Downside of Chemo Treatment

Heather has just finished her first 5 days of Temador; and although it could have been worse, it was no picnic for her. She takes the pills at night before bed to help avoid being sick, but she was sick all night her first night anyway. The following day (Tuesday) she slept off and on between being sick. But, she had to take the pills again at night. She came to our house on Tuesday so that she was here in case she got so sick again. Tuesday night brought another night of being sick and achy. By Wednesday, she was miserable, so off to Dr. Popa's we went. We found out that she was dehydrated - even though she drinks water nonstop. In addition, she was low on potassium. So, she had a 2 hour saline with potassium and more anti-nausea medication infusion. I learned what a dehydrated tongue looks like as well as veins. We are all rookies at this rodeo, and we know we have a lot to learn.

Heather returned to work on Thursday, but continued to feel very tired. Friday was the same. She slept from Friday night at 9:00 until Saturday at noon. She was up for about 1 hour, and then she slept another 3-4 hours. She just needs to sleep and sleep and sleep. And, she is not eating. She ate about 2 bites of applesauce and a few sips of soup today. She is not eating because she is not hungry and feels sick if she does. She has begun to lose weight, but I think once the initial chemo has run its course, she might feel better for a couple of weeks before it all starts again. After her 23 days off, her next treatment will be 390 mg instead of 285. In addition to her chemo treatment reactions, her Raynaud's phenomenon is driving her crazy! Her feet and hands are itching, and last night Heather was miserable with it. The Raynauds usually does bother her more this time of year, but on top of everything else, it is one more annoying issue.

After her next round, we will be headed to San Francisco for another MRI. We hope to learn more between now and then so that we have more questions in our quest for answers - answers that will someday help Heather.

Our next big fundraiser is going to be February 6 and 7 at the UNO hockey games. The players will wear special jerseys for brain cancer and those will be auctioned during the game on Saturday. In addition, during January and February 6 and 7, we will raise money with people putting money in players and coaches' jars to see who raises the most money. That person will have his head shaved at center ice after the game. More details will emerge soon, but I think it will be a fun event.

I don't know if I will write again before the holidays, so I wish you all a happy holiday season!

From Hawaii to Reality

Hawaii was a special treat for our family! (Although we missed Amy, we will make certain she is able to join us on our next vacation.) Heather was able to relax and sleep and sleep and sleep. The radiation finally caught up with her, and she remains very tired. Dr. Popa said today that Heather's reaction to the radiation is normal even though it is a bit "later" than some people's. She was not tired during the last two weeks of radiation as many people are; but about a week after it, she became very tired and still sleeps a lot. Dr. Popa also said that since Heather tolerated the low-dose Temador with her radiation, she feels Heather will also tolerate the higher dose of Temador. Heather's dose of Temador during radiation was 180, but she will begin her regime with 285 for the first 5 days and then go to 380 (I think). She will take her Temador for 5 days and be off for 23 days; then it starts over so it is a 28-day cycle. Tiredness is the most common side effect along with nausea. However, Heather will take anti-nausea medication an hour before taking Temador and will take the Temador about 1 hour before bed. Hopefully, she can sleep through any sickness she may encounter. She will have her blood checked weekly for any signs of other side effects. Dr. Popa also reinforced the idea that Heather could be on Temador for over 3 years if she tolerates it. Along with Temador, Heather must once again begin her anti-acid, anti-nausea, and antibiotics and continue her vitamins. She has been so happy not taking all the medications throughout the day; now she realizes it could be for another 3 or more years if all goes well - sounds ironic to me. But, her attitude continues to be "whatever it takes" to become cancer free!

We are planning our next San Francisco trip for January. UCSF Medical Center has a different MRI machine - one that Omaha does not have. If all goes well, we may not return to San Francisco for 4 months after January. Dr. Popa is perfectly OK with us going to San Francisco, and that makes us all feel more comfortable. I am feeling more and more relaxed with Dr. Popa and more and more confident with her as Heather's oncologist. It isn't easy "turning over" your child to someone else - even a doctor. But I have no choice, so I must find confidence in the person who is treating her. I cannot explain how important that is - it has to be a feeling of belief and hope.

So far, Heather is back at work full-time. She is grateful to her employers (Ted and Kathy) and all the people she works with who are supportive of her absences from work. She hopes that she does not miss more work because of her Temador regime, and will only have to miss work because of her San Francisco trips.

So, now that we have returned to cold and snow, we reflect on our wonderful time in Hawaii as a family having fun in the sun. We were able to relax, read, share, sleep, and escape our reality. Our daily routines have returned and worrying and thinking about Heather is a part of that. As hard as I try, I very rarely skip a minute without Heather entering my mind. But, because I always hold her close to my heart and mind, I am always researching for new approaches to brain cancer. I continue to learn and continue to ask questions. I will NEVER give up hope because I know that someday there will be a cure and that Heather will be a recipient of that cure!