Things have been a bit crazy around the our household. Early last Wednesday morning, Curt's brother called to say that their mom had passed away after a steep decline the last few weeks. The funeral is this Wednesday in Seattle and we'll be flying up there tomorrow. Curt is doing okay but, as expected, is quite upset. Men and women just deal with these things differently I suppose. When my dad died, I could barely contain the tears.
Last Wednesday afternoon, after the phone call about Curt's mom, Adrienne and I flew out to Boston for the Hodgeapolooza bash. About 30 of us (patients and family) from as far as Scotland and California gathered for fun and sightseeing. It was an amazing opportunity to meet up with our online friends from the Webmagic Lymphoma forum. Unfortunately, Adrienne started feeling bad the morning after we arrived with bad GI symptoms and painful stomach aches. She was up and down the entire time we were there, joining in on some activities and sleeping during others. Prior to the trip, she was feeling fine so we were caught a bit off guard with the sudden changes.
Today she had her checkup with the doctor and he prescribed some medications to help with the symptoms. The problems seem to occur the day after the MGCD so we'll try to get on top of it quicker this week. Add to that, Adrienne is severely anemic and can't get a shot of aranesp before we leave. Apparently, the insurance companies now won't approve the shot without a ferritin level and that takes 24 hours, just about the time we'll be on the plane to Seattle. I have a call into SCCA where Adrienne had her allo transplant in 2003 to see if she can get labs and possibly a transfusion while we're up there.
We'll be back on Thursday night and, hopefully, we'll have a quiet 4th of July weekend. I'm not planning on falling this year so we should be good to go. Hopefully Adrienne will be feeling well by then.
Monday, June 30, 2008
Monday, June 23, 2008
Jersey Boys
In case you haven't figured it out yet, we LOVE the theater. We're really spoiled here in Las Vegas now because there's always something going on. After last week's really long clinic week, we decided to catch Jersey Boys on Saturday night at the new Palazzo and we thoroughly enjoyed it. If you have an opportunity, I'd definitely put it on your "must see" list. Then on Sunday, we were shocked to hear about George Carlin's death. We just saw him a few weeks ago and he looked great. We feel lucky to have seen one of his last shows.
Adrienne is actually doing quite well on the trial. Besides what seems like quite a lot of fatigue, she's had few other side effects. The biggest issue we've heard about on the trial are GI side effects and she hasn't had a lot of those so far. Her foot is also healing nicely and she's walking with a boot and no crutches as of this morning.
My mother-in-law has amazed everyone with her ability to bounce back but things sound imminent now. Hopefully the next few days will be filled with peace.
Adrienne is actually doing quite well on the trial. Besides what seems like quite a lot of fatigue, she's had few other side effects. The biggest issue we've heard about on the trial are GI side effects and she hasn't had a lot of those so far. Her foot is also healing nicely and she's walking with a boot and no crutches as of this morning.
My mother-in-law has amazed everyone with her ability to bounce back but things sound imminent now. Hopefully the next few days will be filled with peace.
Monday, June 16, 2008
"Buttermilk"
Adrienne got the first dose of Vidaza this morning. She has no nausea and feels okay but is very tired and sleeping as I write this. Today's visit was fairly long but hopefully the rest of the week will be quicker.
Last Saturday, Adrienne and I stopped at Whole Foods to get a bite to eat while running errands. We thought it definitely sounded healthier than the fast food alternatives along the way. Adrienne got an 8 oz container of Horizon Organic Milk. She thought the milk tasted slightly different than usual but assumed that it was because it was organic. Then she sipped some lumps through the straw. Yuck. The expiration date on the milk was Oct 13 2007. When we got home, I called the on call doc at Nevada Cancer Institute. It turns out that "old" milk is really just buttermilk and not full of bacteria as we might think. Adrienne felt fine the rest of the day but it was all still a very unpleasant incident. Today I wrote a letter to the national and regional offices complaining about their "quality assurance" procedures. It will be interesting to see their reply.
Last Saturday, Adrienne and I stopped at Whole Foods to get a bite to eat while running errands. We thought it definitely sounded healthier than the fast food alternatives along the way. Adrienne got an 8 oz container of Horizon Organic Milk. She thought the milk tasted slightly different than usual but assumed that it was because it was organic. Then she sipped some lumps through the straw. Yuck. The expiration date on the milk was Oct 13 2007. When we got home, I called the on call doc at Nevada Cancer Institute. It turns out that "old" milk is really just buttermilk and not full of bacteria as we might think. Adrienne felt fine the rest of the day but it was all still a very unpleasant incident. Today I wrote a letter to the national and regional offices complaining about their "quality assurance" procedures. It will be interesting to see their reply.
Monday, June 09, 2008
Clinical Trial Chronicles
Adrienne is getting her second test dose of the MGCD-0103 drug today. It'll be a long day since we had to wait for labs before starting, and then there are 8 hours of blood draws (called PKs). Thankfully, this the last LONG day. She felt a bit "off" the two evenings following last week's test dose but has been feeling fine since.
Adrienne is ready to toss the crutches in the garbage. Overall, her foot is feeling better but she's been told not to put any weight on it and swelling is still an issue. We got a wheelchair over the weekend so we could get out. We even made it to the mall on Sunday and saw George Carlin on Saturday night. I hate shopping but George Carlin was a lot of fun. The weather has been perfect, not too hot, so we've been spending a lot of time sitting around in the backyard. The dogs love to be outside with us.
My mother-in-law, Joyce, is hanging in there. Her pain is quite bad and she sleeps most of the time, but was able to talk to Curt on the phone on Sunday.
Adrienne is ready to toss the crutches in the garbage. Overall, her foot is feeling better but she's been told not to put any weight on it and swelling is still an issue. We got a wheelchair over the weekend so we could get out. We even made it to the mall on Sunday and saw George Carlin on Saturday night. I hate shopping but George Carlin was a lot of fun. The weather has been perfect, not too hot, so we've been spending a lot of time sitting around in the backyard. The dogs love to be outside with us.
My mother-in-law, Joyce, is hanging in there. Her pain is quite bad and she sleeps most of the time, but was able to talk to Curt on the phone on Sunday.
Monday, June 02, 2008
Silliness, by Adrienne
With all the falling from what we thought was neuropathy, it was bound to happen. Today I fell in the lobby of Nevada Cancer Institute while trying to catch the elevator, quite silly really. I broke my foot in at least two places, maybe three. It hurts ***A LOT***. I'm using a compression boot and crutches and will have it looked at again when the swelling goes down in about a week.
Mom and I also got ourselves into a panic about the size of the tumor in my lung (6+ cm) plus increasing wheezing and talked about going straight to chemo instead of the trial. We came to the conclusion that we have faith in MGCD and would like to give it a shot. According to the doctor, it's not less likely to work because of the amount of cancer I have. We'll just want to monitor more frequently.
We spent much of last week in Northern California. Mom had meetings for work and my aunt's 50th birthday party on Saturday was fun and chilly. On Friday, I saw the pediatric neurologist at Stanford to discuss the aforementioned neuropathy. Turns out it probably is not a result of the oxaliplatin/gemcitabine. He's not sure if it's muscle atrophy or nerve damage but we were able to pinpoint the problem to my right quadracep. I'll start with an MRI of my hips and pelvis and then will have other tests as necessary.
Mom and I also got ourselves into a panic about the size of the tumor in my lung (6+ cm) plus increasing wheezing and talked about going straight to chemo instead of the trial. We came to the conclusion that we have faith in MGCD and would like to give it a shot. According to the doctor, it's not less likely to work because of the amount of cancer I have. We'll just want to monitor more frequently.
We spent much of last week in Northern California. Mom had meetings for work and my aunt's 50th birthday party on Saturday was fun and chilly. On Friday, I saw the pediatric neurologist at Stanford to discuss the aforementioned neuropathy. Turns out it probably is not a result of the oxaliplatin/gemcitabine. He's not sure if it's muscle atrophy or nerve damage but we were able to pinpoint the problem to my right quadracep. I'll start with an MRI of my hips and pelvis and then will have other tests as necessary.
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