Adrienne is doing well. She had checkups with her transplant doctor, oncologist, and cardiologist yesterday, as well as a pulmonary function test to assess her lung function. Adrienne has some fibrosis in her lungs as a result of pneumonitis after her first transplant so we watch her lungs closely. Sometimes it's hard to distinguish between heart and lung problems. Results from the PFT should be available in the next week. The last PFT showed a drop in the diffusion (that is, how oxygen gets from the lungs into the blood) and an increase in lung capacity so we're interested to see how her lungs are performing. At the next visit on March 23, Adrienne has a CT, echo (ultrasound of the heart), and sees all the doctors again. This will be a long day at the hospital again. We're hoping that her Hodgkin's Disease hasn't grown more.
Once again, Adrienne's port isn't drawing properly. They were only able to draw a small amount of blood after two doses of TPA yesterday. Adrienne will go back in about 10 days to try again.
Today (Saturday) is the big leadership conference that Adrienne has been working on for months through her internship at the Kravis Leadership Institute. This has been a great learning experience and now she gets to see all of her hard work come together. We're sure things will go smoothly. Next weekend, Adrienne is off to Austin, Texas to attend another leadership conference. I'm not sure how she does it all.
Saturday, February 24, 2007
Thursday, February 15, 2007
Very Quiet Week
Curt is out of town so it's just me and the dogs. They are such good company especially with the big rain storm we had the other night. Since we don't get a lot of rain in Las Vegas, the houses don't have gutters. The rain pours out of downspouts from the roof and it's really noisy. Luckily it only lasted one evening, not like the days and days of rain we got in the Bay Area, and now it's warm and sunny.
Adrienne is having a good week. After two doses of TPA on Friday and yet another visit to City of Hope on Saturday, her port is finally working again. This is such a relief as the alternative would be to remove it and put another one in. While this is considered minor surgery, it's quite painful.
The doctor increased Adrienne's dose of valproic acid so now she's on double the dose she started with. So far, she still doesn't really have side effects and, thankfully, her itching has stopped the last few days. Hopefully the next scans will show some improvement or at least stabilization.
Schoolwise, Adrienne has been busy with exams but last night she got out to an opera, yes I was surprised too. She's more the Broadway sort than the classical sort. She didn't like the production very much (something modern) but she had a good time anyways.
Adrienne is having a good week. After two doses of TPA on Friday and yet another visit to City of Hope on Saturday, her port is finally working again. This is such a relief as the alternative would be to remove it and put another one in. While this is considered minor surgery, it's quite painful.
The doctor increased Adrienne's dose of valproic acid so now she's on double the dose she started with. So far, she still doesn't really have side effects and, thankfully, her itching has stopped the last few days. Hopefully the next scans will show some improvement or at least stabilization.
Schoolwise, Adrienne has been busy with exams but last night she got out to an opera, yes I was surprised too. She's more the Broadway sort than the classical sort. She didn't like the production very much (something modern) but she had a good time anyways.
Friday, February 09, 2007
CT Results
This past week has been a bit overwhelming with Erika's funeral last Saturday, Adrienne's scans and checkups this week, and some other things here at home.
Erika's service was lovely and we enjoyed seeing people we hadn't seen since our move. It was wonderful to see so many people there. It seems strange to be happy at one moment and so sad the next. Chris posted lots of pictures of he and Erika over the last several years at: http://flickr.com/photos/cmaxwell/sets/, including pictures of when she was healthy.
Adrienne had her CT yesterday and, as we expected, she's had some progression of her disease. The largest node is now 2.2 cm in her lung. The node in her spleen is 1.8 cm and the other node near her liver is unchanged at 1.4 cm. The CT doesn't show what's happening in the bone but Adrienne doesn't have any pain there. Given Adrienne's recent itching, we're just relieved that there wasn't more progression. The doctor would like to increase her dose of valproic acid. If there isn't a response in the next month or if her symptoms progress, she'll start on chemo every other week. We know that the valproic acid takes time to work, typically 2 to 3 months, so we don't want to panic just yet.
Adrienne has been having trouble with her port and it won't draw blood now. They tried TPA yesterday, which didn't work. She'll go back to City of Hope this afternoon to give it another try. She is definitely feeling the pressure of doctor's visits and travel along with her Kravis work and school, but getting the port to work is a high priority. If they can't fix it, she'll need another surgery to remove it and place a new one.
On the home front, Curt has a 2 cm nodule on his thyroid. He has a biopsy the week after next since he's out of town for business next week. Chances are this is benign and there is a history of goiters in his family but it's one more thing on the big plate of things.
Erika's service was lovely and we enjoyed seeing people we hadn't seen since our move. It was wonderful to see so many people there. It seems strange to be happy at one moment and so sad the next. Chris posted lots of pictures of he and Erika over the last several years at: http://flickr.com/photos/cmaxwell/sets/, including pictures of when she was healthy.
Adrienne had her CT yesterday and, as we expected, she's had some progression of her disease. The largest node is now 2.2 cm in her lung. The node in her spleen is 1.8 cm and the other node near her liver is unchanged at 1.4 cm. The CT doesn't show what's happening in the bone but Adrienne doesn't have any pain there. Given Adrienne's recent itching, we're just relieved that there wasn't more progression. The doctor would like to increase her dose of valproic acid. If there isn't a response in the next month or if her symptoms progress, she'll start on chemo every other week. We know that the valproic acid takes time to work, typically 2 to 3 months, so we don't want to panic just yet.
Adrienne has been having trouble with her port and it won't draw blood now. They tried TPA yesterday, which didn't work. She'll go back to City of Hope this afternoon to give it another try. She is definitely feeling the pressure of doctor's visits and travel along with her Kravis work and school, but getting the port to work is a high priority. If they can't fix it, she'll need another surgery to remove it and place a new one.
On the home front, Curt has a 2 cm nodule on his thyroid. He has a biopsy the week after next since he's out of town for business next week. Chances are this is benign and there is a history of goiters in his family but it's one more thing on the big plate of things.
Thursday, February 01, 2007
Overwhelmed
Our friend Erika lost her very long battle with Hodgkin's and Non-Hodgkin's Lymphoma on Tuesday. We have lost one of our closest and dearest friends and our lives will never be quite the same without her. Services are being held on Saturday morning so Adrienne and I are flying back to the Bay Area tomorrow. Funerals are never fun and, besides the day of my dad's funeral, I'm sure this will be one of the hardest days of our lives.
The last week or so has been stressful to say the least. Adrienne was quite distraught on Sunday as her itching got much worse and she's concerned that her disease is growing too quickly. She took some Benadryl, which helps the symptoms but makes her sleep. The last couple of days are better but she's having a challenge keeping up with her studies with so much going on. A week from today she has scans to see how things are going. In the meantime, the only thing to do is keep taking the valproic acid and try to not worry too much.
Adrienne had hoped to go abroad to Prague next fall, but with this most recent relapse, she changed her mind. She didn't want to get her hopes up and then have to cancel her plans at the last minute. Instead, she decided last week to apply as a visiting student at Columbia University next fall. That way, she can live in New York for about seven months (her dream) while getting treatment with Dr. O'Connor. This seems like a great idea and CMC will pay her scholarship to Columbia. Now she just needs to finish the applications to CMC and Columbia and wait (we sure hate that waiting game).
The last week or so has been stressful to say the least. Adrienne was quite distraught on Sunday as her itching got much worse and she's concerned that her disease is growing too quickly. She took some Benadryl, which helps the symptoms but makes her sleep. The last couple of days are better but she's having a challenge keeping up with her studies with so much going on. A week from today she has scans to see how things are going. In the meantime, the only thing to do is keep taking the valproic acid and try to not worry too much.
Adrienne had hoped to go abroad to Prague next fall, but with this most recent relapse, she changed her mind. She didn't want to get her hopes up and then have to cancel her plans at the last minute. Instead, she decided last week to apply as a visiting student at Columbia University next fall. That way, she can live in New York for about seven months (her dream) while getting treatment with Dr. O'Connor. This seems like a great idea and CMC will pay her scholarship to Columbia. Now she just needs to finish the applications to CMC and Columbia and wait (we sure hate that waiting game).
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