Jasons GIST Journey

A journey worth remembering

Hello again……. update – christmas, cuba, Cancer, CT Scans, photoshoot, friends March 26, 2013

Good morning everyone.  I know its been a while since I updated the blog. There are a few reasons for that… First: I’ve been doing well and medically stable…secondly: I enjoy living my life day by day and not always thinking of the “C” word lol.

There’s been a lot going on since last year, Christmas with the family was AWESOME! In late January, Kerry, Aidan and I went to CUBA for the first time ever (a surprise trip from Kerry to the family).  Also was the first All Inclusive trip and flight for Aidan.  Trip was awesome and I loved every minute of it even though the temps were cold most days and I was huddled under towels by the pool lol.  It was an amazing and fun thing to do with Aidan and being there for his first flight was so much fun!

We had another Cancer scare in the family when my sister found a lump in her breast.  Thankfully it turned out to be non cancerous and she is doing well.

A friend of ours who was integral in throwing a huge benefit for Kerry and I last year was just recently diagnosed with Cancer and they are sadly going through a very rough patch but are doing their best to stay positive and are two of the nicest people I have ever met and just goes to show how horrible of a disease Cancer is and that it can and will hit anyone anywhere.  V & A We are thinking about you daily.

As for me, I have had some pretty amazing experiences and received some pretty great gifts and opportunities lately.

#1. Another great set of friends of ours P & A spoke with Kerry and a cpl weeks ago we were all at a party together, they presented me with a gift.  It was a Quilt from Victorias Quilts Canada.  They have volunteers who stitch together hand-made quilts and DONATE them to people living with Cancer.  It is BY FAR my fav blanket/quilt ever and is probably the one piece of fabric that means the most to me in the house.

Please visit tem at: http://www.victoriasquiltscanada.com

Victoria’s Quilts Canada’s mission is to provide handmade quilts to people with cancer in Canada.By providing these quilts, we hope to bring physical comfort to those dealing with cancer as well a spiritual comfort in knowing that they are not alone in their struggle.

#2. As most of you know I hold 2 jobs to help keep up with the costs associated with Chemo etc and one of the jobs I have the opportunity to work with some pretty unique people and have pretty awesome experiences.  Last month I met Mr. Melnyk (owner of the Ottawa Sens).  As a result of that meeting he has invited me to see a NHL game in Ottawa.  So Kerry, Aidan and I will be going on April 20, 2013 to see Ottawa vs Toronto – GO LEAFS GO!!  As April 25 is the one year anniv since being diagnosed with GIST, we are going to use this experience as  CANCERVERSARY and spend the weekend as family together in Ottawa, staying at a hotel, taking Aidan to see the Parliament buildings, see the game and then visit some cool places out there!

#3 Kerry was told about an organization called SMILING EYES where professional photographers who are part of this network get together to donate their time and services to families living with Cancer.  They offer a free photo shoot for the family or individual and all related services.  Kerry was amazing at setting this all up for what I’m sure will be an AWESOME family photo session down in Toronto this Friday with our photographer ALICIA THURSTON.  If you know someone who could benefit from this amazing organization, please check out www.smilingeyes.ca

Our Mission

The Smiling Eyes Project is a non-profit group of Professional Photographers offering complimentary photo shoots to people/families facing Cancers fight or victory.

Each Photographer is commited to donating up to two photoshoots a month for the Smiling Eyes project.

Our goal is to provide you with an hour out of your journey, to offer you  fun and laughter with your loved ones, while creating memories that can be cherished.

We want to help make your journey a little less difficult, and make memories of life and love more vivid.

The Smiling Eyes Team

Now many of you have been asking about my health…. Well I have been doing well and not slowing down one bit.  This can be good or bad lol.  The fact that I work 2 jobs means that for the months of Feb, Mar and April I will have had only a total of 9 days off in the 3 months. This is what’s needed to stay on top of the costs associated with being me, but also is an obv strain on family life.  I’m really looking fwd to May when I will have more time to spend with the family. As a result of working a bit too much, I do find I get sick a bit more often (colds, stuffy nose etc). I have been keeping up with my CT scans and follow ups with Dr. Ko at Sunnybrook.  I went for blood work and a CT scan 2 weeks ago and today at 2pm I have my follow up with Dr. Ko.  the amazing thing about Sunnybrook is that they have a system called MYCHART.CA where you can see your chart, your lab results and everything else that has anything to do with you.  So within an hour or so of having blood work drawn, I can log on and see my lab report.  This allows me to track my progress or decline and really understand what’s going on inside me.

I AM HAPPY TO REPORT that for the FIRST TIME since before I was diagnosed…. my Hemoglobin (HGB) levels are finally back up within range (130-180) and I am at 131.  Down side is that my White Blood Cell (WBC) count and my PLATELET count is dropping and is now at its lowest levels ever.  This is likely why I am becoming sick more frequently. So last Thursday I woke up and my uvula was 3x bigger than it should be and I was choking on it along with very swollen glands in my throat.  5 days later and lots of meds and I’m felling better. Now just a cough and disruptive sleep.

Today I see Dr. Ko and will be looking into how the new ONTARIO GLEEVIC COVERAGE works and once I get the deets , I will blog about them too.

Sorry for the delay and I hope you all finally get some sunshine and SPRING finally shows up!

 

Jay

 

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Ontario Drug Programs approve funding for Gleevec for 3 years!! February 27, 2013

Filed under: Uncategorized — Jason & Kerry @ 12:02 pm

Well the news we have been waiting for is finally here!!!!  We received notification from the Life Raft Group that their persistance with the government has finally paid off. The Ontario Drug Programs have approved funding for adjuvant GIST patients for 3 years! This is the best news we have heard in a long long time. All our worries of scrambling to find the money to pay for the remainder of Jays treatment after August have now subsided. Breathing a big sigh of relief now.

An update on Jay: he’s doing great! A few aches and pains and really crappy days, but nothing to severe!  He’s a trooper!!

 

 

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Patient Experts in Health Technology Conference November 24, 2012

Filed under: Uncategorized — Jason & Kerry @ 1:48 pm

Good morning everyone, its been a while and I apologize.  Too much work, trying to save for christmas and new tires and new bearings and Gleevec reserves is wiping me out.

Just wanted to let you all know that I am really excited to attend the Patient Experts in Health Conference taking place in Toronto this Sunday through Tuesday. Its great in 2 ways … first I hope to come out with an understanding of the drug companies and systems in place and learn a lot and 2nd I get to be off work for 3 days lol.  Thanks to LIFE RAFT GROUP fo sponsoring my attendance at this conference.  Never know what kind of change can take place from just 1 conference full of people that really care and have genuine interests in the drug companies and their roducts along with the governments impack on subsidy etc

I will update you all following the conference and  I hope you all have a great weekend.  First snowfall hit today 😦

 

Sick and tired of being sick and tired October 23, 2012

Filed under: Uncategorized — Jason & Kerry @ 5:41 pm
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Well here we are about 77 days into Gleevec and the last 2 weeks have been brutal. Started with massive fatigue, headaches and body aches and has now crept into some form of strep throat. Now I know you are all saying one likely has nothing to do with the other, and you may be right. I just know for the last 2 weeks I have been feeling like $hit. I attended the Day of Learning for LRG and in that meeting many gisters said the muscle cramping can be extreme at times and oh yes I can attest to that, but this is somewhat different. It’s an all over body ache…. I compare it to being in a car accident – about 3-4 weeks ago – you’re not hurt anymore, just really really stiff and achy. About 3 days ago my throat started hurting and I didn’t pay much attn to it and today I can hardly talk, my body is very sore, I’m tired and feeling run-down.

The following gets a bit personal – so look away if convos about your bowel movements freak your freak – – – Yesterday and for the last 2-3 days my stomach has been making some serious gurgle noises and I’ve had some stomach cramping. I worked through the day from about 7am-4:30pm and then onto my 2nd PT job from 5:30-11pm and last night I guess my stomach had had enough. On my break I went to the washroom and passed a soft stool that was not “normal”. It had more of a red tone or Maroon tone to it, this is obviously concerning seeing as my history with red/black stools  is what led to me finding out about GIST. Today I was out all day at personal appt with Kerry and mentioned it to her. Following that we had a funny discussion about how this is what our convos have turned into…. Instead of how was work? What’s new in the office? Wow was your lunch? Its now, How are you feeling? Any abnormal issues ? Have you eaten today? Did you take your meds? What colour is your poo? LOL. You know its love when you can have those convos over a lunch at Burger King.

I called Sunnybrook and spoke to the oncological RN who called me back and after updating her, she contacted Dr Ko via email who got back to her then she called me back and advised me to monitor the stool over the next day or so and there is no need to go to a hospital at this stage.

I have my first post op CT Scan on Friday along with blood work, so we will be able to check me out then. Just thought I would share with all you wonderful people my current maroon poo story and take a minute to wish you all a very happy Halloween! (My fav day of the year)

 

LIFE RAFT GROUP Canada – New Board Member: ME!!! October 15, 2012

Filed under: Uncategorized — Jason & Kerry @ 7:04 pm
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Good evening everyone, and thank you for following along with this blog.  I have heard such great feedback from so many people and I really appreciate that you follow! It means a lot to Kerry and me.

This past weekend we both attended the Life Raft Group (LRG) – Day of learning at the Novotel Hotel in North York. The event took place Saturday from 9:30am- 4:30pm. This was the 2nd LRG event for Kerry and me; however we have been in constant communication with the President, Treasurer and other valuable members of this amazing organization for a long time now. This day was a great day where we had the opportunity to hear from our President as well as outside presenters from: Novartis (maker of Gleevec) who spoke about the processes for drug development and trials. My oncologist Dr. Ko spoke about treatment and options out there for GIST patients and then a surgeon from Sunnybrook Dr. law who spoke about the relationship between the patient and the surgeon and what to look for in a great surgeon and what questions to ask and information to be aware of. Also to be aware that not all tumors are resectable (surgically removable) immediately and sometimes you really need patience to be a good patient!  It was a great day and Kerry and I really took a lot of great information out of the day. There was information given on other drugs that were being looked into and tested however the results were marginally different from what is already on the market that it makes no sense to proceed further with it. The stats, the time lines, the benefits of the current and tested drugs are always disappointing to me and I’m sure also to others living with GIST, but it’s all we have. Nothing groundbreaking was announced, but no one was expecting that either. We know that LRG is working hard with the province of Ontario to increase its coverage of GLEEVEC to hopefully match that of Manitoba, where they have adopted a policy of covering ALL prescribed Cancer related therapies. We want that right across Canada – but for me and my family – I need it in Ontario!

Another amazing thing that happened at the Day of Learning was that I was nominated and the voted into the Executive Board of Life Raft Group Canada! I am so very honored and happy to join the organization that just recently became officially recognized as a Charitable Organization that allows you as a donor to receive a tax receipt for your donation!

I am officially a Member at Large and my position will be tweaked as time goes on and I get into the swing of things with LRG.

On a side note – later that night we went to the POWERHOUSE OF TERROR at Kipling and Lakeshore with a wagjag deal Kerry bought earlier.  Wow what a great time getting scared out of our minds!  Even did a simulated coffin ride (first time inside one with the lid closed for about 3 min) – it wasn’t as morbid as it sounds as there was an audio and motion simulator inside that took the edge off of the fact that you were in a real coffin! Lol.

 

120 days later September 29, 2012

Filed under: Uncategorized — Jason & Kerry @ 2:02 pm

Well here we are 120 days since the GIST was removed, 157 Days since I was diagnosed and 53 days since I started Gleevec.

I’m pretty happy with the way im feeling, im happy with the fact that the muscle cramps have been subsiding and overall happy in general.

The LIFERAFT GROUP annual ‘Day of Learing’ is coming up and Kerry and I are looking forward to that very much.

October 12 is the Toronto Zombie Walk and I have picked up a grey suit jacket and pants along with a dress shirt and tie from goodwill for only $11 total and will ZOMBIE it all up in time for the event and Aidan and I (maybe kerry too) will join the thousands of ZOMBIES at Toronto City Hall for the 10th annual event.  3rd year for us in a row.  For those of you looking for a day full of fun and irrelevant care free good times, it’s a free event!

Thanks to those of you that follow this and keep me motivated and positive. I know some of the best people on this planet and I appreciate every one of you for what you bring into this experience. Especially Kerry – you rock!

 

Muscle cramps and Gleevec September 16, 2012

Filed under: Uncategorized — Jason & Kerry @ 7:43 pm

Well the side effects are now starting to show themselves…. Muscle cramps and muscle pain are going full tilt.  Yesterday  I was woken up at about 7am by severe calf muscle pain.  Both my legs were bent up in a fetal position when I woke up  and my calves were in a crampy spasm and flexed so hard I thought they were going to explode or rip in half.  Could hardly stand up or walk.  That lasted ALL day and into the night.  This morning im not sure if its sore from the severe cramping that happened yesterday and now its just sore from it or if this is my new norm.  Dear god, please don’t let it be my new norm.  For about a week or so now, whenever I get up, it feels like I was in a car crash 3-4 weeks ago, ya know not hurt anymore but just all over sore?! My legs are so sore and I find it uncomfortable to get up from a seated position, however once I’m up and moving – 10 seconds later im fine…. right up till I sit down again.  If this continues more than a week, I will be contacting Dr. Ko’s office and asking for something to provide some relief.

Aside from this, im doing well.  I was able to get my local Shopper Drug Mart to carry GLEEVEC to save me always needing to pick it up at Sunnybrook.  Yesterday I picked up the packs for month 3 & 4.  Yup another $7500.00 in meds!.

Today we tried RUB-A535 on my legs but didn’t really notice much improvement. Cut the lawn and stained the deck today, so I’m sure that didn’t help lol.