And Away We Go

Radiation. Not baby.

After a series of informative appointments and meetings yesterday, we learned lots more about my upcoming radiation regime, and we're all ready to go. Yesterday I was fitted with a custom plastic mesh mould that will hold my head in precise placement for each treatment so that the radiation can be directed exactly where it needs to go. It looks like something out of Tron. After a CT scan to help plan the treatment, we met with our Radiation Oncologist Dr. Parsons in the afternoon. She explained that I'll be getting 3500 centigrays of Whole Brain Radiation treatments over 20 cycles. The treatments will take place once a day, Monday to Friday, and they were able to schedule me in for my first appointment today. The decision on this treatment plan was made by an entire team of specialists, based on the premise that we want to Smash this thing, that I'm young and healthy with a good brain, and that with all of you and a baby on our side, my system will be able to handle this treatment. So we're going for it.

Meg in the waiting room, handling the paperwork (as usual)

The treatment today was no sweat. The entire thing took about ten minutes, and the radiation was only directed at me for about two minutes (about a minute on each side). The treatment unit, (like just about everything at the BCCA) is very well run and designed, and the technicians and support staff, (like just about everyone at the BCCA) are incredibly courteous, efficient, and friendly. They allowed Meg in the room to watch the setup, explained the whole process, and generally made the whole thing very comfortable. In general, it was a bit of a sci-fi experience, with the air momentarily being filled with an electric blue light and an ozone smell. Maybe there was something in the room with me, and I'll develop some kind of Spidey powers.

"The mask"

"The machine"

I should feel OK for now, and then within a couple of weeks, I'll lose most of my hair, and likely experience nausea, headaches, fatigue etc for a while. The cost of a cure. So off we go. With the current schedule, I should have my final radiation treatment on Monday, December 21st, three days after the baby's due date, four days before Christmas, and the day that my parents arrive. We like things dramatic around here. As I write this, Meg's whipping up a batch of her famous Caribou spaghetti sauce, and all thus feels right with the world. We can't thank all of you enough for your continued thoughts and messages. Let's get this done.

The beautiful wife, the beautiful life, the beautiful strife

Look at this picture:

     This is what my life looks and feels like right now. Sure, there's some resemblance to a Korean movie poster (I made Meg hold the flowers), but I can't help but look at this picture and feel at peace. Meg and I are a month away from the birth of our first child, and we have had the past week or so to really focus on that fact, focus on each other, and soak up the love from across the country.

     The recent shift in treatment direction came as a bit of a shock, but really what it is is the next step in the process of beating this disease, and something that we should have prepared ourselves a bit better for. My chemo did a good part of its job, and there is confidence that the radiation should continue the work. We're in very good hands under the care of Medical Oncologist Dr. Laurie Sehn,  Neuro-Oncologist Dr. Brian Thiessen, Radiation Oncologist Dr. Christina Parsons, and a team of radiation therapists that is apparently one of the best in the country. I have my first appointment with the radiation team on Monday morning. I'll be fitted with a mask that will help keep my head in exactly the same place for each treatment, I'll have a series of scans to help plan exactly where and how the treatments will be directed, and we'll have any questions answered about the upcoming weeks. It was originally mentioned that I'd likely get anywhere from 10 - 15 treatments which involve one hour daily appointments and no overnight hospital stays. It sounds like my first actual radiation treatment will be on Thursday. I'll be undergoing what they call Whole Brain Radiation. With the diffuse nature if Primary CNS Lymphoma, this whole brain technique has the best chance of taking care of all of the nasty cells.

     Short term side effects should include some fatigue, nausea, headache, etc, but apparently most people handle it OK. Real fatigue should set in about 2-4 weeks from my first treatment, and should make caring for a newborn an interesting challenge. Long term side effects (10+ years from now) could include some detriment on concentration, etc, but we've been told that age and health are really on our side, and that maintaining good vascular health will help keep me sharp as a whip. 
  
     We're ready for this. Like I said earlier, we've had the past week or so to really focus on each other, and it's been a nice time to realize what we have, and what we have coming to us. Really, it's made us realize that this is just what life is. People go through things every day all across the world, we're going through something now, and that's what life is. We're lucky enough to be surrounded by such a shell of love and support and to have this blossom of hope that squirms under my hand at night and reminds me that life is still beautiful.

     We're now really preparing our lives for the arrival of the baby, and for visitors (and helpers) at Christmastime. Timing wise, it all works out quite well. Meg's amazing Aunt Marg arrives on Thursday and will be around until the 2nd which will be great while we adjust to treatment. We'll then have another week or so on our own, and my brother Mike plans on arriving in Vancouver sometime around the 11th. Meg's parents show up a few days later, the baby's due on the 18th, I should finish my radiation at almost exactly that time, and then my parents arrive on the 21st. The amount of positive energy in the air should be electric.

     Furthermore to all of this, we've learned of a SMASH IT! fundraiser taking place at a Legion Hall in downtown Toronto on December 5. You can find more information about that here. I wish we could be there too. The music should be fantastic, it sounds like there are some great silent auction items, and who doesn't like a Legion Hall?  Huge, huge thanks to all organizers of this event, particularly Claire Slocombe, Katie Ross, my brother Shawn, and Meg's sister Brianna. Additional thanks to musical talents Dave Marshall, Stu Henderson, and the One Hundred Dollars Duet, Ian Russell and Simone Schmidt. You can find links to all of their music on the fundraiser webpage.

     Meg is doing amazingly well. She's the strongest, most amazing woman I've ever encountered. We both have low energy levels and limitations on our capacities to deal with the complexities of life in Vancouver sometimes, but usually all it takes is a quick glance at eachother to know that everything's going to be OK.

    So that's it for now. We really appreciate the continued contact and support. We're constantly overwhelmed by the feeling that at all times, somewhere, people have our backs. We can't tell you how valuable that is. Take care of eachother, and know that we are doing the same.

Settling In

It is a grey, wet, rainy Vancouver day today. I think this is just what November looks like here, people from Vancouver seem to carry on their way as per usual. I find the rain miserable and would take snow over this any day. We are doing alright. Taking this last step in stride, doing everything we can to make the news settle in a comfortable spot within us. It is coming. Certainly the last ten days have shaken us but we are still us and so we know we can deal with it and make the best of it. Speaking of making the best of it, one fantastic part about changing from chemo to radiation is no more time in the hospital. We have been eating out a lot, going for walks and checking out parts of Vancouver that we haven't seen yet. On the whole Mark is feeling really good, and his appetite has returned to heroic form (cheers steroids) which makes meal time much more enjoyable for everyone.

We are starting to realize that we are actually going to have a baby and we are getting more prepared for that. There's even a cradle in our room - how strange is that? We are pretty pumped about it, but there are times when all we can do is laugh about the amount of unknowns and question marks floating around in the very near future. It's funny, right? Laughing is the only thing to do, right?

There's room for a baby in there somewhere

We have made progress on getting what we need to comprehend and deal with the next step. We have a new oncologist whom Mark and I are both really excited about, our counsellor at the BCCA has remained a huge support and advocate for us, we are connected with a radiologist who is known to be very skilled and at the top of the game, and then of course there is Dr. Joseph who is like a guardian angel for us. Having an oncologist, with 30 years experience, call you at home at 10 in the evening just to make sure you are feeling o.k., and then inviting you to his house for tea and a meeting to make sure any questions or worries are settled sure makes us feel incredibly lucky and well looked after. Did I mention the furnished comfortable apartment we are renting belongs to Dr. Joseph and his lovely wife Fiona too? Amazing. We will be getting more details on the radiation and the schedule for the upcoming weeks on Monday or Tuesday this week. We will keep you posted.

My best bud Sarah has been here with us for the past week and while challenging for her I am sure, it has been a real treat for both Mark and I to have her with us. She is laid back, open and compassionate and is super easy for both of us to be around. Plus as I type right now, she is making us an apple pie.

If baking cures cancer (which I suspect it might) then we are miles ahead after Sarah's visit.

Finally, this week has been filled with many emails and posts of support and encouragement and it has boosted us in a way that can't be described. It is amazing to feel that web of support and it is growing to places we did not know. We have heard from old friends, friends of friends and friends of relatives and we are genuinely touched that people are following our story and let us know they are thinking of us. Thank you.

Yay friends (and family too).

A left turn. . .

  Well it's been quite a week. Our visit to Whitehorse wasn't quite as expected. We arrived home on Tuesday night, and on Wednesday morning, I had some symptoms that put me in the hospital until Friday afternoon. We flew back to Vancouver on Saturday. Since our arrival back here, our world has once again been turned upside down. I had a contrast dye MRI on Monday that doctors were hoping to use to monitor the progress of my treatment. We checked back into the BCCA for my sixth round of treatment yesterday (Tuesday), and after much waiting, miscommunications from doctors, and confusion, we learned that based on my latest MRI, the oncologists have decided to switch tacks and my treatment focus. The latest scan shows that the major tumour that was operated on in August has in fact now grown in size and is proving to be resistant to the Methotrexate Chemotherapy. As far as they can tell, the rest of my lesions/tumours have disappeared, and have most likely entirely succumbed to the chemo. That is not to say that there may not be a few lymphoma cells remaining scattered throughout my brain.
  The next step, then, involves stopping my chemo regime entirely, and starting intensive low-dose radiation therapy focusing on my entire brain, with the goal of killing of the rest of the largest lesion and any other remaining cells. The best case scenario is that this treatment will start soon, last a short time (likely 5 short appointments a week for 2-3 weeks), cure the cancer forever, leave me feeling relatively OK, and include no long-term side-effects. There are probabilities of all of these good things happening, but again, based on my age, general health, and basic differences from most CNS lymphoma patients, it's hard to make any predictions on what those probabilities are. Lymphoma apparently generally reacts well to radiotherapy, but of course because of the nature and location of the disease in my body, there are also distinct possibilities that A) the disease could resurface within the next 2 years, and B) that radiating my brain could cause long-term side effects such as concentration/memory problems, etc (these would likely show up in the next 2 years also).
  All this is not good news, but really, probably the reality that we've been avoiding mentally for some time. The fact is that this disease will be with us for some time, and we just need to keep our chins up and keep fighting. It's a bit tough for us right now because we don't really have a life to hold on to: our move back to Whitehorse was sort of a new beginning, but at the moment, we're in a bit of limbo. Our lives are scattered from the Yukon to BC to Ontario, and it sort of feels like we've got nowhere to really call home at the moment. The only place that does feel that way right now exists within all of you. It's been so great to keep hearing from all of you so continuously, and if I could make one request, it's that you take a brief minute to let us know that you're still helping us smash through this mess. It's amazing the power that we feel from a quick blog comment or email. All those hands around us sure make us feel strong. Another source of strength is the continued growth of the newest member of team Smash, and Meg and the baby are holding up really well. We're starting to make more concrete plans in terms of the baby's arrival, and we've got several appointments over the next few weeks to help us prepare for that exciting time.
  Our next few days will help us set our sights on the next turn in this road. We've got a Young Adults Cancer Network group support meeting tonight, an appointment with our counsellor at the BCCA on Thursday, and a meeting with Dr. Joseph Ragaz, our oncologist/guardian angel on Friday. The planning for my radiation therapy should be complete by next week, and we should know a lot more about what that will look like soon. We'll keep you posted.
  Finally, we've also recently learned about a benefit/fundraiser being put on in Toronto by family and old friends on December 5. If you're at all interested, you can check out the event website at http://www.moderncommunications.ca/smashatoa/. It should be a night of great music, good times, t-shirt sales, silent auction items, and plenty of smashy vibes. We hope everyone is doing well. We're still going to beat this thing. It's just going to take a couple of days to shift gears mentally and get ready for the next stage. We'll see you down the road.

Some sense of home: A walk by the Yukon River

  

Dearest Carl - we miss you buddy

     

'Horseward Bound

   Looks like both Meg and I were up in the night, but at different times. So you get a double post today:

   A brief update - round five is now history as we were discharged yesterday afternoon. A tougher round than some, but we got through it alright. Vancouver apparently loves its fireworks on halloween, and we got a great view from the rooftop patio at night. We're headed to Whitehorse today for a last visit while doctors will still let Meg fly. We now have a cradle in our apartment, and it's mind-boggling to think that before the year is out, we'll have brand new person in our lives who will occupy that now-quiet, now-empty space. Meg is doing great, and her energy and strength amaze me every day. Our visit home will be brief, and we plan on laying low for most of it. We'd like to spend some time at our house, take the dog for a few walks, and recoup after this past week. Winter has apparently now hit Whitehorse with temperatures in the minus double digits and a good foot of snow already on the ground. It will be nice to get a bit of winter in before returning here to balmy, wet Vancouver.
  Treatment goes on as treatments will. Our oncologist, who was due to have a baby about two weeks before Meg, decided to welcome her new son a little early, so we're now in a bit of limbo waiting to be reassigned to someone else. Again, my care is based on a team approach, so this bit of news shouldn't significantly affect how things proceed from here on in, but it's still a change that we'll have to get used to. I'm scheduled for another MRI in about a week, and that one should let us know quite clearly how things are going. My brother Shawn was here for all of last week, and like the rest of our visitors, was a big help fetching food, and keeping us entertained.
  I've been trying to catch up on some emails over the past couple of days, and my apologies if I haven't gotten to you yet. Some days are easier than others. OK - thanks for keeping in touch, and for your continued support.

Round five - check

Hi Everyone
Just a quickie to let you know that round five is now complete. Not the best one, not the worst either. Fairly un-noteworthy which I'll take at this point. Mark started feeling better on Friday night and we spent the weekend reading, watching movies and waiting for the green light to head home on Monday. This morning we are headed to our real home (Whitehorse) where a fresh foot of snow awaits us. The plan is to have no plans and to do our best to rest as much as possible.
We will be 'off-line' up there, but will post a full update once we return on Saturday. ** For those wondering but too embarrassed to ask, the Yukon is certainly 'on-line', we just don't have internet at our house right now. So have a nice week and we promise to do the same!
Since I like blogs with pictures, I thought I would post these oldies but goodies.

One of Mark's favourites.

One of my favourites.