Monday, October 31, 2005

Happy Halloween

We don't get a lot of kids at our house for Halloween but we have plenty of candy, just in case. Adrienne's dorm did a community service project last night handing out candy for children. She wasn't sure of the details since it was a surprise.

Adrienne saw her BMT doctor at City of Hope on Friday. He is quite excited about the killer cell trial and asked her how it feels to be on the forefront of medical research. Adrienne is taking it all in stride. She still can't taste or smell anything and it could be several weeks before her senses come back. She's had trouble talking and, as of yesterday, can only whisper. Hopefully she'll be getting back to normal quickly so she can enjoy eating at Thanksgiving.

Thursday, October 27, 2005

Okay, now it's done

Really, it is. Adrienne had her last radiation treatment yesterday afternoon and promptly washed off the markings they used to align her. They were bright blue, looking oddly like Indian war paint. Adrienne was wearing high-collared shirts to hide the markings and now she doesn't have to. She says it looks like she has a tan on the radiated areas and it hurts like a sunburn, but there are no other obvious reminders of the treatment right now. Hopefully, her sense of taste and smell will return soon. She has a check up with the BMT doctor tomorrow and then should have at least a couple of weeks off with no hospital appointments.

Adrienne will have PET and CT scans in about a month to verify that she is in remission once again. Since the lymph nodes in her neck are completely gone and her chest xray is clear, we have every reason to believe that she is in remission. With today's treatments, it is unlikely that Adrienne is cured, though we can always continue to hope. We are very fortunate that her disease has been slow growing and that her chest is clear, neither of which has occurred the case in the past.

Monday, October 24, 2005

Almost Done

Adrienne has just three more radiation treatments to go, and none too soon. She seems to go from one annoying, painful side effect to another. Last week, her throat was very sore and she had a cough. Now her skin feels like it's sunburnt though nothing is visible. Long term, she will probably lose her thyroid function, but that is easily replaced by a daily supplement. She really can't wait for this to all be over so she can get back to a somewhat normal schedule.

Yesterday, I did the Nike Women's Marathon (the 1/2) in San Francisco with perfect marathon weather. I took this season off of TNT because of Adrienne's treatments and I've been trying to spend more time with Daniel. I enjoyed seeing lots of familiar faces and old friends. There were so many TNTers from across the country. I was a bit sad that Adrienne wasn't there since we did the event together last year, and I'm always sad to see so many people still suffering from these awful diseases. It's inspiring, though, to see all the fundraising, hard work, and dedication from so many.

Almost Done

Adrienne has just three more radiation treatments to go, and none too soon. She seems to go from one discomfort to another. Last week, her throat was bothering her a lot and she had a dry cough to go along with it. Now her skin feels like it's sunburnt although there's no visible burn. The short term side effects from the radiation may take several weeks to go away after she finishes treatment. In the long term, she will probably lose her thyroid but it is easy to take a daily thyroid replacement. She really can't wait for this to all be over so she can get back to a somewhat normal schedule.

This weekend, I did the Nike Women's Marathon (the half) and it was a lot of fun. It was a bit sad not having Adrienne there since we all did it last year, but lots of people asked about her and are thinking of her, which is really nice. It's always nice to see so many TNTers from across the country working to raise money for blood-related cancers, but also sad to see that so many people are still suffering.

Tuesday, October 18, 2005

Killer Cell Trial

Yesterday we saw the BMT doctor at the adult's hospital to discuss the killer cell trial. This is a phase I dose escalation study with a procedure very similar to the DLIs that Adrienne has already had. In fact, they describe it as a targeted DLI where the natural killer (NK) cells are given cytokines to make them reproduce up to 400 times. The biggest issue appears to be scheduling. They only treat one patient a month and Adrienne has her hip surgery at the next available date in December. We're going to propose a week in January after Adrienne has a chance to heal and before she returns to school, and a date in March when she's home from school for a break.

Adrienne's chest xray was clear of disease and her labs were great except that her lymphocyte count was quite low. I was curious about it because she's been getting lymphocyte infusions. It turns out that radiation destroys lymphocytes so Adrienne still needs to be careful about being around sick people. Otherwise, everything is perfect. Adrienne had an echo yesterday also that turned out to be quite a production. First, it started nearly 90 minutes late. Then, Adrienne had a student who had a hard time completing the test, and finally the power went out. After over an hour (this usually takes 20 minutes), they let Adrienne go without all the pictures they needed. Hopefully it will be enough for her surgery in December.

Rachel asked about Adrienne's major. Hmmm, that's sort of a fluid question. Right now she's interested in Psychology with a sequence (like a minor) in Leadership Studies, a unique program at CMC. Adrienne works at the Kravis Leadership Institute and has become very interested in the sequence, which has quite a bit of overlap with psychology. She can do a summer internship at the Kravis Institute as part of the sequence, which would be a great experience. This summer, we are considering a study abroad program in Spain that focuses on intensive Spanish language studies and Spanish culture. Most students spend their junior year abroad but, with Adrienne's health issues, that would be impossible.

Rachel: Can you send me your e-mail address and Darin's at

Friday, October 14, 2005

7 More To Go

Does it sound like we're counting down? I know I am and Adrienne is too. She's been amazing over the last four weeks, getting herself to and from daily treatments, and dealing with the side effects on her own. She has four treatments next week and three the week after, and then she's done. Let's hope that this gets rid of the beast once and for all.

I got a call today from a physician's assistant in the orthopedist's office. Finally, someone is offering to help with the clearance for Adrienne's surgery in December. The PA will contact the oncologist and cardiologist and obtain all of the necessary records and clearances. Any last minute tests will be scheduled, though she didn't think any would be necessary. At her visit on Monday, Adrienne will get some additional labs as well as an echo just to verify that her cardiac function is unchanged. We aren't expecting any surprises there.

Adrienne is very happy to be coming home this weekend, even though it's just for a few days. She's looking forward to some home-cooked food, fish, and sushi this weekend. Her requests certainly run the gamut. The food at school is fine; she's just ready for a change after seven weeks.

Tuesday, October 11, 2005

Glass Half Full

Adrienne's radiation treatments are going well. She saw the doctor yesterday and she's only lost about two pounds. Her mouth doesn't seem to be getting worse, although it isn't getting better either. She constantly has a bad taste in her mouth, somewhat salty, caused by dry mouth. She has lost hair around the nape of her neck, higher on the right than the left. She's a trooper though, not complaining much about the discomfort and happy that the lumps are gone.

Adrienne is really looking forward to coming home this weekend for a well-deserved rest in the middle of the semester. Can you believe that she's been gone 7 weeks already and the semester is half over? She is enjoying all of her classes, except for Economics, which she finds incredibly boring, and is ready for some home cooked food and good sushi. She also wants to see "March of the Penguins" on Saturday. Any one want to come along?

Friday, October 07, 2005

Half Way There

After tonight's radiation, Adrienne will have completed half of the prescribed treatments. This week has been a bit smoother in terms of transportation and school work. Just one day the radiation tech was running behind and she got back late. Adrienne hasn't had any big exams or papers to complete this week either, making her much less stressed. She thinks the nodes are now gone as she can't feel anything so the goal of the remaining treatments is to kill any microscopic disease that might remain.

Unfortunately, the side effects are getting worse each day. Adrienne has always said that radiation is easier than chemo. Now she is changing that opinion. Eating is becoming increasingly difficult. Bananas seem to go down well so she is focusing on those, as well as a few fresh fruits and vegetables that aren't acidic. She was able to eat a corn dog the other day too. While she had been worried about gaining the "freshman 15," that no longer is an issue. The doctors are keeping a good eye on her weight and she has a nutritionist available to help too. She got a special mix (radiomix) that she can swish and swallow just before meals to deaden her mouth and throat to help with eating. Mostly, she is uncomfortable and says her mouth tastes bad all the time.

After several phone calls back and forth, it looks like Adrienne's hip surgery is scheduled for December 19 with preop on December 16. Stanford requires a preop 7 days before surgery so they are waiving the rules for Adrienne. We are still waiting for the chief of surgery to approve the waiver but are tentatively planning the date. While most people wouldn't want to have surgery just before the holidays, Adrienne wants to complete as much of her recovery as she can before returning to school in mid-January. She'll still be on crutches for a couple of weeks but any pain should have subsided by then.

Adrienne will be back home the weekend of October 14-18, as she has a couple of days off of school. We've rearranged her radiation schedule to accommodate the trip. She's already given me a list of things to cook and bake while she's home though I'm not sure how much she'll be able to eat. Please send her e-mail if you'd like to see her that weekend. She'll also be home for Thanksgiving.

Monday, October 03, 2005

Mucositis But Not Bad

After Adrienne's radiation treatment today, she saw the radiation oncologist. He confirmed that she has mucositis in her mouth and was a bit surprised that she got it so soon. No one knows the precise cause but Adrienne's previous treatment, either radiation or chemo or a combination, must be at fault. He admitted that the TomoTherapy is relatively new and they don't yet know all the side effects. Luckily, it's not nearly as bad as the mucositis she had with her transplants or the GVHD in her mouth after her second transplant. The major problem is with spicy foods that burn and some dry mouth. She has special gum for the dry mouth and special toothpaste to protect her teeth. But, the good news is that two of the three lumps are gone and the third is much smaller and will hopefully be gone after a few more treatments.

We decided to postpone the last DLI after all. The risk of GVHD is high, and that would preclude Adrienne from the clinical trials we are discussing. The BMT doctor at Stanford thinks the other options have a higher likelihood of success. So, instead of the DLI on October 17, Adrienne gets to see her oncologist at LPCH who has cared for her since she was diagnosed nearly 9 years ago. It's hard to imagine that this has been part of our lives for so long.

Curt's birthday was yesterday, so we got away to Carmel overnight. Daniel was down south with Adrienne so we packed up the dogs and off we went. It's been such a long time since we went away by ourselves and we had a great, relaxing time.