We finally connected with Adrienne's oncologist today. He's on vacation this week but called from his car. He'd like for Adrienne to try another clinical trial with a drug that's been in the news a lot recently called ABT-263. The trial excludes people who have had transplants but he thinks he can get a waiver since her graft and her blood counts are so good. The next week will be spent in preparations and waiting for the last drug to get out of her system. One big benefit of ABT-263 is that it's an oral drug so she won't need to take the time for an infusion. The cycles are also shorter so she'll be able to finish two cycles and have scans in six weeks rather than eight. Hopefully she won't need another bone marrow biopsy for this one.
We went to the medical center for labs today and, afterwards, we stopped at Columbia University to see the dorm and campus. Wow, it's amazing. Columbia has that beautiful "ivy league" feel with big impressive buildings and people everywhere. The classrooms and offices are centered around a huge grassy area with statues, and the dorms are like regular New York apartment buildings. Within a short walk of the dorms and campus, there are restaurants and cafes, book stores, and shops all catering to college students. It's quite a change from CMC with about 1,000 students (and also a lot more beauracratic as we're discovering). We hope she likes it as she loves living in New York and wants to stay as long as necessary for treatment.
Tuesday, August 28, 2007
Friday, August 24, 2007
Frustration Continues
Adrienne had her scans yesterday. We arrived at 9 am only to find out that the insurance approvals weren't obtained beforehand, and we returned for a 2 pm appointment. I called in between to make sure it was taken care of and found out that the company sponsoring the clinical trial said they would pay for it. Our insurance would have paid for it but, since it was less than three months since the last one, it would have taken a call from the doctor to get it approved. At least we got something big from a drug company for once.
We got results a little while ago and they weren't what we hoped for. The tumor in Adrienne's lung has grown by 40% and the one in her spleen by 22%. The pancreatic node (it gets a new name each time but it's the same one) is unchanged. Now we need to figure out what to do next. I'm sure the doctor has a wonderful plan and we're eager to hear about it.
Adrienne had a few yucky days after her treatment but is feeling better today, and was able to go in to work for a few hours. I've been working here in NY and, since I telecommute anyways, it's not much different except that the people I work with are 3 hours earlier. They forget that I'm done in the evening and call me wherever I am, including at my cousin's house in New Jersey on Wednesday evening.
We got results a little while ago and they weren't what we hoped for. The tumor in Adrienne's lung has grown by 40% and the one in her spleen by 22%. The pancreatic node (it gets a new name each time but it's the same one) is unchanged. Now we need to figure out what to do next. I'm sure the doctor has a wonderful plan and we're eager to hear about it.
Adrienne had a few yucky days after her treatment but is feeling better today, and was able to go in to work for a few hours. I've been working here in NY and, since I telecommute anyways, it's not much different except that the people I work with are 3 hours earlier. They forget that I'm done in the evening and call me wherever I am, including at my cousin's house in New Jersey on Wednesday evening.
Monday, August 20, 2007
Saturday, August 18, 2007
Happy Birthday
Today is Adrienne's 20th birthday! There have been times over the last few years when we didn't think she would see this day and we are so thankful that she's able to have this big milestone. I believe more than ever that she'll live a long life and that a cure is just around the corner. I have always known that about 1,000+ people die each year from Hodgkin's Lymphoma in this country but I hadn't thought about the fact that three people die each day of this supposedly curable disease, a sobering thought.
Adrienne and I will fly back to New York this Monday. Her boss has generously offered their apartment so we'll be staying there. We thought Adrienne would move to the dorms at Columbia on August 27 but we found out last Thursday that she won't move in until August 30. I may stay for a few extra days so she can have scans and move in. I don't want her to be alone for the scan, and more importantly, for the results.
We had a little scare this week. Adrienne was feeling some wheezing in New York, which she didn't mention to her doctor and which worsened when she arrived here in Nevada. We were worried that her disease had grown significantly but a chest xray on Tuesday was fairly stable. There's an area above the tumor that looked a bit abnormal but no one was sure why. Since then, the wheezing has stopped and we know that the tumor is about the same size so we'll wait for the upcoming scans to get more information on what's going on. Adrienne's counts were really good so we are happy for that though it was a bit sobering to see the tumor plain as day on the xray.
There's a young man named Morgan Phillips who did a video log (http://www.morganphillips.com/cancer.html) of his treatment for Hodgkin's. He's quite a funny guy so you might want to take some time to watch his clips. They are around 2 minutes each so it doesn't take long to view all of them. Don't worry, it made Adrienne crack up.
Adrienne and I will fly back to New York this Monday. Her boss has generously offered their apartment so we'll be staying there. We thought Adrienne would move to the dorms at Columbia on August 27 but we found out last Thursday that she won't move in until August 30. I may stay for a few extra days so she can have scans and move in. I don't want her to be alone for the scan, and more importantly, for the results.
We had a little scare this week. Adrienne was feeling some wheezing in New York, which she didn't mention to her doctor and which worsened when she arrived here in Nevada. We were worried that her disease had grown significantly but a chest xray on Tuesday was fairly stable. There's an area above the tumor that looked a bit abnormal but no one was sure why. Since then, the wheezing has stopped and we know that the tumor is about the same size so we'll wait for the upcoming scans to get more information on what's going on. Adrienne's counts were really good so we are happy for that though it was a bit sobering to see the tumor plain as day on the xray.
There's a young man named Morgan Phillips who did a video log (http://www.morganphillips.com/cancer.html) of his treatment for Hodgkin's. He's quite a funny guy so you might want to take some time to watch his clips. They are around 2 minutes each so it doesn't take long to view all of them. Don't worry, it made Adrienne crack up.
Monday, August 13, 2007
Change of Plans
Adrienne really wasn't feeling well last week after her treatment and we had some car trouble, so we decided to cancel our trip to Tucson. Both Adrienne and Daniel enjoy being here in Nevada and we have the pool so we're still making a vacation of it. Sadly, the boys are kicking the girls butts at Pinochle but it's lots of fun. August hasn't been too hot this year but yesterday was scorching. When it cooled down in the evening, we sat outside to look at the view and it was lovely. It makes you appreciate how good your life is so long as Adrienne is healthy.
Tuesday, August 07, 2007
On Her Way
Adrienne had her treatment today and is on her way home. She's really good at sleeping on the airplane so she'll probably be more rested than us when she gets here. I sometimes think she could sleep in a wind tunnel. The last few days, she stayed in her boss' 6000 square foot apartment in NYC all by herself. Can you imagine? She said she got lost trying to find her way around but she enjoyed some alone time.
Adrienne has had some itching the last few days, which always worries us a bit. There are lots of things that could cause it so hopefully it isn't her Hodgkin's growing. She'll have scans in a few weeks so we'll know more then. In the meantime, we'll keep an eye on things. Her doctor says he isn't worried so she says she isn't worrying.
Daniel is here now so this will be the first time in almost a year that we've all been together. They are just at that age where they have busy lives and don't spend a lot of time at home with their parents. This weekend, we're going to Tucson for some R&R, to see the OK Corral, and hopefully to eat some good Mexican food. Meanwhile, it's the girls against the boys for a wicked pinochle tournament. My money's on the girls.
Adrienne has had some itching the last few days, which always worries us a bit. There are lots of things that could cause it so hopefully it isn't her Hodgkin's growing. She'll have scans in a few weeks so we'll know more then. In the meantime, we'll keep an eye on things. Her doctor says he isn't worried so she says she isn't worrying.
Daniel is here now so this will be the first time in almost a year that we've all been together. They are just at that age where they have busy lives and don't spend a lot of time at home with their parents. This weekend, we're going to Tucson for some R&R, to see the OK Corral, and hopefully to eat some good Mexican food. Meanwhile, it's the girls against the boys for a wicked pinochle tournament. My money's on the girls.
Wednesday, August 01, 2007
Busy Week Coming
Adrienne is doing well after her treatment last week and her blood counts are holding steady. She'll remain on the lower dose unless the drug company makes a change. The plan is for her to fly home after her treatment next Tuesday and then I'll fly back to NY with her on August 20 for her August 21 treatment. She'll also have scans while I'm there. Let's hope this is working.
Adrienne will move to Columbia in time for orientation on August 27. Her original plan was to stay there for one semester and then return to CMC. However, she wants to stay in NY as long as possible for treatment so she'll probably stay at Columbia for her junior year. It means some changes to the classes she had planned to take and more approvals from CMC, but it's all manageable.
Adrienne will move to Columbia in time for orientation on August 27. Her original plan was to stay there for one semester and then return to CMC. However, she wants to stay in NY as long as possible for treatment so she'll probably stay at Columbia for her junior year. It means some changes to the classes she had planned to take and more approvals from CMC, but it's all manageable.
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