Superfluous Matter
Mike's TED Talk and Michelle's Book

I want to quickly publicize a couple neat things. First, my good friend Mike recently gave a TED talk at TEDxIB@York. The talk is about the power of enthusiasm and communicates a great message on how your outlook can shape the world around you. It's been posted on YouTube and everyone should go watch it. Mike was also kind enough to dedicate the talk to Kim (check out 17:59) which really meant a lot to me.

The second thing is from Kim's sister Michelle. She has put together a compilation of writings from various people (including this blog) detailing all the stuff that happened in Kim's year dealing with cancer. I haven't seen it yet myself, but if you're interested, the book "Strong in the Face of Adversity" is available for purchase at cost from Lulu, a self-publishing website.

How I Feel

A lot of people ask how I'm doing. I generally say "OK" or grunt noncommittally. I'm not really OK ever at all, but it's normally too tiring to get into it. That doesn't mean people shouldn't ask or that I don't want to talk about it. Just that their timing is normally wrong.

I've come across a community on the Internet for young widows/widowers (a word I am soooooo not comfortable with) and one of the more active members wrote a very good description of what many people in my situation feel. I figured rather than ramble on myself I'd just repost it below. I agree with basically all of it.

Unique and Devastating Loss

With the death of our spouse, we grieve the loss of so much more than someone we merely loved or were close to, like a parent, grandparent, sibling, friend or pet. We grieve instead the loss of: The one we loved most deeply, cherished and felt the very closest to. The one we swore commitment to in that unique human bond of marriage, which many consider sacred. The one we shared the ultimate partnership with to live as one and perhaps bear children with. The one who embodied our true sense of home. The one who was our best friend and who was to be our companion for life. The one we confided in, depended on and trusted most. The one who really knew, understood and accepted us as we were. The one we felt safe and protected with. The one we shared private moments and intimate feelings with. The one we mated souls with.

But it is not just that this most precious person has been torn from our life, as unbearably heartbreaking as that alone is. With the death of our spouse, and only of our spouse, many additional profound losses must be grieved as well. For we also suffer: The loss of who we ourselves were while with them. The loss of the couple we were once half of. The loss of the life partnership we once formed. The loss of the husband or wife role we once embraced. The loss of the life we once lived. The loss of the plans we once made. The loss of the dreams we once shared. The loss of the future we once envisioned.

Amidst all this, we are also suddenly confronted with many hardships we never expected to face at this point in our life. Besides financial survival, increased domestic burdens and perhaps single parenting, additional challenges less apparent to others but all too real and terrifying to us. We must now find it within ourselves: To create a new identity. To redefine our role in life. To establish a new connection to the world. To build a new network of social relationships. To discover a new sense of purpose. To formulate a new set of goals. To decide on a new direction for our future.

And we must accomplish these without dishonoring our former life, but while suppressing bittersweet memories of that life, so that they not hold us back. Memories of happier times mostly, but also those of our spouse's death, either sudden and shocking or after prolonged illness. We must further endure the feelings of guilt and disloyalty that follow us as we attempt to forget and move forward, but with our heartstrings tied so tightly to the past.

And all these tasks must be taken on at the lowest possible point of our life in the worst state imaginable. When we are the weakest, most vulnerable, most insecure, most isolated, most heartbroken and most emotionally exhausted we have ever been. Without that one person we long ago became accustomed to relying on to help get us through life's greatest challenges. The one who, just by being there, would have provided us emotional comfort and moral support to draw upon, as well as the strength and confidence we need to complete those tasks and so much more. But now we face all this alone.

Profound indeed is the death of our spouse. Unique and devastating. For nearly all of us, much more catastrophic to our life than the loss of any other. And truly comparable, many of us widows and widowers often feel, to one other death only. Ours.


I just wanted to say thank you to the hundreds and hundreds of people who came out to either the visitation or the funeral to express their condolences. It really means a lot. The video from the funeral is available online.

Not sure if I'll blog much more for a while so for now I'll leave any readers with some of my favourite photos of Kim. Click on any photo for the full resolution version, suitable for printing.

At Peace

Last night, September 21st around 7:15pm, my wife and best friend gently passed away while I sat by her side. Words cannot express how much I loved her; Kim was beautiful, selfless, and brave. She made me laugh and any time I spent with her was time I cherished. People talk about a hole in your heart when a loved one dies. For me the hole seems to be located just in front of my body, where she would fit so perfectly when we hugged. It's just so empty now.

Services will be held at Haskett's Funeral Home in Lucan, Ontario. Visitation Friday, funeral Saturday. Please contact the funeral home for more details.

In lieu of flowers, Kim requested that donations be made to the Canadian Cancer Society or the Oncology Department at St. Michael's Hospital in Toronto. As an alternative, she requested that you can also take the time to give blood.

The obituary has been posted.

My wife and best friend, Kim
My wife and best friend, Kim

Kim has not been doing so well in the last few days. She's having trouble with lots of different things and the doctor does not expect she'll be able to leave the hospital again or that there is very much time left. We are out of treatment options and untreated the cancer is moving very quickly.

Kim has asked me to communicate her love to everyone, but requests at this time that no one come to visit or try to call her. She is not up to seeing visitors beyond myself and her immediate family. Please understand, she has enough to deal with at the moment without having to try to hold polite conversations with any arbitrary person. Kim is also not really replying to email/Facebook at the moment.

If you would like to pass a message or something on to her, contact myself and I will try to take care of it. Some of her former coworkers made an album of silly pictures of themselves for her and she was definitely amused.

Kim is getting excellent care here in the hospital. Many of the nurses have become like friends and they are upset too.

Thanks to everyone who has helped out in little ways over the past couple weeks and those who may yet help out in the future.


Just a quick update. Kim is still in the hospital. They've determined that the cause of the fever is not an infection but instead a symptom of the continued growth and progression of the cancer. The DHAP and Methotrexate only slowed the growth temporarily. As with all the other treatments we've tried the cancer has adapted and is no longer responding to the drugs. The doctor suspects that the cancer has moved into Kim's bone marrow but we won't be doing any tests for that since it doesn't make a difference to treatment either way.

At this point we are switching to a palliative approach. The idea is no longer to target the cancer but instead to just try to treat the symptoms as they come up. For now that means trying to get the fevers under control. We're not sure when Kim can home yet.

The last couple weeks have been really hard. I find myself rarely knowing what to do.


Kim's fever is persisting so she is still in the hospital. Tylenol keeps it from being too bothersome, but it doesn't seem to want to go away. They've done many more blood tests looking for infection and have yet to find anything. Kim has only seen the on-call doctor thus far as her normal doctor is away for the long weekend, so I suspect we'll learn more tomorrow when her normal doctor returns.

Additionally Kim's hemoglobin was super low today so she had to get three units of blood. Pretty crazy but hopefully it should improve her energy levels. I spent the day with her at the hospital watching Doctor Who and Torchwood and had a yummy takeout supper from Amaya in the shiny new Eaton's Centre food court.

Anyone looking for an easy way to help out can go donate blood. It's amazing how much can be used during the treatment of cancer. Kim's been lucky so far and hasn't needed much, but some of the people she's met undergoing similar treatments need blood multiple times a week! Personally I always pictured trauma victims and surgery patients using donated blood but never thought of cancer patients. Apparently cancer patients are the biggest user of blood products.

Tomorrow I'll probably drag my big work laptop to the hospital and work from her room so that I can be there when the doctor comes to visit. Kim's sister is also around this week to sit with Kim while I sleep or whatever.

Recent Happenings

The last week or so has been pretty busy/crazy. Kim had a lumbar puncture last Friday and the procedure itself was more painful/crappy than usual. One of the possible side effects of lumbar punctures is extreme, migraine-style headaches due to leaking cerebro-spinal fluid when the hole from the puncture doesn't seal up properly right away. The CSF cushions the brain and even tiny imbalances can cause nasty headaches. Anyway, the difficult LP has caused Kim to have headaches ever since. Additionally she has been suffering low blood counts (platelets, hemoglobin and white blood cells) and had to have a couple platelet transfusions.

There is a procedure called a blood patch which can be used to fix the leak caused by the LP and make the headaches go away. However, for a variety of reasons, it isn't appropriate to pursue in Kim's case. The leak will resolve itself in time, we just have to wait.

Anyway, by Thursday it looked like we had figured out the right combination of medicine to manage the headache pain and Kim was feeling pretty good. Unfortunately on Friday night she started running a fever and we had to take her into the ER (anytime her temperature goes above 38C we have to take her in, just to be safe). By the time we got to the ER her temperature was already dropping as she had taken some Tylenol before we left. We stayed at the ER for eight hours while they monitored her and ran some tests to look for infection. Nothing was found so the sent us home.

After a long sleep we woke Saturday morning to find her temperature was back up and so we returned to the ER. Once again her temperature dropped as a result of Tylenol but this time they admitted Kim to watch her overnight. Her temperature predictably rose above 38C as night fell and the Tylenol wore off so they're keeping her while they run more extensive tests to try to figure out what's happening. Fortunately they can control the fever with Tylenol pretty easily so she's not too uncomfortable.

This week Kim is also scheduled to get a CT scan to check the progress of the DHAP treatment so hopefully we can still get that done. I'm pretty tired.


Kim came home yesterday and things have been going well. She'll probably get a lumbar puncture again next week, then some more scans and then we'll see what's next. The doctor continues to be pleased and impressed with how well Kim handles the chemotherapy treatments.

Today we made chili for supper which is always good and generates lots of yummy freezer leftovers.


Sorry for the lack of updates lately, nothing really conclusive has been happening. Kim's been getting her lumbar punctures and is pretty tired from it all but otherwise mostly OK. She's had some back pain again along with some neuropathy in her arms but the doctor prescribed some low dose morphine and that combined with a hot magic bag seems to be helping.

She had a CT scan last Friday to check the progress of the DHAP and it does appear to be working to reduce the size of the tumours in her lungs to some extent. So, she is going to be admitted to the hospital tomorrow to begin her second round.

This past weekend Kim and I went to John's house for Rib-o-rama XI and it was lots of fun. Great weather and great food and I had a chance to catch up with a few people I hadn't seen in a while. We also went to Chris and John's to play Ticket to Ride with them+Rob (although Kim had a nap instead).

All Done

Kim was released today from the hospital from her first round of DHAP. It went pretty well but she's really really tired. I suspect she'll sleep the next few days. Additionally she's getting two lumbar punctures a week to put chemotherapy directly into her spine. While she was in the hospital she got another MRI so we'll probably get some results from that this week.


Kim was admitted to the hospital today so that she can begin her first round of DHAP (dexamethasone, cytarabine, cisplatin). The spinal involvement isn't totally under control yet, but after three rounds of methotrexate the doctor wanted to get back to treating the cancer in the rest of her body for a while. They will do a second round of DHAP in three weeks and then some more scans to reassess the progress of the treatment.

DHAP is more likely to cause side-effects than any chemo Kim has had so far. However she's had almost no side-effects from any of the others and we're hopeful that trend will continue.

Last weekend we had a bit of fun and went to see the final Harry Potter movie. In order to avoid crowds and busy theatres we went to the "Varsity VIP" theatre near Bay and Bloor. The VIP theatre only seats about 40 people and the chairs are extra-comfy with lots of leg room and nice side tables for holding drinks and snacks. They also have food/drink service right to your seat! Of course it's more expensive but it was definitely worth it to make sure Kim was able to enjoy the movie.

Finally, some fun little stats. This is my 500th blog post and I've been blogging since January of 2003 (over 8.5 years). I've written just over 105,000 words which seems like a lot, but is really just the length of an average-sized novel (Stephen King's colossal yarn, "The Stand" is something like 450,000 words). If you add in my travel journals you get an extra 70,000 words (which is a lot more than I expected).


Last week Kim had another MRI and lumbar puncture to assess the progress of the current treatment protocol (high dose methotrexate). The MRI showed a significant reduction in the size of the tumours in Kim's spine, but the reduction is not yet "good enough" so Kim is back in the hospital now getting a third round of the treatment. The lumbar puncture also showed a bit of lymphoma in the CSF (despite the last test being clear), so the cancer is definitely still around.

Additionally, the MRI was another full nervous system MRI and it showed a small tumour (3mm) on the occipital lobe of Kim's brain. The original full nervous system MRI showed an indeterminate shadow in that spot so I didn't mention it before. The presence of a brain tumour does not change the treatment, and in fact they may be able to zap that one with radiation too when we get to that stage.

That's about all the news I have at the moment on the cancer stuff. Otherwise we've been keeping busy. Kim went to her cousin's birthday the other week and also got a chance to visit with some former co-workers. I competed in Warrior Dash (awesome!) last weekend in Barrie with a bunch of friends and I also went to Jeff's birthday party. This weekend is Keizo's wedding celebration pool party in Waterloo which I'll be going to as well. Finally I went out and bought a BBQ to attach to the natural gas pipe sticking out of our deck! I seasoned the cast iron grill last night so we should be able to use it this weekend! I love BBQ.

High Dose Methotrexate, Round Two

Tuesday Kim was admitted to the hospital for her second round of high dose methotrexate. It all went super smoothly, no problems or complications. After 24 hours of receiving the rescue drug the doctor pronounced her safe to leave and she was released Thursday night.

The doctor also mentioned that the last lumbar puncture showed no sign of cancer in the cerebrospinal fluid anymore which they will confirm with another lumbar puncture next week. They will also do another MRI and CT to see how big the spinal tumours still are. If the tumours are small enough they'll switch to a new type of chemotherapy to target the tumours in the rest of Kim's body. The chemo is called DHAP (dexamethasone, cytarabine, cisplatin) and it is the alternative regimen the Kim might have gotten when she originally entered the clinical trial back in April. The reason for the switch to this one is that it has some ability to cross the blood-brain barrier and so it should continue to work a bit on the remaining spinal tumours.

Although the doctor was happy to see that the CSF is now clear, she cautioned us again not to get our hopes up as they do not expect to be able to get rid of the spinal tumours entirely.

This weekend Kim's at her parents' house to visit with extended family and I'm staying in Toronto to catch up on a bunch of stuff and also just to chill out for a while.

New Plan

Yesterday Kim went in for another lumbar puncture and today we had an appointment with her doctor to discuss the plan going forward. The idea is for Kim to go in to the hospital every other week to receive high dose Methotrexate as an inpatient. They will also give her regular lumbar punctures to continue to infuse drugs directly into her spine as well as to monitor the levels of lymphoma floating in her cerebrospinal fluid.

If the levels of lymphoma eventually fall far enough they will do another MRI to check the size of the tumours in her spine. Assuming those have shrunk they will go back to trying to address the tumours elsewhere using a different chemotherapy protocol.

The biggest concern at the moment is the toxicity of the Methotrexate. The dose they give is large enough to be considered lethal and it is only the "rescue" drug (leucovorin), which they give 24 hours later that keeps Kim from succumbing to the effects. If complications start to arise due to the Methotrexate then they will have to stop giving that drug and come up with a new plan.

Tonight Kim was feeling pretty good so she and I went out for supper to our favourite pizza place, Pizzeria Libretto. It was great to get out and do something normal.


Today Kim had her second lumbar puncture to get some more chemotherapy injected directly at the site of the cancer in her spine. The doctor was very impressed with how Kim handled the Methotrexate and how her symptoms (leg pain) have mostly disappeared. The level of Methotrexate left in Kim's system had also fallen enough by today that she was released from hospital after the lumbar puncture. So we're all back at home now which is great!

Next Friday we'll meet with the doctor again and discuss the next step in the treatment. Likely Kim will go in again for more Methotrexate and more lumbar punctures.

The lumbar puncture procedure itself isn't too bad (not nearly as bad as a bone marrow biopsy), however it's extremely common to get splitting headaches in the days after due to a change in the pressure of your cerebrospinal fluid. Kim did get headaches from the first one but we're ready this time with Tylenol 3s in case she gets them again.


Kim seems to be tolerating the Methotrexate pretty well and the "rescue" drug has been started now to remove the Methotrexate from her system. Tomorrow she gets another lumbar puncture in order to inject some more chemotherapy drugs directly into her spinal cavity and then once the rescue drug is finished its job Kim will be released from the hospital.

Physically and mentally Kim has been doing pretty well the last couple days, she has lots of energy and is pretty upbeat. I'd say she's feeling better physically than she has in weeks. It makes the recent change of prognosis so surreal.

Bad News

Last Thursday Kim went in to get her lumbar puncture and the doctor had the results of the MRI scan ready when she arrived. Unfortunately the MRI showed pretty conclusively that the cancer has moved into Kim's spinal fluid. They still did the lumbar puncture just to be sure and also to insert the special chemotherapy (called Methotrexate) to help treat the problem.

Last Friday we talked further with the doctor to get some more details. The lumbar puncture confirmed the findings from the MRI. CNS (central nervous system) involvement with lymphoma does not have a good prognosis. It's even worse given that Kim's lymphoma has already been shown to be resistant to chemotherapy. The stem cell transplant will no longer be done because the high-dose chemotherapy does not work to destroy the cancer in the CNS and so there is no point in doing it. The doctor says that there is no longer any real hope of curing the cancer and that treatment will now focus on keeping Kim alive and comfortable as long as possible. The amount of time is variable, but could be as short as 6 months or as long as 2 years.

I asked the doctor and did some of my own research and in cases like this most cancer centres generally stop treatment and focus completely on symptom management. However Kim's doctor at St. Michael's is willing to try to treat the cancer as long as Kim wants to pursue it. Kim was admitted to the hospital on Monday to get high-dose Methotrexate in order to attempt to get the spinal involvement under control. They do this as an inpatient procedure because it is a more complicated regimen, they have to give a "rescue" drug 24 hours later to flush the Methotrexate from her system (it doesn't break down on its own) and they have to keep her and monitor her until the drug is gone. They also did another MRI of her entire spine and brain to find out how pervasive the cancer is in her CNS (the original MRI was just of a specific area in her lower back). The second MRI suggests the cancer is in fact limited to Kim's lower spine and so it may be possible to do some radiation treatment of that area after the Methotrexate.

At this point there are no long term treatment plans for Kim as it's getting to be pretty uncharted territory. Assuming the cancer in the CNS can be brought under control (it is extremely unlikely it can be totally destroyed) the doctor said Kim could pursue another type of salvage chemotherapy called ICE (Ifosfamide, Cisplatin, and Etoposide) to try to take care of the cancer in the rest of her body. In theory if everything goes extremely well the possibility of the stem cell transplant comes back. Princess Margaret is holding on to the cells they harvested earlier in case that possibility presents itself. However the doctor said that case is extremely unlikely to the point of being almost impossible.

Kim's doctor has also said she'd help us search for clinical trials and that she's started to contact some of her colleagues for advice. However most trials for lymphoma exclude patients with CNS involvement due to the very poor prognosis.

Things are pretty rough here right now, it's hard to believe what's happening given that Kim still feels more or less OK most of the time. We're going to continue to pursue treatment for a little while at least but it's hard to know at what point to stop and focus more on enjoying the time we have left.

I've talked to a lot of people already about this whole new situation and everyone has been extremely warm and kind and supportive. I'd just like to say thank you to all those people and although it can feel like you can't do anything to help the emails and phone calls make a big difference and are very much appreciated.

And finally, to end on an uplifting note, we had an absolutely wonderful time having Patrick, Toni and their 15 month-old daughter Kiera visit with us the past week and a half. Patrick had to leave early to get back to work but Kiera and Toni stayed longer (with a brief break due to Kiera getting a fever). Anyway, it was lots of fun getting to talk to them and play with Kiera. Toni took a video of Kiera and I which I'll post here for its cuteness factor. Although there is a lot of bad stuff happening right now, it helps to have a happy baby running around.

EMBEDDED VIDEO: Kiera giggling with me
More Excitement

Yesterday Kim had a Hickman line inserted at Toronto General in preparation for the stem cell transplant and also to use when getting her third round of R-GDP. Kim has always had bad veins and after all the sticking they've gotten over the last seven months they've only become worse. We were sad when her PICC line failed so it's great that they've put a new line in. The Hickman line is bigger (necessary for the transplant) and should be less likely to become blocked. Also a home-care nurse will again be visiting us regularly to help take care of the line.

The procedure for getting the line is a bit more intensive than the one for the PICC line, but it was still not too bad. We got Kim home by about 1pm only to find that Kim's doctor at St. Michael's had been trying to get a hold of us. The results from the spinal CT scan were in. In general it looked fine and there seems to be a non-cancer reason for Kim's intense back and leg pain. She appears to have a minor case of congenital lumbar spinal stenosis. This is a narrowing of the spinal canal that can cause compression of nerves and blood vessels leading to pain in the back and legs. It seems likely that some combination of the Neupogen, the chemo drugs, the lack of physical activity and the stress has caused the condition to assert itself a bit more strongly. Kim's always had minor back complaints but nothing serious enough to think twice about. It's interesting to know that there is a very specific cause. Once Kim recovers from the cancer she can look into treatments for the spinal stenosis, although apart from surgery it sounds like the best treatment is exercise and healthy living.

Anyway, the CT scan report went on at great lengths about the spinal stenosis, and then, right at the end, the report had a single sentence mentioning an extremely minor "asymmetry" in one of Kim's root nerves. This is why the doctor was calling us so urgently. Nerves are soft tissue and so they don't show up well on CT scans. You need to do an MRI. However the MRI machines at hospitals are notoriously overbooked. There was an opening yesterday afternoon and Kim's doctor really wanted to get a better look to rule out a tumour in the spine (which would be a very bad thing). Fortunately we were able to make it back to the hospital to catch the MRI opening and Kim was in and out before supper. The MRI machine is in the deepest part of the basement of the hospital and was kind of a freaky experience. Well, it was freaky for me at least, Kim didn't seem to mind.

In addition to the MRI, Kim's doctor will be giving her a lumbar puncture (ie. needle in the spine) on Thursday in order to collect some cerebrospinal fluid to test for cancer. The doctor will also inject a special type of chemotherapy at the same time just in case there is cancer present. In the worst case it will be treatment, otherwise it will have a prophylactic effect.

Kim's doctor at St. Michael's has been great through all of this recent craziness. She's explained things really well and has been super fast and proactive to make sure nothing gets in the way of the transplant. Unfortunately if there is cancer in Kim's spine it will probably derail the transplant as it is unlikely the high-dose chemotherapy would work in that case. However it's better to find this out before going through such a difficult procedure rather than doing it and only discovering later that the cancer isn't cured.

Tiring Day

The bone pain from the Neupogen got quite severe for Kim on Wednesday and Thursday so Kim called up the doctor to find out what to do. Kim's normal doctor wasn't around that day, but the on-call doctor was able to fax a prescription for Tylenol 3 (with codeine) to our pharmacy and that stuff did the trick for the pain.

Yesterday Kim was supposed to get a bunch of tests done at PMH in preparation for the stem cell transplant including a dental check up, blood tests, a lung test and a heart test. However, Kim's normal doctor at St. Michael's returned from her absence and was concerned about the bone pain Kim was having. So, just as we were leaving for the tests at PMH we got a call from the doctor at St. Michael's asking Kim to come in for an exam to rule out other possible reasons for the pain. We had to quickly call up the co-ordinator nurse at PMH to figure out what to do about all the other tests. The co-ordinator nurse proceeded to call Kim's doctor at St. Michael's and they ultimately decided that Kim should still go to PMH in the morning for her blood tests and dental check-up but then go to St. Michael's in the afternoon for the exam. There is still plenty of time for the heart and lung tests so those are being rescheduled.

Anyway, everything went fine in the morning at PMH. The dentist was super friendly and helpful and the blood test was fast. The problems started when we got back to St. Michael's. The doctor gave Kim a thorough exam and concluded the pain was probably just a delayed reaction to the Neupogen, but she ordered a CT scan anyway just to be sure. She wanted to be extra-cautious in order to avoid any problems that might delay the transplant procedure.

Kim may be mildly allergic to the contrast dye they inject when they do CT scans. On one of her first CT scans she got a very very light rash. Unfortunately any reaction requires that in the future a very strict protocol be followed before the medical imaging department will do the scan. This normally involves taking steroids 13 hours in advance and Benadryl 30 minutes in advance. Unfortunately, the doctor wanted the scan done immediately so that we wouldn't delay any of the critical stuff happening next week (third round of R-GDP and insertion of the Hickman line). So the doctor called up the medical imaging department and talked with the doctor there about how to get around the standard reaction protocol. They determined that it would be acceptable for Kim's doctor to give her steroids by IV and then Kim could immediately go up for her scan and the people at medical imaging would give Kim the Benadryl by IV just before they were ready to do her scan.

This all seemed reasonable since they had done something similar when Kim needed a CT scan during her last hospital stay. So Kim got her steroids and then we went up to get the scan. They immediately sent us back to the doctor though because medical imaging is a big place and the people we talked to claimed that they were unable to give Kim the IV Benadryl (they were not aware of Kim's doctor's pre-approval for this). So we went back to the doctor (who was pretty angry about our treatment at medical imaging) and she gave Kim the IV Benadryl. Then we went back to medical imaging where we were told to wait for our turn. All good. Unfortunately a trauma case came in through the ER and Kim had to wait longer than expected for her scan. So by the time Kim's turn came for the scan it had been too long since she received the Benadryl and they had to give her more. Generally things like the trauma are the reason you try to get the medical imaging department to give you the Benadryl since they know when the scan will actually happen. Frustrating!

Anyway the scan eventually happened but on the first try the tech forgot to unlock Kim's IV properly and the line burst splashing the dye all over Kim. Sigh.

We eventually got out of there though, and after a frustrating amount of traffic we got home. But at home we found our driveway blocked because a car accident had happened literally in front of our house. There were three police cars and everything. The accident looked extremely minor but it took them forever to clear it.

The good news though is that today Kim's bone pain has mostly gone away and she hasn't had to take any of the Tylenol 3 since Friday morning. So it seems like it really was the Neupogen and not anything more sinister. We'll get the results from the scan on Monday or Tuesday likely when Kim goes in for her third round of R-GDP.


Yesterday Kim had her stem cell collection and it was a long and tiring day. It was also a very successful day. They needed to collect 5 million cells and were able to get 6 million so they have plenty to spare. The procedure itself was pretty easy. It's very similar to dialysis. They take blood out of one arm, run it through a centrifuge to separate out the stem cells and then put the remaining parts of the blood back into Kim through her other arm. They cycle her entire blood supply through the machine multiple times. It took about three hours to do the actual collection plus another three to four hours of prep time and waiting time.

The biggest side-effect with all the collection stuff so far has been bone pain. After the mobilization chemotherapy Kim had to get daily injections of Neupogen to help increase the number of stem cells floating around her blood stream. The injections worked extremely well but unfortunately the better the drug works the more it causes pain in the bones (where the cells are generated). The effects should subside in a few days though.

Next week Kim will get her third round of R-GDP and then if all is good they'll do the transplant.

In other news, Patrick and Toni and their beautiful 15 month old daughter Kiera are visiting us from Australia and we couldn't be happier to see them. It's a very nice change of pace from all the cancer stuff.


Today was the big CT scan result day that would determine if Kim is a candidate for the stem cell transplant. We had all got ourselves into a very binary frame of mind. Either today would be excellent news and Kim would start a treatment that would hopefully end this whole mess or it would be very bad news. We were not prepared for an answer that falls in the vast grey area between those two extremes.

The two rounds of R-GDP reduced Kim's cancer by about 43%. This is good, but not good enough to do the transplant. However, because it is close, they are "giving her the benefit of the doubt." They are going to proceed with the stem cell collection as planned over the next few weeks. Then Kim will get a third round of R-GDP back at St. Michael's and then they will scan her again. The goal is to get the cancer to at least a 50% reduction. Assuming this happens the high-dose chemotherapy and stem cell transplant will occur later in June.

Today Kim started the mobilization chemotherapy that will facilitate the stem cell collection. This occurred at PMH and went extremely smoothly. They are super-well organized there. She goes back tomorrow and Friday for more treatment and then next week is a resting week. The target collection day is still May 30th.

The benefit of doing the collection before the third round of R-GDP is that we get the cells collected and stored without rushing and they will be ready to use as soon as the third round is done. Also the fact that PMH is willing to invest time and resources to do the collection before the treatment suggests they think the extra round will be successful.

The mobilization chemotherapy is composed of two drugs. The first is cyclophosphamide which is the 'C' drug from the original R-CHOP regimen. However in this case it is given at dose that is three times stronger. The other drug is etoposide which is a drug Kim hasn't received before but is used to treat Lymphoma in other parts of the world. The important thing is that the mobilization chemotherapy will also help treat the cancer so it's not like Kim will be taking a break from treatment to do the stem cell collection. There will still be drugs fighting the disease.

Waiting is so hard. Now we have to wait longer. At least the R-GDP made had a good impact on the cancer so far though. 43% is a good number.

PMH Consult

On Friday Kim, her mom and I all went to Princess Margaret Hospital for Kim's consult concerning the stem cell transplant. We spoke with two doctors and the co-ordinating nurse and they were all very friendly and helpful. PMH seems like an amazing facility too, it's very big and shiny and stuff.

Anyway, the plan is as follows. On Tuesday Kim will get a CT scan at St. Michael's and then on Wednesday the doctors at PMH will hopefully be able to compare the results to the CT scan that was taken before the salvage chemo started. I say "hopefully," just because the timing is a bit tight. Assuming the scan is received in time, and assuming it shows that the cancer is responding well enough to the salvage chemo they will begin the preparation for the transplant that same day (Wednesday).

As I mentioned before, the transplant does not actually do anything to help cure the cancer. Rather it is a necessity in order to facilitate recovery from extremely high-dose chemotherapy given to attempt to kill the cancer all at once. The toxicity of the high-dose chemotherapy causes the patient's immune system to be completely wiped out. The transplant allows the patient to recover after that happens.

In the past, before stem cell transplants, a bone marrow transplant was done instead. This was a much more invasive procedure as the marrow had to be harvested from deep in the hip bone and a lot of marrow was needed. For the stem cell transplant, the cells are collected from the blood and so it's a lot easier.

The preparation for the collection involves a single round of chemotherapy followed by a week of daily Neupogen injections. The chemotherapy is similar in strength to the treatments Kim has already received and is meant to help mobilize the stem cells in her body (ie. get them moving about the blood stream to facilitate collection). The Neupogen helps boost the counts so that there are more cells available to collect.

If all goes well, the mobilization chemo will start Wednesday, and continue on Thursday and Friday (all as out-patient procedures). Then the Neopogen injections will start the following week. They expect that Kim might be ready to have the actual collection done as early as the week of May 30.

While all the prep work for collection is happening, Kim will also go through a whole bunch of examinations to ensure that there are no latent problems anywhere in her body. The doctors would much rather treat and resolve such issues before Kim becomes severely immuno-compromised. She'll get a physical, plus heart and lung tests and even a special dental exam (need to be careful about gum inflammation and cavities and stuff). Anything that could cause an infection later needs to be fixed first.

Once all the crazy pre-amble work is done the collection itself is pretty simple. They take blood out one arm, run it through a machine which filters out the stem cells and then put the blood back in the other arm. It can be a lengthy procedure though and Kim may have to come in more than one day to complete it.

After the collection is complete, they wait until Kim recovers enough from the mobilization chemo and then admit her to PMH as an in-patient. Then they give the extremely high-dose chemotherapy and a few days later introduce the stem cells collected earlier. Finally they keep her for at least two more weeks until she has recovered enough immune system function to go back out into the world. The hope is that it could be done by the end of June.

Again, this is all still tentative pending the results of the CT scan on Tuesday. They had us come in before the results so that we would know what to expect so that they can move quickly when they're ready.

We're pretty anxious to find out what will happen!

Round 2 Part 2

Kim finished up the second part of her second round of salvage chemo on Friday. It went much faster than last time and she's still feeling OK. Next Friday we have our first meeting with the people from Princess Margaret to start learning about all the stuff that will happen with the Stem Cell Transplant. The following week Kim will get a bunch of tests done to determine if the salvage chemo has been successful enough to proceed with the transplant and if not they will give her another couple rounds of chemo before testing again. All the waiting is very hard.

Thursday was Kim's 29th birthday and obviously we kept things pretty low-key. I did bring home her favourite Gandhi Roti for supper though, and we took a short walk to the local Gelateria for some delicious gelato.

Never A Dull Moment

Kim's home care nurse taught me how to flush her PICC line and I've been doing it successfully for about over a week. Then, this Saturday I wasn't able to flush it anymore, it was stuck. The nurse came right away and was able to flush it using special magic of some sort. On Sunday I tried again to flush it and was only able to flush one of the two lines. Since I was able to do one the nurse felt it would be OK to wait until Monday to visit again. However, when she came today she was unable to flush either line.

So I took Kim into the cancer clinic at the hospital and they told us the line was done. It's nobody's fault, it just happens sometimes. It's not the end of the world since she only has the one small treatment left this Friday which they can do by normal IV.

Anyway, everything is fine, and now Kim can take showers without worrying about getting her arm wet.

Salvage Chemo Round 2

On Friday Kim received the first part of her second round of salvage chemotherapy (R-GDP). It took a lot longer than the old R-CHOP protocol, but by 6pm we were out and on our way home. Kim's been feeling mostly OK this weekend so that is nice.

This coming Friday Kim will get the second half of the treatment and then a week or so after that she will go in for a CT scan to determine how well it is all working. If there is significant enough progress she will hopefully proceed to the stem cell transplant at Princess Margaret, otherwise they will do one or two more rounds of the R-GDP and we'll see how things are after that.

The leaves are finally coming out on the tree in our front yard and that plus the warmer weather has definitely improved my mood. Soon I can put away my jacket for the summer and things will be very happy indeed.

Part 2

Kim received the second part of her first round of salvage chemotherapy yesterday. It went pretty well other than taking longer than expected due to the cancer clinic being a bit swamped. The second part is just an additional dose of gemcitabine which is not as harsh as the other stuff.

Kim's home care nurse has been great so far, coming every day to flush Kim's PICC line to keep it operational. Normally they don't flush it every day, but it was giving them some trouble in the hospital so for now they're being safe. The nurse is teaching me to flush it (it's not very hard) so that she doesn't need to come every day.

Although this treatment is stronger and Kim has been feeling the side-effects more she is still doing pretty well. Last week definitely wasn't so great, but nothing like the horror stories you hear sometimes. She's developed a little bit of a cold in the past couple days, but there's no fever so there's not much to worry about. Just something she needs to wait to resolve itself.


The doctors decided today that Kim was healthy enough to be released so we're all back at home now! Yay! A home care nurse is going to come visit us regularly to help maintain Kim's PICC line and also just to monitor her for any problems.


Looks like I spoke too soon. Near the end of March Kim started having a sore back and a mild fever. We kept a close eye on things and then on March 31 her fever spiked up to 39C and her doctor had her admitted as an inpatient at the hospital. Fortunately they got the fever under control almost immediately.

The doctor decided to keep Kim in the hospital over the weekend to wait for the results of some tests and just to keep an eye on her. She was doing well on the Friday evening (April 1) so I decided it would be OK for me to go the Blue Jays home opener with a bunch of people (Kim practically pushed me out the door). I had only been at supper before the game for 45 minutes when I got a call from Kim's mom asking me to return to the hospital. The doctor had come moments after I had left and told them that the tests revealed that the chemotherapy regimen (R-CHOP) was no longer being effective at fighting the cancer. The treatments were going so well and Kim was feeling pretty good so this was disappointing news to us.

When the primary treatment regimen stops working, the cancer is considered refractory. The doctor explained that we would have to switch to a different chemotherapy regimen and also do an autologous stem cell transplant if possible. There is still a good chance that the cancer will be cured, but the path has become longer and more difficult.

A lot has happened since we got the original news. Kim has remained in the hospital, but mainly for the purpose of expediting some additional tests. A CT scan confirmed the findings of the original chest X-ray and yesterday they did another bone marrow biopsy (ouch). She also got a PICC line inserted, which is like a semi-permanent IV line. It can stay in up to six months and it can be used to both give medicine and draw blood. This means she doesn't need to be stuck with needles multiple times a day anymore.

The new chemo regimen is being done as part of a phase III clinical trial comparing two different treatments for people with refractory Diffuse Large B-Cell Lymphoma. The two treatments are R-GDP (rituximab + gemcitabine/dexamethasone/cisplatin) and R-DHAP (rituximab + dexamethasone/cytarabine/cisplatin) and both are used extensively around North America as a secondary treatment after failure of the primary. R-DHAP is the old standard while R-GDP is newer, but many places (like BC) have already moved to make R-GDP the standard. The doctors consider them to be equally effective, but many prefer R-GDP because it is a bit less harsh on the patient. The primary reason for putting Kim on the trial was to get the rituximab (common to both protocols) paid for. OHIP does not normally cover rituximab for this usage but the trial picks up the tab (which is great since it's a fantastically expensive drug -- think tens of thousands of dollars).

Kim was randomly chosen to get R-GDP (the newer one) and she was given the first dose today. A week from now they give a second dose of just the gemcitabine, and then two weeks after that she repeats this process. It's expected that she will feel the side effects more with this regimen than with R-CHOP as it is higher dose and harsher. She was already feeling sick to her stomach this evening so it looks like the expectations were justified. She'll also have to take an injection each round to help boost her white blood cell count which will be made very low by the treatment.

After the R-GDP protocol is complete, Kim will be tested again. If the cancer responds well to the treatments then she will undergo an Autologous Stem Cell Transplant at Princess Margaret Hospital. This is similar to a bone marrow transplant, but it uses her own stem cells (so no chance of rejection) and it is much less invasive. It is still very serious though and would likely require an extended hospital stay (up to a month).

Finally, after the transplant, Kim will enter phase two of the study and be randomized to one of two test groups. One group continues to get maintenance rituximab treatments every two months for a year and the other group is merely observed closely (ie. they are a control group). There is some small evidence that maintenance rituximab treatments help prevent relapse, but nothing conclusive. This trial will help determine if there is any justification in such treatments.

In addition to all the information and tests and procedures, Kim was also kicked out of her fancy private room earlier in the week when a sicker patient needed it (Kim has actually been totally healthy since the fever left). Her new room was a semi-private which she shared with someone who appeared to be in the end stages of her own fight with cancer (in the bad way...she couldn't talk or move much on her own). Although it felt wrong to feel this way, it was really hard on for Kim to share that room. It was like a constant reminder of the potential future and it was hard to not let that get to you after a couple days. Again we feel bad to complain when Kim is currently in a much better state but it still shook us to the core.

Kim was moved to a new private room for her treatment and will remain there until she is discharged. If she does not have too strong a reaction to today's chemo she might even get to go home this weekend!

Round 6

Kim's 6th treatment is complete, two left to go. Is it weird that the whole process is becoming routine?

Treatment #5

Treatment number five is done and gone and things are still going well. They kept the Vincristine at 75% again and Kim's fingers are mostly back to normal now so that is awesome.

My employer ordered me up a developer laptop so that I can work from home and it finally arrived last week! Originally I requested it because I did not know how hard the treatment would be on Kim and thus how much I would need to stay home. It's great that I don't absolutely need to stay home because that means Kim's doing well. However it's nice to have the laptop now so that I have the ability to work from home when I feel like it. Kim's looking forward to having me around sometimes just to help stave off the loneliness.

2010 Retrospective

At the beginning of 2010 I posted a set of goals for the year. Now that the year is over, I should probably review those.

I'd say the biggest accomplishment of last year was finding, buying and moving into our new home. As I mentioned in the original post, the process of buying a home would quite possibly conflict with many of the other goals. The house plus Kim's cancer diagnosis did kind of put a hold on most things in November and December, but overall I'm really happy with how last year went.

Anyway, last year I managed to blog 65 times while my goal was to blog once a week. I didn't quite manage to accomplish that frequency, but I did far surpass the implied quantity so that is pretty good.

As for climbing I did get out a bunch and I did do five times a month for more than half the months of last year. However I did not get out as much as I would like. I managed to place second in my division at a bouldering competition at John's new climbing gym. I was really happy with that and am looking forward to competing in another comp at the same gym next weekend.

I had a lot of fun taking photos last year and am happy with the results. I haven't really even picked up my camera since last October though so I really need to get back on that.

I did a lot of new cooking last year and as a result I feel much more confident in the kitchen now. This is another area of my life that I have neglected recently though and I mainly blame the new house for that problem. I tend to get home later at night now so I don't do as much cooking during the week. I think I need to shift to cooking more on the weekends so that there are delicious leftovers for week nights.

I started a personal programming project last year, a web-based recipe storage app as I suggested in my original goal list. I did not finish it, but I had fun playing with databases, AJAX and the Prototype library. I also did a lot of good stuff at work so I'm not too worried about missing this goal. The point was to do some new software dev stuff and I certainly did that.

Although moving to a new house has had a negative effect on some of my goals, it has definitely improved my reading. I've finished almost two dozen books since moving in December and I'm so happy to have done so. Yay for the TTC!

My travel last year didn't involve any fun Canadian trips, but I did go to China which was awesome! Our travel plans this year are obviously going to be affected by Kim's recovery, but I think we'll ease back into the travel stuff with some smaller trips within Canada so I'll get to do the Canada thing eventually after all.

The other big deal from last year was Kim's diagnosis and original hospitalization and treatments. I can honestly say I wasn't prepared for anything like that, but I guess it was one of those "life is what happens to you while you're busy making other plans" events. It definitely provided me with new perspective on life and my own long term plans for it.

Anyway, that's my review of my 2010 with respect to my goals. I plan on posting again soon with new goals for 2011.

Treatment #4

Kim had her fourth round of chemotherapy Friday and it went as well as usual. The only new thing to report is that they've reduced her dosage of one of the chemotherapy drugs (Oncovin also known as Vincristine). A common side-effect of this drug is numbness and tingling in the fingers and Kim's had that since she started treatment. The concern is that this side-effect can sometimes become permanent. They didn't want to reduce the dosage initially due to concerns about the efficacy of the treatment. Now that they are comfortable the treatment is working they are slowly reducing the dose (she got 75% of her usual dose this time). Kim says that she can already feel the difference in her fingers so that is very promising.

UBB Summary

My previous post on UBB was a little rambly so I'd like to take a moment to restate my views in a more succinct manner.

I find nothing inherently wrong with the idea of paying for Internet access based on the amount of bandwidth you consume. My problem is that the CRTC is allowing major telecoms to dictate policy on how Canadian consumers should be billed for Internet usage. Major telecoms whose primary revenue streams will soon be destroyed by the Internet, the thing they are trying to alter policy on.

I'm actually a bit disappointed that the national debate seems to just be centred around the UBB stuff and not around the larger issue of the sorry state of telecommunications in Canada in general.


I wrote recently about how awesome our new Internet from Teksavvy is. Unfortunately that is about to change. The CRTC recently approved an application put forth by Bell and supported by Rogers to allow those companies to force third party ISPs which rent network capacity from Bell or Rogers to implement bandwidth caps and to charge high amounts of money for bandwidth overages. This is known as Usage-Based Billing (UBB).

This means that Teksavvy will be reducing my monthly bandwidth cap from 200GB to probably 25GB. Also, they are being forced to charge $2/GB for overage. This will essentially kill the advantage Teksavvy has over Bell or Rogers. At face-value, this is sorta fair, since Bell/Rogers are responsible for installing and maintaining the network infrastructure (infrastructure that was in part funded through taxpayer-funded subsidies, but that's a separate issue).

The real problem is the artificially low bandwidth caps and the ridiculous prices the major telecoms charge for overage. These caps are fairly recent changes to Internet plans provided by Bell/Rogers, changes that started appearing just as Internet-based content distribution companies like Netflix started becoming popular. Bell/Rogers claim the caps are needed to help manage network congestion due to the much higher load from all the video streaming people are doing. Perhaps this is the case, although it doesn't seem to be that big of a problem in places like the US, much of Europe or Japan and South Korea.

The real concerning thing about all of this is the fact that Bell/Rogers are not just providers of network capacity, they are also content distributors (Rogers Cable and Bell Satellite). Plus their method of content distribution is fast becoming obsolete. The future is clearly on-demand streaming of content over the Internet, in a manner independent of your Internet provider. Obviously this is bad for Bell/Rogers since it would mean their long standing monopoly on content distribution is about to end. And like many large companies, instead of innovating they are lobbying the government to change the rules to artificially prolong their dated business models.

Many European countries solved this massive conflict of interest long ago. They split the telecom companies into network providers and content distributors. The network providers are responsible for the care and growth of the network and they sell bandwidth to anyone at rates that approximate free market conditions (ie. based on supply/demand with buffer for profit). The distributors rent capacity and pass along those cost to their customers. This seems like a pretty reasonable set up to me. If the costs of providing network capacity go up due to congestion or whatever then the network providers can raise prices accordingly and the reason for price increases is not muddied by monopolistic, anti-competitive practices.

The sad thing about all this is that there are going to be many new and interesting opportunities related to content distribution for enterprising companies. Such opportunities will pass by Canada without stopping due to the restrictive nature of our Internet infrastructure. And customers will miss out on cool new things, and the government will miss out on new tax revenue from companies that will avoid servicing Canada. Netflix in HD is basically unusable with most Canadian Internet plans.

Finally, it's the job of the CRTC to prevent conflicts of interest like this. Seems like they failed. So what good are they?

If you've read this far, perhaps you'd be interested in signing the online petition against UBB and maybe even writing to your MP to protest this decision.

Progress Report

Over the past two weeks Kim has received a couple tests (chest CT scan and a Gallium test) to help determine the progress of her treatment. Fun facts about the tests, the radiation dosage of a chest CT is equivalent to about 400 normal chest x-rays or three years of standard background radiation and the Gallium that is used is stored in a thick lead tube until the moment before it is injected. Eeek?

Kim has been going extra stir-crazy being in the house on her own all day so we decided to send her to her parent's house for a week so she could spend some time there and maybe see some of her family who also live in the area. She left on Wednesday afternoon and was planning to stay until next Wednesday. But on Thursday we got a call from the doctor asking Kim to come in on Friday because they wanted to discuss the results of the tests. This was a bit disconcerting because we had expected to get the results of the tests at her next regular appointment.

Anyway, Kim's mom drove her back to Toronto Thursday night and we all went to the appointment today in a fairly apprehensive mood. However, everything is OK. The CT scan showed signs of an infection (the reason for the early appointment), but Kim has no symptoms and the doctor's manual exam of Kim showed no problem either. Since there are no problems the doctor suggested that it was probably just a minor infection that Kim's body is successfully dealing with. It was a little crappy that Kim had to come back so soon after leaving, but we're grateful to have a doctor that is so concerned with Kim's well-being.

As for the progress of Kim's treatment, there has been a significant reduction in the size of the largest of Kim's tumours and the others are also breaking down as well. The scans revealed that there are no new tumours, so it seems like the treatment is working. However the doctor also said there is still a long way to go and Kim will most likely need the full eight treatments.

Tomorrow Kim's going back to her parent's house to finish her visit.

Christmas and Third Treatment

Hey Everyone. Sorry for the lack of updates, nothing bad happened I was just tired and lazy.

Christmas was much better than expected. Christmas Eve I decided to make a roast chicken dinner for Kim, her mom and myself. So I went to the butcher at the end of our new street and got a fresh chicken! They were very nice there, but they didn't have any small chickens so I ended up with a full roaster. This turned out for the best because Kim's dad and siblings decided to all come up and join us for supper and to stay overnight. They brought all their presents so that everyone could open presents on Christmas morning here together! It was lots of fun and it was cool that we had so much space for everyone to stay overnight. Also, the chicken and potatoes turned out amazing!

On Christmas day everyone went home, and Kim and I shopped online for a new TV, our Christmas present to each other. We found a good one at a good price (Samsung LED) and ordered it!

I had the whole week after Christmas off work, so I spent the time unpacking and setting up the house. I made tons of trips to Canadian Tire, Home Depot and other stores and did things like change the locks, install a medicine cabinet and run Ethernet cable from the basement to the office on the 2nd floor. By the time I went back to work the house was in great shape.

New Year's Eve we spent at Chris and John's house. Chris received a pasta maker for Christmas and so they made fresh pasta for us! It was delicious and we had lots of fun playing Wii and watching Scott Pilgrim vs. the World.

On the Sunday after New Year's my mom and brother came to visit for the day to bring us presents from my side of the family. It was a second Christmas! We had good food and my mom also took me to Ikea to buy a couple things for the house, including a nice TV stand for our new TV.

Last weekend Mike came up to stay for a couple nights to round out his holidays here in Canada and his parents came up on the Saturday to visit our house, bring us some awesome cheesecake and to go out for lunch at the Stockyards which is this awesome smoked meat place on St. Clair. It was a really great weekend for sure.

Finally, this week, our TV was delivered! It's great to finally join the high-definition world. I haven't got it totally configured yet, but it seems like it will be pretty awesome.

Today was Kim's third chemo treatment, and it went about the same as the second (ie. really well). The doctor is still pleased with her progress and her general health and she told us that Kim will undergo "re-staging" before the fourth treatment (meaning they redo the CT and Gallium scans in order to get a more exact measurement of the progress of the treatment so far).

This weekend I intend to do a bit of cleaning, get more acquainted with the fancy TV features and hopefully finally get back to rock climbing (it's been at least two months since the last time I was out).

2010 | 2012