I think it might be more beneficial to get Chris home at the end of the week rather than leaving him over at the rehab place. He can get PT from the VNA and will also have a nurse come by to see him. I will meet with the staff at the facility today (something they should have done before now) to set up a plan with milestones. If he has not accomplished anything while he's in there he will be better off and more relaxed at home provided we can get him the type of therapy he needs. They really should have set up this meeting on Monday or at the latest yesterday. I should not have had to escalate it to the corporate office, but everyone who knows me knows that I escalate everything when necessary in order to get what I want. If Chris does not get through PT and more mobile they will NOT start him on chemo.
Dr. Sim met with Chris yesterday and told him that they felt he had been tolerating the radiation well. They also asked Chris for a list of his medications but when I asked the nurse for it, she told me that Chris would have given them a piece of paper with the request on it but when I asked him about it he said they did not give him a piece of paper. Naturally that means it did not get done but I just talked to his nurse and she will get it from the center.
It's very confusing in terms of which doctor he's under the care of because he's not a current patient of his oncologist because he's undergoing radiation and he won't be under the care of the radiology oncologist after he's finished with radiation on Monday. He will be under the oncologist's care once he goes back to see her, but I don't know when that will be yet. His new primary doctor he's only seen once so she cannot possibly know enough about him to be really effective.
Wednesday, March 31, 2010
Tuesday, March 30, 2010
To Be Expected..
After making sure that Chris would not be disturbed today by the nurses he was real animated when I got there and insisted he had been woken up multiple times. When I went to talk to Kristen about it she said that none of the nurses or aide's had been in so when she asked him who it was, it turned out to be someone from physical therapy. Despite telling me that he was going to go when he got back, for some reason he decided that because they were an hour late picking him up that threw off his schedule so he told them (or so he thought) that he was not going to go therapy that day. He did work with them on a schedule and a plan, but he did not communicate to him that he wanted to rest.
He also indicated to me that he was angry again that he was not getting enough sleep and when I asked him about it, he said that HE woke up at 3 and asked for a breathing treatment (but it was really 12). I told him flat out that he had NO bags under his eyes and looked far too well rested to have been sleep deprived so he needed to be aware that this is one of the side effects of the radiation and that it's fatigue not sleep deprivation. He accepted that and after a kind, gentle lecture from me about what he must do before he can come home, he said he would go to therapy the rest of the week. I let him know in no uncertain terms that if they feel he is uncooperative and is not making progress he could not stay there and until he can get up the stairs to the house he cannot come home.
The bottom line is that this is not completely unexpected and now that there are some things going on I will work on how it has to be addressed. When someone is stubborn it's not easy, but he's smart enough to reason with so we'll continue working on it as a compromise.
He also indicated to me that he was angry again that he was not getting enough sleep and when I asked him about it, he said that HE woke up at 3 and asked for a breathing treatment (but it was really 12). I told him flat out that he had NO bags under his eyes and looked far too well rested to have been sleep deprived so he needed to be aware that this is one of the side effects of the radiation and that it's fatigue not sleep deprivation. He accepted that and after a kind, gentle lecture from me about what he must do before he can come home, he said he would go to therapy the rest of the week. I let him know in no uncertain terms that if they feel he is uncooperative and is not making progress he could not stay there and until he can get up the stairs to the house he cannot come home.
The bottom line is that this is not completely unexpected and now that there are some things going on I will work on how it has to be addressed. When someone is stubborn it's not easy, but he's smart enough to reason with so we'll continue working on it as a compromise.
Midday Tuesday
So far so good today, he called me from the van on his way back. They were an hour late picking him up, probably as a result of the weather. He had a good night and told me he was ready to do physical therapy when he got back and would also eat. I got some milk so I'll make one of those double chocolate shakes when I get home to bring over to him.
I reached out to the VNA this morning as I need to get the process of getting him out of there going. I am annoyed that his social worker has not returned my call and has not spoken to either of us since he got there. If they are supposed to be his advocate they are failing miserably so the sooner I can involve the VNA, the better. They can also continue physical therapy with him and lots of other services that the insurance company will cover. It seems that outside of insurance in NJ other services are provided so we might be able to get visits every day during the week for up to four hours. I told Chris when he called me to ask to see Doreen since she's their representative who visits the facility every day.
I've also left a message for the director of clinical trials here to see if he has any information on some phase 3 trials that might be underway that Chris would qualify for. This is not for now, but would be something I would consider asking him to do if the initial treatments do not have the results we expect. At the very least he will have some contact information for me.
I reached out to the VNA this morning as I need to get the process of getting him out of there going. I am annoyed that his social worker has not returned my call and has not spoken to either of us since he got there. If they are supposed to be his advocate they are failing miserably so the sooner I can involve the VNA, the better. They can also continue physical therapy with him and lots of other services that the insurance company will cover. It seems that outside of insurance in NJ other services are provided so we might be able to get visits every day during the week for up to four hours. I told Chris when he called me to ask to see Doreen since she's their representative who visits the facility every day.
I've also left a message for the director of clinical trials here to see if he has any information on some phase 3 trials that might be underway that Chris would qualify for. This is not for now, but would be something I would consider asking him to do if the initial treatments do not have the results we expect. At the very least he will have some contact information for me.
Monday, March 29, 2010
Monday Evening
Chris had a bad day. He's quite angry at the moment so after going out and getting him a double cheeseburger from Burger King I told him I was going home. He did not sleep very well last night and then despite all assurances that the phlebotomist would not go in and ask him for blood, she did anyway just as he was getting ready to go for radiation. Then when he came back, the third doctor came in (one he had not seen before) and could not adequately explain to Chris why it takes time to get the Cumaudin levels right so Chris said he fired him and now he has a different doctor. This new doctor is a co-worker of Dr Israel (who is actually not a psychiatrist but a palliative care internal medicine doctor) and even though she specializes more in geriatric, she felt that this doctor would be a great fit for Chris. I did speak to her and the only change she made was to start giving him zoloft to see if they can get the xanax use down a bit. Xanax is the best medication ever invented, in my humble opinion because no matter how hard you try, you can't get pissed off, even at the idiot on the highway who won't get out of your way.
Since Chris did not get much sleep last night, and was then aggravated by the phlebotomist, he told the PT person to come back tomorrow and then after he fell asleep someone came in and shook his leg and demanded to know if he had moved his bowels. He was like, you woke me up for that? I'm sure it then took him an hour to calm down and then when he went to sleep the same person came back, shook his leg and said "I have to weigh you" so that just set him off again. He says that he feels worse than he did in the hospital and that if they are going to continue to bother him he is going to walk out. I printed out all the manufacturer's information and statistics on Cumaudin in the hopes he would realize just why they need to keep testing his blood so I hope once he gets rest he'll be more accommodating. The next draw will be on Thursday at 4, so I'll leave work a little early so they can get it done. I also left explicit instructions that other than his meds he is not to be bothered by anyone. If someone goes to visit, they can look in the room, but if he's asleep they can't come in. I'll also talk to the social worker tomorrow and get things straightened out. It's possible that they can arrange to have the visiting nurse service provide therapy as well, so maybe we can see if he would be ready to come home this weekend. He promised he would do his therapy tomorrow, as he knows without it he will be unable to get the oxygen level down so I'm hoping that if he gets sleep that will improve his mood. You never want to wake up a Vickery (I'm sure someone in the family can vouch for this) or deal with them when they are really angry because then they are incorrigible so a nice rest is in order.
After almost 14 years of marriage I am used to his moods, so when I told him I was going home because he needed rest, he understood. Of course he wanted me to stay, but I said you need rest more than you need me to sit on the edge of your bed.
Since I seem to end the posts without offering anything about ME, here goes. I had a great first day back at work. I was a bit upset to hear that some of my co-workers from the original company I started with were laid off as part of this mega merger but obviously glad that most of us are in an area that has a demand that they are still short on so we are as safe as anyone can ever be in corporate America. Waiting to hear when Geoff and Trish are arriving, should be sometime later on Friday. It will be great for Chris to see his brother and sister in law.
Since Chris did not get much sleep last night, and was then aggravated by the phlebotomist, he told the PT person to come back tomorrow and then after he fell asleep someone came in and shook his leg and demanded to know if he had moved his bowels. He was like, you woke me up for that? I'm sure it then took him an hour to calm down and then when he went to sleep the same person came back, shook his leg and said "I have to weigh you" so that just set him off again. He says that he feels worse than he did in the hospital and that if they are going to continue to bother him he is going to walk out. I printed out all the manufacturer's information and statistics on Cumaudin in the hopes he would realize just why they need to keep testing his blood so I hope once he gets rest he'll be more accommodating. The next draw will be on Thursday at 4, so I'll leave work a little early so they can get it done. I also left explicit instructions that other than his meds he is not to be bothered by anyone. If someone goes to visit, they can look in the room, but if he's asleep they can't come in. I'll also talk to the social worker tomorrow and get things straightened out. It's possible that they can arrange to have the visiting nurse service provide therapy as well, so maybe we can see if he would be ready to come home this weekend. He promised he would do his therapy tomorrow, as he knows without it he will be unable to get the oxygen level down so I'm hoping that if he gets sleep that will improve his mood. You never want to wake up a Vickery (I'm sure someone in the family can vouch for this) or deal with them when they are really angry because then they are incorrigible so a nice rest is in order.
After almost 14 years of marriage I am used to his moods, so when I told him I was going home because he needed rest, he understood. Of course he wanted me to stay, but I said you need rest more than you need me to sit on the edge of your bed.
Since I seem to end the posts without offering anything about ME, here goes. I had a great first day back at work. I was a bit upset to hear that some of my co-workers from the original company I started with were laid off as part of this mega merger but obviously glad that most of us are in an area that has a demand that they are still short on so we are as safe as anyone can ever be in corporate America. Waiting to hear when Geoff and Trish are arriving, should be sometime later on Friday. It will be great for Chris to see his brother and sister in law.
Sunday, March 28, 2010
Sunday afternoon
Thursday will be the start of the 4th week. Chris had a small breakfast but a really nice lunch. I got him some of the high protein double chocolate powder that I will mix with some milk and bring him later. I also picked up an ITouch for Chris as it has wireless internet and it's a lot smaller and cheaper than buying a laptop. I know he missed watching the Formula One, so if he can get over to comcast.net and log in we can probably find it on their fancast.
They will pick him up at 8:15 tomorrow for his 9:15 appointment. I'm sure once they realize that they only need 30 minutes to get to Long Branch they'll arrive a little later but the one thing about appointments in those types of places is they do NOT keep you waiting. The waiting comes after the appointment if you need to see the radiologist, or he needs to see you. Chris has a brilliant young Radiation Oncologist (Dr Sim) who also sees patients at the Basking Ridge location of Sloane Kettering. I expect in a few years he will be a leading doctor in his field.
I'm hanging out for a bit then will go drop his new toy off for him. He was going to see about trivia that they have at 2:15 but given that he's about 20 years younger than most of the patients and has hearing that's 200% better I'm not sure what kind of trivia it is going to be other than it being loud! I'll find out later.
They will pick him up at 8:15 tomorrow for his 9:15 appointment. I'm sure once they realize that they only need 30 minutes to get to Long Branch they'll arrive a little later but the one thing about appointments in those types of places is they do NOT keep you waiting. The waiting comes after the appointment if you need to see the radiologist, or he needs to see you. Chris has a brilliant young Radiation Oncologist (Dr Sim) who also sees patients at the Basking Ridge location of Sloane Kettering. I expect in a few years he will be a leading doctor in his field.
I'm hanging out for a bit then will go drop his new toy off for him. He was going to see about trivia that they have at 2:15 but given that he's about 20 years younger than most of the patients and has hearing that's 200% better I'm not sure what kind of trivia it is going to be other than it being loud! I'll find out later.
Sunday Shopping
Even after ten years of living in a county where we can shop on Sunday it still seems funny to say that.... Bergen county is one of the few remaining areas that don't allow shopping on Sunday's, although I hear they want to change that.
I told Chris I'd get his oximeter for him and he will also need a few pairs of sweat pants, sneakers (i have no clue where his are because he rarely, if ever, wears them). I'm also contemplating getting him an IPOD nano that he can use when he wakes up in the middle of the night as a diversion from his breathing difficulties. It might also be a good way of getting him to measure how long it takes for him to feel better.
I'll go over there in a bit so that I can see how he's feeling and then sit with him when he eats breakfast. I believe at some point today we'll bring a beer or two over for him, I just have to ask the nurses what would be a good time to give it to him. I don't want him to have one just before/after his pills. Yes, the psychiatrist cleared it so that should bring a smile to his face.
I will need to speak to the doctor's tomorrow and find out what the plan is. It seems they just dropped him off and nobody was around to talk to about what we are after and about how long everything might take. I'd like to get him home at the end of the week because it looks like his brother and sister in law will arrive Friday night and it would be nice for them to get to spend a lot of time together. I'm also going to talk to the supply people I get the oximeter from because I don't know who will be the company supplying the oyxgen and Chris really wants a nice small unit that he will be able to take out with him.
I told Chris I'd get his oximeter for him and he will also need a few pairs of sweat pants, sneakers (i have no clue where his are because he rarely, if ever, wears them). I'm also contemplating getting him an IPOD nano that he can use when he wakes up in the middle of the night as a diversion from his breathing difficulties. It might also be a good way of getting him to measure how long it takes for him to feel better.
I'll go over there in a bit so that I can see how he's feeling and then sit with him when he eats breakfast. I believe at some point today we'll bring a beer or two over for him, I just have to ask the nurses what would be a good time to give it to him. I don't want him to have one just before/after his pills. Yes, the psychiatrist cleared it so that should bring a smile to his face.
I will need to speak to the doctor's tomorrow and find out what the plan is. It seems they just dropped him off and nobody was around to talk to about what we are after and about how long everything might take. I'd like to get him home at the end of the week because it looks like his brother and sister in law will arrive Friday night and it would be nice for them to get to spend a lot of time together. I'm also going to talk to the supply people I get the oximeter from because I don't know who will be the company supplying the oyxgen and Chris really wants a nice small unit that he will be able to take out with him.
Saturday, March 27, 2010
Saturday
Chris had a good night (for him) and his coughing is more productive. He's now realized that drinking a lot of water does help with the congestion, so that should give him some more relief. He has been successfully weaned off his pulse oximeter and is handling the lower oxygen without any problem. He does want the oximeter, but he'll need to wait until tomorrow, I'm not going to do much today other than go back to visit him around lunch time.
He did have some breakfast and has decided that he will eat several small meals a day so once we get through today he'll start getting down to the dining room for lunch and dinner or they will bring the food to him when I'm not there. He liked whatever it was they gave him for breakfast (I think it was some kind of fritatta) so that's a good start. As is the case with cancer patients he has lost a fair bit of weight but has recognized it and is determined to put weight on before chemo starts. He will get all the butter he wants... and then he can drink beer as that's a good source of calories. At this point it's more about the calories and avoiding some of the big Vitamin K veggies than anything else. I'm working on getting him to drink his coffee with less sugar.
He should be having his Physical therapy about now and the goal is to get him so he can get up and down the stairs by himself and also so that he can manage on his own. Now that he is comfortable with the oxygen and has taught himself how to relax and breathe we will probably be good with having the visiting nurses come by to check on him as well as setting up a buddy system so he knows which neighbor is home and how to reach them if there's a problem.
The oncologist mentioned that they did not put the original biopsy sample into the solution so once Chris starts chemo they will try to get another sample that can then be sent to Response Genetics.
Off for a much needed shower!
He did have some breakfast and has decided that he will eat several small meals a day so once we get through today he'll start getting down to the dining room for lunch and dinner or they will bring the food to him when I'm not there. He liked whatever it was they gave him for breakfast (I think it was some kind of fritatta) so that's a good start. As is the case with cancer patients he has lost a fair bit of weight but has recognized it and is determined to put weight on before chemo starts. He will get all the butter he wants... and then he can drink beer as that's a good source of calories. At this point it's more about the calories and avoiding some of the big Vitamin K veggies than anything else. I'm working on getting him to drink his coffee with less sugar.
He should be having his Physical therapy about now and the goal is to get him so he can get up and down the stairs by himself and also so that he can manage on his own. Now that he is comfortable with the oxygen and has taught himself how to relax and breathe we will probably be good with having the visiting nurses come by to check on him as well as setting up a buddy system so he knows which neighbor is home and how to reach them if there's a problem.
The oncologist mentioned that they did not put the original biopsy sample into the solution so once Chris starts chemo they will try to get another sample that can then be sent to Response Genetics.
Off for a much needed shower!
Friday, March 26, 2010
Long, long day (but not all bad)
The phone rang at 4:45 so that's when my day started. Now, at 7:45 it's winding down and I can relax until I have to go see him at his new place at 7 where they need to draw blood and check his IMR levels again before he can be given more coumadin. I suspect it's going to take a bit of time to get that number where they want it. The facility does not have any people on staff to draw blood so they have an outside company come in early in the morning. He should be okay during the week because the psychiatrist will meet him down in radiology so if they need it she will be there. She's the perfect person to fill in for me and he trusts her.
Naturally, after calling me in a panic and asking me to come down as soon as I can he was sound asleep when I arrived. It took until 2 this afternoon to get the authorization to transport him and then we had to wait until 5:30 before they were able to pick him up so it was after 6:15 before he was there and settled in. He seems very pleased with the place and made the decision that he will not stare at the pulse oximeter but he still wants one around to check his levels. I'll go get him one tomorrow that he can put on his finger when he feels like he has to check his oxygen levels. He's successfully transitioned from 6 liters of oxygen down to 5 and wants to go to 4. He asked when breakfast was going to be and told the nurse that one of the things he has to do this week is to put on weight.
That being said, I'm off to check email and relax. Nice ending to the day! Chris is in good spirits and is starting to take control back which is great.
Naturally, after calling me in a panic and asking me to come down as soon as I can he was sound asleep when I arrived. It took until 2 this afternoon to get the authorization to transport him and then we had to wait until 5:30 before they were able to pick him up so it was after 6:15 before he was there and settled in. He seems very pleased with the place and made the decision that he will not stare at the pulse oximeter but he still wants one around to check his levels. I'll go get him one tomorrow that he can put on his finger when he feels like he has to check his oxygen levels. He's successfully transitioned from 6 liters of oxygen down to 5 and wants to go to 4. He asked when breakfast was going to be and told the nurse that one of the things he has to do this week is to put on weight.
That being said, I'm off to check email and relax. Nice ending to the day! Chris is in good spirits and is starting to take control back which is great.
Thursday, March 25, 2010
Waiting on the Duc's throne to arrive.....
Then I'll go back down to the hospital where he is eagerly awaiting (not) his B12 shot. B12 and Folic Acid are required when Alimta is given as part of the chemo. The B12 shot is good for a month so no reason to wait when it can be ordered while he is there. The Folic Acid can start when we get closer to the treatment. Everyone showed up at one time this morning so I need to speak to the nutritionist about his coumadin and what he can/can't have and then the case manager about his moving to rehab when I go back down there. As far as I know it will happen after 12:30 tomorrow which is when the psychiatrist has arranged to borrow the machine that can be used to get his blood level instead of them doing a blood draw. They will also arrange to come down to radiology next week when he's in for his treatment if there's a need to keep checking his levels.
We'll need to work real hard on getting Chris moving up and about as soon as we can. He does have limited lung capacity right now so the key is to find the perfect level to allow him to gain strength but not too much that he gets too tired. I'll also stop somewhere on the way to the hospital and bring him something to eat. One of our friends was going up to see him when I left so hopefully that also lifted his spirits. Once he's down the street he should have visitors every day and I can go see him on my way home from work.
We'll need to work real hard on getting Chris moving up and about as soon as we can. He does have limited lung capacity right now so the key is to find the perfect level to allow him to gain strength but not too much that he gets too tired. I'll also stop somewhere on the way to the hospital and bring him something to eat. One of our friends was going up to see him when I left so hopefully that also lifted his spirits. Once he's down the street he should have visitors every day and I can go see him on my way home from work.
Wednesday, March 24, 2010
Wednesday
First I have to mention the unique and creative floral arrangement that was delivered to Chris today. Knowing what a great sense of humor he has, they decided to send him an arrangement that has two parts to it. The carnations are all around both parts and the top has petals on each one and then a hershey's chocolate kiss on it. Yes, he got a floral arrangement made out to look like a pair of boobs. That's definitely a first for the hospital and it sure made Chris smile. Our friends at the floral shop will probably put a picture on their web site because it's so unique that I fail to see how it can't make a recipient smile.
It looks like they are planning on moving Chris to a rehab facility at the end of the week. I don't know if that's tomorrow, Friday or Saturday so I will have to ask them in the morning what they are looking at. The place is right down the street from us which is good because he can have everyone he knows in town stop by to see him and he can also come out for a few hours at a time. They will also take him to his radiation appointments which is good and that will free up some of my time so I can go to work next week. I'll find out soon about when he'll come home, but a lot will depend upon getting things sorted in the house and arranging for the oxygen and other stuff. Chris will not go anywhere without his oxygen monitor so we will have to see about renting or buying one that can be taken out with us.
Radiation went well again today and Chris is going to ask them to take a picture of him in his mask because he says it's like a Silence of the Lambs one and he seems to be taking all that in stride.
Chris's oncologist said that because of the clots they will not be able to use Avastin as part of the treatment so it will be carboplatin (I'll have to find out the spelling) and then either Alimta or Taxol along with the zometa. She said she had no preference whether the second one was Alimta or Taxol so now I will go read up on the successes of using one over the other. I think when it comes to secondary chemo drugs there seem to be very little differences in them. She told Chris that the chemo is going to be tough and he seems ready for it. The only thing that's stressed him to date are blood draws....
Next update I should know when he's being moved.
It looks like they are planning on moving Chris to a rehab facility at the end of the week. I don't know if that's tomorrow, Friday or Saturday so I will have to ask them in the morning what they are looking at. The place is right down the street from us which is good because he can have everyone he knows in town stop by to see him and he can also come out for a few hours at a time. They will also take him to his radiation appointments which is good and that will free up some of my time so I can go to work next week. I'll find out soon about when he'll come home, but a lot will depend upon getting things sorted in the house and arranging for the oxygen and other stuff. Chris will not go anywhere without his oxygen monitor so we will have to see about renting or buying one that can be taken out with us.
Radiation went well again today and Chris is going to ask them to take a picture of him in his mask because he says it's like a Silence of the Lambs one and he seems to be taking all that in stride.
Chris's oncologist said that because of the clots they will not be able to use Avastin as part of the treatment so it will be carboplatin (I'll have to find out the spelling) and then either Alimta or Taxol along with the zometa. She said she had no preference whether the second one was Alimta or Taxol so now I will go read up on the successes of using one over the other. I think when it comes to secondary chemo drugs there seem to be very little differences in them. She told Chris that the chemo is going to be tough and he seems ready for it. The only thing that's stressed him to date are blood draws....
Next update I should know when he's being moved.
Tuesday, March 23, 2010
Tuesday Night
Radiation appointment/treatment went well and Chris did have some of his ensure and water after he came back. No changes overall, still on the oxygen and that will not change until the clots dissolve. I did not ask why they opted not to treat the clots but would have to speculate that the less medication he's given right now the better.
I will go down there around 8 and then after his radiation appointment I will go home and spend the afternoon working. I'm hoping over the next few days we will have a few friends go and visit him which will help him pass the time. I'm guessing that the oncologists and other doctor's are not used to dealing with people who do their homework ahead of time but it seems to me based on the question I asked the radiology oncologist that this is the treatment they are using. http://www.mmccancer.com/mmc_radonc/treatment/imrt.html
He mentioned that there are multiple tiny lesions in the brain and that treating it will all over brain radiation will allow them to destroy anything that was too tiny to be picked up by the MRI.
It will be 10 treatments and then he will be able to start chemo. While he is on the blood thinners (well he is not on any because the drugs were too effective - not a bad thing) or has thinner blood they won't be able to put in the chemo port so we will see what they want to do. If the chemo can shrink the tumors the way the doctor's think it will, they might be able to look to use some of the newer radiation (TomoTherapy) on him which would zap any of the tumors that remain.
Will cross my fingers that Chris continues to feel no effects from the radiation but sometimes they can take a while to kick in. I was amazed at how many elderly people were walking around in the radiology department and were accompanied by their spouses who seemed to be far more sick than they appeared to be. I told Chris those are the people who are the true inspiration, that despite their ages, they are determined to get through things and to continue getting on with life.
I can use Chris's new phone to access this site, but I'm unable right now to get the comment/update button to work.
Oh, for those that were asking about the medication Chris was given for the pulmonary embolisms, it's LOVENOX. It's specific for DVT and he is delighted and thrilled that he no longer has to be stabbed in the stomach to receive it.
Off to bed!
I will go down there around 8 and then after his radiation appointment I will go home and spend the afternoon working. I'm hoping over the next few days we will have a few friends go and visit him which will help him pass the time. I'm guessing that the oncologists and other doctor's are not used to dealing with people who do their homework ahead of time but it seems to me based on the question I asked the radiology oncologist that this is the treatment they are using. http://www.mmccancer.com/mmc_radonc/treatment/imrt.html
He mentioned that there are multiple tiny lesions in the brain and that treating it will all over brain radiation will allow them to destroy anything that was too tiny to be picked up by the MRI.
It will be 10 treatments and then he will be able to start chemo. While he is on the blood thinners (well he is not on any because the drugs were too effective - not a bad thing) or has thinner blood they won't be able to put in the chemo port so we will see what they want to do. If the chemo can shrink the tumors the way the doctor's think it will, they might be able to look to use some of the newer radiation (TomoTherapy) on him which would zap any of the tumors that remain.
Will cross my fingers that Chris continues to feel no effects from the radiation but sometimes they can take a while to kick in. I was amazed at how many elderly people were walking around in the radiology department and were accompanied by their spouses who seemed to be far more sick than they appeared to be. I told Chris those are the people who are the true inspiration, that despite their ages, they are determined to get through things and to continue getting on with life.
I can use Chris's new phone to access this site, but I'm unable right now to get the comment/update button to work.
Oh, for those that were asking about the medication Chris was given for the pulmonary embolisms, it's LOVENOX. It's specific for DVT and he is delighted and thrilled that he no longer has to be stabbed in the stomach to receive it.
Off to bed!
On the fly post
I'll ask someone in the family to add a comment here and fill everyone in. Chris has had another rough night with anxiety, this time he waited until 7 to call me versus the 3:45 from yesterday so I'm on my way to see him as soon as I put the garbage out.
He has been moved, the blood thinners are working, they don't anticipate new one's forming. He will start radiation today and he is in a room now where he can get calls and receive visitors.
He has been moved, the blood thinners are working, they don't anticipate new one's forming. He will start radiation today and he is in a room now where he can get calls and receive visitors.
Sunday, March 21, 2010
Sunday afternoon
There is no update except that Chris was in great spirits when I was there and seems to be learning about how to do deep breathing when he starts to feel anxious. They are offering him xanax too which helps him immensely. He was very appreciative of Kellie's visit yesterday and enjoyed his time with her. He also spoke to his mother and brother today and I think they could probably sense he was more upbeat (or at least as upbeat as someone in his condition can be). It's still kind of hard on him to maintain his oxygen intake when he talks but as I said, he's learning to relax when he's done with the conversations so it's not taking long for him to stabilize.
I will call the ICU in the morning to find out what time they've scheduled Chris to see the radiologist so then I can plan my day. Tuesday his throne will be delivered so I'll need to go see Chris in the morning and then come home for the delivery.
I will call the ICU in the morning to find out what time they've scheduled Chris to see the radiologist so then I can plan my day. Tuesday his throne will be delivered so I'll need to go see Chris in the morning and then come home for the delivery.
Sunday Morning
I'm unsure how long they will be keeping Chris in the hospital. I should be able to talk to the radiation oncologist tomorrow to find out the schedule for radiation (it will be every day for three weeks) and whether they anticipate moving him out of ICU and into another room over in the cancer center or not.
In a nutshell, Chris had a panic attack on Thursday that resulted in him being unable to catch his breath. When someone takes pain medication one of the 'side effects' can be an impact on the breathing, so add that in and it made for even more anxiety. His saturation levels had been in the 90's when he left the hospital at the beginning of March, but since he's been on the pain medication for a while, this reduction may have been gradual. Now, the clots in the lungs can also add a strain to the heart which could then also reduce the breathing a bit so what we had was sort of a "perfect storm" brewing and luckily we got to the hospital before the clots that we did not know about moved around and cause something we won't talk about to happen. The doctor said yesterday the overall condition of his lungs is good and that is one reason why the clots stopped there. These clots can originate in the legs, but if the lungs are in good shape, as his is, they are usually stopped before they head too far north.
I will be setting up a spreadsheet as soon as I'm done that I will give to Chris when I go down to the hospital. That way they can let him know about things that they plan on doing on certain days. He still continues to have panic attacks, but now they are giving him xanax the wonder drug so he should be able to stay calm when they come in and out. They bring all the equipment to his room, but nobody seems to tell him they are going to show up so it's overwhelming. The spreadsheets will also help us plan so that when he's out of the hospital we can keep him on the same schedule.
The doctor put him on Decadron the other day which is a steroidal anti inflammatory that will help prevent any swelling that might occur as a result of the radiation. From what I read, it seems sometimes they prescribe it after they know how people react, but they want to make sure that once they start the treatment they can get rid of the METS. As an FYI, there were no METS on his brain on 12/31 so that should give you some idea how aggressive the cancer is. A significant number of people with lung cancer do get the metastases there, so he's not experiencing anything that they have not seen over and over again. And even though there's going to be a delay in starting chemo, it's only two weeks as he was not going to start it until 3/30. I will verify the method they will use but it appears from Chris's explanation about how it works that it's the newest technology and all the leading hospitals have it.
I think that's about it right now. Kellie came to visit yesterday and I know that made Chris happy. His new "throne" will be arriving on Tuesday so when he comes home he'll have something to sit/recline and sleep on if he needs to.
I will be home later this afternoon and will start getting things ready for the furniture's arrival on Tuesday.
In a nutshell, Chris had a panic attack on Thursday that resulted in him being unable to catch his breath. When someone takes pain medication one of the 'side effects' can be an impact on the breathing, so add that in and it made for even more anxiety. His saturation levels had been in the 90's when he left the hospital at the beginning of March, but since he's been on the pain medication for a while, this reduction may have been gradual. Now, the clots in the lungs can also add a strain to the heart which could then also reduce the breathing a bit so what we had was sort of a "perfect storm" brewing and luckily we got to the hospital before the clots that we did not know about moved around and cause something we won't talk about to happen. The doctor said yesterday the overall condition of his lungs is good and that is one reason why the clots stopped there. These clots can originate in the legs, but if the lungs are in good shape, as his is, they are usually stopped before they head too far north.
I will be setting up a spreadsheet as soon as I'm done that I will give to Chris when I go down to the hospital. That way they can let him know about things that they plan on doing on certain days. He still continues to have panic attacks, but now they are giving him xanax the wonder drug so he should be able to stay calm when they come in and out. They bring all the equipment to his room, but nobody seems to tell him they are going to show up so it's overwhelming. The spreadsheets will also help us plan so that when he's out of the hospital we can keep him on the same schedule.
The doctor put him on Decadron the other day which is a steroidal anti inflammatory that will help prevent any swelling that might occur as a result of the radiation. From what I read, it seems sometimes they prescribe it after they know how people react, but they want to make sure that once they start the treatment they can get rid of the METS. As an FYI, there were no METS on his brain on 12/31 so that should give you some idea how aggressive the cancer is. A significant number of people with lung cancer do get the metastases there, so he's not experiencing anything that they have not seen over and over again. And even though there's going to be a delay in starting chemo, it's only two weeks as he was not going to start it until 3/30. I will verify the method they will use but it appears from Chris's explanation about how it works that it's the newest technology and all the leading hospitals have it.
I think that's about it right now. Kellie came to visit yesterday and I know that made Chris happy. His new "throne" will be arriving on Tuesday so when he comes home he'll have something to sit/recline and sleep on if he needs to.
I will be home later this afternoon and will start getting things ready for the furniture's arrival on Tuesday.
Friday, March 19, 2010
Update on today
I am headed for bed soon, long day/night.
Chris will be staying in ICU while they try to deal with the clots. The bigger concern is that the cancer can cause clots to form faster than the drugs can break them down. If they can bring it under control they can proceed with the radiation and then the chemo. The MRI showed some mets on the brain so they will start that on Monday (I hope).
I will talk to the oncologist in the morning around 8 then I will be at the hospital for a bit. Then I'll figure out what else we need to do.
Chris will be staying in ICU while they try to deal with the clots. The bigger concern is that the cancer can cause clots to form faster than the drugs can break them down. If they can bring it under control they can proceed with the radiation and then the chemo. The MRI showed some mets on the brain so they will start that on Monday (I hope).
I will talk to the oncologist in the morning around 8 then I will be at the hospital for a bit. Then I'll figure out what else we need to do.
Going back to the hospital
Hopefully I will find out how long they think it will take to get the clots dissolved and then if they are going to move up his appointment to get the port put in (it's being done at the same place). I will get an early night and then head back over there in the morning. Naturally I expect the doctor's to visit him while I'm on my way back over there.
Thursday, March 18, 2010
Post MRI #1
We are back and the first test (and a half) is complete. He's been given instructions to drink lots of water and fluids in order to get rid of whatever the stuff was that they injected today for the contrast.
I'm also going to see about finding a nutritionist that can help formulate the proper diet for Chris. If someone else can come up with a plan that will be easier then my trying to digest (sorry can't think of a better adjective) three books to identify exactly what foods he should have and then trying to find recipes that will match it. I like to sample the foods I cook so I won't be the best person to judge the quality of his meal because I layer my flavors and I have a feeling his diet will require less.
There's a nice web site I found that has grain fed beef and meat related products that I am going to try. Even if he's not going to be able to have much, it will be worth it because I can have that too.
I'm also going to see about finding a nutritionist that can help formulate the proper diet for Chris. If someone else can come up with a plan that will be easier then my trying to digest (sorry can't think of a better adjective) three books to identify exactly what foods he should have and then trying to find recipes that will match it. I like to sample the foods I cook so I won't be the best person to judge the quality of his meal because I layer my flavors and I have a feeling his diet will require less.
There's a nice web site I found that has grain fed beef and meat related products that I am going to try. Even if he's not going to be able to have much, it will be worth it because I can have that too.
Wednesday, March 17, 2010
Some changes to the blog
For now the comments have been opened up and anyone can comment either by name or anonymously. I've also removed the option for searching via google so that should enable it to keep out people who like to post comments "visit this". If I notice this kind of activity I might need to update it, but for now I'll leave it open.
FMLA
I guess since nowadays we are used to seeing so many different deductions on our paychecks that most did not pay attention to a new on that debuted last year. We are now all paying into an employee funded program that will allow up to six weeks or forty two days if you choose to take it that way of (reduced) paid leave. Naturally, since it's something that was put together at the state level and uploaded to their web site it should not come as a surprise to find that it's clear as mud.
They say if you are going to take the leave in day increments NOT to fill it out until the leave starts, but then on the same page they want you to fill in all the time you took and will take. That works if you are incredibly psychic or you just get that "vibe", otherwise it's a real nuisance to figure out. I'm sure (no offense to my attorney friends) there must be people who now specialize in FMLA, but I don't think even they can tell us what days I'll need to take.
All that aside, we'll figure it out when we need to.
No improvement yet on Chris's left vocal chord but the ENT promised to call me back once he had some answers on what we can do to treat it.
They say if you are going to take the leave in day increments NOT to fill it out until the leave starts, but then on the same page they want you to fill in all the time you took and will take. That works if you are incredibly psychic or you just get that "vibe", otherwise it's a real nuisance to figure out. I'm sure (no offense to my attorney friends) there must be people who now specialize in FMLA, but I don't think even they can tell us what days I'll need to take.
All that aside, we'll figure it out when we need to.
No improvement yet on Chris's left vocal chord but the ENT promised to call me back once he had some answers on what we can do to treat it.
Tuesday, March 16, 2010
Response Genetics
One of the reasons why there is a bit of a wait (well it's really only a few days) in getting treatment going is that the Oncologist has requested that the Pathologist send the tissue sample from Chris's biopsy over to a company called Response Genetics. This company will take this sample and perform RNA analysis on it that will then help Dr Fiore plan the treatment. If they are unable to use the sample Chris might need to have another biopsy done in that area (behind his ear) and that could be a bit of an issue because the size of that tumor is small and in a harder to reach area. The request was sent yesterday to send the sample off to them so unless I hear otherwise we'll presume they can send back the markers before we go in next Friday. Response Genetics has a web site but there isn't a whole lot of information on it other than that they do what they do (genetic testing).
The port will be put in on the 24th and his first chemo treatment will be on 3/30.
The port will be put in on the 24th and his first chemo treatment will be on 3/30.
Monday, March 15, 2010
The Introduction
This blog will be used to provide updates on our upcoming battle. I say "our" because it is something that Chris is not going through alone. One of the things that I've learned over the past few days while trying to find as much information as I could is that there is, literally, too much out there and a lot of it is difficult to read, so that will continue. I was particularly touched by the people who took the time to write about what they were going through as it is straight from the heart and is not distorted by statistics, opinions or speculation. I have chosen to share our battle (well my writing at this point but we'll see about getting Chris involved when he's ready) so that our friends and family can stay up to date and to also make sure that everyone knows exactly what's happening.
The outpouring of support from family and friends has really been incredible and has deeply touched us all. It's not always easy to convey thoughts and feelings verbally or otherwise so even if you have not said anything, that's perfectly fine too! We all deal with adversity in a variety of ways, and we will both meet it head on and will be prepared to handle whatever is thrown our way.
So, that being said, this week will bring us two MRI's that will be used as a baseline for his upcoming treatment.
Next week Chris will receive a pump that will be inserted in his chest just under the skin. The pump is the preferred method of administering chemotherapy these days because it has the least risk of infection and also preserves the veins. It can also be used to draw blood which is critical before treatments are given.
Chemotherapy will be administered in the doctor's office. When we were there on Friday and the doctor mentioned the pump she asked Chris if he would like to talk to another patient who was in a treatment room and to see the pump, he declined.
I will talk to the doctor's office tomorrow to get his appointment scheduled for the pump. She mentioned a slew of different doctor's that do this thing and when she asked if I had a preference (mind you I did not know most of them) I said, the one who has the most empathy because Chris is finally facing his fear of needles so anyone who won't mind my holding his hand is the right one. She said that one of the doctor's was not the most empathetic but he was the one who did the biopsy on the tumor behind Chris's ear so I think we'll use him. There's a big benefit to having a lot of tests done at the same place or by the same doctor.
I was impressed with the doctor we saw the other day for several reasons, but one of the most important was that when I asked her to explain what a marker on the cytology report meant because it was negative, she picked up the phone and called the pathologist who did the actual test. I know what I know and more importantly I know what I don't know, so for the doctor to just go straight to the source was terrific. I'm not sure what she was thinking when I mentioned that I knew what the first three markers meant (it took a lot of digging and then verifying the sources of those web sites and medical journals before I was sure that what I read was accurate), but I'm pretty sure she knows she's dealing with someone who did as much homework as she could (no comments from the family on why I hated it when I was in school) and was prepared to ask the relevant questions.
I had thought about an email list, but then when I got a few more brain cells involved I decided this would be more efficient (not to mention that I might leave someone off) and would also allow those who come by to comment if they are so inclined and to not have to worry about deleting it.
More tomorrow. Love and hugs to all.
~Stacy
PS The post is signed GiGi because I used her email address when I created this blog. They seem to like gmail addresses.
The outpouring of support from family and friends has really been incredible and has deeply touched us all. It's not always easy to convey thoughts and feelings verbally or otherwise so even if you have not said anything, that's perfectly fine too! We all deal with adversity in a variety of ways, and we will both meet it head on and will be prepared to handle whatever is thrown our way.
So, that being said, this week will bring us two MRI's that will be used as a baseline for his upcoming treatment.
Next week Chris will receive a pump that will be inserted in his chest just under the skin. The pump is the preferred method of administering chemotherapy these days because it has the least risk of infection and also preserves the veins. It can also be used to draw blood which is critical before treatments are given.
Chemotherapy will be administered in the doctor's office. When we were there on Friday and the doctor mentioned the pump she asked Chris if he would like to talk to another patient who was in a treatment room and to see the pump, he declined.
I will talk to the doctor's office tomorrow to get his appointment scheduled for the pump. She mentioned a slew of different doctor's that do this thing and when she asked if I had a preference (mind you I did not know most of them) I said, the one who has the most empathy because Chris is finally facing his fear of needles so anyone who won't mind my holding his hand is the right one. She said that one of the doctor's was not the most empathetic but he was the one who did the biopsy on the tumor behind Chris's ear so I think we'll use him. There's a big benefit to having a lot of tests done at the same place or by the same doctor.
I was impressed with the doctor we saw the other day for several reasons, but one of the most important was that when I asked her to explain what a marker on the cytology report meant because it was negative, she picked up the phone and called the pathologist who did the actual test. I know what I know and more importantly I know what I don't know, so for the doctor to just go straight to the source was terrific. I'm not sure what she was thinking when I mentioned that I knew what the first three markers meant (it took a lot of digging and then verifying the sources of those web sites and medical journals before I was sure that what I read was accurate), but I'm pretty sure she knows she's dealing with someone who did as much homework as she could (no comments from the family on why I hated it when I was in school) and was prepared to ask the relevant questions.
I had thought about an email list, but then when I got a few more brain cells involved I decided this would be more efficient (not to mention that I might leave someone off) and would also allow those who come by to comment if they are so inclined and to not have to worry about deleting it.
More tomorrow. Love and hugs to all.
~Stacy
PS The post is signed GiGi because I used her email address when I created this blog. They seem to like gmail addresses.
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