Tuesday, August 30, 2011
Wednesday, October 21, 2009
Chemo has stopped working
It has been a long road and we have moved into Tarceva - chemo in a pill. Her cough is worse. The cancer has metastasized to her liver and they found a new lesion on her brain. Radio Laser surgery on Monday. May be our last holidays together. I can't imagine my life without her.
Came back from being in NY for 5 months to find out the man I had been living with for 9 years had met someone else. Terrific. Don't know how much more I can take...honestly. At the end of my rope and sick of holding on. Why?
Came back from being in NY for 5 months to find out the man I had been living with for 9 years had met someone else. Terrific. Don't know how much more I can take...honestly. At the end of my rope and sick of holding on. Why?
Tuesday, June 16, 2009
Show Me A Calendar to Count Her Days Down...Or Mine!
They did the chest/lung scan with contrast, but the results were not back in time for us to discuss them with the doctor. Just perfect. We'll know more tomorrow. Meanwhile, they don't think the chemo is working and want to try something else - a pill. Brain looks good. Still no "timeline". Mom sleeps 18 - 22 hours a day, so the incessant phone ringing is ridiculous. If she does answer the phone while sleeping, she has no recollection of talking to the person anyway, but they just keep calling to talk to the tired person. I want to change the message to say,"Hi. My mother has cancer and is resting. If you have anything useful to say, leave a message after the beep, otherwise please don't speak. We have caller ID and she will call you back when she feels like talking." Guess not, but fun to think about.
I am beyond exhausted. My honey's dad fell off the roof and broke both of his legs, so when I go home to LA, he will probably be in NC. Don't tell Mom. She gets all confused and wrapped up in shit that doesn't matter. I am leaving either way - if not next week, the week after. I think 4 months is long enough away from home. It's kind of like being on Survivor...for 4 seasons in a row. If she needs full time assisted care, she should be back in the hospital or fork over the money for visiting nurses. I think she just likes having her daughter around all the time even if it's complete hell for me.
Just sitting at her place now waiting for the handyman because she scheduled him at 2pm and will be asleep and not able to hear the door. Whole apartment smelled like a baby diaper because of all the dirty water in the flowers. Fun job. Ain't life grand!! At least it wasn't real poop - lol. Gotta look on the bright side.
I am beyond exhausted. My honey's dad fell off the roof and broke both of his legs, so when I go home to LA, he will probably be in NC. Don't tell Mom. She gets all confused and wrapped up in shit that doesn't matter. I am leaving either way - if not next week, the week after. I think 4 months is long enough away from home. It's kind of like being on Survivor...for 4 seasons in a row. If she needs full time assisted care, she should be back in the hospital or fork over the money for visiting nurses. I think she just likes having her daughter around all the time even if it's complete hell for me.
Just sitting at her place now waiting for the handyman because she scheduled him at 2pm and will be asleep and not able to hear the door. Whole apartment smelled like a baby diaper because of all the dirty water in the flowers. Fun job. Ain't life grand!! At least it wasn't real poop - lol. Gotta look on the bright side.
Monday, June 15, 2009
...and then I cried.
A friend of my mother sent this to me this almost immediately after I sent the letter to her Doctors.
...and then I cried.
On this day of your life, dear friend, I believe God wants you to know...
....that medical procedures are nothing to be afraid of when God is on your side.
And that, of course, is always. So, since God is on your side, nothing can go wrong. Even if you should die, nothing will have gone wrong. Death is not the end of anything. It is simply your Continuation Day.
With regard to medicine then, and to all medical matters, follow your heart, listen to your soul, get good advice, then do what feels intuitively right.
You know exactly why you received this message today.
Love, Your Friend....
...and then I cried.
Letter to the Doctors
Wanted to give you a brief update about my mother's condition. May I preface this summation with the fact I was in Washington, DC, most of last week, but upon my return my mother was feeling significantly worse.
She is sleeping 18 - 22 hours a day and can barely sit up from a prone position on the couch without assistance. She decided to stop taking the Ambien completely and had one good day last Wednesday where she walked to the corner with a nurse for a manicure and pedicure, but other than that, it has been a very rough 2 weeks. She has almost no hunger and some mild nausea occasionally in the morning. At times, she hears "crackling" in her left ear, but her hearing is bad and she really does not want to increase her steroid dosage either. I would like her to get a haring aid, but she refuses.
We both have concerns about the shaking of her hands and the weakness in her whole upper body. If she sits up and leans on one arm, the arm shakes and her hands now visibly shake most of the time.
We are seriously considering refusing this 3rd round of chemotherapy because her quality of life is basically non-existent. Hopefully, we can discuss some other options.
I am making a list of all the vitamins she is currently taking in order to be sure they are not counteracting with any of her medications. I also wanted to ask if we could decrease the Keppra to once at night instead of 500mg twice daily?
Sorry to be the bearer of "not so great" news on a Monday morning, but thought I'd just give you a basic idea about what's up before we saw you guys tomorrow.
She is sleeping 18 - 22 hours a day and can barely sit up from a prone position on the couch without assistance. She decided to stop taking the Ambien completely and had one good day last Wednesday where she walked to the corner with a nurse for a manicure and pedicure, but other than that, it has been a very rough 2 weeks. She has almost no hunger and some mild nausea occasionally in the morning. At times, she hears "crackling" in her left ear, but her hearing is bad and she really does not want to increase her steroid dosage either. I would like her to get a haring aid, but she refuses.
We both have concerns about the shaking of her hands and the weakness in her whole upper body. If she sits up and leans on one arm, the arm shakes and her hands now visibly shake most of the time.
We are seriously considering refusing this 3rd round of chemotherapy because her quality of life is basically non-existent. Hopefully, we can discuss some other options.
I am making a list of all the vitamins she is currently taking in order to be sure they are not counteracting with any of her medications. I also wanted to ask if we could decrease the Keppra to once at night instead of 500mg twice daily?
Sorry to be the bearer of "not so great" news on a Monday morning, but thought I'd just give you a basic idea about what's up before we saw you guys tomorrow.
Monday, June 1, 2009
Chemotherapy Exhaustion
My mother had a very rough weekend. Simply exhausted and mild nausea Thursday, Friday, Saturday and Sunday. The Compozine was helpful and she never actually threw up, but she is downright miserable. She is sleeping about 12 - 14 hours at night and has trouble staying awake during the day. Her hearing has gotten slightly worse. It's hard to tell because she is listening to everything so loudly, you are constantly in competition with music or TV. She says that one of her ears is now completely blocked. No headache or dizziness. She is eating, but very lightly - yogurt with fruit, strawberry smoothies, half a turkey sandwich with avocado, cereal, etc.
We did go for a brain MRI with contrast on Friday at 55th between 1st Ave and Sutton Place. Joe said we would have the results in a few days. I know we had also discussed a Chest scan, which I am sure is necessary, but I don't think she is up to going anywhere right now. Maybe by the end of the week. She wanted to know if the chest scan would be a PET/CT scan?
This is almost the exact same time she "bottomed out" after the first round of chemo. Hopefully, she will feel better in the next couple of days. If not, I would like to bring her in for a re-evaluation on Thursday or Friday if possible. Do we know how many more cycles of Chemotherapy she will have to endure?
Please let me know if there is absolutely anything I can do to make her feel better. I try to explain that the exhaustion is par for the course, but her short term memory (and denial) are keeping that from the forefront of her mind. I feel absolutely useless to her right now.
We did go for a brain MRI with contrast on Friday at 55th between 1st Ave and Sutton Place. Joe said we would have the results in a few days. I know we had also discussed a Chest scan, which I am sure is necessary, but I don't think she is up to going anywhere right now. Maybe by the end of the week. She wanted to know if the chest scan would be a PET/CT scan?
This is almost the exact same time she "bottomed out" after the first round of chemo. Hopefully, she will feel better in the next couple of days. If not, I would like to bring her in for a re-evaluation on Thursday or Friday if possible. Do we know how many more cycles of Chemotherapy she will have to endure?
Please let me know if there is absolutely anything I can do to make her feel better. I try to explain that the exhaustion is par for the course, but her short term memory (and denial) are keeping that from the forefront of her mind. I feel absolutely useless to her right now.
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