The oncologist, Dr. Alamar, (who is younger than me, by the way) decided the new chemo is not the right chemical for Janette. He also decided to skip this week since Janette still felt nauseous from the last round and the radiation seems to be working so well.
Dr. Alamar is very concerned about Janette's quality of life. He says they are not trying to extend her life so she can lie around in exhaustion and nausea. This is not good and means his plan must be modified. The point is for her to lead a normal a life as possible for as long as possible. So, the break from chemo, a more gentle approach to chemo than was planned for when she finishes radiation and a prescription for Ritalin.
Yes, HD/ADD Ritalin. What is a sedative in children is a mild stimulate in adults. Its purpose is to help Janette have more energy and get moving more. If she moves more, she'll have even more energy and more fun and more appetite and more quality of life and so on. Seems to be working without any side effects. Janette should be able to do what's fun for her, he says, like shopping for bargains with Aunt Eliska.
We don't feel so good today. Perhaps coincidence, perhaps a mild virus. We'll see tomorrow. Janette's immune system is good enough that a virus is not a problem.
Thursday, May 28, 2009
Tuesday, May 26, 2009
Better Now
I went to today's radiation appt after all and I talked with the chemo nurses about how nauseous Janette has been. I also asked to see someone before her chemo treatment tomorrow.
So, tomorrow we see the oncologist before chemo. I want to make sure the dosage is not too strong and I want to ask if this is really the right formula for her. For today, the nurse suggested an IV of nausea medication and steroids and she guessed that Janette was dehydrated and also needed fluids.
She was right. Two hours and 1 liter of saline later, Janette was feeling much better. When we came home, she ate all my leftovers from breakfast. That was a lot of sausage, potatoes and vegetables. She drank a large protein shake and ate a small bowl of fruit and half a ham and cheese sandwich.
We also learned that on holidays, the chemo room is open on the Sunday and Monday for 2 hours for this very thing. We could have saved Janette two days of misery. Now we all know for next time.
So, tomorrow we see the oncologist before chemo. I want to make sure the dosage is not too strong and I want to ask if this is really the right formula for her. For today, the nurse suggested an IV of nausea medication and steroids and she guessed that Janette was dehydrated and also needed fluids.
She was right. Two hours and 1 liter of saline later, Janette was feeling much better. When we came home, she ate all my leftovers from breakfast. That was a lot of sausage, potatoes and vegetables. She drank a large protein shake and ate a small bowl of fruit and half a ham and cheese sandwich.
We also learned that on holidays, the chemo room is open on the Sunday and Monday for 2 hours for this very thing. We could have saved Janette two days of misery. Now we all know for next time.
Monday, May 25, 2009
More Nausea
The new chemo isn't the answer after all. Today, Janette was more nauseous than any other time before. She even looks drawn and ill. The last two days have been awful for her.
Tomorrow is my day off from radiation transporting, but Aunt Eliska will go to the chemo nurses to talk about this chemo and about getting better nausea medication.
This is a good time for prayers and meditations to bring comfort and ease.
Tomorrow is my day off from radiation transporting, but Aunt Eliska will go to the chemo nurses to talk about this chemo and about getting better nausea medication.
This is a good time for prayers and meditations to bring comfort and ease.
Saturday, May 23, 2009
Doctor Visits and Chemo Change
We've had a busy second half of the week and we also had that low pressure system go through Florida. Wow! We got inches of much needed rain, lots of lightning, yesterday a funnel cloud and a three day headache for me.
The bigger news is from Wednesday. Between radiation and chemo sessions, we had appointments with the radiation doctor and the oncologist. Both are very pleased with the results of Janette's treatment. Really pleased. Her back pain is gone. Her voice is stronger and occasionally normal. And she now rarely chokes and coughs from drinking and talking. She was scheduled to end radiation soon, but since she's responded so well, they decided on 8-10 more sessions on her chest on all those affected lymph nodes.
The oncologist also decided Janette had too much nausea with the chemo he had prescribed, cisplatin. So on Wednesday, she had a new chemical--carboplatin. Janette's had much less nausea and food aversion. I'm also not hearing her complain of the other digestive side effects that usually show up by Saturday. Yeah! Wonderful! This is a great change!
Carboplatin does come with other side effects good and bad. Janette will loose her hair, but after 3 weeks of nausea, she could care less. To the good, carboplatin comes each week with 10mg of a steriod in the IV.
Wow, again! Wednesday, Janette was on speed. She saw me dusting and cleaning and so she did a major cleaning and washing on her bedroom. She didn't sleep, but spent half the night thinking about cooking food and the other half cooking and eating it. The pool people came out on Thursday to clean and do minor repairs on the pool filter. Janette was all over the place, squatting at the curb and working with the street drain, cleaning and moving stuff around the patio, bustling here and there as the pool man worked. She did finally exhaust herself, but still sorted papers for hours that evening. Don't worry, she's not overdoing it. Her body wouldn't let her. Moving around and getting her blood flowing can only help her heal and feel better.
The bigger news is from Wednesday. Between radiation and chemo sessions, we had appointments with the radiation doctor and the oncologist. Both are very pleased with the results of Janette's treatment. Really pleased. Her back pain is gone. Her voice is stronger and occasionally normal. And she now rarely chokes and coughs from drinking and talking. She was scheduled to end radiation soon, but since she's responded so well, they decided on 8-10 more sessions on her chest on all those affected lymph nodes.
The oncologist also decided Janette had too much nausea with the chemo he had prescribed, cisplatin. So on Wednesday, she had a new chemical--carboplatin. Janette's had much less nausea and food aversion. I'm also not hearing her complain of the other digestive side effects that usually show up by Saturday. Yeah! Wonderful! This is a great change!
Carboplatin does come with other side effects good and bad. Janette will loose her hair, but after 3 weeks of nausea, she could care less. To the good, carboplatin comes each week with 10mg of a steriod in the IV.
Wow, again! Wednesday, Janette was on speed. She saw me dusting and cleaning and so she did a major cleaning and washing on her bedroom. She didn't sleep, but spent half the night thinking about cooking food and the other half cooking and eating it. The pool people came out on Thursday to clean and do minor repairs on the pool filter. Janette was all over the place, squatting at the curb and working with the street drain, cleaning and moving stuff around the patio, bustling here and there as the pool man worked. She did finally exhaust herself, but still sorted papers for hours that evening. Don't worry, she's not overdoing it. Her body wouldn't let her. Moving around and getting her blood flowing can only help her heal and feel better.
Friday, May 15, 2009
Port Procedure Went Well
Janette is fine. The procedure went very well. So far, no pain or other side effects. She was eating, up and around and had more energy than I'd seen in a while. The procedure itself took 15 minutes. We were at the hospital from 8:45 to 2:30. Amazing.
Wednesday, May 13, 2009
Eating, Weight and Nausea
Today, the scale in the chemo room said Janette is only 4 lbs under her original weight.
The chemo nurses decided Janette is still too nauseous. She's not vomiting but thought of food is yucky and she can't make herself eat much. The nurses say this is still nausea and they prescribed stronger nausea fighting medication to help. Hopefully, this will allow her to eat and drink more and be more comfortable.
As always, we are so appreciative of the care and positive friendliness of all the staff at the Gulfcoast Cancer Institute in Largo.
Janette has minor surgery tomorrow to implant a port for chemotherapy. I'm sorry I forgot to tell y'all about it sooner. We learned today her blood levels are still good and the surgery is on, outpatient at Morton Plant hospital with it's fantastic views of Clearwater Bay.
And for the family who are reading, Aunt Eliska has two checkups this week, eyes and general health. She is serious about watching her diet and salt intake and taking good care of herself. She's even trying some of the health food mixtures I've ordered for Janette. All of you who know her know this is amazing and a real commitment to healing.
The chemo nurses decided Janette is still too nauseous. She's not vomiting but thought of food is yucky and she can't make herself eat much. The nurses say this is still nausea and they prescribed stronger nausea fighting medication to help. Hopefully, this will allow her to eat and drink more and be more comfortable.
As always, we are so appreciative of the care and positive friendliness of all the staff at the Gulfcoast Cancer Institute in Largo.
Janette has minor surgery tomorrow to implant a port for chemotherapy. I'm sorry I forgot to tell y'all about it sooner. We learned today her blood levels are still good and the surgery is on, outpatient at Morton Plant hospital with it's fantastic views of Clearwater Bay.
And for the family who are reading, Aunt Eliska has two checkups this week, eyes and general health. She is serious about watching her diet and salt intake and taking good care of herself. She's even trying some of the health food mixtures I've ordered for Janette. All of you who know her know this is amazing and a real commitment to healing.
Tuesday, May 12, 2009
Continuing with Treatments
Succumbing to pressure from Aunt Eliska and I, Janette is now trying to eat and drink more. As of today, she's lost 6 pounds from the start of treatment but she's eating good, protein meals-- 4 times yesterday and 3 times already today. She's also drinking more of her homeopathic drink and I've notice less coughing and choking as a result.
I forgot to say last post that Janette is less short of breath. The Lung doctor prescribed an inhaler, which seems to be working.
Janette is more tired, that's normal with the radiation, and is having pain in her shoulder, that's not so normal.
We next see the oncologist March 20.
I forgot to say last post that Janette is less short of breath. The Lung doctor prescribed an inhaler, which seems to be working.
Janette is more tired, that's normal with the radiation, and is having pain in her shoulder, that's not so normal.
We next see the oncologist March 20.
Saturday, May 9, 2009
Not much change
Janette's symptoms and reactions to treatment haven't change much since I last wrote. Her pain level is much lower. If she takes her nausea medication, she's much less nauseous and can eat. She's been coughing and choking a little more but she also hasn't been drinking as much of her homeopathic cocktail. Right now she needs to do more, eat more and drink more. But, of course, doing so is not easy with chemotherapy and radiation.
And again, Janette thanks everyone for your cards and emails.
And again, Janette thanks everyone for your cards and emails.
Monday, May 4, 2009
Radiation and Chemo Effects
On the positive, Janette's leg and back pain is much better and her coughing is daily but infrequent. Less pain is very, very positive. On the negative, the side effects have arrived. She doesn't want to eat. The smell of food (particularly, not her food) is making her nauseous in a strange way. The radiation has somehow caused her to breathe more shallowly and feel short of breath. Fortunately, she is not nauseous on eating and can eat. She's sleeping in the sewing room away from the kitchen and can escape the smells. And she really isn't short of breath and has very good oxygen saturation.
I haven't been to a regular American doctor in 10 years. Well, last year we had an immediate care center visit for a very high fever. The quality of care seemed much higher than I remembered. Has there been a change in health care philosophy in the U.S. or was I just gone so long that I forgot?
My point of all this is the level of concern and care from all the doctors, nurses, aides and technicians Janette sees is wonderful. Today at radiation, I stopped the radiation nurse in the hall to talk about those side effects. She immediately had time for us, did tests, consulted with the chemo nurses in another part of the building, called the doctor at the other office (who then consulted on the phone with the lung doctor, who was home sick with the flu), and then spent more time talking and listening to me while Janette received her radiation treatment. After the treatment, Janette was a little dizzy. So the nurse got a wheelchair, wheeled us over to the chemo room and nurses, stayed with us to talk about Janette's nausea, got us samples of anti-nausea medication (meanwhile the chemo nurse is automatically calling in a prescription to our pharmacy because they already have the number on file,) and then wheeled us out the door all the way to the car, the whole time with the patience and calmness and focus as if we were her only patient (we weren't).
And then the lung doctor: he's home with the flu, but he consults with the radiation doctor and decides he wants to see Janette as soon as possible. When I called his office, his schedule is packed and we're a bit concerned about the flu and chemo. So, they text-message him at home and he calls them back and we have a Thursday morning appointment. We could have had tomorrow, he would have come in to see her then, but with the flu we put it off a few days.
It's just that everyone seems to truly care about her health and put all his effort into getting her the best care possible. I am very grateful and Janette spends a relatively short amount of time in physical distress.
The anti-nausea medication seems to be working. We got a pressed Cuban sandwich to go after radiation and she just came out of her room to eat more of the leftovers. Great news!
I haven't been to a regular American doctor in 10 years. Well, last year we had an immediate care center visit for a very high fever. The quality of care seemed much higher than I remembered. Has there been a change in health care philosophy in the U.S. or was I just gone so long that I forgot?
My point of all this is the level of concern and care from all the doctors, nurses, aides and technicians Janette sees is wonderful. Today at radiation, I stopped the radiation nurse in the hall to talk about those side effects. She immediately had time for us, did tests, consulted with the chemo nurses in another part of the building, called the doctor at the other office (who then consulted on the phone with the lung doctor, who was home sick with the flu), and then spent more time talking and listening to me while Janette received her radiation treatment. After the treatment, Janette was a little dizzy. So the nurse got a wheelchair, wheeled us over to the chemo room and nurses, stayed with us to talk about Janette's nausea, got us samples of anti-nausea medication (meanwhile the chemo nurse is automatically calling in a prescription to our pharmacy because they already have the number on file,) and then wheeled us out the door all the way to the car, the whole time with the patience and calmness and focus as if we were her only patient (we weren't).
And then the lung doctor: he's home with the flu, but he consults with the radiation doctor and decides he wants to see Janette as soon as possible. When I called his office, his schedule is packed and we're a bit concerned about the flu and chemo. So, they text-message him at home and he calls them back and we have a Thursday morning appointment. We could have had tomorrow, he would have come in to see her then, but with the flu we put it off a few days.
It's just that everyone seems to truly care about her health and put all his effort into getting her the best care possible. I am very grateful and Janette spends a relatively short amount of time in physical distress.
The anti-nausea medication seems to be working. We got a pressed Cuban sandwich to go after radiation and she just came out of her room to eat more of the leftovers. Great news!
Saturday, May 2, 2009
Phone Calls
We've been getting more phone calls asking about Janette's health. Thank you everyone for your care and concern and your good wishes and hopes. We also realized we weren't clear enough about why we started this blog.
Everyone knows now that Janette doesn't talk very well and most folks have not been expecting to talk with her. I don't mind talking. I rather talk than write. But, hearing me describe her current state and hearing me explain the what and where of the cancer was overhelming for Janette. She realized early on that if she wanted to stay positive, she couldn't listen to me have those phone calls. That's why we started this blog, so I could update everyone silently.
If you wish to call to say hi to Janette and briefly say you're thinking of her, that would be fine. Please understand she's beginning to feel unwell from her treatments and may not be able to take your call. Also please understand that talking on the phone is extra tiring for her. With her voice box not working right, she must use lots of extra energy to get her voice out.
Understanding all that, a quick call that's not about her health would be fine.
Janette also realizes she hasn't answered many emails. She does like reading what you write and appreciates the contact. Sitting at the computer is not comfortable right now and looking at the screen is hurting her eyes. She likes reading her email and looking at links people send and reading your funny stories. Please don't take her silence as disinterest. She is very grateful.
So, thank you again to everyone for your care, love, hope and email connection.
Cathy and Janette
Everyone knows now that Janette doesn't talk very well and most folks have not been expecting to talk with her. I don't mind talking. I rather talk than write. But, hearing me describe her current state and hearing me explain the what and where of the cancer was overhelming for Janette. She realized early on that if she wanted to stay positive, she couldn't listen to me have those phone calls. That's why we started this blog, so I could update everyone silently.
If you wish to call to say hi to Janette and briefly say you're thinking of her, that would be fine. Please understand she's beginning to feel unwell from her treatments and may not be able to take your call. Also please understand that talking on the phone is extra tiring for her. With her voice box not working right, she must use lots of extra energy to get her voice out.
Understanding all that, a quick call that's not about her health would be fine.
Janette also realizes she hasn't answered many emails. She does like reading what you write and appreciates the contact. Sitting at the computer is not comfortable right now and looking at the screen is hurting her eyes. She likes reading her email and looking at links people send and reading your funny stories. Please don't take her silence as disinterest. She is very grateful.
So, thank you again to everyone for your care, love, hope and email connection.
Cathy and Janette
Friday, May 1, 2009
Pain Better
Janette's leg pain is better now. I assume everything she is taking and having done is making a difference. She also decided to move more and fear less the potential of pain. It would zap her sort of randomly and that caused tension. Also, Aunt Eliska and I are letting her do more for herself and she feels up do doing more. And on and on it goes in a positive spirial of more activity and less pain.
I, Cathy, am also doing better. I was very tired all the time, mostly from stress and tension; I wasn't doing that much work. Now I seem to have caught up with myself and what is happening and have found some of my own rhythm. Of course both Janette and Aunt Eliska have their own strong rhythm: Let's do it now! So, I don't have much of a chance keeping mine.
Slowly, we're catching up on the needed house maintenance. William has helped and Aunt Eliska, when she comes over, seems to have more energy than I. I pace myself, and so does Janette. You'll have to ask Aunt Eliska what she does. Tomorrow, the pool! And maybe some mopping I've been putting off.
By the way, Janette and Eliska do enjoy reading your comments. So, keep them coming! And if anyone has a good picture of Janette, please send it.
And "Hey" to Uncle Carroll and Amanda. We're enjoying your blog, too!
Next appts: a free weekend! Radiation resumes Monday morning. Chemo each Wednesday.
I, Cathy, am also doing better. I was very tired all the time, mostly from stress and tension; I wasn't doing that much work. Now I seem to have caught up with myself and what is happening and have found some of my own rhythm. Of course both Janette and Aunt Eliska have their own strong rhythm: Let's do it now! So, I don't have much of a chance keeping mine.
Slowly, we're catching up on the needed house maintenance. William has helped and Aunt Eliska, when she comes over, seems to have more energy than I. I pace myself, and so does Janette. You'll have to ask Aunt Eliska what she does. Tomorrow, the pool! And maybe some mopping I've been putting off.
By the way, Janette and Eliska do enjoy reading your comments. So, keep them coming! And if anyone has a good picture of Janette, please send it.
And "Hey" to Uncle Carroll and Amanda. We're enjoying your blog, too!
Next appts: a free weekend! Radiation resumes Monday morning. Chemo each Wednesday.
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