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