We will be going down to see Chris in about an hour. I probably missed the oncologist, but at this point there isn't anything he needs to talk to me about so it's just the pulmonary doctor we'll want to talk to.
His niece will be arriving later this afternoon and my other aunt will be coming down to the hospital this afternoon. My sister will be coming down later as well and will go right to the hospital. I made a reservation at Bahr's for dinner so for you local people if you are around and want to join us or meet the family please come on by. We will be there between 7 and 7:30.
Friday, April 16, 2010
Thursday, April 15, 2010
No news yet for Thursday
Mom and I paid a quick visit to him last night where he did respond when spoken to. Given the amount of sedative he's on, it's easier to talk to him for a minute, squeeze his hand and let him go back to sleep. They have him on versed (SP?) because there is a nationwide shortage of propaphol, and I have no clue what that means in terms of what one does versus the other. When he said he was in pain yesterday they gave him some morphine so I guess it's everything to keep him quiet and sleeping while the lungs heal. We'll find out today about a feeding tube, something that they will need to do if they are unable to remove the ventilator.
Wednesday, April 14, 2010
Pneumonia!!
Unbelievable luck that we caught the pneumonia because if we had not the chemo most likely would have done irreversible damage.
Essentially, after arriving by ambulance at the hospital and being given 10 liters of oxygen, to which he did not respond like they wanted, they gave him some kind of assisted breathing machine and he had trouble with that because he said he could not cough. A short while later one of the resident doctor's came in and said they wanted to put him on a ventilator but gave me some song and dance about how they thought it was another pulmonary embolism and that if it turned out it was he might need surgery. I then told him that unless the request to put the ventilator came directly from a medical doctor I was not going to agree so while they went to get him on the phone the respiratory therapist told me that basically if we did not go along with this we would lose him as his lungs were failing. That being said, I opened the curtain pointed at the resident and said "go ahead" provided you sedate him first. I then told Chris that I wanted to let them put the tube in until we knew what was going on. I promised him that as soon as I knew what was going on we would be able to make a decision. He agreed and once they sedated him they put the tube in. Then they took him up for his CT scan, then they took him into ICU, then i sat around for a while.
My brother and sister in law came to visit and so did my sister. My mother is on her way and my aunt (her sister) will be arriving tomorrow. My brother in law will be arriving tomorrow night so Chris will be surrounded by someone other than me for the next few days.
We are looking at a minimum of 10-14 days before he can begin chemo.
Essentially, after arriving by ambulance at the hospital and being given 10 liters of oxygen, to which he did not respond like they wanted, they gave him some kind of assisted breathing machine and he had trouble with that because he said he could not cough. A short while later one of the resident doctor's came in and said they wanted to put him on a ventilator but gave me some song and dance about how they thought it was another pulmonary embolism and that if it turned out it was he might need surgery. I then told him that unless the request to put the ventilator came directly from a medical doctor I was not going to agree so while they went to get him on the phone the respiratory therapist told me that basically if we did not go along with this we would lose him as his lungs were failing. That being said, I opened the curtain pointed at the resident and said "go ahead" provided you sedate him first. I then told Chris that I wanted to let them put the tube in until we knew what was going on. I promised him that as soon as I knew what was going on we would be able to make a decision. He agreed and once they sedated him they put the tube in. Then they took him up for his CT scan, then they took him into ICU, then i sat around for a while.
My brother and sister in law came to visit and so did my sister. My mother is on her way and my aunt (her sister) will be arriving tomorrow. My brother in law will be arriving tomorrow night so Chris will be surrounded by someone other than me for the next few days.
We are looking at a minimum of 10-14 days before he can begin chemo.
Some breathing difficulties
I may need to take him to the ER for some extra oxygen. Our only go up to 5liters and we do not have the full rebreathers which is what he needs when he has these episodes. If you do not see a more recent post it's because I took him down and you can reach me on the cell phone. If I do take him, I will update here or have someone add comments to the thread. He may just have some fluid building up which is, unfortunately, one of the major problems with lung cancer.
Tuesday, April 13, 2010
Updated Cumaudin
As expected, there is an increase from 3 to 5 for today and then he'll stay on 4 while they test him next Monday. I expect that should be fairly stable now that he's drinking three ensures and eating. The ensure's actually have a fair amount of Vitamin K which is okay for him to have, as long as it is consistent. He'll also go see the doctor on the same day as the pulmonary doctor and then on the 7th he should be ready for his second round of chemo and a visit with the radiation oncologist.
Tomorrow I'll have to make sure Chris has his breakfast because even though he tells me he'll go find something to eat, he doesn't so the only way to make sure he eats is to put the food in front of him. I gave him a mug of pea soup when I got home at 5 and then gave him two Nathan's hot dogs and some baked beans at 7:30. Then he drank the third ensure of the day. He also nibbled on a bunch of dark chocolate dove squares so one way or the other he's getting over 2,000 calories a day right now. Hopefully that puts us in a great position for the start of chemo.
Tomorrow I'll have to make sure Chris has his breakfast because even though he tells me he'll go find something to eat, he doesn't so the only way to make sure he eats is to put the food in front of him. I gave him a mug of pea soup when I got home at 5 and then gave him two Nathan's hot dogs and some baked beans at 7:30. Then he drank the third ensure of the day. He also nibbled on a bunch of dark chocolate dove squares so one way or the other he's getting over 2,000 calories a day right now. Hopefully that puts us in a great position for the start of chemo.
Tuesday
I've left a message for the doctor to find out if Chris's cumaudin needs to be changed and to also find out if she wants to see him. I also called his former pulmonary doctor to let them know he would not be returning next week and despite my explaining to them why, they still called Chris at the house to ask him about it. Naturally he told them to talk to me. Why they would even want to force him to answer questions when he has no voice is just plain egotistical. If they do call me they will get an earful as the results of Chris's PET scan from March 8th specifically reference what appear to be clots in the lungs. I would not expect an oncologist to notice pulmonary lingo when they are explicitly looking for cancer terminology, but I would expect a pulmonary doctor to so they will be very unhappy with the action I will take if they do bother me or him again.
He will go see the pulmonary doctor on May 3rd, the one who saw him when he was in the hospital.
He will go see the pulmonary doctor on May 3rd, the one who saw him when he was in the hospital.
Monday, April 12, 2010
Monday Monday
Chris had a great, English lunch thanks to Aunt Rachel who went to Myers of Keswick before driving out for a visit.
There seems to be a bit of confusion at the oncologist's office because first they called to say his chemo is 11:30 on Friday but then they left me a message on my cell phone saying that the appointment was 11:30 but that they would let me know if he was still supposed to come in tomorrow... but since I called before I heard the message she told me there was no appointment. Then Chris called me when the nurse was here and said something about them wanting to put the port in Wednesday which makes no sense because he would have already had to get off the cumaudin and he would need shots in his stomach for 5 days in addition to needing some time to recover before the chemo. I called and left a message for the nurse but they did not call so I presume there's some confusion somewhere.. my feeling is that if there is a good response to the chemo and the risk of clots is reduced than they can always put one in. I suspect that since the doc had been planning on putting one in this week that they did not know when they called that it was not going to happen.
The INR count is slightly lower, at 1.2 but apparently that's a target number for people who are not on cumaudin (.9-1.3) so no clue what it means. Maybe the cancer cells are at a point in their cycle where they are doing something else other than aggravating the red blood cells.
There seems to be a bit of confusion at the oncologist's office because first they called to say his chemo is 11:30 on Friday but then they left me a message on my cell phone saying that the appointment was 11:30 but that they would let me know if he was still supposed to come in tomorrow... but since I called before I heard the message she told me there was no appointment. Then Chris called me when the nurse was here and said something about them wanting to put the port in Wednesday which makes no sense because he would have already had to get off the cumaudin and he would need shots in his stomach for 5 days in addition to needing some time to recover before the chemo. I called and left a message for the nurse but they did not call so I presume there's some confusion somewhere.. my feeling is that if there is a good response to the chemo and the risk of clots is reduced than they can always put one in. I suspect that since the doc had been planning on putting one in this week that they did not know when they called that it was not going to happen.
The INR count is slightly lower, at 1.2 but apparently that's a target number for people who are not on cumaudin (.9-1.3) so no clue what it means. Maybe the cancer cells are at a point in their cycle where they are doing something else other than aggravating the red blood cells.
Sunday, April 11, 2010
An educational and serious post
There seems to be a bit of confusion when I talk to people regarding what Chris has and what we are looking at. Keep in mind that it is very rare to catch lung cancer before it has spread and that is one reason why there is such a small success rate in long term survival. There are also more people who have recently received the link to this blog and it may be easier for them to start here than scroll through all the pages. These posts are designed to keep people up to date with what is going on but is presented in a straightforward way so that it's easy to read and give you some insight as to what we are going through. I have largely refrained from presenting this as the glass being half empty, and I fear that may be giving people an unrealistic view of how serious this is.
Some background
There was a biopsy done on a small tumor behind Chris's left ear on Feb 23rd. Two days later we got a phone call and the ENT said he "did not like what he saw" but he did not offer any more details. Chris mentioned he was going for a bronchoscopy the next day, but due to the two day snow storm we decided to reschedule. The bronchoscopy was March 1 and when we went to see the pulmonary doctor on March 4th, he told Chris that it was stage IV lung cancer. The next day, he had a PFT which is a breathing test and then on the 8th he went for a PET scan that would be used to identify all the places that the cancer is in. On the 12th we met with the oncologist who said she feared we are dealing with a very aggressive cancer and as such, time was of the essence and we would need to get the MRI's done on the brain and the thoracic region, go in for the port, and essentially start treatment on 3/30. On the 18th, Chris had two of the three MRI's and later that day wound up in the ER because some clots had broken loose from the legs and wound up blocking some of the arteries in his lungs. All the plans changed as the radiology oncologist found some very, very small lesions in the brain, something that happens in a very high number of lung cancer patients and Chris underwent 10 treatments.
Fast forward to today, this is what we are dealing with. Chris is on cumaudin which will prevent new clots from forming, but all chemo drugs have a potential risk of bleeding, so he will need to be watched closely after his initial treatment. The benefits outweigh the risks at this point as there is no choice. Chris recognizes this to but we do not go into details.
Everything that can possibly be done for him is being taken care of. There is still a very high quality of life and he is tolerant of all the medications that he has to take. He's also put up with countless blood tests, diagnostic tests, 10 radiation treatments, scans and everything that needs to be done to prepare someone to battle cancer. In terms of the cancer spreading, one thing we do know is that between the third week of January when they identified "something" from a CT scan and when Chris had the pet scan on March 8th, the tumor had not changed size or shape so it could be that as the cells become less "differentiated" they slow down their rate of reproduction. That last sentence comes from someone who failed high school chemistry but I have learned that the more reproduction that occurs, the less and less it looks like it's predecessors and therefore maybe it gains more time before it has to divide again.
Some background
There was a biopsy done on a small tumor behind Chris's left ear on Feb 23rd. Two days later we got a phone call and the ENT said he "did not like what he saw" but he did not offer any more details. Chris mentioned he was going for a bronchoscopy the next day, but due to the two day snow storm we decided to reschedule. The bronchoscopy was March 1 and when we went to see the pulmonary doctor on March 4th, he told Chris that it was stage IV lung cancer. The next day, he had a PFT which is a breathing test and then on the 8th he went for a PET scan that would be used to identify all the places that the cancer is in. On the 12th we met with the oncologist who said she feared we are dealing with a very aggressive cancer and as such, time was of the essence and we would need to get the MRI's done on the brain and the thoracic region, go in for the port, and essentially start treatment on 3/30. On the 18th, Chris had two of the three MRI's and later that day wound up in the ER because some clots had broken loose from the legs and wound up blocking some of the arteries in his lungs. All the plans changed as the radiology oncologist found some very, very small lesions in the brain, something that happens in a very high number of lung cancer patients and Chris underwent 10 treatments.
Fast forward to today, this is what we are dealing with. Chris is on cumaudin which will prevent new clots from forming, but all chemo drugs have a potential risk of bleeding, so he will need to be watched closely after his initial treatment. The benefits outweigh the risks at this point as there is no choice. Chris recognizes this to but we do not go into details.
Everything that can possibly be done for him is being taken care of. There is still a very high quality of life and he is tolerant of all the medications that he has to take. He's also put up with countless blood tests, diagnostic tests, 10 radiation treatments, scans and everything that needs to be done to prepare someone to battle cancer. In terms of the cancer spreading, one thing we do know is that between the third week of January when they identified "something" from a CT scan and when Chris had the pet scan on March 8th, the tumor had not changed size or shape so it could be that as the cells become less "differentiated" they slow down their rate of reproduction. That last sentence comes from someone who failed high school chemistry but I have learned that the more reproduction that occurs, the less and less it looks like it's predecessors and therefore maybe it gains more time before it has to divide again.
Sunday Morning
Gosh that throne is really comfortable! I waited until Chris got up around 5 and moved over to a chair before I moved off the couch and onto the throne where I had a nice nap. I'll be putting the roast into a crock pot with very little in the way of seasonings. It does serve a dual purpose, one of which I mentioned the other day, but the other, is as a baseline because if we know how it tastes without much spice and rubs than we can use it to build it up for next time. Chris finds that his hair is slowly coming out, something that the doctor's told him would happen, but since he did not have a full head of thick hair to begin with, it's not going to shock anyone who sees him.
We have some great soda bread that Colleen baked for Chris yesterday. I will take half of that, quarter it and then freeze it. The rest we will eat.
Time to change the water on the concentrator.... and then get the roast ready for the crock pot.
We have some great soda bread that Colleen baked for Chris yesterday. I will take half of that, quarter it and then freeze it. The rest we will eat.
Time to change the water on the concentrator.... and then get the roast ready for the crock pot.
Saturday, April 10, 2010
Saturday Night
Chris and I will be sleeping downstairs tonight as three times going up/down the stairs today have worn him out enough that I'm not sure that I want him to try it again. He's now resting on his new throne which is now practically flat and I should find out soon whether he's comfortable or not.
He would have been okay had he not decided earlier today to put the oxygen down and rush up the stairs in one fell swoop. He's supposed to go to the landing, rest and then when he catches his breath, move up again. Outside of a few physical therapy sessions I am not sure he did much moving at all when in the rehab place and I don't know what they did with him in the sessions.
He did have two meals today and three ensure shakes and almost an entire cadbury bar (one of those big square things) so that's a good bit for the day. Tomorrow I'll be putting a roast in the crock pot.
He would have been okay had he not decided earlier today to put the oxygen down and rush up the stairs in one fell swoop. He's supposed to go to the landing, rest and then when he catches his breath, move up again. Outside of a few physical therapy sessions I am not sure he did much moving at all when in the rehab place and I don't know what they did with him in the sessions.
He did have two meals today and three ensure shakes and almost an entire cadbury bar (one of those big square things) so that's a good bit for the day. Tomorrow I'll be putting a roast in the crock pot.
A nice breakfast
Fried egg yolk over white toast and some bacon and an ensure shake. I'm not sure what we'll have for lunch, dinner last night was the leftover hamburger meat sauteed with some nice vine ripened tomatoes and served over toast. A bit bland looking, I had to fight from reaching for the seasonings...... but it was okay for Chris. Since the chemo might affect his sense of smell I'd rather have him getting used to adding flavors after the food is cooked now.
Chris said he actually felt quite a bit better this morning and has been sleeping off and on since he woke me up around 5:30 to say he wanted to come downstairs. We need to change his fentanyl patch today and the nicotine one but he said he was not in a big hurry and when I mentioned that I'd like to do them in the afternoon to get the time more in line with when the next change is (the pain patch is every three days) he said that was fine. I'm headed out to get some folic acid in a bit.
Chris said he actually felt quite a bit better this morning and has been sleeping off and on since he woke me up around 5:30 to say he wanted to come downstairs. We need to change his fentanyl patch today and the nicotine one but he said he was not in a big hurry and when I mentioned that I'd like to do them in the afternoon to get the time more in line with when the next change is (the pain patch is every three days) he said that was fine. I'm headed out to get some folic acid in a bit.
Friday, April 9, 2010
Late Friday
Sorry for the late post, it takes a while to get things sorted in the house and when there are phone calls and emails and other things to do time tries to get out the closed windows (hint it got cold here today just when we thought spring was here).
There will be no port put in; long story short with the risk of clots they would not allow him to be off the cumaudin, he would be forced to endure shots of lovonox in the stomach and even if he were willing to do that, his breathing is erratic enough that no anesthesiologist may want to risk putting him under so instead we will try a round in the vein. First he will get Alimta and then carboplatin (it really has platinum in it) No Zometa for the time being as the doctor does not want to introduce anything "new" that could cause a side effect that might not be easily controlled. It's really amazing that when someone suffers from a breathing condition and we see them on oxygen and see them walking slowly or using a walker we automatically think "they are not well". This is true in Chris's case, but his blood work continues to indicate everything internally is still working. His WBC count is still the only number produced in the CBC that is slightly high. His platelets, RBC and anything else they consider key factors in ascertaining how well someone is are quite good. Again, it's worth mentioning that there is NOTHING in his blood that indicates he has cancer. Just mind boggling that it can continue to play so well. There will not be another test done before the chemo begins, no MRI's, no PET scans, no CT scans and no xrays. There is no reason to believe anything has changed.
We all just have to hope that we are still dealing with something that can be treated.
If you called and left a message today and I did not get back to you I will tomorrow unless something comes up that I need to tend to (like remembering I must get him folic acid) If you are around and want to visit, 2-4 tomorrow or Sunday are good, but if another time is better, please call me first. If you call to talk to Chris please remember he gets winded easily since he has no voice and has to whisper and in turn whisper loud so he can be heard (he expends a lot of oxygen). He does not know how to text so that won't be a good way of communicating with him either.
There will be no port put in; long story short with the risk of clots they would not allow him to be off the cumaudin, he would be forced to endure shots of lovonox in the stomach and even if he were willing to do that, his breathing is erratic enough that no anesthesiologist may want to risk putting him under so instead we will try a round in the vein. First he will get Alimta and then carboplatin (it really has platinum in it) No Zometa for the time being as the doctor does not want to introduce anything "new" that could cause a side effect that might not be easily controlled. It's really amazing that when someone suffers from a breathing condition and we see them on oxygen and see them walking slowly or using a walker we automatically think "they are not well". This is true in Chris's case, but his blood work continues to indicate everything internally is still working. His WBC count is still the only number produced in the CBC that is slightly high. His platelets, RBC and anything else they consider key factors in ascertaining how well someone is are quite good. Again, it's worth mentioning that there is NOTHING in his blood that indicates he has cancer. Just mind boggling that it can continue to play so well. There will not be another test done before the chemo begins, no MRI's, no PET scans, no CT scans and no xrays. There is no reason to believe anything has changed.
We all just have to hope that we are still dealing with something that can be treated.
If you called and left a message today and I did not get back to you I will tomorrow unless something comes up that I need to tend to (like remembering I must get him folic acid) If you are around and want to visit, 2-4 tomorrow or Sunday are good, but if another time is better, please call me first. If you call to talk to Chris please remember he gets winded easily since he has no voice and has to whisper and in turn whisper loud so he can be heard (he expends a lot of oxygen). He does not know how to text so that won't be a good way of communicating with him either.
Thursday, April 8, 2010
Thursday afternoon
I must say that grass fed hamburger meat is really, really good and I will be ordering more from them next week, once we have Chris's menu established. Grass fed beef is higher in iron, lower in fat and does not lose shape or size when it's cooked (although I only made one so far so it's not really a big sample).
Shameless plug for US Wellness meats www.grasslandbeef.com. They were not much more expensive than butcher quality meat and even with the shipping/handling it was reasonable.They have lots of other stuff too... and I am going to try to get Chris to try the pemmican which is something they recommend for cancer patients because it has lots of nutrition and calories.
So yes as you can probably surmise, Chris had a burger today for lunch along with a few small slices of tomatoes and two small white potatoes (from a can). He's on his third ensure of the day and I hope to get him to eat some of a quiche in a little while. I've also got some ziti that I may heat up instead. He's nebulizing at the moment and recently finished his second beer. He's allowed two a day, one with lunch and one with dinner, mostly because of the extra calories. We also went out for a bit this afternoon since I needed to get the lower dose decadron that they were out of yesterday and also to get Chris a new electric razor. The other one is quite old and was bought at a store that's been out of business for quite a while now!
Tomorrow we will take a field trip to the oncologist in the afternoon. The office is across the street from Monmouth Park so once he starts chemo I can go visit some friends if it looks like his sessions will last for a while. I hope they have wireless where he goes because then he can use the itouch for things other than listening to my music (although he likes most of it).
Shameless plug for US Wellness meats www.grasslandbeef.com. They were not much more expensive than butcher quality meat and even with the shipping/handling it was reasonable.They have lots of other stuff too... and I am going to try to get Chris to try the pemmican which is something they recommend for cancer patients because it has lots of nutrition and calories.
So yes as you can probably surmise, Chris had a burger today for lunch along with a few small slices of tomatoes and two small white potatoes (from a can). He's on his third ensure of the day and I hope to get him to eat some of a quiche in a little while. I've also got some ziti that I may heat up instead. He's nebulizing at the moment and recently finished his second beer. He's allowed two a day, one with lunch and one with dinner, mostly because of the extra calories. We also went out for a bit this afternoon since I needed to get the lower dose decadron that they were out of yesterday and also to get Chris a new electric razor. The other one is quite old and was bought at a store that's been out of business for quite a while now!
Tomorrow we will take a field trip to the oncologist in the afternoon. The office is across the street from Monmouth Park so once he starts chemo I can go visit some friends if it looks like his sessions will last for a while. I hope they have wireless where he goes because then he can use the itouch for things other than listening to my music (although he likes most of it).
Thursday
Chris was able to get up and down the stairs twice yesterday without requiring the oxygen. It seems he can tolerate about 60 seconds without it, although I have no clue what he should be able to do. He took his pills when he was supposed to and then we did the treatment at 11:15. The next one was supposed to be at 4 but Chris decided it could be later so I woke him up at 6 and told him it was time to start things. It took over two hours to get him to finish everything and I suspect the reason why he finally got on with the last one was he knew when he asked me for his nicotine patch that I was going to say I would put it on after.
Other than a breathing treatment and the last dose of mucomist Chris has the afternoon off. The VNA will be here at 11 and they said if they cannot find the INR machine that they will have to get QUEST to come out for the blood test. Chris can handle a real phlebotomist but I am sure he'd be happy if the finger test would work.
We need to go out later today, he needs a new electric razor, wants some cushion things for behind his ears and then also some glasses.
He's had two ensures and one half of a sandwich sized english muffin with butter and orange marmalade so far today.
Other than a breathing treatment and the last dose of mucomist Chris has the afternoon off. The VNA will be here at 11 and they said if they cannot find the INR machine that they will have to get QUEST to come out for the blood test. Chris can handle a real phlebotomist but I am sure he'd be happy if the finger test would work.
We need to go out later today, he needs a new electric razor, wants some cushion things for behind his ears and then also some glasses.
He's had two ensures and one half of a sandwich sized english muffin with butter and orange marmalade so far today.
Wednesday, April 7, 2010
Settling in
I only had to make three trips to the pharmacy but now we have everything that he needs. I spent over an hour trying to sort through his medications and put them in the right containers. Some are a bit more difficult because they are one strength certain days and different one's on the next. Those are one time a day so that's easier to keep track of. The liquid nebulizer one's we'll just track. The oxygen concentrators are very quiet so that should not keep us awake at night. They delivered a walker but also that silly commode. I have no clue what to even do with it but it will make a nice planter. It will NOT be an excuse for Chris to not have to walk 5 feet to the bathroom.
A two day "special" treatment for Chris means we have to get up at 11 or 12 and give him something so I'm glad I can work from home again tomorrow.
He's going to have a shake, then take his pills at five, then he'll go upstairs around 6 for a much needed shower (a plastic chair from outside will have to do right now because shower chairs are over $70).
Chris was able to make it up the stairs pretty easily, all things considered and after about an hour allowed me to lower his oxygen from 5 to 4 liters which is what the prescription is for. He's also got ten portable oxygen tanks, each will last between two and two and a half hours. We just let them know when we are down to two and they will come out and replace them in a day.
He loves his throne but has just gone back to his favorite black leather chair for a bit. It's good that he is a bit more mobile and knows that he will need to be able to walk into the oncologist on Friday.
A two day "special" treatment for Chris means we have to get up at 11 or 12 and give him something so I'm glad I can work from home again tomorrow.
He's going to have a shake, then take his pills at five, then he'll go upstairs around 6 for a much needed shower (a plastic chair from outside will have to do right now because shower chairs are over $70).
Chris was able to make it up the stairs pretty easily, all things considered and after about an hour allowed me to lower his oxygen from 5 to 4 liters which is what the prescription is for. He's also got ten portable oxygen tanks, each will last between two and two and a half hours. We just let them know when we are down to two and they will come out and replace them in a day.
He loves his throne but has just gone back to his favorite black leather chair for a bit. It's good that he is a bit more mobile and knows that he will need to be able to walk into the oncologist on Friday.
Should not be too much longer
I set up the timer and clock for the medication reminder system, dropped Geoff and Trish off at the train station and am now waiting for the oxygen concentrators and the walker. I don't know where the supplier went yesterday to drop off the walker, but it was not to this house.
For those of you who are neighbors and friends who live nearby, the best time to visit is going to be 2-4PM or after 5. If you want to come by when I'm at work please give me a call at the office or on my cell phone so I can make sure that he's ready or at least aware that someone is coming in. I would ask that people please not call the house too often when I'm not there simply because without a voice it's very hard on him and he has a tendency of forgetting to breathe so I don't want him to panic if he is alone and can't catch his breath. We will have a list of people to call should he need some immediate company that we will put in place over the next few days and I'll know when the VNA is starting tomorrow morning.
For those of you who are neighbors and friends who live nearby, the best time to visit is going to be 2-4PM or after 5. If you want to come by when I'm at work please give me a call at the office or on my cell phone so I can make sure that he's ready or at least aware that someone is coming in. I would ask that people please not call the house too often when I'm not there simply because without a voice it's very hard on him and he has a tendency of forgetting to breathe so I don't want him to panic if he is alone and can't catch his breath. We will have a list of people to call should he need some immediate company that we will put in place over the next few days and I'll know when the VNA is starting tomorrow morning.
Tuesday, April 6, 2010
A few more things ....
Like the company who was supposed to bring the walker that claims they missed us but clearly were not here... and then we need the two concentrators to be delivered and then lastly and most importantly we need to get him up the stairs. Chris had three very special visitors when we showed up at 6, some people who I had been unable to reach out to directly over the past few weeks to talk to, but yet had gotten the right information. He also had a few other visitors over the past few days (sometime he'll remember to tell me exactly who was there) every one of you have really helped boost his mood.
He was very calm when we were there, not in a tired way, but a "I know what I have to do". Yesterday he was insistent on a break of some duration, today when I told him the oncologists office called to see HIM he was like "okay". A few days of high protein shakes and some good food and he'll be ready to walk into her office. He is her last appointment and they are prepared to not only spend the time talking to him to make sure he understands but to also get him ready for the next steps. I have not heard yet if he talked to the psychologist that they said he would be meeting with, or maybe he just had a non religious epiphany of sorts, but I hope he's now ready.
He was very calm when we were there, not in a tired way, but a "I know what I have to do". Yesterday he was insistent on a break of some duration, today when I told him the oncologists office called to see HIM he was like "okay". A few days of high protein shakes and some good food and he'll be ready to walk into her office. He is her last appointment and they are prepared to not only spend the time talking to him to make sure he understands but to also get him ready for the next steps. I have not heard yet if he talked to the psychologist that they said he would be meeting with, or maybe he just had a non religious epiphany of sorts, but I hope he's now ready.
Getting closer
We're putting everything together and hopefully things should be sorted and ready for Chris later today. I'm not sure why he told someone he wanted a commode when he really wants a shower chair... but maybe it can be used for that since it's essentially a raised seat that towers over a toilet seat.
I got a hold of his insurance case manager this morning to see if I can get them to approve two concentrators. They normally say one per house because they can accommodate up to 100 feet of tubing but the longer the tube the more potential loss along the way. To me it's also a bit of a safety hazard and a risk in general because the cats will almost certainly be interested in playing with it, as they are with anything new. I hope they won't freak over the noise the concentrator makes, it took them a week before they were used to the nebulizer and that was only after they saw that I didn't react to it.
There will also be a special "case manager" that Chris is eligible for from the insurance company who will work with the VNA (visiting nurse association) going forward to make sure that if there's anything he needs that he gets it.
I got a hold of his insurance case manager this morning to see if I can get them to approve two concentrators. They normally say one per house because they can accommodate up to 100 feet of tubing but the longer the tube the more potential loss along the way. To me it's also a bit of a safety hazard and a risk in general because the cats will almost certainly be interested in playing with it, as they are with anything new. I hope they won't freak over the noise the concentrator makes, it took them a week before they were used to the nebulizer and that was only after they saw that I didn't react to it.
I just got off the phone with the rep and they will be delivering two 10 liter units to the house. They said since he's currently on 5 liters they want to make sure if he has any episodes he will be able to increase it a bit. The second unit was approved for two months, which is what I had asked them for as it will allow us time to figure out what we will need to do and to plan. It will also give me enough room to shop around and see what makes the most sense.
There will also be a special "case manager" that Chris is eligible for from the insurance company who will work with the VNA (visiting nurse association) going forward to make sure that if there's anything he needs that he gets it.
Monday, April 5, 2010
These silly expensive diagnostic companies....
Must like bleeding away money because when I called to ask them why I did not see a charge for Chris's PET scan they told me it had already been paid by the insurance company. That's all well and good, but Aetna has no record of them submitting a bill for the PET scan. I then called them back, not because I really care about the 2-3,000 they are out, but because that means that the payment probably belongs to another account (I'm not banking on their being two people with the same name, same DOB who needs their wife in to hold their hands when they need to inject dyes) and now they are going to get someone all riled up and annoyed who does not need that.
I'm not sure they are used to people calling them up like that, but I have to stay on top of every charge that's submitted to Aetna and when I don't see one's I expect I have to question those too. It's hard enough reconciling the FSA side against the medical side, but it's a royal PITA because it's sorted by the date of service not the date received and when I download it to excel i have to go line by line to see what's new.
I'm not sure they are used to people calling them up like that, but I have to stay on top of every charge that's submitted to Aetna and when I don't see one's I expect I have to question those too. It's hard enough reconciling the FSA side against the medical side, but it's a royal PITA because it's sorted by the date of service not the date received and when I download it to excel i have to go line by line to see what's new.
Monday Morning
No real changes to report, Chris was annoyed when I told him he could not come home and said that instead he would stay right where he was. Hopefully he finishes he radiation today (until he actually goes there's always a chance he could throw a temper tantrum and refuse). I suspect he will go though because the handicap placard application should be signed and ready for pickup and he does want that so that might be incentive enough.
Today is Trish's birthday (Happy Birthday!) and she will be going to NYC today to visit MOMA and then walk around a bit. Geoff might go on a half day fishing trip from the same place the ferry leaves from and then he will go see Chris at around 2. I'll go see him on my way home and then once Trish is back we'll go visit him again and then see what Trish wants to do for dinner. I'm sure they would be more than willing to go eat again at the Trattoria both tonight and tomorrow night, but like most restaurants in seaside communities, a lot of them are closed on Monday.
Unless I hear otherwise, Chris will be ready to come home on Wednesday.
Today is Trish's birthday (Happy Birthday!) and she will be going to NYC today to visit MOMA and then walk around a bit. Geoff might go on a half day fishing trip from the same place the ferry leaves from and then he will go see Chris at around 2. I'll go see him on my way home and then once Trish is back we'll go visit him again and then see what Trish wants to do for dinner. I'm sure they would be more than willing to go eat again at the Trattoria both tonight and tomorrow night, but like most restaurants in seaside communities, a lot of them are closed on Monday.
Unless I hear otherwise, Chris will be ready to come home on Wednesday.
Saturday, April 3, 2010
Saturday Afternoon
Despite Chris's insistence that he would be ready and wanted to get out this afternoon when we came back to see him at two, he decided that he was too tired and resigned himself to getting more rest. A few of our friends really wanted to go see him today, but I would rather people come by the house once he's home than go see him now when he's moody, unshaven and generally in need of putting on some different clothing.
Geoff, Trish and I will walk down the hill and try to get into one of our favorite restaurants for an early dinner and then will walk back up the hill for the second time today.
I bought some Tervis Tumblers today, a magic bullet, a tray and a pitcher that will hold ice in a tube. That way I can give Chris a pitcher of water that will hopefully stay cold for a while when I'm not here.The tervis tumblers can hold his coffee (I'm working on getting him to try stevia instead of sugar) and the magic bullet will be handy for making his shakes, smoothies and soups. With the tray, he can have the stuff next to him but he will still need to swing his legs off of his throne to eat or drink.
We'll go over to see him tomorrow around 11 and see how he is. There is a better chance tomorrow that he'll want to get out but I'm still not going to put it at more than about 40% and I don't know that I want him to come into the house simply because if he gets winded coming up the stairs and can't catch his breath we would have to call the paramedics and I can't chance that kind of setback right now.
Geoff, Trish and I will walk down the hill and try to get into one of our favorite restaurants for an early dinner and then will walk back up the hill for the second time today.
I bought some Tervis Tumblers today, a magic bullet, a tray and a pitcher that will hold ice in a tube. That way I can give Chris a pitcher of water that will hopefully stay cold for a while when I'm not here.The tervis tumblers can hold his coffee (I'm working on getting him to try stevia instead of sugar) and the magic bullet will be handy for making his shakes, smoothies and soups. With the tray, he can have the stuff next to him but he will still need to swing his legs off of his throne to eat or drink.
We'll go over to see him tomorrow around 11 and see how he is. There is a better chance tomorrow that he'll want to get out but I'm still not going to put it at more than about 40% and I don't know that I want him to come into the house simply because if he gets winded coming up the stairs and can't catch his breath we would have to call the paramedics and I can't chance that kind of setback right now.
Friday, April 2, 2010
Late Friday
Monday will be the last radiation treatment. Chris has finally recognized and accepted that the radiation has kicked his *** so he spent the rest of the day after Kellie left sleeping (I made sure he had something to eat before he took his pills). Today was the first day I really saw him worn out, as opposed to the normal "I just want to sleep" attitude so when Geoff, Trish and I head over there tomorrow we will be ready for whatever he wants to do or not as the case may be. Chris suggested to me that now that he has a plan he is going to awaken tomorrow with all sorts of energy and focus and will be ready to leave the facility for a few hours. Reality says that it's more likely that he will need more rest, but whether he leaves the facility or not, food is at the top of the list!~
We got very lucky that his latest bloodwork came back really good. Other than a slightly elevated white blood cell count that can likely be attributed to the Decadron he's been on since he was admitted to the hospital, the rest of it is within range. That bodes well for the upcoming chemotherapy, but we still need to focus on getting him to eat and put on some weight. He's been told that if he is unable (and I am probably repeating myself but I'm too tired to pull the blog up on another tab and read through it) to walk into the oncologist's office that she is likely to say "thanks for coming in but we will not be able to treat you".
So we shall see what tomorrow brings. Please keep in mind that if you do have his cell phone number and do call him that because of his paralyzed left vocal chord that he has to exert more effort in order to make sure he is heard and that after a few minutes he is not taking in enough oxygen and he will get weak. I did ask the respiratory therapist if there was anything that could be done to help someone remember to breath out as much as they breath in when they talk and he said "if you can figure that out let me know" so in the interim I try to make sure that when I talk to Chris he does not have to give me more than a few word answer.
I've set the DVR to tape the Formula One qualifying and we'll save it so when Chris is ready to come home for a few hours he can watch it and the race (which is on Sunday). As of now he is one race behind but that's because he does not get to watch any sports channels so he does not know what's on when. He did know it was supposed to be on last weekend.
Will try to catch up tomorrow, as I tell his mother, please take no news as just that, no changes.
We got very lucky that his latest bloodwork came back really good. Other than a slightly elevated white blood cell count that can likely be attributed to the Decadron he's been on since he was admitted to the hospital, the rest of it is within range. That bodes well for the upcoming chemotherapy, but we still need to focus on getting him to eat and put on some weight. He's been told that if he is unable (and I am probably repeating myself but I'm too tired to pull the blog up on another tab and read through it) to walk into the oncologist's office that she is likely to say "thanks for coming in but we will not be able to treat you".
So we shall see what tomorrow brings. Please keep in mind that if you do have his cell phone number and do call him that because of his paralyzed left vocal chord that he has to exert more effort in order to make sure he is heard and that after a few minutes he is not taking in enough oxygen and he will get weak. I did ask the respiratory therapist if there was anything that could be done to help someone remember to breath out as much as they breath in when they talk and he said "if you can figure that out let me know" so in the interim I try to make sure that when I talk to Chris he does not have to give me more than a few word answer.
I've set the DVR to tape the Formula One qualifying and we'll save it so when Chris is ready to come home for a few hours he can watch it and the race (which is on Sunday). As of now he is one race behind but that's because he does not get to watch any sports channels so he does not know what's on when. He did know it was supposed to be on last weekend.
Will try to catch up tomorrow, as I tell his mother, please take no news as just that, no changes.
Thursday, April 1, 2010
Thursday
The ambulance company was almost an hour late today so that reduced the time Chris was willing to donate to physical therapy so he only did an hour instead of two.
Since today was supposed to be blood draw day I got over there at four but by seven when they had not shown up we had to cancel. Chris needs his meds and he would not take them or eat until after the blood was drawn so we had to tell them not to bother. If they consider 3+ hours STAT then that's not a company I ever want to do business with! So now I'll have to go down there tomorrow when they call which will be before he goes for radiation. He has not had his blood tested all week and it's critical that they know where he is for this INR count. Whether I wanted to learn about that or not, I did because I had to explain to Chris exactly how it works and what it's used for.
The plan is to move him on Wednesday afternoon. The oncologist will not take him back into her care while he is in rehab, Chris will require a one week "break" before anything can be done, and we will be able to get the VNA in the house. By telling them today, I'm giving them enough notice to have everything arranged. Chris will need to come downstairs with me in the mornings before i leave for work and will not be allowed to go upstairs while I"m out. He will also have a walker, not because he is unable to walk, but because if he loses his balance there's nothing in the hall for him to hold onto (and it is not carpeted) and with the bones possibly being more brittle I don't want to take a chance that he falls. He is okay with it. He has possibly the worlds most comfortable chair to recline in so he will be content when I'm out and when he has to wait for people to come by.
I expect they will put the port in the following week. Since Chris is demanding a week sabbatical, we should be okay to do it a week from Wednesday with a goal of starting chemo on the next Monday.
Two more radiation treatments to go! No hair loss or headaches so far and just some minor fatigue. Now that he knows that's what is happening he's much more accommodating when I remind him of it.
Since today was supposed to be blood draw day I got over there at four but by seven when they had not shown up we had to cancel. Chris needs his meds and he would not take them or eat until after the blood was drawn so we had to tell them not to bother. If they consider 3+ hours STAT then that's not a company I ever want to do business with! So now I'll have to go down there tomorrow when they call which will be before he goes for radiation. He has not had his blood tested all week and it's critical that they know where he is for this INR count. Whether I wanted to learn about that or not, I did because I had to explain to Chris exactly how it works and what it's used for.
The plan is to move him on Wednesday afternoon. The oncologist will not take him back into her care while he is in rehab, Chris will require a one week "break" before anything can be done, and we will be able to get the VNA in the house. By telling them today, I'm giving them enough notice to have everything arranged. Chris will need to come downstairs with me in the mornings before i leave for work and will not be allowed to go upstairs while I"m out. He will also have a walker, not because he is unable to walk, but because if he loses his balance there's nothing in the hall for him to hold onto (and it is not carpeted) and with the bones possibly being more brittle I don't want to take a chance that he falls. He is okay with it. He has possibly the worlds most comfortable chair to recline in so he will be content when I'm out and when he has to wait for people to come by.
I expect they will put the port in the following week. Since Chris is demanding a week sabbatical, we should be okay to do it a week from Wednesday with a goal of starting chemo on the next Monday.
Two more radiation treatments to go! No hair loss or headaches so far and just some minor fatigue. Now that he knows that's what is happening he's much more accommodating when I remind him of it.
All sorted...
I had a meeting with the facility yesterday and he will stay through the 7th. He did go to physical therapy and has promised to go every day for 2 hours. He goes from 11 to 12 and then 1 to 2. He has been told that if he does not participate he will not be given chemotherapy because nobody will treat someone who is that weak. He will need to walk into the oncologist's office when he has his next appointment which will probably be towards the end of next week or the beginning of the following week. Then he can have his port put in and get chemo started.
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