Adrienne finally had the repeat thyroid test on Friday and, yesterday, the endocrinologist told her to start the thyroid medication. I don't know what her numbers were yet but I know that she's been incredibly tired and we hope this will help. She frequently takes a nap in the afternoon and drags much of the rest of the day.
Adrienne saw the cardiologist on Friday and he really wants her to stay on the Coreg. He says the Coreg is much more important long term than the Enalapril and he hopes she can tolerate it. The plan was to start the thyroid supplement to ease the tiredness and then increase the Coreg dose. Adrienne is supposed to call him on Wednesday or Thursday after she starts the thyroid medication to decide what to do next.
Adrienne now has a whole five weeks off from doctor and clinic visits. Yyyeeeaaahhh. Her next appointments are December 1.
This Friday, Adrienne will be giving the honoree speech at the Team In Training pasta dinner for the Santa Barbara 1/2 Marathon. She is excited and nervous at the same time, and we're very proud that she's going to do this. She's going to talk about how new treatments have been there every time she needed them and how important cancer research is to keep those advances coming.
I got quite a few messages about the mammogram joke (glad you enjoyed it), so here's another way to prepare:
Open your refrigerator door and insert one breast between the door and the main box. Have one of your strongest friends slam the door shut and lean on the door for good measure. Hold that position for five seconds (while you hold your breath). Repeat again, in case the first time wasn’t effective enough.
Tuesday, October 31, 2006
Wednesday, October 25, 2006
Feeling Better
I wrote last week about Adrienne fighting a cough. She saw her oncologist for a regular visit last Friday after some headaches and vertigo the previous days. The doctor prescribed antibiotics to prevent bronchitis or a sinus infection, a relatively common occurence with a cold for her. The doctor also mentioned that he couldn't rule out Hodgkin's Diseaes in the brain. Huh? When Adrienne called to tell me, I wasn't even sure what to say but she was fine with this news. Since then, she hasn't had any more headaches or vertigo so there appears to be nothing worry about.
Adrienne sees the cardiologist on Friday and we hope to change her medications so she feels better. She takes a nap almost every afternoon and she doesn't like feeling tired all the time. He is out of town until Friday so we won't be able to talk until then.
Otherwise, things are going well. Adrienne is doing well in school and in her job, and is busy planning for next semester (already). She is definitely somebody who likes to have a plan.
The Chosen Mothers
Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over earth selecting, His instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
Finally, He passes a name to an angel and says, “Give her a child with illness” the angel is curious, “Why this one, God? She’s so happy.”
“Exactly,” smiles God, “Could I give a child with disease a mother who does not know laughter? That would be cruel”
“But, does she have patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”
“I watched her today,” said God, “She has that feeling of self- independence that is so rare and necessary in a mother. You see, the child I’m going to give her has its own world. She has to make it live in her world and that’s not going to be easy.”
“But Lord, I don’t think she believes in you” said the angel.
“No matter, I can fix that. This one is perfect. She has just enough selfishness”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…. ignorance, cruelty, prejudice…. And allow her to rise about them.”
“And what about her patron saint” asks the angel, his pen poised in mid-air. God smile and say’s … “A mirror will suffice”
Adrienne sees the cardiologist on Friday and we hope to change her medications so she feels better. She takes a nap almost every afternoon and she doesn't like feeling tired all the time. He is out of town until Friday so we won't be able to talk until then.
Otherwise, things are going well. Adrienne is doing well in school and in her job, and is busy planning for next semester (already). She is definitely somebody who likes to have a plan.
The Chosen Mothers
Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over earth selecting, His instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
Finally, He passes a name to an angel and says, “Give her a child with illness” the angel is curious, “Why this one, God? She’s so happy.”
“Exactly,” smiles God, “Could I give a child with disease a mother who does not know laughter? That would be cruel”
“But, does she have patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”
“I watched her today,” said God, “She has that feeling of self- independence that is so rare and necessary in a mother. You see, the child I’m going to give her has its own world. She has to make it live in her world and that’s not going to be easy.”
“But Lord, I don’t think she believes in you” said the angel.
“No matter, I can fix that. This one is perfect. She has just enough selfishness”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…. ignorance, cruelty, prejudice…. And allow her to rise about them.”
“And what about her patron saint” asks the angel, his pen poised in mid-air. God smile and say’s … “A mirror will suffice”
Wednesday, October 18, 2006
Back to CMC
Adrienne went back to college yesterday. She had planned to return on Monday night but decided to stay to finish a paper. We're glad she did. We had a nice weekend and she enjoyed sleeping in her own soft, comfy bed. Our new neighbors have a couple of dogs including a 7-month old puppy and Adrienne got to meet them.
Adrienne is fighting a cough and some laryngitis. Since the radiation to her throat last year, she loses her voice very easily, especially when she's tired. A cough is always concerning so hopefully this will pass quickly. I'm happy that she'll see her oncologist on Friday to check out the cough and also to have her thyroid rechecked.
Since starting the Coreg for her heart, Adrienne's fatigue has been noticeably worse. I mentioned this to our case nurse from the insurance company, who discussed it with her medical director. He suggested that Adrienne discontinue the Coreg and increase the dose of the Enalapril. Adrienne sees the cardiologist next week and hopefully we can get her a better mix of meds so she feels better.
I mentioned last week that Adrienne needs to start breast screening. I've read that mammograms aren't effective for younger women because they have denser breast tissue than older women so Adrienne will probably need to have a yearly MRI (a one hour painless procedure) rather than a mammogram (a 15 minute uncomfortable procedure). Here's my favorite description of how to prepare for a mammogram:
Visit your garage at 3 am when the temperature of the cement floor is just perfect. Take off your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.
Adrienne is fighting a cough and some laryngitis. Since the radiation to her throat last year, she loses her voice very easily, especially when she's tired. A cough is always concerning so hopefully this will pass quickly. I'm happy that she'll see her oncologist on Friday to check out the cough and also to have her thyroid rechecked.
Since starting the Coreg for her heart, Adrienne's fatigue has been noticeably worse. I mentioned this to our case nurse from the insurance company, who discussed it with her medical director. He suggested that Adrienne discontinue the Coreg and increase the dose of the Enalapril. Adrienne sees the cardiologist next week and hopefully we can get her a better mix of meds so she feels better.
I mentioned last week that Adrienne needs to start breast screening. I've read that mammograms aren't effective for younger women because they have denser breast tissue than older women so Adrienne will probably need to have a yearly MRI (a one hour painless procedure) rather than a mammogram (a 15 minute uncomfortable procedure). Here's my favorite description of how to prepare for a mammogram:
Visit your garage at 3 am when the temperature of the cement floor is just perfect. Take off your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.
Tuesday, October 10, 2006
When Your World Stops
Adrienne is doing well right now and won't see any more doctors until the end of October when she sees her oncologist and cardiologist, and gets a bone density scan and thyroid test. Since she takes hormones for ovarian failure, she is apparently at risk for endometrial cancer so she needs to be checked for that at some point, as well as for breast cancer since it's been ten years since she received her first round of radiation to the chest. As they say, cancer is the gift that keeps on giving.
One day last fall, when Adrienne was waiting for her ride after her radiation treatment, she called me, very upset. A family in the waiting area with her had just received bad news and they were all crying. It brought back all the times we had received similar news and the awful feeling that the world has completely stopped. We often hear that every so many minutes, someone is diagnosed with cancer or some other horrible disease and we feel bad, but it's hard to put yourself in the position of the person who just received this news. Their world, for that moment or some period of time, comes to a complete stop. The rest of the world goes on normally, working, eating dinner with their family, visiting with their friends, simply living their life. Sometimes when I'm sitting in a restaurant, with all the people talking and laughing and having a good time, I stop for a moment to think about the people whose world stopped that day.
For now, our world is revolving quite well and we hope it stays that way for awhile. Starting Friday, Adrienne has a few days off of school so she will be coming home with a couple of girlfriends. We can't wait to see her.
One day last fall, when Adrienne was waiting for her ride after her radiation treatment, she called me, very upset. A family in the waiting area with her had just received bad news and they were all crying. It brought back all the times we had received similar news and the awful feeling that the world has completely stopped. We often hear that every so many minutes, someone is diagnosed with cancer or some other horrible disease and we feel bad, but it's hard to put yourself in the position of the person who just received this news. Their world, for that moment or some period of time, comes to a complete stop. The rest of the world goes on normally, working, eating dinner with their family, visiting with their friends, simply living their life. Sometimes when I'm sitting in a restaurant, with all the people talking and laughing and having a good time, I stop for a moment to think about the people whose world stopped that day.
For now, our world is revolving quite well and we hope it stays that way for awhile. Starting Friday, Adrienne has a few days off of school so she will be coming home with a couple of girlfriends. We can't wait to see her.
Wednesday, October 04, 2006
What is remission?
In just a few weeks, it will be 10 years since Adrienne was diagnosed with Hodgkin's Disease. Since then, she's had quite a few remissions, the longest was more more than three years and the shortest was just a few months. We've learned that "remission" means that the disease doesn't show on scans but it doesn't mean that Adrienne is cured. It means that we have a time without worry until the next surprise greets us.
Lately I've been thinking about what 10 years has meant to us. For Adrienne, it's been 16 different chemos in six different protocols, over 100 days of radiation, an autologous stem cell transplant, an allogenic stem cell transplant, graft vs. host disease, nine surgeries, tons of procedures, and too many days inpatient and outpatient to count. Long term, she has cardiomyopathy, restrictive lung disease, avascular necrosis, ovarian failure, and now thyroid failure. Yet, she still lives a relatively normal life as a college coed with a full load of classes, a job, and plenty of social activities.
For us as parents, it's meant many tears and countless hours of worry. We've spent weeks at the computer trying to learn about treatments that might help, talking with doctors all over the world, and simply praying for a cure. And so often, I remind myself how lucky we are to have met so many wonderful people, doctors and nurses, and patients and their families. People ask me all the time how I do it, how do I deal with having a child with cancer. My response is always, "we do what we have to do." I wouldn't change anything just knowing Adrienne is still here with us.
Lately I've been thinking about what 10 years has meant to us. For Adrienne, it's been 16 different chemos in six different protocols, over 100 days of radiation, an autologous stem cell transplant, an allogenic stem cell transplant, graft vs. host disease, nine surgeries, tons of procedures, and too many days inpatient and outpatient to count. Long term, she has cardiomyopathy, restrictive lung disease, avascular necrosis, ovarian failure, and now thyroid failure. Yet, she still lives a relatively normal life as a college coed with a full load of classes, a job, and plenty of social activities.
For us as parents, it's meant many tears and countless hours of worry. We've spent weeks at the computer trying to learn about treatments that might help, talking with doctors all over the world, and simply praying for a cure. And so often, I remind myself how lucky we are to have met so many wonderful people, doctors and nurses, and patients and their families. People ask me all the time how I do it, how do I deal with having a child with cancer. My response is always, "we do what we have to do." I wouldn't change anything just knowing Adrienne is still here with us.
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