Levels still low: 1.15-1.18

The fact that I didn't have my next chemo session on Tuesday meant that I could go into work all week, and I felt that it was pretty productive. So that was good. This morning I went back into the Cancer Center to get my blood tested again. After a lunch seminar, I spoke to Brittney, who had just heard from the nurse that my levels were still low, at the same level as on Monday. So that was kind of a bummer. This means that we can't do chemo on Monday.

But, on the positive side, they decided that we should just go ahead and use the booster drug this time around. So I had to leave right away and walk over to the University hospital and get my prescription filled. This is the first cancer-treatment related expense we have had, thanks to Alberta's health care system. The nurse said that the booster drug is pretty expensive, but I really was still surprised by the actual price. For enough drug for 3 days of booster injections, at 1 ml per day, the cost was around $690! By my calculations that puts it at about $870,644 per gallon! Luckily we have supplemental health care coverage through my work that should cover %80 of the cost, but this will still add up over the whole treatment period. To be fair, when compared with how much this whole cancer treatment would have cost us somewhere else, I am sure that we still come out on top.

So, the plan is to inject this priceless liquid for the next 3 days, get my blood tested on Monday (hopefully my arms can survive all these pokings), and then do chemo on Tuesday. So this should only delay us by one day from the last plan, which was already a week delayed from the original plan. At 3pm we met with a Nurse at the Cancer who showed us a video of how to inject the drug, and helped walk Brittney through the first injection. Brittney had to quickly find someone to babysit the kids so that she could be there with me. I am glad that Brittney is comfortable doing the injections, because it isn't something that I like to think about, let alone do to myself. Brittney did great for this first time, and we had a great dinner and fun short movie night with the kids. It now sounds like they are finally asleep. Here's to the booster drug working and to a good night's sleep (we were up several times during the night with Charlie, and then the boys decided to wake up at 6:00, needless to say we are both a little tired).

frustration 1.14

Brittney dropped me off at the Cancer Centre this morning, where I had my blood drawn and then walked about 10 minutes over to my office at the University (the Cancer Centre is at one corner of the University property, and my office is sort of more centrally located). A little bit after lunch I got a call from Brittney who had heard from the Cancer Centre. The news was frustrating. Apparently my blood levels are even lower than they were on Friday, so we can't do chemo tomorrow either. The new plan is to get more blood drawn on Friday and hopefully do chemo on Monday. Suffice to say, I was pretty bummed by the news. I just want to keep going with the treatment so that I can be done sooner. I just hate the feeling of waiting and not doing anything, especially when there is nothing I can do. Brittney asked the nurse on the phone whether there was anything we could do to help my levels go up, or if there are things we shouldn't do that could have impacted my levels. The answer was that basically I can't really externally affect the levels that they care about, short of the booster drug that I will use next chemo round. Anyways, hopefully I can get a lot done this week while I am not having bad side effects from having just had chemo. Here's to increased levels by Friday!

1.12 and 1.13

Yesterday and today were pretty good days. I have felt fine, besides my leg/back, and we have been able to have a bit of fun as a family. Gwen has been in the same car seat her whole life, and on Friday the buckle on it broke. We made a trip to the store yesterday to get her a new one, and also ended up getting snow boots for the kids and new church shoes for the boys. I had trouble making it the whole shopping trip without sitting down, so thank goodness for the shoe department's benches.

Today in church Alec gave a fantastic talk. I was so happy with how he was able to overcome his nervousness and speak clearly and loudly into the microphone. Charlie helped him by holding some props, and he dutifully stood statue-still as best he could. It is a lot of fun being the dad of those two. They are good kids. I think Brittney put some more detail about the talk on our family blog.

One tidbit I forgot to share from Friday is that I asked my doctor about the bone marrow biopsy results and he said that they came back negative, no sign of anything amiss in the bone marrow. So that is good news, and means that I am officially diagnosed as having Stage II Hodgkin Lymphoma.

Tomorrow morning I go in to get blood drawn, and hopefully everything will be ok for a Tuesday session of chemo. I will let you all know what happens tomorrow night!

1.9, 1.10 and 1.11

Today I had my appointment at the Cancer Centre. I had my blood tested and then met with the doctor. The good news is that I actually gained some weight. The bad news is that my blood counts are a little low, and so I can't do chemo on monday. My doctor thinks that my levels will be high enough by Monday, but I need to come get my blood tested again Monday morning to be sure. Then, if everything is ok, we will do the chemo on Tuesday. So, not hugely bad news, but I was hoping that I would be able to proceed as planned. Hopefully my levels will be back up by Monday and we can move forward.

The doctor said that if this is a problem on this first round, it will probably continue to be so as we move forward. There is a booster that I can take in the few days preceding having my blood drawn that should help in the future. I got the prescription for that today, and we have to go in for a class in how to administer the booster because we have to inject it into me, apparently. I think I will have Brittney come and get trained with me, so she can take care of all the injections.

Other than that I had a good day at work, and we had a fun family movie and pizza night. I am feeling pretty good and hoping things go well on monday.

Days 1.7 and 1.8

I made it into work! Both yesterday and today! I have been feeling pretty much normal stomach-wise, and with the success of surviving through all of church I decided to give work a try. Brittney and the kids dropped me off at the University and I made it up to my office, and through an afternoon of work. I was able to meet with two students whose meetings I missed last week, and get all caught up.

I am still getting used to being the senior and advising person in a research partnership. Frankly, I am still getting used to collaborating with others at all, but I think it will be great. Both of the masters students I am working with seem really great, and I am finally getting deep enough into the problems to keep my mind working on them when I have brain-cycles to spare.

After work yesterday we were invited over to dinner at the Sala's, a family in our ward here. We had a delicious spaghetti dinner and a fun Family Home Evening with their family of 5 kids (ages 1-11). FHE even included brownies, which were super yummy (maybe I should make some myself tonight, or talk Brittney into it, even better :) It was really fun visiting with them and getting more people in the ward that I feel like a know at some level.

Everyone in the ward has been really outgoing and friendly, but it still takes time, especially for me, to connect with people and develop relationships to the point where you can move beyond the surface niceties of socializing. I know we will get there in this ward too, and last night's dinner was a good step in that direction.

My appetite has been back in full force the last few days. I had about 4 plates of spaghetti at dinner last night, and about 5 burritos at our own scrumptious mexican feast tonight. (I will have to talk more about the severe and lamentable lack of adequate mexican food here in Edmonton, but that perhaps should be put off until another time).

I feel good about eating more normally, and hope this continues throughout the whole of chemo. I am sure things will get worse as the treatments pile on top of each other, but I think we have been blessed to start this first two weeks in a pretty good place.

Day 1.6

Today was a pretty good day. The last few days I have (very) gradually been getting better about sitting for longer and not having to be flat on my back. The biggest test that I passed was picking Brittney up from the airport friday afternoon. My mom had to be at the airport about an hour before Brittney was due in, and so the big question was what to do with that hour. I survived seated in the car for the whole time and even felt good enough to park and venture into the airport to see Brittney right when she got out of customs. I felt pretty beat by the time we got home, but I had made it.

So, with that success on Friday, we decided to give church a try today. We somehow left our church bag at home and so had to keep the kids quiet with whatever happened to be in Brittney's purse. They did pretty well, and I made it through sacrament meeting seated on a metal chair, although plenty of shifting and moving around was involved. Sacrament meeting was great, we got to hear from our Bishop who spoke about pure religion. In our ward Sunday School is held in the chapel, so during that I took a break and was flat on my back on one of the pews towards the back, out of the way. Elder's quorum was survived on a chair leaned back against the wall. I was very pleased that I survived until we reached home and it sure felt good to be flat on a bed again.

After an amazingly delicious dinner of zebra noodles (bow-tie noodles with black/white stripes that Syroun sent us, thanks so much!) with spaghetti sauce and garlic bread and vegetables by Brittney we got the kids to bed and had a very enjoyable time discussing the lesson from Sunday School and then video-chatting with our great friends we left behind at Stanford. We sure miss them, but what wonderful technology we have, where it can feel like we are back in their living room, chatting away the night.

Now it is off to bed. My stomach has felt fairly close to normal today. I had some oatmeal for breakfast, peanut butter and creamed honey sandwich for lunch, and the afore-mentioned deliciousness for dinner. Maybe I will sneak in one more snack before bedtime, who knows?

Days 1.4 and 1.5

The best news is that Brittney is home. She got in a bit later than anticipated, due to some fog in Denver, but she got here, safe and sound. It is so great to have her back.

I have been doing ok. My stomach has been feeling much more normal and my back/leg get a bit better each day. Hopefully by next week I will be able to function more normally again.

Day 1.3

Today was a pretty good day. Probably, again, because I didn't try to do too much (indeed, I am still in my pajamas). The kids seemed a little better behaved for my mom, and I was able to get some rest today. The back/leg situation is about the same, but I was able to get my bowels back on track, which helped my stomach feel less off.

Besides my sister-in-law Sarah getting married (Brittney gets home tomorrow!!), my brother Thom and his wife Brittany welcomed a new baby boy to their family today. His name is Graham Foster, and he looks like a cutie from pictures.

Gwen has been just out-of-this-world adorable today. She will walk by my room, see me lying on my bed, and say "Hi!" repeatedly. Then she runs in and says "Up!". Once I lift her onto my bed she gives me a huge hug and buries her face in my chest repeatedly. A few times she has wanted to read a story or something too. I am just overwhelmed by her love and adorableness. It makes me sad that everyone doesn't have a little girl like that in their house to pick them up whenever they are down. Not that I have been down, but I also couldn't have been, not with her pervasive cuteness. I am one lucky daddy.

Day 1.2

Today, not quite so fun. The biggest problem, besides Brittney being gone, was that I actually tried to do something. Not a good idea, apparently. This is mostly due to my back/leg issues, but I have also felt a bit more nauseous today as well.

The short story is that I tried to walk to the transit station and ride the train in to work, but I was in such pain in my leg that I didn't make it all the way and had to turn around. This included multiple times lying down on my back to get up the strength for another spurt of walking.

Nothing has sounded good today to eat, but when I finally ate something at dinner it tasted great. Thanks to my mom for being here and taking care of all of us. I wish I could be more normal in terms of mobility. One more full day without Brittney, hopefully we all survive!

Day 1.1

Today has actually gone pretty smoothly. I have been able to eat fairly normally, although my stomach has felt a bit off for most of the day. I have had some fun moments with the kids, and tried to keep a low profile. Tomorrow morning Brittney leaves to go to Utah for her sister Sarah's wedding. I am so sad that I can't be there, but the doctor thought it best not to travel at this time. Thank goodness my mom is here to help out with things. I think it has been really great especially for Brittney to have someone to talk to while they do things around the house.

I have been mostly in bed, not due to the chemo but to my back. We think that I have a herniated disc in my back from some recent coughing. It is feeling a bit better today, but I still can't stand up for too long without my leg hurting. We will try to see a doctor soon about it, but everything online says that you usually you just have to wait for it to go away. Here's to waiting. And here's to surviving until Friday without my dearest Brittney.

Day 1.0 of treatment

Today I had my first treatment with chemo. It took quite a while, but Brittney was there with me at my side the whole way. What an angel she is. We arrived at the Cancer Center around 9:30, and were there until almost 3:00. There are 4 different chemo drugs that I get each time. 3 of them take about 20 minutes each to administer, while the other takes almost 2 hours. In between each they have about 10 to 15 minutes of saline solution to flush out the IV. It seemed to go well this time, and so far I feel pretty normal, although I am sure that will change. It has been fun to see the kids at home, and it is great having my mom here to help out with everything.

Later today I hope to get the blog caught up with the backstory up until now. Day 1.0 means the first administration of chemo, 0 days since chemo. Tomorrow will be 1.1 and so on until we hit 2.0 in 2 weeks when the second day of chemo comes around. Hopefully things are smooth until then!

Before the diagnosis

In late May of this year, we received the terrible news that my cousin's 2 year old daughter had been diagnosed with cancer, and the outlook didn't seem very good. Needless to say, cancer was on my mind for much of the next few days, and tears were in my eyes as I kissed my own kids to sleep and imagined how devastated I would be to hear the same news about them. That is some of the reason why, when I felt a lump in my neck a few days later, I saw a doctor as soon as I could, which luckily was the same day.

The doctor assured me that she didn't think it was cancer, but ordered an x-ray and referred me to an Ear-Nose-Throat (ENT) specialist for further examination. I got in fairly soon thereafter to see the ENT doctor, and he didn't seem too worried about things, but ordered a CT-scan to tell more. He told me that I would be contacted about scheduling the CT-scan, but I never was. This led to a bit too much time passing before the CT-scan, perhaps 2 weeks.

After the scan, I didn't hear back from the doctor. Finally I got in contact with the original doctor who had seen me the first day. She was able to find out that the ENT doctor who had seen me had moved on (only being a fellow at Stanford), and that the doctor taking his patients hadn't yet looked at the scan results. My new ENT doctor said that she would look at them in the next 24 hours and contact us.

Up to this point, I hadn't been that concerned about the whole thing. I felt that the doctors were being really cautious, based on what they said, by ordering the scans, but I was grateful for the chance to have a scan done and make sure everything was ok. The first call from our new ENT doctor was quite a shock. She said that the scan results were very worrying, and was frank about the possibilities that arose in her mind, specifically cancer. She said that the scan had revealed an even larger growth near my other shoulder which was particularly worrisome. I broke the news to Brittney and we (mostly I at this point) had a few teary eyed moments as I tried to come to grips with what this might mean.

We got in to see the ENT doctor a day or two later, and she showed us the scan results and talked more about the possibilities. At this point words like "lymphoma" and "leukemia" were thrown into the mix. That same day we were able to have a fine-needle aspiration biopsy done on the growth near my left collarbone. This basically involved being poked repeatedly with some big needles. I was grateful to have Brittney with me at this time. We were told up front that the fine-needle biopsy often came back with an inconclusive result, and that in this case we would probably want to do a surgical biopsy and go in and remove part of the growth for exhaustive examination and analysis.

After a nervous weekend, the call from the doctor with the biopsy results came on a Monday morning while I was at the service window ready to hand in the signature page for my dissertation, the final step I needed to take before graduating with a PhD in Computer Science from Stanford. Our doctor said that the test had been inconclusive, but that my blood work had been normal. She said that we should probably schedule the surgical biopsy as quickly as possible, and the soonest it could be was the next Wednesday. The pathologists were going to run a few more tests that had a small chance of yielding a concrete diagnosis, and she would call us with those results when they were available.

This was all coming at a pretty crazy time for our family. We were finishing up our five years at Stanford and getting ready to move to Edmonton, Alberta, Canada, for a post doc at the University of Alberta. My family had a family reunion in Utah the week of my scheduled biopsy, and we left for Utah the day after I turned in my dissertation. Our old plan had been to stay at the reunion most of the week, and then for me to fly back to Stanford on Thursday to load up our moving truck and then drive our other car out to Utah for a few more days of fun with Brittney's family before heading up to Canada.

The scheduled biopsy, needless to say, threw a wrench into all of those plans. We decided to have both Brittney and I go back to Stanford together for the biopsy, loading the moving truck and the drive back to Utah.

Brittney and I enjoyed a few days together in southern Utah without kids, as an anniversary trip. We then had a fun time at the first day and a half of the of my family's reunion before leaving Alec and Charlie with Brittney's sister and flying back to Stanford with Gwen. We arrived in the morning on Wednesday, and had the surgery that afternoon. I was put under for the surgery, which lasted around 2 hours. It was my first experience with general anaesthesia, added to the list of firsts in conjunction with this experience. The main other firsts were my first I.V. and my first time having blood drawn.

I was pretty out of it after the surgery and went home and went straight to bed. The next day, Thursday, I felt more normal, just in time for our moving trailer to be delivered. We had many good friends who helped us load up the trailer. I felt helpless knowing that I shouldn't be lifting heavy objects having just had surgery, but we were so blessed by the service of our friends. Friday morning, after a fun farewell breakfast with our friends, we got in the car and drove back to Utah with Gwen.

After a relaxing weekend with Brittney's siblings, on Monday we got the call from our doctor. I was taking a nap, and Brittney took the call. She woke me up and told me that the doctor said they had a positive diagnosis for Hodgkin Lymphoma. I had cancer.