This is what freedom from fear looks like. . .

We're Back

After an all too brief side trip to Whitehorse, we are back at the BC Cancer Agency getting all chemoed up again. The blog laid dormant for a while (or benign as we refer to things nowadays) because we were without internet and too busy enjoying the fall to be typing anyhow. Mark was able to escape to the bush for a few days which was likely more healing than any of the tablets and liquids he is taking here. Sounds like a good time was had by Mark and his three male nurses/hunting partners, I will let him write his own update on that. (Fear not, the moose survived).

Medically, things have been plugging along. I think I mentioned that Mark's kidneys were having a difficult time last round and that continues to be a factor. He had his levels tested up in Whitehorse and they still hadn't dropped they way they were 'supposed to' - in fact they went up quite a bit. He stayed overnight at the Whitehorse hospital for one night to get some more hydration in him. When his levels were tested this morning they were still not as low as they were at the start of last treatment. This means they adjust the dose of the chemotherapy accordingly. Sounds like it is not too major a change - 10% if that means anything to any of you.
Also, Mark had a CT scan yesterday to check in on the progress of his tumours. Again, because of the kidneys they were not able to use the contrast dye which gives a much clearer picture. Our doctor said the scans showed one lesion was gone one had shrunk a bit and one looked about the same. There are more then three in there, so obviously this is not a full report. She said the images were not great and so she ordered an MRI to get a better idea of what is going on inside that pretty little head. In a flury of excitement, there was a time slot immediatley available this afternoon. Mark was in the hospital gown and ready to go in no time... and then the test was cancelled because it would interfere with his chemo schedule. Both fortunately and unfortunately, this news did not come before he had slipped the Ativan under his tounge to help him relax during the MRI (which was eloquently described by one of Mark's good friends - hi Neil - as being locked in a small chamber with a bunch of toddlers with pots and pans). So Mark is currently enjoying some mini impairment which has been missing in his life this past six weeks. Not quite as good as a few cold pints, but he takes what he can gets, and sure seems pretty happy right now.

I had a good time in Whitehorse. It was a bit tough emotionally to be back so temporarily, but worth it. The cat couldn't care less about my being there, she is normal like that. Carl on the other hand was more than excited. In a weird 'my dog is a human' kind of way, I kind of think he gets it. He was sweet and lovely and super excited every time we came home, and he didn't become his usual stressed self when were were packing to leave again. I think it helps that he is being very well taken care of at Deb and Pete's and that he has become pretty accustomed to big changes.

The Sandiford/Higgins gang in all their Smash It glory.

When we returned we were greeted at the airport by Mark's parents (sporting some fashionable SMASH IT t-shirts) and ... my dad. My folks ended up staying down in Vancouver until yesterday on a bit of a mini holiday/recovery from working so hard getting our life organized down here. Thought I would include a photo of our previously empty freezer, post 'mom was here'.

Not too sure if you can make this out - this is what Ma has stored in the freezer.

It's three layers deep - and I haven't even had the baby yet.

Mark's folks will be here for the next ten days which is great. How lucky we are to have such great family - and friends.
That's all I got for now, Mark had the camera with him, so I didn't get too many photos in Whitehorse. Thought I would throw in this picture I took when we were here last. We found it on Mark's bedside table after one of our exercise circuts and it made me laugh.


Have a great day everyone - stay tuned!

My First Attempt at blogging

Hi Blog Readers - here is entry 1 from Meghan.
Things are progressing slowly but surely around here these days. Round two of chemo has proven to be a bit more challenging than round one. The doctors are working diligently to try to figure out what is going on - it seems Mark's kidneys are much less happy this go around than last. It sounds like it could be a one off, and that we 'should not necessarily expect this the next time'. Our oncologist is not taking any chances on anything and has been really great about sending in specialists and double and triple checking everything. There was even talk of a midnight email from her to the nursing staff. It needs to be said once again, that the care we are receiving has been amazing. It feels pretty lucky to have Mark's health be our main concern, not the competency or thoroughness of our medical team.

"the cocktail" choking all of these down several times a day can be challenging.

Mark is doing pretty well. His perspective and attitude impresses me everyday. He has been feeling a bit rough this week, it is actually the first time he has felt 'sick' since this adventure began. He is feeling better today, and is back to making fun of me which brings comfort and normalcy. Rest assured I continue to harass him every chance I get.
I have been doing my best at poking and prodding Mark to make sure he is eating and exercising a lot. We have a great work out program we have designed where I push his IV pole so we can get some pace going and walk in circles on the balcony like lunatics doing arm and leg exercises. We also stop to stretch regularly. Here's a photo courtesy of my mom.

We are going faster than it looks here - I swear

My folks have been here for the past week and have been a great help. They have been cooking and cleaning like mad. My dad even did a full english breakfast and brought it to Mark yesterday morning.

The Full English

Note the blood pudding, not recommended in every cancer cookbook one reads.
I am doing well, I have a great appetite and am sleeping like the baby growing inside of me. My belly is protruding nicely, it is a pleasant advancement to have strangers now comfortably commenting on my being pregnant, rather than looking with uncertainty as was the case a short two weeks ago. The "I don't think she is just fat" face is a very specific look I gratefully haven't encountered before this.

"Oh my - doesn't her hand look big"

In a perfect world, we would have left the hospital on Friday and headed up to Whitehorse on Sunday. Because Mark's levels are not dropping on the curve they need to be, we are staying in hospital until Monday and then (hopefully) heading up late Monday night. We are pumped to head up North, to reunite with our friends, see the fall, unpack and repack and mostly, to hang with 'the Carl' and Kitty. It's crazy how much we miss the animals - you should see us when we pass a dog on the street - what would be endearing and understandable to those who know us is creepy and uncomfortable to the poor owners trying to go for a walk. Mark is still planning to head out to the bush with his friends to look for some moose, and mostly just to be out there. Fingers crossed we will be out of here on Monday.

Here's Carl and Kitty, I tried to get a bit fancy with formatting and it has backfired. Mark (my tech advisor) is asleep so I am going to let this error slide. Apologies.

Mark wrote a nice letter to the editor that I thought some of you may be interested in reading so I will sign off with it. We will keep the updates coming. Much love and thanks to all of you checking in. The power of all your positive thoughts and well wishes is tangible out here... we love it and we know it is a vital ingredient of the smashing.


Dear Yukon. . . I'm not sure that a few words on paper can adequately express the gratitude, love, and humility that the past few weeks have drawn out in us. Ours is an unfortunate situation: at a pivotal and exciting time in our lives, a disease that affects so many entered into our consciousness and being and decided to wreak a little havoc. My wife Meghan and I were days away from a new beginning: at 6 months pregnant, the ink on a mortgage on a pretty little house in Riverdale not yet dry, and our future looking bright and beautiful and everything we wanted it to be, a brain tumour reared its ugly little head and put on the brakes. The last month has been filled with fear, anxiety and unknowns. Paradoxically, unbelievably, beautifully, it has also been filled with unparallelled generosity, selflessness, and a sense of belonging that is rare in this world. Family, friends, and co-workers have rallied around us in a raucous and loving web that will not let us fail on the path that lies ahead. Emotionally, spiritually, financially, our community has built a shelter for us in an unexpected storm. In doing so, they've demonstrated what it means to be Yukoners and confirmed for us our home here. In a place where so many live far from family, neighbours and acquaintances take on roles that are otherwise reserved for blood. From monetary donations to words and thoughts of support to logistical tasks, many of you reading this have offered us something at a time of real need, expecting nothing in return except our success in overcoming this obstacle. All we can say is thank you. And we will overcome it. With so much spirit around us, there is just no way we can go wrong. There are too many individuals that need to be thanked personally to list here, but to all of you that have put special efforts into organizing events, taken care of our Whitehorse lives, and offered particularly generous means of support: know that you have made an impact on us that we will never forget and that because of you we will never look at the world in the same way again. It's a far more giving place than we ever imagined. With all of our gratitude and love, Mark and Meghan Callan

Much Love to you all!

K K Kerrific

Hi everyone. I'm currently undergoing my second round of chemo at the BCCA and it looks like the honeymoon's over: basically I feel like I've got a  hangover, and am feeling pretty tired most of the time. It could be worse. I met with my oncologist Dr. Kerry Savage this morning, and she's confident that this treatment is the right one for my situation. She's ordered a CT scan for next Monday to determine what effect the chemo is having on my remaining tumours. Fingers crossed for that one. Amazingly enough, though, this chemo treatment has not been the main event of our week. Meghan and I learned last week of a fundraising event being held at the Kopper King tavern in Whitehorse. The event took place on Sunday thanks to much organization, donation of silent auction items, and community spirit. In a yet again humbling and overwhelming turn of events, the night raised close to $7000 for Meghan and I. We really don't know what to say in response to this outpouring of support except thank you. Our world has been turned upside down over the past month, and it seems like everyone around us is doing their best to right it again. Some special thanks need to go out to the following people at Environment Yukon who contributed special efforts to organizing this event and the aforementioned pie toss: Remy Rodden, Ronalane Anderson, Jennifer Imbeau, Shelagh Frotten, Lynne Frair, Carrie Eckholm, Rory Masters, Dennis Senger and Koko Obermair. To put things in perspective, these events were put together almost exclusively by Environment Yukon staff, a group of people who didn't know me from Adam a short three months ago.
Several musicians entertained the crowd, and they should be recognized here as well. Thanks to: Remy Rodden and Bob Kuiper, Almost Four (Ray Tucker, Steve Gedrose, Duncan Sinclair), Elsabe Kloppers and Christian Lesage, Grant Simpson, Erica Heyligers, Marg Tatam, and Rob Bergman, The Bergman Family Band (Bruce, Debbie, Rob Bergman, and Marg Tatam), The Dave Haddock Jam Band (Dave Haddock, Bruce Bergman, Grant Simpson, Andrea McColeman, and Rob Bergman), Dolly Varden and the Daredevils (Katya McQueen, Sara Hamilton, Bob Hamilton, Patty Hamilton, and Matt King), Come Eat a Cat (Graeme Poile, Ben Barrett-Forrest, Fabian Brook, Patty Hamilton), Done Gone String Band (Anne-Louise Genest, Bob Hamilton, Matt King, Patty Hamilton, Sara Hamilton). Thanks also to Steve Hare of FourMusic for providing the sound system.
I wish we had a list of everyone who donated silent auction items, those who bid on them, and everyone who attended. From reports, it sounded like it was a fantastic time, and that the music was great. I wish we could have been there (in all our weepy glory). I've included some photos below.
We're now playing the waiting game for my Methotrexate levels to drop enough for me to go home. We can't wait to get up to Whitehorse. The plan is to fly out on Sunday and return to Vancouver the following Sunday. It'll be a whirlwind trip, but we hope to settle into the house a bit and visit some old haunts. And it sounds like the moose hunt is a go! It'll be great to get into the bush for a few days with some old friends. Thanks again for all of your continued messages of support - they mean a lot to us.

Some Necessary Gratitude

We've received a lot of encouragement and support for our positive attitude over the past little while. Thanks. It's been great. If you want to talk attitude though, I think the award goes to the Yukon's Department of Environment. These people are amazing. Over the past couple of weeks, they have raised a staggering amount of money from both inside and outside the ranks of the Department, all to support Meghan and I. Some of this came from "passing the hat", and some of it came from a "Pie the Bosses" event held last week where management staff literally took it in the face in support of our situation. I've posted some photos below. The rallying of the community around us has become a local news story in Whitehorse, and has graced the front page of both the Whitehorse Star and the Yukon News last week, in addition to a short feature on CBC Radio (check back next week for a link).

 

   

Remy Rodden (in the hat) warming up the crowd. . . 

While it's always been a difficult decision to move and settle far away from the places where Meghan and I grew up, I think many of you might understand the draw of a place where the people you work with, some of whom you've only met cursorily or have maybe not even met yet, come to you in your time of need because you are a member of their community, one of their extended family. It's comforting to live in a place where people still look out for one another, a place where you know you'll never fall down if the people around you can help it.

It's recently come to our attention that the Department and the Community isn't done yet. There is an event planned for this Sunday at a pub that Meg and I frequent often that is once again in support of our situation. A silent auction is planned to sell off donated items and services, and a cover charge will be charged for admission. Musicians, including my summer supervisor Remy Rodden (who has had an integral hand in planning many of these events) will play for most of the evening.

On the other side of the country, efforts have come together to organize a campaign of support that has included the creation and distribution of 1000 beautifully camouflaged "SMASH IT" bracelets that friends and family are using to be with us even as they are far away. And it's working. Meghan's parents arrived in Vancouver two days ago, and putting our own bracelets on, we certainly felt those hands around us, stronger than ever. They also brought with them another unbelievable amount of financial support from an incredible variety of people.

Perhaps the greatest testament to the selflessness and beauty of these events is that we're not even sure who to thank by name (yet). Individuals have risen to organize and make these things happen, but somehow, we've remained in the dark as to who they are. We'll find you. Oh yes we will.

We are visiting with friends and family this weekend, and we'll be at the Kopper King Tavern in spirit on Sunday. I'm still feeling good, and will check into the BC Cancer Agency again on Tuesday to begin my second treatment. We met with a doctor at an agency called Inspire Health this week who offered invaluable advice on nutrition, alternative therapies, and general mind-body health. Inspire is a world leader in what they call "Integrative Cancer Care". Again, we feel incredibly lucky to be in Vancouver. It seems like every week, we build another step on our path to smashing this thing.

To all of you: thank you, thank you, thank you. We'd be nowhere without you.  

In Between Days

I was discharged from the BCCA on Sunday, and Meg and I have been settling in back at the apartment. My brother Mike returned to Africa on Monday, and for the first time, we're on our own, but only for a couple of days. Meg's parents arrive on Thursday, and it will be nice to reconnect with them over the next week and a half or so. Several friends are also passing through Vancouver over the next little while. Below I've outlined my chemo as it took place this round. It's a highly medical process, and I thought it might be interesting for those who (thankfully) have no experience with it. On the whole, I think my protocol is relatively easy on me. There were many more difficult stories surrounding us at the BCCA, and again, we have to consider ourselves lucky in many many ways. This is what round one of chemo looked like:

Tuesday.
8:30 - Arrive at BC Cancer Agency to check in. Opthamological exam at vision centre down the road. Six vials of blood taken from my right arm on 3rd floor. Circumferential jaw X-Ray and Chest X-Ray in imaging. Meds as since surgery. Appointment with dental hygienist on 2nd floor to clean teeth - precautionary measure to prevent mouth sores common with this treatment. Prescribed Bicarbonate and Chlorhexidine mouth rinses for use after each meal.

Wednesday
7:30 - A lab technician wakes me up and takes three vials of blood from my right arm.
8:00 - Continue regime of 2 mg of Dexamethasone Corticosteroids to reduce swelling in my brain and 150 mg of Ranitidine to calm my stomach from the Dexamethasone.
9:00 - Spinal Tap in my room on 5th floor by two resident oncologists.Uncomfortable, but not terrible. Atavan to calm my nerves.
9:30 - 4 hours of Sodium Bicarbonate IV to increase the alkalinity of my body in preparation for High-Dosage Methotrexate Chemotherapy. Following this, six 50 mg "Bicarb" pills (literally baking soda tablets) every four hours to maintain body alkalinity. Urinate in a bottle, record volume, and test pH for nurses each time.
13:30 - 8 mg of Ondansetron (an anti-nauseant) and 4 hours of Methotrexate via IV - a chemical that can penetrate the "blood-brain barrier" and target cancer cells. Continue montioring urination and taking Bicarb pills. Need to take them with milk each time to get them down.
17:30 - Back on Sodium Bicarbonate IV to maintain hydration, good kidney function, and alkalinity. 10 mg of Prochlorperazine (more anti-nauseants). I pass over 5 litres of urine in the night and measure pH each time, waking up every 90 minutes or so.

Thursday
7:30 - a lab technician wakes me up and takes three vials of blood from my right arm.
8:00 - Breakfast: hot cereal, cold coffee, two steaming pieces of toast, and a boiled egg. More if I want it. Also, meds: Deximethasone, Ranitidine, and 200 mg of Carbamazepine as an anti-seizure precautionary. 25 mg of Leucovorin in 5 tablets to "rescue" the Methotrexate Chemotherapy from my healthy cells. 14 tablets in total.
9:00 - Bone Marrow Biopsy taken from my left hip. More Atavan. Hurts like hell for a half second.
Saline hydration IV for most of day, and continue with Leucovorin rescue and Bicarb tablets.
Nurse wakes me at 12:00, 2:00am, and 4:00am for meds. Up in between to urinate.

Friday
7:30 - a lab technician wakes me up and takes three vials of blood from my right arm.
9:30 - 4 hours on Rituximab IV - antibodies made of a chimeric combination of human and mouse DNA that costs $2000/500ml in the private system - not particularly good at penetrating the blood-brain barrier, but definitively effective against large B-Cell type lymphoma. Take 2 Benadryl and 2 Tylenol before the IV pump is switched on because of potential in all patients for allergic reaction. Nurse begins with slow administration of drug, and watches me for the first half hour before leaving, returning half an hour later, turning up the dosage, and repeating this sequence three times. The Benadryl makes me feel awful. Continue with 6 Bicarb pills, 5 Leucovorin tablets, Deximethasone, Ranitidine, Carbamazepine, mouth rinses, and monitoring urine. Nurse wakes me at 12:00, 2:00, and 4:00 for meds. Up in between to urinate.

Saturday
7:30 - a lab technician wakes me up and takes three vials of blood from my right arm. Continue with 6 Bicarb pills, 5 Leucovorin tablets, Deximethasone, Ranitidine, Carbamazepine, mouth rinses, and monitoring urine.
12:00 - Resident oncologist informs me that the Methotrexate levels in my blood are still too high to send me home.
22:00 - Watch movie.

Sunday
7:30 - a lab technician wakes me up and takes three vials of blood from my right arm. Continue with 6 Bicarb pills, 5 Leucovorin tablets, Deximethasone, Ranitidine, Carbamazepine, mouth rinses, and monitoring urine.
10:30 - nurse informs me that my Methotrexate levels are at .04 - safe enough to send me home as long as I continue the Leucovorin rescue for three more doses. Will continue Dexamethasone, Ranitidine, mouth rinses, and Carbamazepine in between treatments. I check in again next Tuesday. . .

Chemo 'N Me

Meg and I are currently installed in room 536 at the BC Cancer Agency, and all is going well. I was the subject of a battery of tests upon arriving here that were mainly designed to make sure that the lymphoma is residing only in my brain. My eyes received an all-clear examination from an opthamologist, I was the lucky recipient of a clear report on a (not so-unpleasant) spinal tap, and we're waiting to hear the results from a (more-so unpleasant) bone marrow biopsy, but they don't expect to find anything there either. They've also taken litres of blood from me, xrays, dentistry, and various other bodily products. Despite all of this, my stay here has been great. The facility and staff here are truly world class, and again, I am receiving top quality care. My room looks out over a landscaped rooftop patio and is adjacent to a family lounge complete with television and computer, board games, piano, and comfortable furniture. The rooms are shared, but I've been lucky enough to have mine to myself for the majority of my stay. Meghan and other visitors are welcome to 

come and go as they please, and Meg has been staying here with me quite comfortably. 

Meg and I on the rooftop patio 

This is what my chemo regime looks like: After arriving, they hook me up to a pre-hydration IV which is designed to get my kidneys running well and bring the alkalinity of my system up. My body needs to maintain a pH of 7.5 for the chemicals that they use to work. After 4 hours of this, they hook me up to a high dosage of "Golden Goodness" (Methotrexate). This drug is the main smasher of my chemotherapy. It is effective in crossing the "blood brain barrier" which prevents most drugs from being able to target brain tissues. It targets cells which multiply quickly (like cancer cells). I get the gold for four hours, and then it's post-hydration for 20 hours, continuing with the maintenance of alkalinity of my system. Throughout, I get preventative anti-nauseants. After the 20 hours of post-hydration, I get several doses of a "rescue" chemical through IV called Leucovorin which binds to the Methotrexate and helps me get it out of my system. They monitor the Methotrexate in my blood, and when it's down to an acceptable level, then I'm done. I am also receiving a #2 punch today in the form of a drug called Rituximab. This drug is less effective in crossing the "blood brain barrier", but has still proven valuable in treatments, and has minimal side effects for most people. So I'll be double fisting it today, and if my Methotrexate levels are good, should be out of here tomorrow!

 My nurse Jodi hooking up the golden goodness. . .

My body seems to be handling the chemo very well so far. Truth be told, I feel fine. I've had no nausea, my appetite is good, and my spirits are great. I've been told that I may lose hair as time goes by, that fatigue will be an issue, and that I may get some mouth pain/sores, but for the moment, all is well.

 

SMASH it!

Meg and I can't thank you all enough for the continued love and support. We really appreciate all of the emails, phone calls, blog comments, prayers, care packages, and positive energy. The outpouring of energy has been truly overwhelming, and we hope to get back to each one of you in our own way over time. I must acknowledge here the contributions of some specific people over the past few weeks. While so many people have helped Meghan, myself, and our families out, I need to point out the contributions that Deb Higgins, Brianna McGuire, Mike Callan, and Liz Pelton have made.

Deb has been our communications wizard and our lifeline to Whitehorse. Deb and her partner Pete are busy individuals with a 3 year old and crawling infant who have taken on our cat Kitty and (high-maintenance) dog Carl. They also spearheaded the creation of this blog, and have been invaluable emotional and logistical supports. 

Darling Deb

Meghan's sister Brianna is currently 7 months pregnant and works full-time as an Occupational Therapist in Ontario. She flew here to Vancouver and stayed with us during some of our most stressful times before, during, and after surgery. Brianna has two kids that her husband Graham was left to care for during this time, and while she was here, Brianna was like an external brain to us: she dealt with paperwork, medical research, doctors, massage, coffees, job issues, house issues, and basically knew exactly what we needed before we did. She's an amazing woman, and I don't know what we would have done without her.

Saint Brianna

My brother Mike currently works with the Canadian International Development Agency and lives in Khartoum, Sudan with his partner Liz. Both Mike and Liz flew to Vancouver before my surgery, and have been here ever since. It was hard to have to see Liz leave yesterday, but Mike will be here until early next week. This team has really taken care of us over the past little while. They've been invaluable in helping set up our apartment, facilitating our continued medical needs, nurturing our souls, and providing moments of lightness.

Team Mike and Liz

Of course, countless others have offered supports in various ways, and our love goes out to all of you. The light that surrounds us is beautiful. In other news, my most current oncologist is actually encouraging me to get out and do the things I love, and has given me the blessing to participate in a short hunting trip during our time in the Yukon in a couple of weeks. Please keep your fingers crossed for me that I'm feeling up to it! We'll keep you posted. . .

Hi all,

Mark and Meghan are now at the BC Cancer Agency to begin Mark's first round of chemo treatment. Yesterday Mark underwent a series of tests and preparations for his body to receive the chemotherapy. The tests included an opthalmology exam, which was all clear, and a lumbar puncture to test his cerebrospinal fluid which they'll get the results of later, but don't expect to find anything. They will also do a bone marrow test tomorrow - quite a painful test by the sounds of it. The doctors want to perform these tests to rule out cancers in other areas. The doctor they met with yesterday emphasized that Mark's profile is so rare the usual statistics with this type of cancer don't really apply to his case. The fact that he is young and healthy play strongly in his favour to beat this thing.

The chemo treatment itself started this afternoon. It consists of a chemo drip for four hours, followed by 20 hours of the drug circulating in his system. Then he'll have another 4 hour drip of a'clean-up' drug that goes in to round up and get rid of the active chemo drug. Sorry I can't be more specific about this, but it gives you an idea. He'll stay in until saturday to make sure he's recovering well from the chemo. The side-effects they can expect (over the long term) include some hair loss, and inflammation of the mouth and GI tract. Nausea is also a side effect, though the anti-nausea drugs for chemotherapy are apparently quite good at getting this under control.

Meghan is able to stay there with Mark in his room during the treatment and recovery. They've both said that the doctors and nurses there have been fantastic, and they're receiving excellent care. There's a patio there, and a family lounge, and they have their computer there to receive emails - Mark even said he may try to do a blog update in the next little while, so stay tuned!

In the meantime... let's all keep sending all the LOVE and SMASHY vibes possible! The smashing has begun!!