girls night in

Sorry for the delay between posts these days.  I guess avoiding writing is my way of trying not to think to hard about the situation.  But - reality sets in.

As noted in the last post - we had two very different surgeon opinions.  We had said to Dr. C (surgeon #1 - who did the December 17th surgery) that we would want another opinion.  He had referred us to a Dr. A at Vancouver General - but Dr. A ended up passing us on to Dr. T.  Dr. T also works out of Vancouver General and is another one of the surgeons who works with the cancer clinic.  We have heard his name before (from the support group and our oncologist).  He is known to be more aggressive in his treatment.  We meet with him on Thursday - and expect his opinion to be more in line with Dr. L - the second surgeon.

We are still leaning towards surgery.  Dr. L is off for spring break - so we are guessing it will be an early April surgery.  That means - 6 weeks to recover from that, then a month and half of radiation - and then Stefan will probably sleep through the summer to recover from radiation - fun!

Stefan is frustrated and antsy these days.  If you have time to shoot him an email - it will give him something to do!

He had a busy weekend though.  He had an English cousin in town from Australia who he saw Friday night.  Then two of his best buds had him Saturday night.  One of them drove in from Salmon Arm - and is currently making the trek back along the long route to try to avoid the snow storms! 

So - while Stefan was out (my first night away from Stefan since he got home from the hospital) - Charlotte and I had a girls night in - which means she slept while I cuddled up with the couch, a movie and plate of nachos. 

Woke up to the beautiful blanket of snow!!!  We just got back from a walk - and Stefan and I will start watching the (delayed) Oscars once Charlotte's in bed.

Stay tuned - we have support group Wednesday and the appointment Thursday - will keep you posted!

Decision Time

We had two meetings this week with two different surgeons.  The appointments were like night and day, very different - in approach and opinion.  That makes it very difficult for Stefan to make a decision on surgery - so we are going to enlist a third opinion. 

	surgeon #1 (Dr. C)	surgeon #2 (Dr. L)
length of meeting	15 minutes	1 hour
props	none	model of brain, both MRIs
opinion	no more surgery, just do radiation	70-80% of tumour can be removed with minimal risk
risks of surgery	- Stefan would be a vegetable who wouldn't know who I was (he used the word vegetable a lot)	- minimal - 1-2% chance infection (typical for any surgery) - minimal bleeding risk - 5-10% chance of some speech impairment (not so severe he couldn't communicate) - 25-30% chance of loss of vision in top right line of sight (already experience some loss here)
Rest of conversation	none	- explanation of both MRI's - explanation of the risk of having so much pressure on the brain - explanation of surgery (using MRI to map where they are cutting) - not doing surgery now would not close the door to surgery, could do radiation and surgery at a later date (but recommendation is for surgery now by both Dr. L and Dr. M)

Stefan is understandably worried about the risks.  But - we are also thinking long term.  We want Stefan around - and want to take the steps to keep him around as long as possible.

Right now we are most likely going to go with surgery as the next step.  But - we will enlist a third opinion - and hope that the third surgeon's opinion is in line with Dr. L.  Once we decide on surgery - it would take place probably within the month.

Happy Valentines Day

Happy Valentines Day everyone!

We celebrated a day early.  Stefan pulled out all the stops with a romantic dinner (at the newly renovated Horizons)! 

I failed miserably at the romance - so hope to make up for it with this poem:

Roses are red,
Violets are blue,
tumours suck,
but I'll always be there for you!

Wishing my best friend/husband/love of my life a very happy valentines day!  Love you honey!

dentist and mexican

We took Charlotte for her first dentist appointment today.  She did so well - we are quite proud of her.  Of course they don't do too much - but the dentist said her teeth look good - yeah!  My turn tomorrow - it's been just over a year since I've been - I guess I was due!

We followed up the dentist appointment by having dinner at our favorite mexican restaurant - Charlies on St. Johns - we all agreed it was yummy!

mmmm - cheese quesidilla and french fries!

so many doctors

We had our appointment with Dr. M (oncologist) today.  The point of today's appointment was to go over what we had learned on the phone last week and find out which surgeon we should get our second opinion from (we had already decided we wanted to get a second surgeon opinion).

It was a really good appointment.  Dr. M takes his time, says things in a way that is easy to understand - and just seems like a really nice guy!

He had gotten some feedback from the neurosurgeon that is usually at the Dr. meetings (those Friday meetings with all the Dr.'s where they discuss patient cases).  That neurosurgeon believes that surgery could be done to debulk quite a bit of the tumour with minimal risk.  Dr. M will put in a referral for us - so we are looking forward to meeting him and hearing his opinion.  We asked about who is the 'best' neurosurgeon - but Dr. M gave us the politically correct answer of "they all have to be good to become a neurosurgeon" - I guess that's true though!  We are happy to go with the one that works with Dr. M - he sounds like a middle of the road surgeon (not too aggressive, not too conservative) and obviously works well/communicates well with Dr. M - can't see how that wouldn't work to our advantage.

Dr. M also spoke to Dr. C (the December 17th surgeon).  Dr. C has reviewed the MRI and is still of the opinion of doing no more surgery.  It's confusing - before - Dr. C had informed both us and Dr. M that a good portion of the tumour had been removed.  Now he is saying - he took a modest amount as he didn't want to take any of Stefan's functioning abilities - he instead put in this window (the hole in Stefan's skull) to alleviate pressure.  Which it did.  Our analogy is it's like if you have a leak in your roof - and you put a bucket to catch the water instead of fixing it.  It's frustrating to hear different things from the same surgeon!  While we're thankful that Dr. C did a good job of getting Stefan out of the 'life-threatening' situation on December 17th - we are still confused by his approach.  But - who am I to question a neurosurgeon!

We have an appointment Tuesday with Dr. C.  And hopefully an appointment with the second neurosurgeon soon after!  This is brain surgery - I can understand Dr. C being conservative - but we want a long term view on this.  We will just need to learn all the risks so that we can make the right decision. 

Dr. M went over the before operation MRI as well as the January 27th MRI.  Very interesting to see the pressure on the brain stem pre-operation.  You've all seen the 'window' alleviating the pressure.  Not much was removed from the surgery - that was seen in the MRI's.

Stefan did get some good (although if you asked his mom - she would take it as bad) news that probably made his week/month/year.  Dr. M said he could still play rugby in the future.  Once they get a metal plate on his head where the hole is - it's very possible for him to play again - not anytime soon though!

medicine

After Friday's bad news, we were lucky to have some preplanned "perfect planning" visitors to supply us with a healthy dose of laughter and family time.

Two of my best buds from Whitehorse arrived Friday and left this morning.  It was really hard for me to say good bye.  It was so nice to have them here this weekend.  I had some girl time Saturday night and we went for a very relaxing facial Sunday.

Stefan's parents were also here - and I'm sure they appreciated having Stefan to themselves for bits of Saturday/Sunday.

There was definitely a shift in Stefan's mood last week.  Today he was out and about with his parents - and we are already seeing him getting back to his more cheerful self.  We hope that some extra trips out of the house (either to the school or elsewhere) will keep his spirits up.

So - although Friday's news got us all down - we had great company to bring spirits up!

Bittersweet

Yesterday was a Bittersweet day.

We got the call from Dr. M (Oncologist) about the results of the MRI.  They still want to pursue surgery as the next step.  Summary below.

1. The surgery on December 17th didn't remove much of the tumour.  (contradictory to what the Dr. C, the surgeon had said - but now confirmed with the MRI.)
2. I don't know quite how to explain this - but will try.  The 'mass', while no longer putting pressure (and shifting the brain stem) is now pushing the other way - the tumour (or perhaps brain too?) is pushing out of the hole in Stefan's head where the surgery was.  A picture tells a thousand words:



Post Operation MRI - taken January 27th - note the protrusion on the right.

3. So, the oncologist would still like to do surgery, for the following reasons:
    -  to debulk the tumour (obviously this wasn't really done the first time around, and it's still really big)
    - debulking as much of the tumour as possible means a better prognosis
    - to get a larger sample for pathology (brain tumours can have different types of tumour - the larger the specimen - the better we know what it is and how to treat it)
    - radiation causes swelling, right now with the size of the tumour, it doesn't leave much room for swelling, that could be dangerous.
4. There was no neurosurgeon at the doctors meeting Friday (when they were reviewing the MRI).  Obviously a neurosurgeon needs to be consulted before we decide on surgery.
5. When I spoke to Dr. M and voiced that Dr. C had been insistent that no more surgery could be done, he said:
   - Dr. C needs to review the post operative MRI before he can say
   - if Dr. C still says no (since some doctors are more conservative then others) - we can look into a second opinion.
6. I asked - should I be concerned that there is a chunk of my husbands brain/tumour getting pushed out of his skull?  (ie. should I be sending him out in a helmet from now on?).  No, it's a slow growing tumour - so no emergency here, but he shouldn't be playing rugby
7. We now have an appointment with Dr. C on February 15th.  I don't know how we will be able to wait that long.
8. We will probably make an appointment with Dr. M next week as well just to go over what we learned today.  (I would also like to see about seeing another surgeon sooner - might as well get that second option now)
9. I was impressed that Dr. M told us this over the phone, to both Stefan and I separately, and we didn't have to wait a few more days to find out at an appointment.

So - not the greatest news.  I found out at work, so was a bit shaken and left early.  I know Stefan is frustrated as well.  It was also hard for him to hear it with me not being with him (as the designated note taker and question asker).  It will probably be a wait for surgery, and then it's another at least 6 week wait after surgery until they can start radiation.

I did say bittersweet day - the sweet part was two very dear friends arrived from Whitehorse yesterday for the weekend.  It was nice to have them to talk to as soon as I left work.  We had a great evening together (with Stefan!) and hit the casino - it has been quite a while since we had a night out that didn't involve the ER!  I have some girl time planned tonight while Stefan will be 'watched' by his parents!

Support Group

Stefan and I attended our first Brain Tumour Support Group today.  It's once a month.  It was a really good experience - some of it sad - but overall the tone of the meeting was hope.  The facilitator said "what happens in support group, stays in support group".  And even if I could share - I don't think I would - it was just to personal an experience.  We'll definitely go again - next month they separate the caregivers from the patients - I think that will be a really good experience.  There are all sorts of thoughts/feelings I haven't been able to share with Stefan - he's in a good place.  I'm the information finder/keeper - and with that comes some scary thoughts - I keep those to myself as I want him to stay the positive and determined fighter he has been.

I decided to take the rest of the day off from work too - and Stefan and I had lunch on Granville Island - it was nice to spend the day with my Hubby!  I think he enjoyed it too - being cooped up at home I think is starting to get to my 'type A' husband.  He is getting impatient!

The doctors meet to discuss the MRI this Friday - so I imagine we will have a meeting early next week to discuss the plan.

And - some big news - Charlotte is slowly taking steps to making her first official steps - that is if we don't count her wobbly 2 steps between Stefan and I.  We are working on it every day - daycare is too - I think we'll have a walker soon!