Ok, first today's news. Bridget had labs: Hemoglobin up to 10.9!!! and the elevated liver enzymes are down 500 points!!! White count is responding to the white blood cell boosting shot- 7.3. She has color to her cheeks, and fingers, and has more energy!
Port access is in- she is good to get chemo- or so we thought.
The CA center sent us "upstairs" to get chemo. We went up to 5th floor. They were puzzled as to why we were there. Some investigation- they had no orders, and we were told we were supposed to go to Outpatient clinic for the chemo. Downstairs we go.
After a 20 minute wait to get registered- (some daft woman/patient was directing other people to go ahead of us- which I quickly put the kibosh too- turns out she was not paying attention to the people behind her (us) ) , we get registered. The outpatient nurse comes flying out- she does not have us on her schedule, she does not have orders..... can we do this tommorrow?
I have no idea why CA center would send us upstairs and not tell us we aren't scheduled. I believe it may be due to communication failures and I hope not but maybe the fact that she does not have insurance.
So. Chemo is tomorrow- won't affect her recovery at all. Yes, mom, I have a call into the CA center to find out what the deal is. Everything happens for a reason- we shall see what the reason is- maybe St James will have pharmacy meltdown or something.
Anyway, its tomorrow.
Anyway, with the increased Hemoglobin and decreased liver enzymes, Bridget has not stopped smiling since seeing Dr. Hueftle. She is so happy. She is even cleared to do one day of dishes!
She has more energy, is talking about playing the Wii (something she has not talked about while sick), getting to see movies in the summer, and getting outside when it is nicer. All good things to hear!
Thanks for checking in.
Denise
Monday, February 23, 2009
Monday, February 16, 2009
Great news!!
Bridget had her weekly lab check and visit with Dr. Hueftle. She was a "Little" anxious about the blood draw from her port, but finally calmed down. Blood draw went fine.
She had a weigh in - lost 2.5 lbs. I told her (kiddingly) she did not have to match me pound for pound while I am in Weight Watchers. She rolled her eyes- I thought it was funny!
Saw the nurse. No issues with her appetite- In fact, she is eating everything I make for her and sometimes more. She requested spaghetti the other day and had two helpings. We found a new topping for spaghetti- feta cheese sprinkled on top. Yummy! She had fajita tacos (thanks Paiger) the other day and ate every bit (this was when her tummy was doing handstands and somersaults). So I don't think the chemo affected her appetite. Tonite- she wants Tacos. No mouth sores yet. Nausea was handled quite well with Compazine. She does have some hair falling out (when I brush it, comb it, wash it), but that has evened off some- although Nancy the chemo nurse thinks she will lose more. No fever, blood pressure good (a little high from the anxiety of a port stick), heart rate good and oxygen level good.
Dr. Hueftle saw her- did his exam. Her neck nodes have shrunk significantly. He says she almost looks symmetrical now. I am thinking her nodes in the lungs are down as well, cause her cough is gone. He also said her spleen seemed smaller on this exam as well. Her hemoglobin is up to 9.6!! from 9.1, and that is without iron. So all in all, she is responding to chemo. She is so excited!!
Next chemo is next Monday! I did ask if it was ok for her to take the compazine the night before the 48 hour anti nausea med wears off- they said this was ok. So we'll try that in hopes of getting her stomach to stop the somersaults.
She is actually smiling and I could see a HUGE weight leap off her shoulders, with the news about the smaller nodes. (She was projecting and thinking things were not going to respond as much as they did).
So the prayers and good thoughts are working- don't stop now- keep up all the good work, thoughts and prayers!!
Thank you So much!
She had a weigh in - lost 2.5 lbs. I told her (kiddingly) she did not have to match me pound for pound while I am in Weight Watchers. She rolled her eyes- I thought it was funny!
Saw the nurse. No issues with her appetite- In fact, she is eating everything I make for her and sometimes more. She requested spaghetti the other day and had two helpings. We found a new topping for spaghetti- feta cheese sprinkled on top. Yummy! She had fajita tacos (thanks Paiger) the other day and ate every bit (this was when her tummy was doing handstands and somersaults). So I don't think the chemo affected her appetite. Tonite- she wants Tacos. No mouth sores yet. Nausea was handled quite well with Compazine. She does have some hair falling out (when I brush it, comb it, wash it), but that has evened off some- although Nancy the chemo nurse thinks she will lose more. No fever, blood pressure good (a little high from the anxiety of a port stick), heart rate good and oxygen level good.
Dr. Hueftle saw her- did his exam. Her neck nodes have shrunk significantly. He says she almost looks symmetrical now. I am thinking her nodes in the lungs are down as well, cause her cough is gone. He also said her spleen seemed smaller on this exam as well. Her hemoglobin is up to 9.6!! from 9.1, and that is without iron. So all in all, she is responding to chemo. She is so excited!!
Next chemo is next Monday! I did ask if it was ok for her to take the compazine the night before the 48 hour anti nausea med wears off- they said this was ok. So we'll try that in hopes of getting her stomach to stop the somersaults.
She is actually smiling and I could see a HUGE weight leap off her shoulders, with the news about the smaller nodes. (She was projecting and thinking things were not going to respond as much as they did).
So the prayers and good thoughts are working- don't stop now- keep up all the good work, thoughts and prayers!!
Thank you So much!
Wednesday, February 11, 2009
Post chemo day
Well the antinausea med that worked for 48 hours wore off, and with that- came the upset stomach. So we did not get by this time totally unscathed. Bridget has Compazine to take to help out with the upset stomach. She was trying to be strong and not take it, but I convinced her to take it this morning so that she can get a handle on the upset.
She had read that sometimes with the first chemo dose there is not a reaction, it has to "build up" in one's system. I think she was thinking she was going to go that route.
Yesterday, she got the White Blood cell booster shot. That will cause some bone pain as the shot stimulates cell production.
And of course, Social Security call did not happen. I called them after waiting a half an hour. They gave me the excuse that my phone number was disconnected and the letter returned. What did happen was that they were unable to follow clear instructions to call my cell number as long distance. They did not and did not try again. I left a voice mail message asking the manager of the Butte office to call me back- she did not. So I will call her daily until she does. That is one reason why government is the way it is. Inefficient and inability to follow instructions.
Anyway, I am at work today. Checking on Bridget by phone frequently.
Denise
She had read that sometimes with the first chemo dose there is not a reaction, it has to "build up" in one's system. I think she was thinking she was going to go that route.
Yesterday, she got the White Blood cell booster shot. That will cause some bone pain as the shot stimulates cell production.
And of course, Social Security call did not happen. I called them after waiting a half an hour. They gave me the excuse that my phone number was disconnected and the letter returned. What did happen was that they were unable to follow clear instructions to call my cell number as long distance. They did not and did not try again. I left a voice mail message asking the manager of the Butte office to call me back- she did not. So I will call her daily until she does. That is one reason why government is the way it is. Inefficient and inability to follow instructions.
Anyway, I am at work today. Checking on Bridget by phone frequently.
Denise
Monday, February 9, 2009
Chemo day !!!
Well, Chemo day happened!! And what a LONG one it was!
We started at 8:45 in the MD office. They took vitals, checked the port, put the infusion extension cath in, answered questions and then sent us up to 5th floor for the infusion. More vitals, we got situated in the room. The nurse started with pre-meds (anti nausea med IV, Benadryl, Decadron (to lessen allergic reactions), and Ativan to help with anxiety level. These were given -oh about 1030. Nothing happening from then to noon- They had to mix drugs according to her weight etc. At noon, I was starving (having eaten at 5:30). I took a quick trip to Wendy's, by the time I got back, the first one was in.
The second chemo med (there are four) was a test dose to check for allergic reactions. We had to wait an hour after that test dose. Since no reaction- they gave that med- that took about 20 minutes. It's about 2 now. The third med took about 5 minutes to give. Then a wait for the fourth med. That one started about 4 and went in over an hour. Then the nurse held us there to make sure nothing bad happened, for an hour.
So our odyssey started at 8:45 and we left at 6. So much for the quick four hours I thought it would be.
Good thing is that she had no reactions, the Ativan relaxed her enough to take some power cat naps (she needed it cause she did not sleep well last night), and so far --- no nausea!. We have two nausea meds on hand to help in case she does get sick. Had to go fill one at Wally World, which took another 20 minutes. So round about 7:15 we had dinner. THANK YOU Aunt Miriam for the wonderful pasty!!!!! and for the fact I did not have to worry about what to fix for dinner after that long day!! It hit the spot!
Tomorrow, she has to go get a shot to boost her white blood cell count after chemo, and we have to talk to Social Security to get her set up with assistance and Medicaid. Everyone keep your fingers crossed.
Thanks everyone for all your help, your prayers and your thoughts!
Denise
We started at 8:45 in the MD office. They took vitals, checked the port, put the infusion extension cath in, answered questions and then sent us up to 5th floor for the infusion. More vitals, we got situated in the room. The nurse started with pre-meds (anti nausea med IV, Benadryl, Decadron (to lessen allergic reactions), and Ativan to help with anxiety level. These were given -oh about 1030. Nothing happening from then to noon- They had to mix drugs according to her weight etc. At noon, I was starving (having eaten at 5:30). I took a quick trip to Wendy's, by the time I got back, the first one was in.
The second chemo med (there are four) was a test dose to check for allergic reactions. We had to wait an hour after that test dose. Since no reaction- they gave that med- that took about 20 minutes. It's about 2 now. The third med took about 5 minutes to give. Then a wait for the fourth med. That one started about 4 and went in over an hour. Then the nurse held us there to make sure nothing bad happened, for an hour.
So our odyssey started at 8:45 and we left at 6. So much for the quick four hours I thought it would be.
Good thing is that she had no reactions, the Ativan relaxed her enough to take some power cat naps (she needed it cause she did not sleep well last night), and so far --- no nausea!. We have two nausea meds on hand to help in case she does get sick. Had to go fill one at Wally World, which took another 20 minutes. So round about 7:15 we had dinner. THANK YOU Aunt Miriam for the wonderful pasty!!!!! and for the fact I did not have to worry about what to fix for dinner after that long day!! It hit the spot!
Tomorrow, she has to go get a shot to boost her white blood cell count after chemo, and we have to talk to Social Security to get her set up with assistance and Medicaid. Everyone keep your fingers crossed.
Thanks everyone for all your help, your prayers and your thoughts!
Denise
Thursday, February 5, 2009
Hi everyone-
Today is Feb 5th, supposed to be chemo day, but is not. They apparently were waiting for Medicaid to be confirmed, since it was not, they did not go forward with chemo. Spent the morning at the Chemo center talking with the doc. Apparently, they did not have all of the four meds at the center anyway today. (I think they were waiting to order it before confirming we had a payee source-which we don't as yet). I spent part of the afternoon on the phone with Medicaid only to be told she doesn't qualify unless she is over 65, blind, pregnant, has kids, or is disabled. To be disabled, Social Security makes that determination. That phone call happens Tuesday.
Chemo is set to happen Monday and it will, even if I have to pay Out of pocket to make it happen. I will not take no for an answer. Like Bridget said today- since when did healthcare stop being about caring for sick people and turn into a business. AND you know what, she is right. It has.
We learned the results of the bone marrow and PET scan. She has it in one side of her bone marrow- the left side. The PET scan basically confirms that it is in her neck, chest, abdomen and half of her bones. This makes her a Stage 4 B. Stage 4 means that it can be found in more than one organ system, The B means she exhibits symptoms- night sweats, cough, anemia, Shortness of Breath.... The cure rate is still 80% for Stage 4.
As you might figure, we are both down about this news. She more than I, to her it seems like God is not answering her prayers. I, being the nurse person that I am, was expecting something when I saw how anemic she was and when he asked for the bone marrow. But in her presence, I am a rock. It scares her when she sees me breakdown, and I see the fear in her eyes. SO, I am a rock.
We are moved back to Butte, and somewhat settled in the house. I have rooms set up but live among boxes. Maybe this weekend I can get boxes sorted and put away. I still have to clean the apartment in Helena Saturday, that should not take long. Leaving me part of Sat and Sunday to get into boxes.
Zach and I are adjusting to the "bedroom community commute", between Butte and Helena. I figure it will take another week to get bodies adjusted to the earlier schedule. We live for days off and weekends.
I will be here in Butte on Monday for Bridget's first chemo. I can work from home, thank God for great Bosses and co-workers who are so understanding.
Speaking of being understanding, I don't have enough words to thank everyone that helped with the move. We are so blessed to have such a great Family and great friends as well. Thank you from the bottom of my heart for the move help, the cleaning crew, the meals for us... I SO appreciate each and every one of you!!! I can't thank you enough and I OWE you all big time.
Well, that is it for now.
Posting this, and not calling because Qwest set up my long distance screwy and it will take days to get it reset.
Love to you all.
Denise, Bridget and Zach
Today is Feb 5th, supposed to be chemo day, but is not. They apparently were waiting for Medicaid to be confirmed, since it was not, they did not go forward with chemo. Spent the morning at the Chemo center talking with the doc. Apparently, they did not have all of the four meds at the center anyway today. (I think they were waiting to order it before confirming we had a payee source-which we don't as yet). I spent part of the afternoon on the phone with Medicaid only to be told she doesn't qualify unless she is over 65, blind, pregnant, has kids, or is disabled. To be disabled, Social Security makes that determination. That phone call happens Tuesday.
Chemo is set to happen Monday and it will, even if I have to pay Out of pocket to make it happen. I will not take no for an answer. Like Bridget said today- since when did healthcare stop being about caring for sick people and turn into a business. AND you know what, she is right. It has.
We learned the results of the bone marrow and PET scan. She has it in one side of her bone marrow- the left side. The PET scan basically confirms that it is in her neck, chest, abdomen and half of her bones. This makes her a Stage 4 B. Stage 4 means that it can be found in more than one organ system, The B means she exhibits symptoms- night sweats, cough, anemia, Shortness of Breath.... The cure rate is still 80% for Stage 4.
As you might figure, we are both down about this news. She more than I, to her it seems like God is not answering her prayers. I, being the nurse person that I am, was expecting something when I saw how anemic she was and when he asked for the bone marrow. But in her presence, I am a rock. It scares her when she sees me breakdown, and I see the fear in her eyes. SO, I am a rock.
We are moved back to Butte, and somewhat settled in the house. I have rooms set up but live among boxes. Maybe this weekend I can get boxes sorted and put away. I still have to clean the apartment in Helena Saturday, that should not take long. Leaving me part of Sat and Sunday to get into boxes.
Zach and I are adjusting to the "bedroom community commute", between Butte and Helena. I figure it will take another week to get bodies adjusted to the earlier schedule. We live for days off and weekends.
I will be here in Butte on Monday for Bridget's first chemo. I can work from home, thank God for great Bosses and co-workers who are so understanding.
Speaking of being understanding, I don't have enough words to thank everyone that helped with the move. We are so blessed to have such a great Family and great friends as well. Thank you from the bottom of my heart for the move help, the cleaning crew, the meals for us... I SO appreciate each and every one of you!!! I can't thank you enough and I OWE you all big time.
Well, that is it for now.
Posting this, and not calling because Qwest set up my long distance screwy and it will take days to get it reset.
Love to you all.
Denise, Bridget and Zach
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