The nurse said that the prognosis isn't good. Her pulse is weak, her temperature is low, and with her respiratory rate so high, the signs are all there.
The new prognosis: Any Time Now.
Thursday, May 14, 2009
Reports from the nurse
Respiration rate is 40
PTINR number is 4.0.
Both of these are too high. She's bruising easily, she's tiring herself out breathing too hard, and the nurse is talking to both the anticoagulation clinic and the primary doctor to see if she can get her oxycodone dosage raised.
PTINR number is 4.0.
Both of these are too high. She's bruising easily, she's tiring herself out breathing too hard, and the nurse is talking to both the anticoagulation clinic and the primary doctor to see if she can get her oxycodone dosage raised.
Exhaustion
It's been a tough morning. Mom couldn't sleep, which meant that I couldn't sleep either - she woke up every two or three hours.
She's struggling today. Her breath comes in heaving gasps, and she's tired. Eating makes her tired, sitting up makes her tired, and we'll see what happens when the nurse comes by today to see what she can do.
She's struggling today. Her breath comes in heaving gasps, and she's tired. Eating makes her tired, sitting up makes her tired, and we'll see what happens when the nurse comes by today to see what she can do.
Wednesday, May 13, 2009
Improvement
Not much to report today. She's feeling better, which is good but not great - less puking, less coughing.
The best advice we got earlier today was to stick some juice boxes in the freezer, for when she's coughing - we can take that, give it to her, and it not only eases the coughing, but it gets her used to food again, bit by bit. We'll see how long this lasts. Nurse is back tomorrow, we'll see how things go.
The best advice we got earlier today was to stick some juice boxes in the freezer, for when she's coughing - we can take that, give it to her, and it not only eases the coughing, but it gets her used to food again, bit by bit. We'll see how long this lasts. Nurse is back tomorrow, we'll see how things go.
Tuesday, May 12, 2009
A bad day
Yesterday was a good day. Today was not. Mom kicked Dad out of the room at lunch for eating shrimp because her appetite died again - the smell of shrimp made her nauseous.
She's thrown up twice today and has been short of breath the whole time. The Oxycodone has eased the pain in her chest a bit, but the act of sitting up to go to the bathroom left her gasping for breath a few minutes ago. Then, after she got back on the bed, her chest started heaving and she threw up for the second time.
I hope that tomorrow is a good day.
She's thrown up twice today and has been short of breath the whole time. The Oxycodone has eased the pain in her chest a bit, but the act of sitting up to go to the bathroom left her gasping for breath a few minutes ago. Then, after she got back on the bed, her chest started heaving and she threw up for the second time.
I hope that tomorrow is a good day.
The schedule
The hospice nurse will come 2-3 times a week, and a social worker will come by twice a week to bathe her and make sure she stays clean.
The nurse reiterated that someone should be near at hand at all times, but Mom's being stubborn and doesn't want to hire a part-time caregiver. She also refused to take her cough medicine or her inhalant until the nurse and I told her to, so we'll see how this pans out. Otherwise, it'll be Dad on the day shift and me on the night shift, with a few hours of leeway to let Dad get some sleep. Mom had him running around starting at 5 this morning.
The nurse reiterated that someone should be near at hand at all times, but Mom's being stubborn and doesn't want to hire a part-time caregiver. She also refused to take her cough medicine or her inhalant until the nurse and I told her to, so we'll see how this pans out. Otherwise, it'll be Dad on the day shift and me on the night shift, with a few hours of leeway to let Dad get some sleep. Mom had him running around starting at 5 this morning.
From here on
Mom's still in a lot of pain, and this is the plan as put forth by the hospice nurse:
Mom is going to be on Oxycodone, a mild narcotic, to help her with her breathing and the pain. 0.1 ml for mild pain, 0.25 for moderate pain, and 0.5 (the maximum dosage) for severe pain.
If she becomes anxious or agitated, we're going to use Ativan to calm her down.
We will use Atropine to help clear her mucus (I think).
We're getting Tylenol in tablet and suppository form to help fight any fevers she gets.
All of this is in addition to the medications she already has at hand - Amoxicillin as an antibiotic, Albuterol as an inhalant to help the shortness of breath, Coumadin/Warfarin to fight the thrombosis in her leg, and the extra-strength cough syrup.
Mom is going to be on Oxycodone, a mild narcotic, to help her with her breathing and the pain. 0.1 ml for mild pain, 0.25 for moderate pain, and 0.5 (the maximum dosage) for severe pain.
If she becomes anxious or agitated, we're going to use Ativan to calm her down.
We will use Atropine to help clear her mucus (I think).
We're getting Tylenol in tablet and suppository form to help fight any fevers she gets.
All of this is in addition to the medications she already has at hand - Amoxicillin as an antibiotic, Albuterol as an inhalant to help the shortness of breath, Coumadin/Warfarin to fight the thrombosis in her leg, and the extra-strength cough syrup.
I'm here now
I had to talk to the hospice home care nurse and the social worker kind of at the same time, but things are a bit more calmed down now. I convinced Mom that her Albuterol was there for a reason and she should use it, and now I'm trying to get Dad to lie down for just a few minutes. More updates after we talk to the nurse.
short of breath this morning
She woke up at 5am this morning coughing, which caused her to be short of breath and she had to go on oxygen for a little while. They are trying to call the hospital social worker to see what the proper action is for such events.
Monday, May 11, 2009
all settled in
Yes, she came home at 6:10pm, and is now all settled into her new bed. At first she didn't like the plastic smell, so we had to put a thin blanket over the inflated plastic layer, and it's okay now.
She is eating much better now. At dinner, she finished one small bowl of pho. Then at 9:00pm, she was digging into a yogurt and had asked Chu Lu to steam her up some asparagus. She was happy that she is starting to feel hungry.
On a side note, the hospital bed needs extra long twin sheets, and she was lamenting that she had given away Ve and Ga's old college sheets, thinking they would no longer be needed. Score one for the hoarders! Just kidding mom and aunties -- stop hoarding, it's not worth it!
She is eating much better now. At dinner, she finished one small bowl of pho. Then at 9:00pm, she was digging into a yogurt and had asked Chu Lu to steam her up some asparagus. She was happy that she is starting to feel hungry.
On a side note, the hospital bed needs extra long twin sheets, and she was lamenting that she had given away Ve and Ga's old college sheets, thinking they would no longer be needed. Score one for the hoarders! Just kidding mom and aunties -- stop hoarding, it's not worth it!
Better today!
Spoke to Mom & Ga and it sounds like she's doing better today. No fever, cough is improving...sounds like the new antibiotics are doing their job.
Dad is at home awaiting the new bed, and as soon as that arrives, Mom gets to go home! Ga is going to get rid of Bac Hanh's bed on Craigslist...the new one is bigger and has more buttons. See?? Hoarding does not always pay off :)
A nurse will be coming to the house on Thursday to draw blood. Mom will probably go off the Koumadin (blood thinners) in a month or two...and they will think about draining the fluid (chest tube) at that time. While Mom is still breathing at 94-95% capacity, they will also send her home with an oxygen machine in the case that her breathing becomes more labored.
We will need to keep a close eye on her while she is at home for shortness of breath and blood clots.
Dad is at home awaiting the new bed, and as soon as that arrives, Mom gets to go home! Ga is going to get rid of Bac Hanh's bed on Craigslist...the new one is bigger and has more buttons. See?? Hoarding does not always pay off :)
A nurse will be coming to the house on Thursday to draw blood. Mom will probably go off the Koumadin (blood thinners) in a month or two...and they will think about draining the fluid (chest tube) at that time. While Mom is still breathing at 94-95% capacity, they will also send her home with an oxygen machine in the case that her breathing becomes more labored.
We will need to keep a close eye on her while she is at home for shortness of breath and blood clots.
Sunday, May 10, 2009
Spoke to her new hospitalist...
...who is taking over while Dr. Kapadia (sp?) is elsewhere for the week. Since mom is doing well with the antibiotics and has not had a fever since starting the antibiotics, the Dr. said she could potentially go home if she wanted to. Of course, we would have to keep a close eye on her and if her breathing got worse or something starts to swell up, we'd have to bring her in again right away.
I spoke to mom after speaking to the doctor and she does not feel comfortable going home just yet. She wants to stay in the hospital for a bit longer...
Hopefully things clear up soon and she can spend some time at home. I plan to be home June 6-9 (after finals, before my internship starts).
I spoke to mom after speaking to the doctor and she does not feel comfortable going home just yet. She wants to stay in the hospital for a bit longer...
Hopefully things clear up soon and she can spend some time at home. I plan to be home June 6-9 (after finals, before my internship starts).
New oncologist
Mom got a new oncologist today, after her previous one was a no show 4-5 different times. Again, she said we have a choice of IV chemo, which would make her sick and in the hospital all the time...or hospice care at home where she can be most comfortable.
I believe my parents have chosen hospice at home and to pursue thuoc bac. Thank you to everyone who helped prepare the hospital bed for her yesterday. I'm sure it was no small job.
She'll be taking new CTs and X-Rays today to monitor the progress of her lungs. Still no fever and the cough is 60-70% better. So...hopefully that means no chest tube!
I believe my parents have chosen hospice at home and to pursue thuoc bac. Thank you to everyone who helped prepare the hospital bed for her yesterday. I'm sure it was no small job.
She'll be taking new CTs and X-Rays today to monitor the progress of her lungs. Still no fever and the cough is 60-70% better. So...hopefully that means no chest tube!
Yesterday's convo with the doctor
Mom is doing better with the new antibiotics. She hadn't had a fever in 24 hours (didn't even know she had a fever) and mom says her cough is a little bit better. However, her cancer is terminal and we need have realistic expectations. My goal for her is to be happy and comfortable.
The doctor spoke to me about signing mom up for hospice care so that my dad has some help at home and they're not constantly in the hospital. I am leaving that decision up to mom--whether she wants to do chemo or whether she wants to move forward with comfort care. I respect her decision either way.
The doctor will call me again tomorrow with mom's situation and we'll see if we have to do the fluid test. Odds are we will.
The doctor spoke to me about signing mom up for hospice care so that my dad has some help at home and they're not constantly in the hospital. I am leaving that decision up to mom--whether she wants to do chemo or whether she wants to move forward with comfort care. I respect her decision either way.
The doctor will call me again tomorrow with mom's situation and we'll see if we have to do the fluid test. Odds are we will.
Friday, May 8, 2009
Other notes from yesterday's call with the doctor
From the CT/X-rays, Mom may have a partially collapsed lung, which I saw in the original x-ray from the ER visit when I was home. There probably isn't fluid INSIDE her lung but on the outside, which may be what is causing the pneumonia. That's why they want to check the fluids.
Her doctor will call me tomorrow after evaluating how mom does on the new antibiotics...at which time, we may have to do the fluid test. Hopefully that will help her get better if we drain her chest.
Her doctor will call me tomorrow after evaluating how mom does on the new antibiotics...at which time, we may have to do the fluid test. Hopefully that will help her get better if we drain her chest.
Email I sent to Ga & Chi Teo yesterday (May 7)
I spoke to Mom’s doctor today.
They were trying to decide what to do, weighing risks vs benefits, etc. They wanted to check the water in her lungs to see if the fluid is infected. However, they would have to take her off the Koumadin in order to tap the fluids, which would put her temporarily at risk for blood clots. To mitigate that risk, they would put her on an IV blood thinner which has a shorter shelf life, and then a few hours before the procedure, would take her off the IV blood thinners, so there would be a short window where she is at risk for blood clots. Of course, invasive procedures always have inherent risks, especially given her multiple illnesses.
The purpose of this procedure would be to see if her lungs were infected, and if they were, they would have to drain the fluid (basically, insert a chest tube to drain). I can’t remember whether if she had a chest tube they would have her off the blood thinners the entire time.
They were trying to decide what to do, weighing risks vs benefits, etc. They wanted to check the water in her lungs to see if the fluid is infected. However, they would have to take her off the Koumadin in order to tap the fluids, which would put her temporarily at risk for blood clots. To mitigate that risk, they would put her on an IV blood thinner which has a shorter shelf life, and then a few hours before the procedure, would take her off the IV blood thinners, so there would be a short window where she is at risk for blood clots. Of course, invasive procedures always have inherent risks, especially given her multiple illnesses.
The purpose of this procedure would be to see if her lungs were infected, and if they were, they would have to drain the fluid (basically, insert a chest tube to drain). I can’t remember whether if she had a chest tube they would have her off the blood thinners the entire time.
able to eat again
Today's condition seems to be better. Her foot is still swollen, but she finally has an appetite again. They had to try stronger antibiotics for her pneumonia since the first dosage didn't seem to be effective. The newer dosage seems to be working, if her appetite is any indication.
Edit: the antibiotics were indeed working for the pneumonia, but they switched to a stronger one to counter the possibility of an infected lung.
Edit: the antibiotics were indeed working for the pneumonia, but they switched to a stronger one to counter the possibility of an infected lung.
Wednesday, May 6, 2009
Monday, May 4, 2009
It's Pneumonia
No blood clots, thankfully. However, it is pneumonia and she'll be staying in the hospital until that clears up. Hopefully soon!!
Another trip to the ER...and admitted overnight
Mom went in to the ER today after talking to the advice nurse. She felt weaker, was coughing more, and threw up. Her doctor has admitted her and mom will be staying overnight. They've ordered additional CT (even though we still haven't gotten results from the previous one!) and US to figure out what's going wrong.
All my dad said is that the doctor said her lungs "don't look good." Whether that is due to fluid build-up or tumor growth or something else remains to be seen.
All my dad said is that the doctor said her lungs "don't look good." Whether that is due to fluid build-up or tumor growth or something else remains to be seen.
Wednesday, April 29, 2009
Note from my dad
Hom nay bo cho me di thu mau nua,khi ve toi nha , kaiser goi noi stop shot and the pills just take 1/4 because blood was come down to 3.0 .Chan me cung con hoi xung mot it
Translation: they told her to stop taking the anticoagulant shots and only 1/4 of the koumadin pills because her blood tests indicated she didn't need as much anticoagulant. Her foot is still a bit swollen.
Translation: they told her to stop taking the anticoagulant shots and only 1/4 of the koumadin pills because her blood tests indicated she didn't need as much anticoagulant. Her foot is still a bit swollen.
Tarceva
From what I've read about Tarceva, it is rarely a long-term course of treatment. Eventually, the cancer becomes immune to Tarceva and the patient has to move on to something else. In the past, Tarceva was used as a second line treatment, but oncologists have been starting to use it as first line treatment in people whose cancers are genetically responsive to it (which mom's was).
Mom's cancer was responsive to Tarceva at first. The tumors initially shrunk. However, the tumors have grown again (though not spread, thankfully) and the blood clot/bloody cough were thought to be side effects of the Tarceva...so she was taken off the meds. From reading around the internet, there are plenty of other things to try. It just depends on how hard she wants to fight, how much she is willing to suffer, and the quality of life she wants for her remaining time.
Numerous meds/oral chemos I've read about coming out the pharmaceutical companies these days: Avastin, Iressa...the list goes on.
Also, something positive to focus on: http://www.crazysexycancer.com/. I've seen her speak at a sales conference and also on Oprah. She was diagnosed with terminal cancer and given only months to live, but she has survived years. A positive outlook, healthy diet, and exercise have helped her stay alive and healthy today. Her positive outlook is inspiring.
Mom's cancer was responsive to Tarceva at first. The tumors initially shrunk. However, the tumors have grown again (though not spread, thankfully) and the blood clot/bloody cough were thought to be side effects of the Tarceva...so she was taken off the meds. From reading around the internet, there are plenty of other things to try. It just depends on how hard she wants to fight, how much she is willing to suffer, and the quality of life she wants for her remaining time.
Numerous meds/oral chemos I've read about coming out the pharmaceutical companies these days: Avastin, Iressa...the list goes on.
Also, something positive to focus on: http://www.crazysexycancer.com/. I've seen her speak at a sales conference and also on Oprah. She was diagnosed with terminal cancer and given only months to live, but she has survived years. A positive outlook, healthy diet, and exercise have helped her stay alive and healthy today. Her positive outlook is inspiring.
being taken off tarceva
She is being taken off Tarceva because it apparently is no longer working for her. No new course of action decided upon yet.
From Ve:
There are other options…they just need to figure what’s best for her and what her goals are (to fight, or to make the best of her time). Some helpful websites I’ve found regarding other peoples’ experiences and treatments. I bet cancer.org has something too.
http://www.cancercompass.com/message-board/cancers/non-small-cell/1,0,119,54.htm
http://www.nytimes.com/interactive/2009/04/23/health/healthguide/TE_LUNGCANCER.html?ref=health
From Ve:
There are other options…they just need to figure what’s best for her and what her goals are (to fight, or to make the best of her time). Some helpful websites I’ve found regarding other peoples’ experiences and treatments. I bet cancer.org has something too.
http://www.cancercompass.com/message-board/cancers/non-small-cell/1,0,119,54.htm
http://www.nytimes.com/interactive/2009/04/23/health/healthguide/TE_LUNGCANCER.html?ref=health
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