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!