but I had an appetite and was chatty. The Hooge’s and one of my good friends came over that night and we watched You Tube videos and had a fun night. Then around 9, I basically decided everyone should leave because I was tired!

Sunday and Monday were very bad. I couldn't keep anything down and was constantly nauseous. The codeine that was supposed to suppress my cough made me sick - it was very frustrating and I felt very helpless. I found it difficult to move from my bed to the couch, difficult to drink water, and I wasn't hungry at all. But by Tuesday I was feeling better, wasn't throwing up and even managed to leave the house for a couple hours to visit with some friends nearby! Wednesday I was starving and eating everything and Thursday I was out of the house all day!

It's weird, chemo makes you feel so sick and low as if you are dying and then as you wean off the medicine you gain your energy and spirit back. It's exciting and I feel ready to socialize but I have this nag in the back of my mind reminding me that I have to do it all again much too soon.

Next time will be harder too, and that's discouraging. My hair is still here. It's thinning out but it is still here and I am so grateful for it! It's so pretty and I am going to brag because soon it will be taken from me!

Thank you for the prayers, for the meals, for the trinkets, the cards, and the flowers. Thank you for the texts and the Facebook messages and likes - it does not go unnoticed!

 
PS:  Watching House of Cards and Nashville are how I've been passing most of my time! Netflix is the absolute best

It’s okay to fall apart for a little while

You don’t always have to pretend to be strong,

and there is no need to constantly prove that everything is going well.

You shouldn’t be concerned with what other people are thinking either

 – cry if you need to –

it’s healthy to shed your tears

The sooner you do

the sooner you will be able to smile again 

And a smile doesn’t always mean a person is happy

Sometimes it simply means they are strong enough to face their problems

 

You're gonna hear me roar....

 

Did you know that the Serenity Prayer has a second part?  Well this is it:

Living one day at a time;

enjoying one moment at a time;

accepting hardships as the pathway to peace;

taking, as He did, this sinful world

as it is, not as I would have it;

trusting that He will make all things right

So yesterday was pretty much as we expected.   Chemo was the best option of a few awful options.

On an early episode of Sons of Anarchy (no judging please-but I did have to stop watching it - too much for this girl)  a guy had kept a club tattoo on his back after he had been kicked out of the club.  This was not allowed and the "Sons" gave him the option of "Torch" or "Sander" meaning they would either burn it off with a torch or sand it off with a sander.  That's kind of how I felt yesterday - we chose torch....

 

It will be a higher dose of one of the chemo drugs used in the "cocktail" last time - Ifosfamide - used on it's own, in a larger dosage, it's been quite effective in treatment of Synovial Sarcoma.   

 

So it starts tomorrow. 

 

3 rounds (cycles) to start after which they will do another CT scan to see how the tumor is responding, assess how she is responding and then possibly do up to 3 more. 

 

Each round consists of: 

Week one:  Monday - Blood test (to make sure her blood levels are sufficient to receive the chemo) and appointment with the medical staff and then Wednesday, Thursday, Friday - 6 hours a day minimum.  She will come home in the evenings as long as she can handle it, otherwise they'll keep her in for the 3 days.

Weeks 2 & 3:  recovery

 

Repeat

 

And the side effects - it's like reading a horror story - but of course right now the worst and most noticeable for her is loosing her hair again - her beautiful hair. 

 

Have I mentioned that this is exhausting - I know I have but it still is. And although we are hopeful and want to be optimistic, sometimes the losses add up and it's just plain hard to feel positive and relate to that prayer at the start of this entry - it's a fight - not a very fair fight.  So here's a song that Jacqui's been singing a lot these last few months and if you know her at all - some of the images will make you laugh because it's just so her (especially the roaring part) -  

 

Translation in progress. Please wait...

I used to bite my tongue and hold my breath

Scared to rock the boat and make a mess

So I sit quietly, agreed politely

I guess that I forgot I had a choice

I let you push me past the breaking point

I stood for nothing, so I fell for everything

You held me down, but I got up

Already brushing off the dust

You hear my voice, your hear that sound

Like thunder, gonna shake the ground

You held me down, but I got up

Get ready cause I’ve had enough

I see it all, I see it now

 

Now I’m floatin like a butterfly

Stinging like a bee I earned my stripes

I went from zero, to my own hero

I got the eye of the tiger, a fighter, dancing through the fire

Cause I am a champion and you’re gonna hear me roar

Louder, louder than a lion

Cause I am a champion and you’re gonna hear me roar