Treatment Update #4

Friends,
I’m happy to report I’ve made a near full recovery from my stroke. I’ve completed a physical assessment and a neuro-psych assessment, and they’ve both been amazingly positive. I’m also about finished with the first cycle of a new chemo drug.

As I said in one of my latest updates, the stroke affected the right frontal cortex of my brain and the corpus callosum (the area that connects the right and left sides of the brain). The doctors were concerned this would have negative effects on my short term memory, ability to process information, and ability to keep focused on a particular task. It also affected the right side of my body from a physical/movement perspective. While I was in the hospital, I showed dramatic improvement in both areas, but I still had a lot of fine tuning to do from a cognitive perspective once I was released. My oncologist recommended that I try a Wii game called Big Brain Deluxe. It’s a game for kids which provide tests on memory, ability to analyze information, etc. In essence, it’s a learning game for grade schoolers. By playing this game, I was able to keep my brain stimulated and start re-growing some of the neuro connections.

Last week, I took a day long neuro-psych test to determine if there were any lingering problems with my mental processing of information, focus, and general memory. There were 60 tests administered over the course of 8 hours. Some examples of the tests are: name as many animals as you can in a minute, name as many words that start with the letter “m” (excluding pronouns) in a minute, I’m going to show you 50 images on flash cards then show you another set of images on flash cards and you need to tell me if the second set of images I’m showing you were in the first set, here are 45 math problems from basic addition/subtraction to calculus – you have 15 minutes to complete as many as you can, etc. Yesterday, I received the results of the test. Despite getting a dose of chemo that week and taking narcotics (which can both affect cognitive ability), I scored in the 91st percentile, only doing less than expected on 6 of the 60 tests. These are excellent results, considering the circumstances of the stroke and chemo, and show promise that I am mentally able to return to my job.

The new chemo drug I’m on unfortunately affects me physically to the point where it will be hard to return to work. The drug is called Adriamycin and is commonly used to treat breast cancer but has proven effective for fighting liver cancer as well. It comes as a red liquid, turning your pee red after infusion, and the nurses affectionately refer to this chemo as "Johnny Walker Red". It has the same side effects you would normally associate with chemotherapy: fatigue, nausea, vomiting, hair loss (for 70% of the people), etc. My course for this drug is to get 50% of the dose one week, 50% of the dose the next week, then take a week off from chemo to regain my strength. It’s called 2 weeks on, 1 week off. This cycle will continue until the chemo works or doesn’t work. After 2 cycles, I will have a CT scan to see if the chemo is keeping the cancer stable, shrinking things, or god forbid, allowing it to grow/spread. If things are stable or shirking, I will continue with this drug and if they aren’t then my oncologist and I will decide on a different chemo drug.

I have experienced some of the common physical side effects while on Adriamycin, and while it’s been tough, I can’t complain because I’m sure it’s a lot tougher for others out there. The drug makes me just generally uninterested in eating because I feel nauseous most of the time. I’m fatigued to the point where 9 hours of sleep a night is not enough, causing me to take afternoon naps after lunch. Two days after the infusion of the chemo is my “bad” day from a side effects standpoint. This is when I experience vomiting and more fatigue than usual. I carry around a bucket during my “on” weeks for those just in case I can’t make it to the bathroom quick enough scenarios. Those of you have lived with me know that I have a small phobia of vomiting and seeing other people vomit, so the bucket acts as a security blanket for me. I think by the time I’m done with chemo, I will have overcome my phobia. As I mentioned in my previous blog, I am also taking multiple pills in the morning and evening, plus a laxative to help keep me regular. All of these pills, combined with the nausea from the chemo make things pretty interesting. During my “on” weeks, I’m very much like a poor college student subsisting mainly on ramen noodles and applesauce. I also throw boiled chicken into my ramen noodles to get some protein and extra calories. It is hard for me to take in too many calories during this time because anything spicy or exotic can cause a bout of vomiting. Cream of wheat did not agree with my stomach for goodness sake, and I learned that the hard way one morning. The nausea, combined with the constipation battle I had from the narcotics (more on that in the previous post), have caused me to dip below the 130 pound barrier. Due to the fatigue, I’m also not getting much exercise so whatever muscle I had left is now disappearing to the point where I look like a refugee.

The mindset of being on chemo and out of work has been the hardest thing to deal with. When I was at work, it was easy to measure the success of the day – did I get my work done? Was I productive? In that environment, I was always able to measure my progress and success. Since most humans generally want to succeed and look at progress as a positive thing, it’s easy to keep your spirits up if you are doing well at work. While on chemo, you have to wait 6-8 weeks to know how things are progressing. Instead of the pride of a job well done, not an insignificant thing, this is my life span I’m monitoring from a progress standpoint so the stakes are much higher. The wait, especially when you feel like crap in between, can be mentally challenging. It’s hard to get too excited when you go to bed proud of yourself that you didn’t puke that day! To keep my mind occupied, I’ve chosen to focus on planning for Michelle's and my wedding.

I’d like to acknowledge a kind gesture from the marketing leadership at T-Mobile. They recently put together a comedy care package to help lift my spirits. The care package included notes, classic comedy DVD’s, some movie treats, and a T-Mobile myTouch (the phone I had been working on prior to going out on sick leave – it’s set to launch in late July). I was touched by such a kind gesture and the thoughtfulness of each gift. I’m especially excited to use the new phone – I may be biased, but it’s fantastic! This makes me appreciate my place of employment and the people I work with so much that I want to get back to work when I can physically and mentally handle the challenge. Since I’m a 100% or nothing person, I know that going back part time will be hard for me because I’ll want to work my butt off but I know that may be my only option to return to work in the short term.

Sorry it took me a while to post this update. My updates will probably come in 3 week intervals from now on, as it’s easier to concentrate and do things during my “off” week.

Happy summer to you all!

Rhone