Superfluous Matter
Blood

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.

Home

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.

Next

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.

DHAP

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).

Status

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.

Home!

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.

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