We had a very busy weekend. On Saturday, we did our TNT buddy walk. Adrienne is having pain in her feet and hip, and she was only able to complete six miles in under two hours. She is working on her speed but that seems to hurt more. The aches and pains in her feet and hip are most likely a result of the chemo. After the buddy walk, we went to breakfast and then shopping for easter baskets for Adrienne and Daniel (yes, Adrienne picked her own things).
On Sunday, I got up very early and did another very fast 10 miles. Last year, I incorporated running intervals into my walking to increase my overall speed. However, my walk pace didn't really improve during that time so I'm working on that by walking with people who have a much faster pace than I do. Later, Adrienne, Daniel, and I joined my sister's family and her inlaws at their lovely country club for brunch. Besides great company and food, they have easter egg hunts for the little ones and bunnies, chicks, and ducks to hold. At 16 and 17, Adrienne and Daniel still enjoy the little animals. One of the bunnies scratched Adrienne's chest pretty badly so we're keeping an eye on that. On Saturday, Daniel helped a friend work in his backyard and Daniel has bug bites all over one leg. Life is never boring around here.
On Saturday, Adrienne received a notice that she is a recipient of a $2,500 scholarship from the National Merit Scholarship Corporation for the college of her choice. She has only until April 6 to tell them where to send the money. Although colleges don't require a commitment until May 1, this will force Adrienne to decide well before then.
Curt is definitely coming home from Vietnam after just over two months. He'll be home for a few weeks and then back there for a few weeks. This might just become the routine of our lives.
Monday, March 28, 2005
Friday, March 25, 2005
Another Quiet Week
It's been four days since Adrienne's chemo with no sign of hives. Either the allergy medications are working really well or her body has gotten used to the chemo, both of which are good. Except for being extremely tired and going to bed around 9:30 each night, Adrienne is feeling well. She goes to school everyday and often stays late to help in the office.
I'm becoming increasingly frustrated with the medical system as I look for new treatment options for Adrienne. The government's clinical trial databases are far out of date (surprise, surprise) and the information on each institution's web site is similarly lacking. Last week, I called both Memorial Sloan Kettering and UCSF about trials listed on their web sites, only to find that they had been discontinued without explanation. The only positive news I've had is that Stanford will be doing a trial with Velcade. I've requested that Adrienne get the drug without being on the trial since the trials attempt to isolate the effect of the drug and I understand this drug is more effective for Hodgkin's Disease when given with chemo.
We're all looking forward to the weekend. On Saturday, we have our usual buddy walk with TNT. On Sunday, we'll see the whole family for brunch. We're hoping this sunshine stays with us for just a few more days. Have a Happy Easter.
I'm becoming increasingly frustrated with the medical system as I look for new treatment options for Adrienne. The government's clinical trial databases are far out of date (surprise, surprise) and the information on each institution's web site is similarly lacking. Last week, I called both Memorial Sloan Kettering and UCSF about trials listed on their web sites, only to find that they had been discontinued without explanation. The only positive news I've had is that Stanford will be doing a trial with Velcade. I've requested that Adrienne get the drug without being on the trial since the trials attempt to isolate the effect of the drug and I understand this drug is more effective for Hodgkin's Disease when given with chemo.
We're all looking forward to the weekend. On Saturday, we have our usual buddy walk with TNT. On Sunday, we'll see the whole family for brunch. We're hoping this sunshine stays with us for just a few more days. Have a Happy Easter.
Tuesday, March 22, 2005
Fourth Chemo
Adrienne's fourth chemo yesterday was uneventful. She gets 50 mg of Benadryl as a premed to avoid the hives so now she sleeps through the whole thing. Her many visitors (Erika, Mary, Debora, Rich) got to talk and watch her sleep. Still, she enjoys the company.
Before chemo, we met with the BMT doctor. Erika came along to see if she could learn anything new about DLIs and her own disease. The BMT doctor is not convinced that DLIs will help Adrienne's disease, and they could make her quite sick with a flare of graft-vs-host disease (GVHD). She wants to talk with the BMT doctors at Stanford and the doctor up in Seattle before committing. Our feeling is that it's worth trying, provided it doesn't make her too sick. The doctor I spoke to in Seattle felt that a small dose of DLI would mean little side effects and might extend her remission up to two years. Stay tuned.
Adrienne has a PET/CT scan next week, and we believe that it will show that she's in remission again. We're looking into a host of possible treatments from staying on the current chemo for an extended period of time, getting radiation to the area of recurrence, and participating in some clinical trials. The trial that we are most interested in uses a drug called Velcade given with her chemo. That trial will be available at Stanford in the next few weeks.
We found out over the weekend that Adrienne was admitted to UC San Diego. We won't know anything else until March 31 when UC Berkeley, Tufts, and Brown post their acceptances. Claremont McKenna, Adrienne's first choice, sends acceptances the old fashioned way on April 1.
Before chemo, we met with the BMT doctor. Erika came along to see if she could learn anything new about DLIs and her own disease. The BMT doctor is not convinced that DLIs will help Adrienne's disease, and they could make her quite sick with a flare of graft-vs-host disease (GVHD). She wants to talk with the BMT doctors at Stanford and the doctor up in Seattle before committing. Our feeling is that it's worth trying, provided it doesn't make her too sick. The doctor I spoke to in Seattle felt that a small dose of DLI would mean little side effects and might extend her remission up to two years. Stay tuned.
Adrienne has a PET/CT scan next week, and we believe that it will show that she's in remission again. We're looking into a host of possible treatments from staying on the current chemo for an extended period of time, getting radiation to the area of recurrence, and participating in some clinical trials. The trial that we are most interested in uses a drug called Velcade given with her chemo. That trial will be available at Stanford in the next few weeks.
We found out over the weekend that Adrienne was admitted to UC San Diego. We won't know anything else until March 31 when UC Berkeley, Tufts, and Brown post their acceptances. Claremont McKenna, Adrienne's first choice, sends acceptances the old fashioned way on April 1.
Thursday, March 17, 2005
Quiet Week
We don't have a lot of news this week...this is a good thing at our house. Adrienne has been feeling overall quite well since her chemo. Some days she is very tired and other days she's completely normal. She went off her hormones for a few days and is experiencing hot flashes but she has a good humor about it all. She also got a yeast infection so we've added another pill to the mix. This is all par for the course during treatment.
We don't have any news on the college front. Some of the UCs have been posting acceptances but neither of the UCs that Adrienne is waiting on (UC San Diego and UC Berkeley) have posted yet. We probably won't know anything else until March 31 when all of the UCs and private colleges post. Adrienne says there's a lot of tension and discussion at school about what colleges people are or are not getting into. She feels good that she has at least two choices: Claremont McKenna and UC Irvine. We know she'll have many more choices than that.
We don't have any news on the college front. Some of the UCs have been posting acceptances but neither of the UCs that Adrienne is waiting on (UC San Diego and UC Berkeley) have posted yet. We probably won't know anything else until March 31 when all of the UCs and private colleges post. Adrienne says there's a lot of tension and discussion at school about what colleges people are or are not getting into. She feels good that she has at least two choices: Claremont McKenna and UC Irvine. We know she'll have many more choices than that.
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