Thursday, April 30, 2009

Lots of news

Sorry for the lack of updates. We got back last night to find our Internet access down and it's just been up for a little while. You don't realize how dependent you are on it until you don't have it.

Curt and I made it to Mexico (Puerto Vallarta and San Blas) and had a great trip, except for a little swine flu scare. A few people were wearing masks, but otherwise, you wouldn't know anything was going on. No one was sick, no one seemed too bothered, and most of us just tried to enjoy our vacation. Curt's brother, Kent, and his partner, Luis, were sick before we arrived but have been just fine since then and no one really knows what they had. At the airport, we had to fill out a form saying we weren't sick. We're staying away from people for a few days, but really that's just to be overly cautious.

I was in touch with Adrienne's doc since he returned from vacation on Monday. He got another read of her scan from a radiologist he trusts and, while the report is more detailed, it doesn't tell us much. There's definitely some progression, there's definitely some pneumonia, and there are areas that they can't figure out from a scan. The plan now is to have a bronchoscopy and take samples for pathology and cultures. Getting this scheduled has been a bit of a challenge but hopefully it'll happen soon. Adrienne is feeling okay except for some noises coming from her chest. Coughing seems to clear things so that's good, I think.

THESIS IS DONE. They were due at noon on Monday, followed by champagne (the senior class buys everyone a bottle), and a romp in the fountain. There was even a countdown to noon when the papers were due. There's still a lot of work for Adrienne to do but she'll be done with classes and exams on December 6 and will graduate on May 16. We can hardly believe it.

A bit of sad news: Jessica Wentz, a young mother of two adorable children, died this morning from Hodgkin's. Adrienne and I spoke with Jessica several times trying to find a treatment that would help her, and sadly, her disease was too aggressive. We are extremely sad for her and her family, but even more, we're angry that this disease isn't as curable as people think and that Jessica's HMO limited her access to the best healthcare possible. We hope you'll visit her Caringbridge site at: and leave a message for her family.

Monday, April 20, 2009

Sorry folks...not good news

We were really hoping for NED but it seems to be impossible. Adrienne has multiple new patchy densitities in her right lung, in the right infrahilar, and in mid and lower and peripheral lung field. The largest lesion is 3.3 cm in size, not huge, but still surprising. She also has pneumonia in the lower right lung. She had fevers on Friday and Saturday, which I was sure was flu since she has no respiratory symptoms, but apparently not. Her doc at COH is on vacation (says it's his first one in 6 years) so I'll talk to the doc on call later today. I'm hoping we can get her into the LBH589/RAD001 trial at City of Hope and if that doesn't work out, we'll be off to NY for the Belinostat trial.

Timing is always bad, isn't it? Adrienne has 2.5 weeks left of school and Curt and I are off tomorrow to see his brother in San Blas, Mexico. Kent and his partner have owned these bungalows ( for several years and we haven't been down for a visit yet. We decided just last Friday to go, hours before Adrienne called about the fevers. My sister will be on call in case Adrienne needs anything and, of course, we can get back quickly if necessary.

You never totally get used to this type of news. It still takes the breath out of us.

Friday, April 17, 2009

Gotta wait

Adrienne had her PET/CT today but her doc is in Germany so we probably won't get results until Monday or Tuesday. We aren't concerned, though, as she's feeling well and there are no noises coming from her lungs. Her heart rate continues to be elevated so it's good that she's getting a complete evaluation next month with the expert, but we aren't too worried on the cancer front. She has 2.5 stressful weeks of school left so she's under the gun but doing okay. I'll let you know as soon as I know something.

Friday, April 10, 2009

Moe, the Chia Pet

Do you remember that old commercial with the Chia pet that grows and grows? Well that's what Moe is like. We're used to hairy dogs, but the shelties' hair is self-limiting, where Moe's just grows and grows and grows. Here's a few pictures of him all fluffed up, with Adrienne, just before a trim.

Thursday, April 09, 2009


Yes, Adrienne is really stressed about school right now as she rushes to get her thesis done by the due date on April 27. After lots of discussion yesterday with her thesis advisor, she decided to make some changes, which hopefully will alleviate some of the stress. She sounded better last night although she's very, very tired. In addition to thesis, she has other classes that need her attention. The good news is that she'll finish on May 6 and will come home for a little before graduation. Seniors finish early so that grades are in before commencement.

May will be a busy month for us. Adrienne has an appointment with the cardiologist in Miami on May 28 and we're hoping to get a little vacation in at the same time. As for treatment for her Hodgkin's, we'll have to see how her scans are next week. We're hoping she can take all or most of the summer off. Except for some shortness of breath on exertion, she's feeling pretty good and was able to do yoga yesterday.

Here's to a successful thesis.

Wednesday, April 01, 2009

Almost back to normal

Adrienne is feeling pretty good this week and is making good progress on her thesis. It sounds like all the seniors are doing nothing but that. She has a cardiology appointment next week and we're waiting to hear about a scan appointment, hopefully in the next two weeks. Then we can figure out our next steps. We'd like to go to Miami for a complete cardiac workup and then to New York to start the Belinostat trial...except City of Hope is getting LBH589, an HDAC inhibitor, with a drug called RAD001, an mTOR inhibitor, both of which are showing responses in refractory Hodgkin's. Her doc is checking with the drug manufacturer to see if they'll let her into that trial so we're keeping our options open. But, if Adrienne is in remission (let's hope), then she'll take a few months off of treatment. Wouldn't that be great?

Spring seems to be taking awhile to get here. We get a little tease for a few days and then it gets cold again. Caesar loves to lay in the backyard on the sunny, warm days. I'd like to let Moe out too but he gets into mischief, like slipping through the fence. We really need to get some chicken wire out there, and in the meantime, we have to be on constant guard. He hasn't gone too far but he likes to say hello to everyone that passes by and will run after them if they don't greet him, so we're being extra cautious.