Author Archives: Brian

I may have spoken too soon

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I feel sort of guilty about yesterday’s blog post. Well, maybe not guilty, but I certainly feel like I’m not painting the whole picture. You see, yesterday’s post was written on Saturday, and when I wrote it on Saturday, I didn’t know that Sunday was coming.

I almost hate to use the phrase, but the only way to put it would be that Sunday was a “bad day.” At least I hope it was, because if wasn’t then that means that the worst from Wednesday’s treatment is not behind me.

The story of Sunday is still a story of the mouth sores. SO TERRIBLE! When they woke me up in early in the morning we knew that it was going to be a serious problem. Christine called the 24 nurse hot-line to see if there if there was anything that they suggested. Oddly enough there wasn’t much available in their database of knowledge. Whoever Christine spoke to even admitted that she was surprised that there wasn’t much info available, other than it’s an expected side-effect and isn’t something that should be of great concern. I get the feeling that while mouth sores are a common side-effect of chemo, the debilitating intensity with which I was experiencing them might just be my own trademark experience.

The nurse on the phone was able to offer us some help, and after a quick trip to the 24 hour Pharmacy at the hospital, Christine came home with a prescription mouth rinse. It was described to her as Maylox-Benadryl-Lidocane mixture. Shake-well, add some water, swish it up and you should be good to go within 20 minutes.  The taste wasn’t too bad, and it did do the job for a while. The key ingredient is the lidocane, which is the same numbing agent that dentists use orally to numb the injection site before administering novocaine. So yeah, it tastes like that.

It worked for a while throughout the day, but by mid-day even with the rinse I couldn’t eat or drink anything. Even water made my mouth burn so much that I couldn’t drink it anymore.

My family was over for the day on Sunday which was great! But I was generally unavailable to them as I was on the couch just trying to ignore the discomfort I was in. Later in the evening Christine and I went for a walk around the block to get out of the house and I broke down a bit. I was weak from the treatment and weak from not really being able to eat and it was just one of those little moments that I had “prophesied” about earlier in the week. I was living a vision of what the next 8 months of my life are possibly going to be like and I cried as we walked around the block together.

By mid-day on Monday I could eat and drink again but it still hurt, but as my mouth slowly got better I began to get a sore throat that even now (on Monday night) it still causing a good deal of discomfort, but at least I can eat now.  My mouth still hurts, but not as much in the burning sores kind of way. It’s still there, but now there is also a dull aching in my teeth and gums. Not really sure what to make of that yet, but now I feel that the worst is over (until next week when I go back to chemo, at least).

“But Everything Was Going So Well!”

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As I’ve stated, I write the day before and set them to post early in the morning. So as I write, I’m hyper aware that right now I am missing the first rehearsal for for the show in which I was cast before I got cancer, and which I subsequently had to drop out of.

Getting that gig marked a really important milestone for me, it was a full year of solid work in the theater. The show at the Children’s Theater started rehearsal last October and ran through the end of January. Two weeks later I started rehearsal for another show and then the day after that show closed I started into the summer shows… In short, I’d had a great last year and was already set to start the 2010-2011 Season off on a great foot!

It’s probably the one thing that we kept coming back to when we first got the news (a month ago today): “Everything was going so well.” We were both working jobs that we loved, Christine was about to start the her MBA Program, and we had started making some real plans for the future. And it was a future that we could both see taking shape. Again, everything was going so well.

I do believe that everything happens for a reason, and I know that when we emerge from this period of our lives we’ll see how we have changed for the better. But that doesn’t make the changes easier to stomach in the short term (not that  I would expect it to). But at the same time, I just finally felt like I was on the right path for once and that it was working out. It’s just frustrating.

I guess I just wish that I was at work right now. But then again, I would probably just be sitting in rehearsal wondering if I was going to have tomorrow off. =)

How Quickly I Forget

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Emily emailed me in response to yesterday’s blog post and reminded me of something that I had said to her last month. We had spoken a few weeks ago about how I was (at the time) actually enjoying the slow down in our lives. There had been a lot of noise and a great build-up of anticipation in our lives that was suddenly silenced when we got the news, and for a while it was really nice. Christine and I stopped and took a breath, we just sat together for a few days and began focusing back on what was important. It’s amazing how fast I lost sight of that and needed to be reminded that this diagnosis has brought the important things back into focus in our lives: our relationships with each other, and with our friends and family.

It’s a lesson that we will need to continue to learn. Old habits die hard and it will probably take this treatment course and the subsequent rest of our lives to learn to appreciate what we have and to not be impatient. It’s hard, the world moves pretty fast and when I wrote that yesterday I was feeling like it was passing by without us; I had forgotten to take a breath.

I’ll probably forget again soon.

Today was a good day. It was a beautiful sunny day and I took the dog for a walk. I was ambitious and set of for the long version of our walk but wound up turning back short of the halfway point when my legs started feeling the strain, so it wound up being about a mile and half walk rather than my intended 2 miles. Regardless of feeling my limitations it felt good to get out.

It’s been a week after my first dose of chemo and I’m dangerously close to maybe almost starting to feeling a tiny bit closer to normal again. I don’t expect to get to 100% by Wednesday when we go back in, but I should hopefully be at like 80%. And since I probably won’t feel like 100% until next spring or early summer, 80 is the new 100. And when this is over and I do get back to 100, I’ll have forgotten what it was like and I’ll pretty much be Superman.

The LLS, or How I Knew I Picked the Right Cancer For Me

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Two days after learning that I had cancer I saw this commercial on TV (and I actually haven’t seen it since).

I’m pretty much in love with Tina Fey and I was stoked to learn that she was a spokesperson for the Leukemia and Lymphoma Society (LLS).

About a week later I was reminded that I had in fact already encountered the LLS before. In March of 2008 I participated in The Big Climb. It was something that my father-in-law and brother-in-law wanted to do so I signed up with them. The Big Climb is a yearly event at the Columbia Tower in downtown Seattle and its a timed race up the stairs of the tallest building in Seattle (the weekend before is always host to the firefighters competition who do the 69 flights of stairs in full gear!)

What’s funny is that The Big Climb is the only benefit/race/competition thingy that I have EVER done since “Jump Rope for Heart” back in grade school (anyone?) and to remember that The Big Climb benefited the LLS seemed pretty ironic to me (though I am probably using that word in the incorrect Alanis Morissette way). I really had a good time at the event I remember being really impacted by all of the teams of people there to support a loved one impacted by Leukemia or Lymphoma. In fact while I was waiting for my timed results to be posted (I beat both my father-in-law and my then 18 year old brother-in-law BTW!) I actually did the cheek swab test and had myself added to the National Bone Marrow Donor Registry. Though now that I actually have one of the blood cancers I should probably call and take myself off the list =)

Anyway, between my forgotten history with the LLS and now the new Tina Fey connection, I was pretty sure from the start that I had been diagnosed with the right cancer for me!

I tell you that story to tell you this: On the morning of Halloween, Sunday October 31st at Seward Park in Seattle is the Running Scared 5K, benefiting the local chapter of the Leukemia & Lymphoma Society. We are putting a group together to participate and I wanted to open it up to anyone who wants to join us.

It should be a fun morning, and it looks likes it’s a pretty small event as far as these things can go. There are costume contests (for people and dogs) and the event itself is a run/walk. It’s at a great time for me in my chemo cycle so I will get to participate and will be walking for anyone who wants to walk along with me or who may not be excited about running 3.1 miles.

So if you want to join us on the morning of Halloween please let me know directly or you can leave a comment below (remember you can just type in your name to leave a comment, you don’t have to include your email address and stuff) and I will be sure get your contact info to my sister, Tanya, who is coordinating the team. It’s a $25 entry fee, but if you sign up with us you’ll get $5 discount as our team is already larger than 10.

Let us know if you are interested! It’s for a great cause and it’s a great way to hang out for a bit and get some exercise!

Another False Alarm

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I already had today’s post written. It was all about how I didn’t want to go chemo today because I felt really good (in fact this is the best I’ve felt in months). Then at about 4:40 in the afternoon on Tuesday I got a phone call from the doctor’s office letting me know that they did not want me to come in for chemo. I had gotten what I wanted, but suddenly I wasn’t happy about it.

I had gone in on Tuesday morning to have what will become a standard day-before-chemo blood draw, and the results indicated that my white blood cell count has not recovered enough for me to undergo another treatment this week. The nurse that I spoke to didn’t seem to think that this was something to be overly concerned about, it doesn’t indicate anything and it’s a common side effect of chemotherapy. My doctor just wants to wait another week and give those numbers a chance to get higher before we start up again. She also indicated that with this knowledge they may be prescribing some additional medications to help boost my white blood cell counts after the next treatment, now (tentatively, I guess) scheduled for next Wednesday.

This is actually really frustrating. I spent the whole day thinking about how I REALLY did not want to go back in for chemo, but now that it’s a reality I just wish that I was going in. I mean, let’s get this show on the road! Every day I’m not being treated is another day that I’m not getting better. Please note that this sentiment is now the exact opposite of the original draft where I spent several hundred words complaining about how I did not want to go in for my second dose of chemo today. Be careful what you wish for, I guess.

The biggest bummer is that this will push us onto a new two week schedule. Looking forward, the original every two week schedule seemed to fit well with a number of events that we already had on the calendar. Most notably the upcoming holidays. Thanksgiving and Christmas both fell on what was looking to be “a good week” for me. But if I now have chemo next week and then everything is based on that two week cycle it now pushes them onto “a bad week.” Oh well. One thing I’ve clearly learned is not to count on anything, it can all change so very fast!