10 Years

Wow.  This day snuck up on me......even though I had booked the day off, I hadn't clued into the fact that this was Stefan's 10 year cancerversary.  The day has certainly brought back some memories of 10 years ago....and that call from Stefan saying he had a brain tumour that shook our world.  I'm grateful for every single day of those 10 years and keep praying for more.

I haven't blogged in a while - what do you say in a year like this one, when everyone is struggling with something.  Seems like our gripes pale in comparison to many....so we just hibernate in our bubble, and try to keep positive.

Stefan is in the good phase of his chemo cycle at the moment, (and luckily for Christmas) he has about 3 good weeks to the one bad.  During the good weeks, I can pretend that everything is normal.  For about 7-10 days of each month, while Stefan is taking his pills and the few days after, we can't pretend.  Stefan manages pretty well.  Instead of morning runs that week, he does his walks, and he may actually take some time to have a nap or watch a show in the afternoon.  Swallowing the pills is a challenge for him, and gets a little harder each month.  These are the hard days as we are reminded that Stefan is fighting something pretty bad.  He only has 4 more cycles to go (assuming all is okay as things go along).  He has his MRI roughly every two months, and we have been told that everything looks stable.

I have been quite busy with work, which is perhaps a hidden blessing as busy work means I can't stress over brain tumours.  Being at home has been beneficial since I can sneak extra cuddles in at lunch.  COVID stresses us out I'm sure as much as everyone else.  I put serious thought into moving us up to the Yukon for the school year to see if we could find a solution that would keep Stefan safe and let the kids go to school.  It obviously didn't pan out, and we felt the best option was to keep the kids home.  They continue to be supported by two amazing teachers, and of course Stefan.  They keep a pretty regular schedule with their hours the same as the school day.  I know it's been a struggle for Charlotte as this would have been her first year at middle school, a time when friends and meeting new people is so important.  Thank goodness for some solid friend connections, facetime and roblox.  

Ultimately, I think this COVID/Chemo duo has been most challenging for our family, as they haven't been able to visit/support us this year. and vice versa  But, we are doing okay.  I feel a bit selfish being able to covet Stefan to myself this year.....but due to COVID, I don't even have to feel guilty about it.  We would usually be so busy in December hosting parties and family dinners....I miss our family and friends very much - but taking the opportunity to enjoy the quiet, kids and Stefan.  

Today - we managed to get in a family walk in our beautiful 'back yard', and we toasted 'surviving 10 years' over some take out tonight.  I didn't do Christmas cards this year - so don't be surprised if I ring you up to catch up instead!  I hope everyone is staying safe and healthy.  We look forward to hopefully seeing many of you sometime in 2021.  

Covid and Chemo

Well hello family and friends.  I guess I'm not as good at blog updates this go around.  Let's blame Covid 19. Why don't we.

Once Stefan received his additional stitches, he was on the mend.  It did seem to take longer then the last two surgeries for the fluid to reduce from his surgery area.  We were tempted to draw a face on the pulsating bulb protruding from his head.   We settled for him moving it at will as entertainment on our various zoom calls.

Stefan was back to his morning runs and bike rides within a few weeks, and then we just played the waiting game to hear from the Cancer Center on when chemo would start.  Since we had the pathology report confirming the grade of the tumour hadn't changed, we weren't feeling to stressed with the wait.  We also were prepared from some extra delays due to COVID 19.

COVID 19 life hasn't been too bad.  We would have been laying low key anyway.  I am fully working from home and removing my commute has added time for family.  Even though Stefan is currently off from work, he isn't really off as he has taken over the teaching of our kids (which for all you parent teachers out there, is much different then teaching other people's kids).  It's been a nice treat for me to witness him at his job though, and I can see why kids love him as a teacher.

COVID life is not too different then cancer life.  I see many of my fellow momcologists make similar comments.  Bubbles, anxiety over viruses, isolation and fear.......at least we have been here.  I think though, now everyone who hasn't walked this path can maybe relate a bit to what we've been through - and maybe can see there is a silver lining.  Learning to appreciate the small things.  Being thankful for your family and friends and a roof over our head.

We received word from the Cancer Center last week, and things moved pretty quickly after that.  Blood test Friday, and his medicine was couriered to him today to start tonight.  Stefan starts his first cycle tonight, 5 days of Temozolomide and 23 days off (28 day cycle).  He will have bloodwork and appointments each cycle to assess weather he continues to the next one, for a maximum of 12 cycles.  All the usual chemo side effects (less the hair loss): low white blood cells, low platelets, nausea, fatigue.

So, even though BC is going to phase 2, we will likely be staying bubble bound a little longer, and appreciating the small things.

Chemo deliver (did I mention Stefan's COVID beard?)

Surgery Update

We are home and doing well.

Perhaps I shouldn't get as nervous as I do with each surgery, but when our first neurosurgeon said to us "if you do another surgery, you will be a vegetable", that kind of weighs heavily on your mind each time you go into the operating room.

Things change over 9 years, and the pre-op process was a little different this time around with regards to washing routines and rules for eating.  We were lucky to be blessed with a 7:45 surgery time which meant no hard fasting time for Stefan.  We were up at 4:30 am on March 3rd to do Stefan's second scrub down before heading to the hospital.  I was very lucky that my sister Trudi came from Salmon Arm to stay with us for the week.  The kids adore her and it was one less thing for me to worry about.

The volunteer at Royal Columbia that day was an angel and would give me updates on if Stefan was out of OR and provided re-assuring words.  Stefan's sister and parents came by right when I got the news from Stefan's surgeon that Stefan was out of the OR and in recovery and that the surgery had gone well.  It was a relief when I saw him and we could confirm we had proved our first surgeon wrong again.  Stefan was speaking and moving - despite the drugs - he was not a vegetable (pause for old rugby boy jokes here)!

Stefan spent the first night under careful watch and was up and moving about by the morning.  We were very surprised when it was looking like we would be able to go home on the 5th!  I'm always very happy when we can go home since it's hard to split my energy between Stefan and the kids.  Stefan is always a bit worried, and I suppose this time he had a reason to, as shortly after we were home, he started leaking.

Many people have asked me if this is normal.  Like I'm an expert since we have been through three surgeries?  I don't know if it's normal, but our post craniotomy guide said 'Call your surgeon if: your incision is warm, red, swollen, or has blood or pus (yellow/green fluid) draining from it.  Since it was clear fluid, and at first it was a trickle, we weren't overly worried.  But after a few days, and as the trickle turned into more of a stream, it was growing increasingly frustrating for Stefan.  So, we sent a picture to our surgeon and, on Monday, we were given a choice to  either meet up with our surgeon in the ER on Monday or his office on Tuesday.  Since I was at work, and we wanted to avoid the ER, we took the Tuesday option. 

On Tuesday, we went in and Stefan got three stitches on the lowest part of his incision where the leakage was.  But, that night, it started again, just above the stitches.  So, on Thursday, we met our surgeon in the ER in the morning to get another inch covered above the previous ones.  Home for lunch, only to have the leak move a little further up his incision. (yes, like a leaky roof - we started joking about pulling out the duct tape).  We were back to the ER at 5:30 to have the whole incision done.  The end result was 30 something stitches over his 30 something staples (along with the side of his head feeling like a waterbed).  If this didn't work, the surgeon said we would have to go back to the operating room to open it up, reseal and do it again.  (argh - fingers crossed as that did not sound fun).  Stefan did not feel great and needed to stay laying down for quite a while after that.  Not sure if it was the extra pressure, the freezing drugs, the shock of all the extra stitches?). 

The whole process has slowed down recovery, but as of today, he is back to daily walks and doing his puttering around the house.  The stitches/staples removal has been pushed back as well as the surgeon would like to do this as opposed to having our family doctor do it.  And, as for 'if it's normal?', we were told our body is full of liquid and it will follow the path of least resistance, but we did need to stop it from coming out so the incision can heal.

We also got Stefan's pathology report back.  While I don't know everything it says (will find out more once we meet with the cancer agency again), I can say that it looks like the tumour has not changed from before (ie. it's still grade 2).  This is great news.  We are dealing with the same beast as 9 years ago, just with one less weapon in our arsenal (radiation).  

The kids are doing well.  They were definitely not themselves the first few days Stefan was in hospital, but once we were home and they could see Stefan doing ok, they were doing much better.

Being home recovering during a pandemic has reduced any FOMO (fear of missing out), but having to spend 5 hours in emergency on Thursday had Stefan and I cringing the whole time.  I hope everyone is staying safe and embracing home and family time.

Big thanks to all our support out there.  Special thanks again to my sister Trudi for helping us out last week, my sister-in-law Rebecca for taking care of Stefan's family and ensuring I was fed during hospital time.  We have been so lucky to receive meals and support and are feeling very loved.

If you get queasy with wounds/stitches pictures, you might want to stop scrolling now as I'll end this post with some pictures, least queasy to queasy.  (Stefan approved - I would not normally post pictures of wounds, but I think Stefan kind of wants to show off his war wounds).

Post surgery - looking pretty good.

Walking out of neurosurgery after only two days.  Brain surgery poster boy.

The leakage.

Incision before any stitches.

Today - the full incision with staples and stitches.

Not our favorite update...

I really did not want to be adding a blog post with bad news….but that’s where we are.

We were told some unfortunate news from Stefan’s MRI in November, and are now at a position where we are ready to share.

First off I would like to apologize to our friends and family – many of you were suspicious when we cancelled our annual Christmas party on short notice.  I’m sorry we were evasive.  We are in a slightly different world this time around with the kids being a bit older, and we wanted to ensure we were ready to tell them the news before letting others know.

Here is a little recap from when we first started this adventure a little over 9 years ago along with a summary of the recent news:

Dec 2010: After several doctors appointments over an 18 month period for Stefan’s fatigue and (near the end) occasional loss/jumbling of words, Stefan receives an MRI at Burnaby Hospital.  They discover an 8x5 cm tumour that has moved his brain stem 1 cm and rush him to emergency brain surgery at Royal Columbia.  He recovers well and we are home for Christmas.

Jan 2010: We are told that the tumour is an Astrocytoma, grade 2.  There is still significant bulk and it is recommended to do another surgery and then radiation.

March 2010: Stefan get’s his second surgery at Vancouver General Hospital, we are told 98% removed.  He recovers well.

April 2010: We are told that the tumour is an Oligiodendroglioma, but he does not have the chromosome deletion that bodes well for chemo.  Still told chemo can be an option down the line “when it grows again”.  

May to June 2010: Stefan completes 5.5 weeks of radiation

March 2011 to July 2013: we pause on Stefan to make our way through Charlotte’s cancer.  He continues with semi-annual MRI's.

October 2018: We are told another "no growth" MRI result and the decision is made to move from semi annual to annual MRI's.

Early November 2019: Stefan had his MRI in October 2019, and we met with our doctor in early November.  They had not received the official report (backlog) but our doctor said when she looked at the scans, in her opinion they looked consistent with past ones.  Without the official report, we did not do our usual celebratory facebook post but did silently rejoice.

November 20, 2019: Stefan receives a phone call at the end of the day getting the unfortunate news that: "His tumour is growing.  While it was hard to see in comparing sequential images, when compared to 2 years go, there has been growth.  It's 4x2 cm now."  It was a call that was hard to take and hard to comprehend.  Especially the size.

December 5, 2019:  We review options with the Oncologist.  We find out that Neurosurgeons can perhaps exaggerate.  We hadn't actually seen images after his second surgery and radiation and were never really told the size.  By the sounds of it, the tumour was about 2x1 cm after treatment.  This made the new size make a bit more sense.  (In hindsight, I think it was better living the last 8 years picturing it in our mind as a minuscule thing.)  We are told that the tumour is now considered an Astrocytoma.  (the World Health Organization changed the prognosis model in 2016).  THe oncologist laid out our options: radiation again (don't recommend, 35% risk of something bad happening), surgery (5% risk), chemo (5% risk).  His recommendation was to do another surgery to decrease the tumour size (chemo is more effective when there is less to deal with), and then do chemo.  He said if we don't go with surgery, then he wants to start chemo ASAP.  If he does go with surgery, he said it should be done within the next 6 months.  Stefan is otherwise healthy (he has had zero symptoms) and could continue on as normal for the time being.  That was a lot to digest and brew on over Christmas break. 

January 17, 2020:  Met with the neurosurgeon.  This was one of the three neurosurgeons that we met with before Stefan's second surgery.  Overall, we left this meeting feeling more positive then after the December meeting.  We compared the recent images from the image 2 years ago, witnessing for the first time the actual large hold in my husbands brain (and you all thought we were joking about the half brain the last 8 years).  We grasped onto the opinion of our surgeon that the images don't indicate it's transformed into a malignant tumour (aggressive tumours don't pick up dyes as easily) although we are cautious.  (surgery will allow us to have a conclusive pathology done).

Scan from October 2017.

Scan from October 2019 (note the closing in of some of the black areas).

March 3, 2020: surgery date

TBD: Start chemo.  Chemo will be Temozolomide.  It’s a less invasive oral chemo, 1 week on, 3 weeks off (1 month cycle).  He will start with a 12 month cycle.  Main side effects will be fatigue and nausea (he will receive additional medication to help with the nausea).  Effects liver and kidney's so he will have to limit drinking.  Also results in bone marrow suppression, ie. reduced white blood cells/platelets.  Like Charlotte's treatment, a fever will likely mean a trip to the hospital.  We will move to MRI's every 3 months.

I know that's a lot to digest....especially when it's been 9 years since we were on this roller coaster.  

Overall, we are doing okay.  I would say one of the more difficult challenges this go around is that our kids are older and more aware.  A large part of not telling friends/family of what has been going on the last few months is ensuring the kids were told first.  We weren’t ready to tell them until we knew what the next step was.  Having had 9 years of preparing for these moments has helped though and we continue to be thankful for every day.  We are getting very close to the surgery date and I am reflecting on how we made it through this all last time and realizing that our support system was likely what held us together.  You all helped us so much last time and we welcome all the love, prayers and support to get us through our next hurdle.  

We did make it to Disneyland for a pre-surgery trip - so I will leave with you with a photo of our crew's battle pose.  Our thoughts are with everyone who is struggling with something.  Hug your loved ones.