Sometimes the music just says it for you....
The world is a vampire, sent to drain
Secret destroyers, hold you up to the flames
And what do I get, for my pain?
Betrayed desires, and a piece of the game
Even though I know - I suppose I'll show
All my cool and cold - like old job
Despite all my rage I am still just a rat in a cage
Despite all my rage I am still just a rat in a cage
Then someone will say what is lost can never be saved
Despite all my rage I am still just a rat in a cage
Now I'm naked, nothing but an animal
But can you fake it, for just one more show?
And what do you want?
I want to change
And what have you got, when you feel the same?
Even though I know - I suppose I'll show
All my cool and cold - like old job
Despite all my rage I am still just a rat in a cage
Despite all my rage I am still just a rat in a cage
Then someone will say what is lost can never be saved
Despite all my rage I am still just a rat in a cage
Tell me I'm the only one
Tell me there's no other one
Jesus was the only son, yeah.
Tell me I'm the chosen one
Jesus was the only son for you
Despite all my rage I am still just a rat in a cage
Despite all my rage I am still just a rat in a cage
And someone will say what is lost can never be saved
Despite all my rage I am still just a rat in a cage
Despite all my rage am I still just a rat in a-
Despite all my rage am I still just a rat in a-
Despite all my rage am I still just a rat in a cage
Tell me I'm the only one
Tell me there's no other one
Jesus was the only son for you
[x4]
And I still beleive that I cannot be saved
Friday, April 30, 2010
Thursday, April 29, 2010
Thursday's thoughts
Brian is feeling good. He made himself a giant omelet last night and ate the whole thing. a pound of bacon, 10 eggs , onions and cheese.
Think he had a protein craving?...hum.....at least he cut it in half and ate some at dinner and some a few hours later along with a half gallon of milk. It was quite pretty as well....all nicely rolled up and everything.
I am always grateful no matter the pain in the purse for the fact that Brian will eat despite the chemotherapy. It is my strong opinion that the patients that do poorly are the ones that don't eat well. I have seen it time and time again. The body really needs that protein to combat and regenerate.
I have no idea where the money for the food budget is going to come from. But he's really doing much better then expected, so food it is.... (my mother will tell you I could do with a lot less food anyhow, she's pretty good at finding some excuse to point out my fat).
after all the traveling expenses and food expenses and prescription expenses and all the other things Brian's needed. (before the medicaid started last week)..there is too much month left at the end of my money this week. To make matters worse, when I checked on "where's my refund" I see the IRS has pushed back our refund date twice now....I Googled it and I see I am just one of many that game is being played with. And we all know the IRS doesn't give a shit if I needed that money to feed my kids and pay bills with. (yeah, we got real "change" in the white house now...)
I'd be lying if I didn't admit to a modicum of depression today. Maybe even a little more then a modicum.
The vet thinks that Twittens has a mass in her intestine....and my doctor is concerned with my health and the damage stress is doing to it. Yep...a little more then a little depressed today.
I tried last night to talk to Scott and Stephanie about how things have to be even tougher then before because if the lack of refund money next week....I would be lying if I said I was thrilled even a tiny bit with their responses. I know they "get it"....but sometimes I wish they'd really "GET IT".
time to ebay off some things...I can say it doesn't matter, but that's not totally the truth..but I do get it and I know how to do what is necessary. But I am feeling the pain today for sure.
I'm waiting for the camera battery to recharge...then I will continue to prepare my ebay listings for uploaded tonight. I usually schedule things to post between 9-10pm.
Think he had a protein craving?...hum.....at least he cut it in half and ate some at dinner and some a few hours later along with a half gallon of milk. It was quite pretty as well....all nicely rolled up and everything.
I am always grateful no matter the pain in the purse for the fact that Brian will eat despite the chemotherapy. It is my strong opinion that the patients that do poorly are the ones that don't eat well. I have seen it time and time again. The body really needs that protein to combat and regenerate.
I have no idea where the money for the food budget is going to come from. But he's really doing much better then expected, so food it is.... (my mother will tell you I could do with a lot less food anyhow, she's pretty good at finding some excuse to point out my fat).
after all the traveling expenses and food expenses and prescription expenses and all the other things Brian's needed. (before the medicaid started last week)..there is too much month left at the end of my money this week. To make matters worse, when I checked on "where's my refund" I see the IRS has pushed back our refund date twice now....I Googled it and I see I am just one of many that game is being played with. And we all know the IRS doesn't give a shit if I needed that money to feed my kids and pay bills with. (yeah, we got real "change" in the white house now...)
I'd be lying if I didn't admit to a modicum of depression today. Maybe even a little more then a modicum.
The vet thinks that Twittens has a mass in her intestine....and my doctor is concerned with my health and the damage stress is doing to it. Yep...a little more then a little depressed today.
I tried last night to talk to Scott and Stephanie about how things have to be even tougher then before because if the lack of refund money next week....I would be lying if I said I was thrilled even a tiny bit with their responses. I know they "get it"....but sometimes I wish they'd really "GET IT".
time to ebay off some things...I can say it doesn't matter, but that's not totally the truth..but I do get it and I know how to do what is necessary. But I am feeling the pain today for sure.
I'm waiting for the camera battery to recharge...then I will continue to prepare my ebay listings for uploaded tonight. I usually schedule things to post between 9-10pm.
Wednesday, April 28, 2010
wednesday's musings
It's cold here today. It's also very windy, but because we're on the top of a mountain it is always windy. I love the wind.
It's kind of ironic. We should be celebrating this week, our first year anniversary in the new house. But truth be told, no one really feels like celebrating. We're all feeling the effects of 4 months now of constant stress, and constant running around.
We have a few weeks now where the pace is slower. That has it's good sides and it's bad sides. On one hand it gives us the time to get caught up on things that have gotten shoved in a corner, on the other hand, it gives us time to ponder and worry about things we can't control right now. Like Brian's future, unpaid bills and other projects we won't get to for some time.
It's certainly not at all where we envisioned we would be a year out from our move.
Things change and while I am a creature of habit and abhor change on principal, I openly embrace good changes down the line. It's kind of hard for me to currently identify the silver lining here. Now, don't get me wrong..I know there will be one, there always is, it's just sometimes the suffering is significant on the path to enlightenment.
It's hard to keep the pace that we've been running on for such a long time and not feel the burn so to speak. Brian suffered so many significant side effects from the chemotherapy of 10 years ago, it seemed like we never really got totally off the first merry go round before being dragged kicking and screaming back to a second ride.
To some extent this type of lifestyle has become a way of life for us, but it is not one I recommend for the average person. The long term consequences are not good. Believe me, I know...after all I did just see my doctor yesterday. But we didn't choose this, we only deal with what is thrown our way.
Brian 's not sure what to do with himself today. He's tired, but bored. He brought me a jar of change a little while ago to see if I would take it to the coin star and cash it in so I could buy him a cheap computer game.
This is what our life has become?.....one jar of change after another....a stack of unpaid bills...a wash basket of problems...not really where I saw myself being. But the truth is it's not where you are going that matters. It's what you do each day. And even though we're mucked up in mud right now, we have accomplished a great deal despite those sometimes overwhelming obstacles.
When Brian was on the pediatric cancer unit before, we were in the hospital a lot. Many days out of each month sometimes. We saw families pulled apart by the stress, we saw children die. Sometimes I don't think that some of the people in my life really even comprehended what we faced. Brian is battling for his life. He has been for 10 years. Make no mistake....this type of cancer kills. We face that possibility every day, and we have for a long time now. Brian faces a battle for the rest of his life, even if the transplant is a success. He has permanent damage. His life will never be normal. But I have never seen someone fight with the attitude and determination that Brian has. And he never loses sight of his passions in life. I have watched him at his lowest and still been privileged to verbally spar, discuss and dissect things about life many people barely give a thought to. Even though he makes me NUTS.
I want to thank Stephanie's friend and coworker Patricia Grego for her lovely framed poem she wrote about Brian. It was very touching and kind.
It's kind of ironic. We should be celebrating this week, our first year anniversary in the new house. But truth be told, no one really feels like celebrating. We're all feeling the effects of 4 months now of constant stress, and constant running around.
We have a few weeks now where the pace is slower. That has it's good sides and it's bad sides. On one hand it gives us the time to get caught up on things that have gotten shoved in a corner, on the other hand, it gives us time to ponder and worry about things we can't control right now. Like Brian's future, unpaid bills and other projects we won't get to for some time.
It's certainly not at all where we envisioned we would be a year out from our move.
Things change and while I am a creature of habit and abhor change on principal, I openly embrace good changes down the line. It's kind of hard for me to currently identify the silver lining here. Now, don't get me wrong..I know there will be one, there always is, it's just sometimes the suffering is significant on the path to enlightenment.
It's hard to keep the pace that we've been running on for such a long time and not feel the burn so to speak. Brian suffered so many significant side effects from the chemotherapy of 10 years ago, it seemed like we never really got totally off the first merry go round before being dragged kicking and screaming back to a second ride.
To some extent this type of lifestyle has become a way of life for us, but it is not one I recommend for the average person. The long term consequences are not good. Believe me, I know...after all I did just see my doctor yesterday. But we didn't choose this, we only deal with what is thrown our way.
Brian 's not sure what to do with himself today. He's tired, but bored. He brought me a jar of change a little while ago to see if I would take it to the coin star and cash it in so I could buy him a cheap computer game.
This is what our life has become?.....one jar of change after another....a stack of unpaid bills...a wash basket of problems...not really where I saw myself being. But the truth is it's not where you are going that matters. It's what you do each day. And even though we're mucked up in mud right now, we have accomplished a great deal despite those sometimes overwhelming obstacles.
When Brian was on the pediatric cancer unit before, we were in the hospital a lot. Many days out of each month sometimes. We saw families pulled apart by the stress, we saw children die. Sometimes I don't think that some of the people in my life really even comprehended what we faced. Brian is battling for his life. He has been for 10 years. Make no mistake....this type of cancer kills. We face that possibility every day, and we have for a long time now. Brian faces a battle for the rest of his life, even if the transplant is a success. He has permanent damage. His life will never be normal. But I have never seen someone fight with the attitude and determination that Brian has. And he never loses sight of his passions in life. I have watched him at his lowest and still been privileged to verbally spar, discuss and dissect things about life many people barely give a thought to. Even though he makes me NUTS.
I want to thank Stephanie's friend and coworker Patricia Grego for her lovely framed poem she wrote about Brian. It was very touching and kind.
Tuesday, April 27, 2010
Tuesdays travels....
Well, it has been a long day of driving. But I got my doctor's visit taken care of, and I got Twittens to the vet.
I also got to meet with my friend Jean and her kids for lunch and a quick catch up.
I would have loved to have more time to visit with some other friends, but I was worried about Brian and needed to get home.
I did not go by the old house. I know that it was taken down last summer several months after we moved and I just wasn't interested in opening the emotional possibilities from a visit. Although we couldn't wait to move and the new house is so much bigger and nicer, it was still our home for almost 20 years and I loved it very much.
Thanks to Jean for the ozone veggie washer. I know Brian is thrilled to have salad back on the menu and raw foods are so nutritious and good for him.
Thanks to Donna for the Abraham Lincoln book that was delivered by the men in brown (lol) while I was gone..I know Brian is hankering to read it...and special thanks to Charlie for accommodating his schedule to make it much easier to get Twittens in for that visit. I as always appreciate what you do for our pets.
Brian was hungry and feeling good when I got home. He was ready for dinner and had lots of things to discuss with me since he'd had unfettered access to the history channel all day (sigh).
It's good to see him feeling and looking well as it is now when his blood counts should really start to fall. He really appreciates that he can stay home and relax not have to drive to the hospital for blood work this week.
got some more medical stuff in the mail to deal with, but it can wait until tomorrow...it's certainly not going anywhere...
I also got to meet with my friend Jean and her kids for lunch and a quick catch up.
I would have loved to have more time to visit with some other friends, but I was worried about Brian and needed to get home.
I did not go by the old house. I know that it was taken down last summer several months after we moved and I just wasn't interested in opening the emotional possibilities from a visit. Although we couldn't wait to move and the new house is so much bigger and nicer, it was still our home for almost 20 years and I loved it very much.
Thanks to Jean for the ozone veggie washer. I know Brian is thrilled to have salad back on the menu and raw foods are so nutritious and good for him.
Thanks to Donna for the Abraham Lincoln book that was delivered by the men in brown (lol) while I was gone..I know Brian is hankering to read it...and special thanks to Charlie for accommodating his schedule to make it much easier to get Twittens in for that visit. I as always appreciate what you do for our pets.
Brian was hungry and feeling good when I got home. He was ready for dinner and had lots of things to discuss with me since he'd had unfettered access to the history channel all day (sigh).
It's good to see him feeling and looking well as it is now when his blood counts should really start to fall. He really appreciates that he can stay home and relax not have to drive to the hospital for blood work this week.
got some more medical stuff in the mail to deal with, but it can wait until tomorrow...it's certainly not going anywhere...
Monday, April 26, 2010
labs
Here's Brian's labs from last week....
he'll get new labs the end of this week/beginning of next depending on when his NADIR visit is...
I'd call this rainy days and mondays....
What is it about monday and rain?....it's three monday's in the last month we've had rain. It's depressing.
Brian has a good appetite today, but the side effects of the steroids leave his food choices some what to be desired. (hence the bowl of brown sugar). So I left some better quality "snacks" within easy reach...yikes....
Tomorrow I am heading back to Hillsborough so I can see my own Doctor and Veterinarian. I need a check up and get my rx's renewed and one of my older cats is losing a lot of weight and needs a check up before I leave for the month in Hershey. Thanks to my vet's kindness I was able to coordinate both visits at the same time.
Brian seems okay, though he scratched at his foot and it bruised very easily, which indicates to me that his platelets are dropping. So it makes me wary of being away for the day.
Things here are still a little short tempered, so in a way, I am looking forward to a day away. Though the thought also leaves me nervous as well. But We've been going none stop since right after Christmas with this whole thing, so both being tired and on edge is to be expected.
I will scan and upload Brian's labwork from last week next...for those medically interested.
Brian has a good appetite today, but the side effects of the steroids leave his food choices some what to be desired. (hence the bowl of brown sugar). So I left some better quality "snacks" within easy reach...yikes....
Tomorrow I am heading back to Hillsborough so I can see my own Doctor and Veterinarian. I need a check up and get my rx's renewed and one of my older cats is losing a lot of weight and needs a check up before I leave for the month in Hershey. Thanks to my vet's kindness I was able to coordinate both visits at the same time.
Brian seems okay, though he scratched at his foot and it bruised very easily, which indicates to me that his platelets are dropping. So it makes me wary of being away for the day.
Things here are still a little short tempered, so in a way, I am looking forward to a day away. Though the thought also leaves me nervous as well. But We've been going none stop since right after Christmas with this whole thing, so both being tired and on edge is to be expected.
I will scan and upload Brian's labwork from last week next...for those medically interested.
Sunday, April 25, 2010
Sunday's a pet day....
Well, one of those things that still needed to get done prior to Brian's diagnosis was some cat fixing....( I hate that word fix...it's not like they are broken..but I digress)
We still have a few that needed to be altered. But our budget has been ..hum what's a good word....decimated?...that's a good word...
so a few weeks ago I perusing craigslist and I saw an ad for low cost Spay and neuter. Imagine my utmost joy....
SO today I hauled 5 of the 6 boys (one's still got too much snotty nose) off to get denutted. Thank heavens..one more thing that needed to get done..accomplished. The people seemed very nice and hopefully in the future when my time free's up, I can get involved in their group, but that's way down the line. But Scott and I do miss being involved in pet rescue. ( and we live in a development which desperately needs some help, full of abandoned pets).
So today I thank NO KILL LEHIGH VALLEY for making it easy and affordable to get the boys done. I hope by the time their next event rolls around, we can finish up the girls. Snotty Sammy will have to be done before that...we'll have to keep our eyes open for another low cost option once his cold clears up.
Brian feels pretty good today. His stomach feels bloated, but the nausea is passing. His muscles hurt, but he has a little more energy. He's still all cranked up over the history channel stuff he was watching...to some extent it is good though because he gets all animated and chatty and forgets about feeling crappy.
I finished all the medical paperwork....woohoo....at least for now. I have a huge pile to haul out to the mail tomorrow.
For now I need to get back to work on the laundry pile, put the cat carriers back under the house...and get some groceries. I think since Brian is feeling better, with his mask on, I will let him come with me to the grocery store and see what appeals to him for dinner.
We still have a few that needed to be altered. But our budget has been ..hum what's a good word....decimated?...that's a good word...
so a few weeks ago I perusing craigslist and I saw an ad for low cost Spay and neuter. Imagine my utmost joy....
SO today I hauled 5 of the 6 boys (one's still got too much snotty nose) off to get denutted. Thank heavens..one more thing that needed to get done..accomplished. The people seemed very nice and hopefully in the future when my time free's up, I can get involved in their group, but that's way down the line. But Scott and I do miss being involved in pet rescue. ( and we live in a development which desperately needs some help, full of abandoned pets).
So today I thank NO KILL LEHIGH VALLEY for making it easy and affordable to get the boys done. I hope by the time their next event rolls around, we can finish up the girls. Snotty Sammy will have to be done before that...we'll have to keep our eyes open for another low cost option once his cold clears up.
Brian feels pretty good today. His stomach feels bloated, but the nausea is passing. His muscles hurt, but he has a little more energy. He's still all cranked up over the history channel stuff he was watching...to some extent it is good though because he gets all animated and chatty and forgets about feeling crappy.
I finished all the medical paperwork....woohoo....at least for now. I have a huge pile to haul out to the mail tomorrow.
For now I need to get back to work on the laundry pile, put the cat carriers back under the house...and get some groceries. I think since Brian is feeling better, with his mask on, I will let him come with me to the grocery store and see what appeals to him for dinner.
Saturday, April 24, 2010
the days all blur together
Some days it seems that the endless drone of chores and things just make my mind numb.
The car needed a new radiator. What makes that so annoying is the radiator was only about a year and a half old. And we'd had a problem with it before. Unfortunately we bought it from a place in NJ and taking it back and complaining is unrealistic. It was an expense we hardly needed, but it should resolve that on going problem, now that it was all taken a part and the real problem revealed.
It took time we didn't have, money we didn't have and prevented Scott from doing something else I needed him to do which causes a problem for tomorrow I am undecided on how to resolve.
Sometimes I really just hate my life. It's so fraught with complications we didn't choose on top on the ones we did. The constant stress is wearing on us this week as well. Everyone is short tempered and cranky.
I understand I chose a long time ago to wear the pants, but I want to give them back....
I want a magic fairy to sweep in and solve all the other problems, so I can deal with the big one. Seriously, is that too much to ask?....guess so..damn it.
as a side bar, Stephanie didn't keylock her phone and she kept leaning on it at work and it called me 4 times, once even leaving a voicemail for me....
Friday, April 23, 2010
the nap that disrupted my schedule
Well, I was so tired, that at 7pm I laid down. Of course now I am awake. I don't need to get off schedule, but I am going to take an hour and play on the computer.
I should be doing wash and paperwork..but ...
Brian went to sleep and so far so good, he's still sound asleep. He needs the sleep. He was having trouble today again with the eyesight. He hates that and I want to get him examined still by an ophthalmologist, though I know the oncologist felt it was a normal side effect.
His lips are chapped. I know that means the mouth sores are on their way, I've seen it before, but I had forgotten about how the lips looked. He gets these areas on his lower lip that look like scales. I don't know if he'll let me take a picture of them to share...I'll ask him tomorrow...depends on his mood...sometimes he sees the educational side to sharing and sometimes not so much.
He rested most of today and watched the history channel....he loves the history channel...and it usually leads to mind numbing discussions (for me) Brian loves history.
I should be doing wash and paperwork..but ...
Brian went to sleep and so far so good, he's still sound asleep. He needs the sleep. He was having trouble today again with the eyesight. He hates that and I want to get him examined still by an ophthalmologist, though I know the oncologist felt it was a normal side effect.
His lips are chapped. I know that means the mouth sores are on their way, I've seen it before, but I had forgotten about how the lips looked. He gets these areas on his lower lip that look like scales. I don't know if he'll let me take a picture of them to share...I'll ask him tomorrow...depends on his mood...sometimes he sees the educational side to sharing and sometimes not so much.
He rested most of today and watched the history channel....he loves the history channel...and it usually leads to mind numbing discussions (for me) Brian loves history.
Friday's update
Last night Brian had some blood in his pee. One of the chemo drugs Ifosamide can cause hemorrhaging from the bladder, so it is given with a recovery drug called Mesna. The Mesna in Brian's case is actually mixed into his chemotherapy.
The first round we had no trouble, but as I expected, round 2 and the following rounds are harder because your body is already suffering side effects.
Fortunately because we were already due at the clinic for the neulasta injection, Brian simply gave a urine sample and he's already on prophylactic antibiotics. I think that as long as he continues to drink lots of fluids, his bladder will recover quickly. It's painful, but the key is to flush all the chemo out and keeping drinking. During chemo, keeping your hydration up is very important.
my car leaked out 3 quarts of oil on the drive up and back, making Scott quite unhappy since that is what he fixed earlier in the week. Hopefully this is a simple fix tomorrow, but there is no time today, he needs to sleep to get to work. He's more then a little frustrated this week, from the cars to the part time job that hasn't materialized that was suppose to be a done deal.
I still have several hours of medical paperwork left to accomplish tonight, as well as cooking something that Brian can eat but won't make him sick. He's having a bit more nausea this time round, though he is very determined not to vomit, so if he actually did, wow, you know he is feeling peaked.
It's a breezy day here, but most days are....(I want a wind turbine) and about mid 50's..but we have a frost advisory up for tonight, so I am off to chop up a little wood so I can have the fireplace going in case Bri gets cold while watching Tv....besides, I lived for so long without a fireplace, I light a fire whenever I get the slightest excuse.
The first round we had no trouble, but as I expected, round 2 and the following rounds are harder because your body is already suffering side effects.
Fortunately because we were already due at the clinic for the neulasta injection, Brian simply gave a urine sample and he's already on prophylactic antibiotics. I think that as long as he continues to drink lots of fluids, his bladder will recover quickly. It's painful, but the key is to flush all the chemo out and keeping drinking. During chemo, keeping your hydration up is very important.
my car leaked out 3 quarts of oil on the drive up and back, making Scott quite unhappy since that is what he fixed earlier in the week. Hopefully this is a simple fix tomorrow, but there is no time today, he needs to sleep to get to work. He's more then a little frustrated this week, from the cars to the part time job that hasn't materialized that was suppose to be a done deal.
I still have several hours of medical paperwork left to accomplish tonight, as well as cooking something that Brian can eat but won't make him sick. He's having a bit more nausea this time round, though he is very determined not to vomit, so if he actually did, wow, you know he is feeling peaked.
It's a breezy day here, but most days are....(I want a wind turbine) and about mid 50's..but we have a frost advisory up for tonight, so I am off to chop up a little wood so I can have the fireplace going in case Bri gets cold while watching Tv....besides, I lived for so long without a fireplace, I light a fire whenever I get the slightest excuse.
Thursday, April 22, 2010
Thursday
well...I did not get to Costco....too many things got in the way...
our schedule changed slightly....the calender has already been updated...there were some scheduling issues on the hospital side.
Brian is not feeling well today. He is having some pain while peeing...one of the chemo drugs is bladder toxic..we'll have to see if that is an issue still in a few hours. If it is, then we'll have to act upon it. He's also nauseated and hungry at the same time. This is a familiar symptom that he experienced last time. I made him some steamed fish and spinach. Mild but filling. He kept it down no problem.
Because he is taking some zofran, something like rice would only add to the constipation effects and while might feel good on his stomach, would further long the natural progress of things.
He's been sleeping most of the day, which is the best thing he can do right now. Get lots of rest.
I returned a few phone calls from earlier in the week....mostly medical stuff...and am working still on the medical bill pile.
Got slightly distracted from that when I had a printer problem and had to call the company to see about what was up with it.
Tomorrow is the neulasta injection...have to drive all the way down to the hospital to get a 3 second injection... but it has to be done.
I'm tired, I am going to try and get some more paperwork done then get a nap. I have made no inroads into the laundry blob at all...oh well....
our schedule changed slightly....the calender has already been updated...there were some scheduling issues on the hospital side.
Brian is not feeling well today. He is having some pain while peeing...one of the chemo drugs is bladder toxic..we'll have to see if that is an issue still in a few hours. If it is, then we'll have to act upon it. He's also nauseated and hungry at the same time. This is a familiar symptom that he experienced last time. I made him some steamed fish and spinach. Mild but filling. He kept it down no problem.
Because he is taking some zofran, something like rice would only add to the constipation effects and while might feel good on his stomach, would further long the natural progress of things.
He's been sleeping most of the day, which is the best thing he can do right now. Get lots of rest.
I returned a few phone calls from earlier in the week....mostly medical stuff...and am working still on the medical bill pile.
Got slightly distracted from that when I had a printer problem and had to call the company to see about what was up with it.
Tomorrow is the neulasta injection...have to drive all the way down to the hospital to get a 3 second injection...
I'm tired, I am going to try and get some more paperwork done then get a nap. I have made no inroads into the laundry blob at all...oh well....
Wednesday, April 21, 2010
Brian's home...yippie....skippie....lock the fridge...
Brian came home today. They started his chemo late monday and it finished at dinner time tonight. He did very well....some acid reflux from the steriods, but otherwise, he's feeling pretty good. We're going to head to Costco again tomorrow for some decent quality protein.
( We still can't get any decent meat up here...I plan to take up hunting one day soon, in fact had planned on learning how to hunt and prepare my own deer this summer, but it won't be this summer now...)
For now....He's going to have some days where he's not feeling very good, but we expect that. We just make sure he eats good protein and lots of fruits and veggies. I can't stress enough about how I feel diet did before and does now play an important roll in how he does. and the steroids..well..he'd eat the walls if we let him.
When I got to the hospital today, I was just amazed...the staff had left some information for me about Brian's medicaid which kicked in today...and his nurse Mary, had even gone to the pharmacy and filled his prescriptions for me. How kind was that...I really was simply touched by how helpful and caring she was.
I have been really impressed all along with how nice the whole nursing staff is. They are so kind and always interested in how they can help, even asking if they can do something for me. I have really been impressed all along at Lehigh Valley Hosp. and I certainly have seen too many.
Because Brian did so well with the previous round of chemo, we are getting a break. We don't have to do the M,W,F bloodwork. We'll just need to go to the clinic on Friday for the neulasta injection to help keep his white cells up, and then get labs done before the NADIR visit in probably 2 weeks. Then we have all the pre transplant tests on 5/10. Then an oncology visit on 5/17. I'll update the calender shortly.
I want to thanks my great neighbor Jim..again...he helped Scott several times this week with my car, and picked up Steph from work last night while I was at the hospital with Brian. (yes, we are once again down a car)...I told you before...cancer doesn't care if your cars are old and you're not ready to deal with all this crap...it doesn't care if you are old, or young, rich or poor...not even if you are hot or cold...some things make dealing with the stress easier obviously....and I know it's hard sometimes for others to remember that life and bills and chores don't simply stop because all of a sudden you have a giant medical crisis to deal with. It just is how it is.
I know that many days this blog sounds like I am tired, and bitchy and one step from a cliff....make NO mistake...that is exactly how it is. When Brian had cancer before..I took the high road, and wore me to the bone. Now you get the truth..the hard, naked miserable truth about how it is to deal with a life changing event...not once, but now twice.
I haven't killed anyone and my husband still loves me...trust me, we're doing better then most.
Now that I have the medicaid number, tomorrow aside from the 200 loads of laundry I must do, I am going to be writing it one that gargantuan pile of medical bills and hoping for retroactive coverage.
we are still facing tremendous costs for transportation as well as all of the meals I will have to eat when we go to Hershey...for however many days I am out there. I know it will be at least 3-4 weeks. It looks like my accommodations will be provided at this point however. Or I can stay in the room with Brian.
I read through the bone marrow transplant book provided by Hershey and apparently the bone marrow website has some suggestions for fund raising. If anyone is interested in volunteering to help, let me know..I don't see it as a practical thing I will be able to do. I barely have time now to deal with everything.
we are considering a combination type weekend where we could take Brian to the Shawnee Celtic Festival and those of you who would like to visit him could before transplant. We could plan to meet at the festival. It would give him something fun to look forward to before the transplant procedures start. (And make no mistake, the transplant procedure is dangerous with many life threatening complications)
And at this point we are not considering any visitors for some time after. He will be tired and it will take his immune system sometime to recover. ( if fact he may have to consider receiving a lot of his childhood vaccines again about a year after transplant) He's not keen on visitors anyhow...remember, he's very private and hates when people see him at less then 100%. (of course Anut Deb is an exception...and she has seen him at his very best...and worst).
We can't accommodate anyone at the house though, so if that is something that interests you, I'd plan reservations early. It gets crowded up here once summer gets rolling. Places to stay.
Brian did pose for a few hospital photos to share...will post those next.
Oh yes...Brian knows that the best plan for his immediate future following transplant will be to rest, but he's concerned about sometime getting a job, and he loves languages, so I have added two new items to his want list. They are educational language programs, he is thinking about trying to work from home doing translating services. I support this thought process of his, and I think it is both a practical and realistic goal.
( We still can't get any decent meat up here...I plan to take up hunting one day soon, in fact had planned on learning how to hunt and prepare my own deer this summer, but it won't be this summer now...)
For now....He's going to have some days where he's not feeling very good, but we expect that. We just make sure he eats good protein and lots of fruits and veggies. I can't stress enough about how I feel diet did before and does now play an important roll in how he does. and the steroids..well..he'd eat the walls if we let him.
When I got to the hospital today, I was just amazed...the staff had left some information for me about Brian's medicaid which kicked in today...and his nurse Mary, had even gone to the pharmacy and filled his prescriptions for me. How kind was that...I really was simply touched by how helpful and caring she was.
I have been really impressed all along with how nice the whole nursing staff is. They are so kind and always interested in how they can help, even asking if they can do something for me. I have really been impressed all along at Lehigh Valley Hosp. and I certainly have seen too many.
Because Brian did so well with the previous round of chemo, we are getting a break. We don't have to do the M,W,F bloodwork. We'll just need to go to the clinic on Friday for the neulasta injection to help keep his white cells up, and then get labs done before the NADIR visit in probably 2 weeks. Then we have all the pre transplant tests on 5/10. Then an oncology visit on 5/17. I'll update the calender shortly.
I want to thanks my great neighbor Jim..again...he helped Scott several times this week with my car, and picked up Steph from work last night while I was at the hospital with Brian. (yes, we are once again down a car)...I told you before...cancer doesn't care if your cars are old and you're not ready to deal with all this crap...it doesn't care if you are old, or young, rich or poor...not even if you are hot or cold...some things make dealing with the stress easier obviously....and I know it's hard sometimes for others to remember that life and bills and chores don't simply stop because all of a sudden you have a giant medical crisis to deal with. It just is how it is.
I know that many days this blog sounds like I am tired, and bitchy and one step from a cliff....make NO mistake...that is exactly how it is. When Brian had cancer before..I took the high road, and wore me to the bone. Now you get the truth..the hard, naked miserable truth about how it is to deal with a life changing event...not once, but now twice.
I haven't killed anyone and my husband still loves me...trust me, we're doing better then most.
Now that I have the medicaid number, tomorrow aside from the 200 loads of laundry I must do, I am going to be writing it one that gargantuan pile of medical bills and hoping for retroactive coverage.
we are still facing tremendous costs for transportation as well as all of the meals I will have to eat when we go to Hershey...for however many days I am out there. I know it will be at least 3-4 weeks. It looks like my accommodations will be provided at this point however. Or I can stay in the room with Brian.
I read through the bone marrow transplant book provided by Hershey and apparently the bone marrow website has some suggestions for fund raising. If anyone is interested in volunteering to help, let me know..I don't see it as a practical thing I will be able to do. I barely have time now to deal with everything.
we are considering a combination type weekend where we could take Brian to the Shawnee Celtic Festival and those of you who would like to visit him could before transplant. We could plan to meet at the festival. It would give him something fun to look forward to before the transplant procedures start. (And make no mistake, the transplant procedure is dangerous with many life threatening complications)
And at this point we are not considering any visitors for some time after. He will be tired and it will take his immune system sometime to recover. ( if fact he may have to consider receiving a lot of his childhood vaccines again about a year after transplant) He's not keen on visitors anyhow...remember, he's very private and hates when people see him at less then 100%. (of course Anut Deb is an exception...and she has seen him at his very best...and worst).
We can't accommodate anyone at the house though, so if that is something that interests you, I'd plan reservations early. It gets crowded up here once summer gets rolling. Places to stay.
Brian did pose for a few hospital photos to share...will post those next.
Oh yes...Brian knows that the best plan for his immediate future following transplant will be to rest, but he's concerned about sometime getting a job, and he loves languages, so I have added two new items to his want list. They are educational language programs, he is thinking about trying to work from home doing translating services. I support this thought process of his, and I think it is both a practical and realistic goal.
Monday, April 19, 2010
first order of business
Order lunch...
Then nap...
All good things since Brian is very cranky and generally miserable at being here.
Room change info...we're actually in 7c17a
Then nap...
All good things since Brian is very cranky and generally miserable at being here.
Room change info...we're actually in 7c17a
Sunday, April 18, 2010
an interesting point of view
I've taken photographs for a long time. I have even entered and once won a contest...so weird photos ...that "artistic" view always intrigues me.
this is our "photo of the week" besides the bear of course....can you guess what it is?
it's the back of Brian's head...the darker patches are where the hair has been buzzed but didn't fall out. The pink patches are where the hair fell out prior to buzzing...the splotch on the right hand side is actually a large petechaei. ( from low platelets).
Brian did well last round with his counts dipping low, but not low enough to need a transfusion....don't know if we'll be that lucky this time...hope so...they come with a variety of problems all on their own.
Our reading material...
Here's a scan of the booklet we got a hershey....Brian and I will be reading through it this week....we'll update any interesting tidbits we gleam from it.
the weekend's always too short...
Well isn't that the truth for all of us. Here it is Sunday afternoon and I need another 48 hours. I am never ready for the weeks where I am at the hospital with Brian instead of at home and I can't take the work with me...
The hospital called a little while ago to give us the room information....this week it is 7C8A. I think it might be the other side of the hall, which isn't going to make Brian very happy. He likes to overlook the parking lot so he can watch me come and go....and he likes to watch the birds that roost in the helicopter balls that are on wires on that side of the hospital.
He's already cranky about tomorrow....who can blame him really. It's hard to look forward to a hospital visit under the best circumstances.
The hospital called a little while ago to give us the room information....this week it is 7C8A. I think it might be the other side of the hall, which isn't going to make Brian very happy. He likes to overlook the parking lot so he can watch me come and go....and he likes to watch the birds that roost in the helicopter balls that are on wires on that side of the hospital.
He's already cranky about tomorrow....who can blame him really. It's hard to look forward to a hospital visit under the best circumstances.
Saturday, April 17, 2010
Saturday...what can I say...
No changes...just trying to get things done. Scott came home this am from work and made a big pot of beefaroni to take to work..so that saves me some work.
Stephanie had a slow night a work last night again..she's thinking about looking for another job, they are switching her schedule around too much, and business has been really slow, yet they hire more people??....typical restaurant poor thinking....we've seen it before....It's a damn shame they don't actually talk or listen to Stephanie..she is full of some really great ideas that don't involve big expenditures. Oh well...not really what she needs right now.
Brian's sleeping still..he was not feeling 100% last night and hasn't been sleeping well. He's also worked up about both the meeting at Hershey and the anticipation of the chemo this week.
He really needs something fun to look forward too....besides all this doom and gloom...
got to think on that one....
We might be headed to NJ to RWJUH to meet with his pediatric oncologist and the adult oncologist there....His peds Dr. offered to go over things with us and I am probably going to take him up on his offer. We'll have to schedule it after Brian's chemo and counts rebound in a couple of weeks...I don't know if it means I'll reconsider RWJUH for the transplant or not. The problems with going there still exist and they would have to be resolved. And frankly I am running out of steam juggling problems.
I'm going to try and put up some ebay items tomorrow...I already know what the prescriptions will cost at the end of the week...it's just all about time right now.
Stephanie had a slow night a work last night again..she's thinking about looking for another job, they are switching her schedule around too much, and business has been really slow, yet they hire more people??....typical restaurant poor thinking....we've seen it before....It's a damn shame they don't actually talk or listen to Stephanie..she is full of some really great ideas that don't involve big expenditures. Oh well...not really what she needs right now.
Brian's sleeping still..he was not feeling 100% last night and hasn't been sleeping well. He's also worked up about both the meeting at Hershey and the anticipation of the chemo this week.
He really needs something fun to look forward too....besides all this doom and gloom...
got to think on that one....
We might be headed to NJ to RWJUH to meet with his pediatric oncologist and the adult oncologist there....His peds Dr. offered to go over things with us and I am probably going to take him up on his offer. We'll have to schedule it after Brian's chemo and counts rebound in a couple of weeks...I don't know if it means I'll reconsider RWJUH for the transplant or not. The problems with going there still exist and they would have to be resolved. And frankly I am running out of steam juggling problems.
I'm going to try and put up some ebay items tomorrow...I already know what the prescriptions will cost at the end of the week...it's just all about time right now.
Friday, April 16, 2010
Friday's Musings
Today we got a much needed rain storm. My perennials are starting to come up and they needed a good drink.
The birds are wondering why my feeders are empty...they need to talk to the bear. He /she really likes birdseed. Last year the bears stayed in the back...(we live adjacent to the state game lands) I have mixed feelings about the front yard visit...
Because the bear played in the driveway until late, and was still there when Scott went out to get in the car for work, I bought a small air horn at the store. Hopefully that will scare him off if he gets too close again. I don't want to have to call animal control, I just want him to stay in the back...the far back.
I took Brian for labs today. He is due to go to the oncologist for a office visit then admit on Monday for another round of ICE. This should be the last round of chemo before we start the transplant protocol. I'd estimate that will begin in about 4-5 weeks depending on blood counts, lab tests, and the almighty medicaid problems. I have to make some phone calls and investigate that delay on Monday. And it means we have to pay for all the prescriptions out of pocket again for what Brian needs when he is discharged from the hospital next thursday.
Brian is tired, but is trying to hide the fact that he is also unstable on his feet. But we can see it when he walks. He's gotten good at hiding things quickly because he knows I worry, fortunately I am good at watching like a hawk.
Scott and I talked for a while yesterday about the fall Brian took the other day. We've decided that instead of discussing the shower chair and extra bathroom handles, we'll just get them this weekend and put them in place. If Brian asks about them, we'll just say that my fibromyalgia is flaring again and I need them because I am afraid of falling. It's not far form the truth and I have in the past needed assistance and sometimes use a cane when it does flare, so he might buy it, and if they are there, it will be easy for him to just use them while not thinking they are really for him.
If Brian was to fall when his platelets were low, he could bleed very seriously, possibly even life threateningly, so it could have been serious. So I am going to remove those items form the helpful list and we're going to get them tomorrow locally.
I also talked at length with Stephanie about everything we discussed at Hershey. She was upset, but is starting to understand that this is more serious then last time, and last time WAS serious. It's just hard to accept things that she is being asked to take in stride.
I hope to get caught up on things this weekend before the week at the hospital next week. I have to get dinners cooked, and cat food stocked and try and get through the ever growing pile of medical stuff. And get Brian's stuff packed up to go on monday.
When Brian is in the hospital next week, I hope to get the echo-cardiogram, and the pulmonary function test he needs prior to transplant scheduled and done, and I also am going to push to see if I can get an ophthalmologist in to see him. He has been complaining about his eye sight since this past round of chemo., it seems to be effecting his sight, or something is.
We also have a pile of informational reading and paperwork to get through from Hershey...
It's really hard to keep plugging away at this stuff....I 'd rather be planting...or doing something fun...and I KNOW Brian would rather be anything....
The birds are wondering why my feeders are empty...they need to talk to the bear. He /she really likes birdseed. Last year the bears stayed in the back...(we live adjacent to the state game lands) I have mixed feelings about the front yard visit...
Because the bear played in the driveway until late, and was still there when Scott went out to get in the car for work, I bought a small air horn at the store. Hopefully that will scare him off if he gets too close again. I don't want to have to call animal control, I just want him to stay in the back...the far back.
I took Brian for labs today. He is due to go to the oncologist for a office visit then admit on Monday for another round of ICE. This should be the last round of chemo before we start the transplant protocol. I'd estimate that will begin in about 4-5 weeks depending on blood counts, lab tests, and the almighty medicaid problems. I have to make some phone calls and investigate that delay on Monday. And it means we have to pay for all the prescriptions out of pocket again for what Brian needs when he is discharged from the hospital next thursday.
Brian is tired, but is trying to hide the fact that he is also unstable on his feet. But we can see it when he walks. He's gotten good at hiding things quickly because he knows I worry, fortunately I am good at watching like a hawk.
Scott and I talked for a while yesterday about the fall Brian took the other day. We've decided that instead of discussing the shower chair and extra bathroom handles, we'll just get them this weekend and put them in place. If Brian asks about them, we'll just say that my fibromyalgia is flaring again and I need them because I am afraid of falling. It's not far form the truth and I have in the past needed assistance and sometimes use a cane when it does flare, so he might buy it, and if they are there, it will be easy for him to just use them while not thinking they are really for him.
If Brian was to fall when his platelets were low, he could bleed very seriously, possibly even life threateningly, so it could have been serious. So I am going to remove those items form the helpful list and we're going to get them tomorrow locally.
I also talked at length with Stephanie about everything we discussed at Hershey. She was upset, but is starting to understand that this is more serious then last time, and last time WAS serious. It's just hard to accept things that she is being asked to take in stride.
I hope to get caught up on things this weekend before the week at the hospital next week. I have to get dinners cooked, and cat food stocked and try and get through the ever growing pile of medical stuff. And get Brian's stuff packed up to go on monday.
When Brian is in the hospital next week, I hope to get the echo-cardiogram, and the pulmonary function test he needs prior to transplant scheduled and done, and I also am going to push to see if I can get an ophthalmologist in to see him. He has been complaining about his eye sight since this past round of chemo., it seems to be effecting his sight, or something is.
We also have a pile of informational reading and paperwork to get through from Hershey...
It's really hard to keep plugging away at this stuff....I 'd rather be planting...or doing something fun...and I KNOW Brian would rather be anything....
Thursday, April 15, 2010
on a lighter note...
ah mom...there's a bear in the front yard....mom, you really shouldn't go out there....MOM.....
Wednesday, April 14, 2010
okay so yesterday was not a good day
As I am sure you can tell from the last post, I was deep fried...DEEP fried. It happens...what can I say.
We're under enormous pressure. And truthfully there is no end in sight.
I wish that I had some terrific news from our meeting in Hershey at the cancer center, but unfortunately that just isn't the case.
Here's what we learned....
Brian has an area of lymphoma in his right shoulder blade. (in addition to all the other places we already knew about)
They have little data on transplants and his type of cancer.
His cancer is much more rare then we realized and there are not a lot of studies on it.
They will give him massive doses of chemotherapy (cytotoxin and etopicide) 8 days prior to transplant. This will kill any remaining cancer, also kill his bone marrow and completely annihilate his immune system.
They have no statistics on what his chances of developing leukemia after all the etopicide will be.
basically if he lives 5 years past transplant they consider it a success regardless of any medical issues, or even death.
so here are our choices....
finish the ICE and do nothing....and he dies from the lymphoma
finish the ICE and to the transplant ...and he dies from the procedure...or the cancer comes back and he dies...or he gets leukemia and he dies...or he might just possibly be cured, BUT....they are really only hoping that is the case.
If the auto (using his own cells) transplant fails and the cancer returns and is still effected by chemotherapy...he would have the allo (doner) transplant as a back up.
The permanent side effects that Brian has already experienced and is getting more all the time, is just adding up. The truth is that we will be dealing with this for the rest of his life.
last night he fell and broke the door off the tv cabinet...I don't care about that...either we can fix it or it has no door, the fact is that he is suffering in his ability to walk, and his eyesight is effected by the current chemotherapy as well.
We all appreciate that sometimes there is some suffering in order to get better. Brian has been suffering for 10 years and they really don't know if he'll get better. Nor have they studied this cancer enough to really determine the very best treatment. The next treatment is a transplant because they just don't have anything else to offer that is main stream.
Nice eh?....
I have 3 oncologists who all agree Brian's best chance for survival and a cure is the transplant.
if he survives the transplant, they are all happy, but what about what is left of Brian?....that is an important question. And not one to be dismissed lightly.
Brian wants to go ahead with the transplant even though he is well aware of all of the pitfalls and there will be some serious pain as well. He is brave and admirable. He says he wants to fight the cancer because he knows if he dies I'll go insane.
like I am not already?...but hey they make a pill for that...
on top of it all there are the bills, the cars, the things that needs to be fed and walked and watered and fixed....and they just keep piling up.
and please....PLEASE....try and respect that my beliefs and your beliefs well might be different and don't try and sell me the "God has a plan" stuff.... (this comment is based upon a phone call I had last night, but I'm really serious about this). Though I am amused by the local bible thumpers billboard in town. Innovative Church...less crap more Jesus.
I accept all paths to Gods and Goddesses. I do not ask that you accept my path and I do not wish to be converted to yours. Each of us are entitled to worship as we wish. It's called free will and it's a wonderful thing.
please feel free to further discuss this in a pleasant fashion and with an open mind.
We're under enormous pressure. And truthfully there is no end in sight.
I wish that I had some terrific news from our meeting in Hershey at the cancer center, but unfortunately that just isn't the case.
Here's what we learned....
Brian has an area of lymphoma in his right shoulder blade. (in addition to all the other places we already knew about)
They have little data on transplants and his type of cancer.
His cancer is much more rare then we realized and there are not a lot of studies on it.
They will give him massive doses of chemotherapy (cytotoxin and etopicide) 8 days prior to transplant. This will kill any remaining cancer, also kill his bone marrow and completely annihilate his immune system.
They have no statistics on what his chances of developing leukemia after all the etopicide will be.
basically if he lives 5 years past transplant they consider it a success regardless of any medical issues, or even death.
so here are our choices....
finish the ICE and do nothing....and he dies from the lymphoma
finish the ICE and to the transplant ...and he dies from the procedure...or the cancer comes back and he dies...or he gets leukemia and he dies...or he might just possibly be cured, BUT....they are really only hoping that is the case.
If the auto (using his own cells) transplant fails and the cancer returns and is still effected by chemotherapy...he would have the allo (doner) transplant as a back up.
The permanent side effects that Brian has already experienced and is getting more all the time, is just adding up. The truth is that we will be dealing with this for the rest of his life.
last night he fell and broke the door off the tv cabinet...I don't care about that...either we can fix it or it has no door, the fact is that he is suffering in his ability to walk, and his eyesight is effected by the current chemotherapy as well.
We all appreciate that sometimes there is some suffering in order to get better. Brian has been suffering for 10 years and they really don't know if he'll get better. Nor have they studied this cancer enough to really determine the very best treatment. The next treatment is a transplant because they just don't have anything else to offer that is main stream.
Nice eh?....
I have 3 oncologists who all agree Brian's best chance for survival and a cure is the transplant.
if he survives the transplant, they are all happy, but what about what is left of Brian?....that is an important question. And not one to be dismissed lightly.
Brian wants to go ahead with the transplant even though he is well aware of all of the pitfalls and there will be some serious pain as well. He is brave and admirable. He says he wants to fight the cancer because he knows if he dies I'll go insane.
like I am not already?...but hey they make a pill for that...
on top of it all there are the bills, the cars, the things that needs to be fed and walked and watered and fixed....and they just keep piling up.
and please....PLEASE....try and respect that my beliefs and your beliefs well might be different and don't try and sell me the "God has a plan" stuff.... (this comment is based upon a phone call I had last night, but I'm really serious about this). Though I am amused by the local bible thumpers billboard in town. Innovative Church...less crap more Jesus.
I accept all paths to Gods and Goddesses. I do not ask that you accept my path and I do not wish to be converted to yours. Each of us are entitled to worship as we wish. It's called free will and it's a wonderful thing.
please feel free to further discuss this in a pleasant fashion and with an open mind.
Tuesday, April 13, 2010
trip to hershey
It was long. Almost 6 hours in the car driving. The news...not so encouraging...the stem cell transplant is Brian's only option besides doing nothing. It is fraught with complications and tremendous unknowns. I'm exhausted and fried and typing this on my phone since my internet is down. Not sure why but since I lost my computer it is possible I didn't pay the bill which I pay online along with my banking which is lost in hard drive failure. I just don't really give a fuck tonight. Maybe I'll have the where with all to deal with it tomorrow...or not...
Sunday, April 11, 2010
the weekend off
Well, the weekend went too quickly. And as always is the case, I didn't get nearly enough done. But I can still try and get a ton of things done tomorrow before we head to Hershey on Tuesday.
I also still have to get together my questions for the transplant doctors. They are in my head, but that's a crowded place, so it's better if they are on paper.
Yesterday I weeded a little bit of the garden I put in last year, and filled all the bird feeders. Brian sat outside today for a little while and got to enjoy all the birds. They are quite tame here and will come very close if you sit still and are patient.
I took him to Walmart and we picked out some soft PJ bottoms and Tshirts that he wears in the hospital. He has a week's worth now, so I have a few days to find a washer once we get out to Hershey for the transplant. (he wears tshirts and undies to sleep in a home hence the need to shop)
Scott chopped some wood for me, we're still using the fireplace in the evenings and I certainly don't want Brian to even consider the chore. We did a little around the yard...but not really too much. I spray painted a garden ornament ( frog) I've had for years, he was looking faded and rusty and I repainted him and gave him a fresh look. I mostly worked in the house, put up some shelves and found a few more moving boxes to unpack. We're still missing a box of bathroom stuff and a box of kitchen things...I am thinking they must have gotten shoved in the attic.
I spent Friday evening with Stephanie. We went out and did some chores, went to Lowes to get the shelves I put up. That really helped with some organization. The more that is stored away, the easier it is to keep things clean and dust free for Brian. I haven't talked to Brian about packing his paperbacks in his room away, he'd be very upset, and I want to discuss the necessity of it with the transplant doctors first.
Tonight he's having some pain where the new portacath has been installed. There is a spot that looks a little red and swollen, so we cleaned it up and put a little antibiotic on it. It's healing slower because of the chemo right after the port a cath insertion. It is on the opposite side of the one he had before, and up a little further towards his left shoulder. It's smaller, but deeper then the old one and is called a power port. The surgeon chose this port for Brian for a couple of reasons, first off because he formed many fibrin sheeths with the old port, this design is not so susceptible to them, and it can also be used for contrast IV fluids for PET and CAT scans.
All in all he had a good weekend, mostly resting and playing video games. His appetite was good and he ate lots of fresh fruit and veggies. He is also keeping his hydration up and drinking quite a bit. That really helps keep him healthy and prevents chemotherapy delays. The PH isn't as much a factor with this chemo regime as it was with the CHOP, but still important especially with the blood draws all the time. It's a whole lot easier to find a vein if you are nice and hydrated. His arms are bruised a bit, but it happens.
If there are any questions you think I should ask the transplant doctor on tuesday, post them here for me.
I also still have to get together my questions for the transplant doctors. They are in my head, but that's a crowded place, so it's better if they are on paper.
Yesterday I weeded a little bit of the garden I put in last year, and filled all the bird feeders. Brian sat outside today for a little while and got to enjoy all the birds. They are quite tame here and will come very close if you sit still and are patient.
I took him to Walmart and we picked out some soft PJ bottoms and Tshirts that he wears in the hospital. He has a week's worth now, so I have a few days to find a washer once we get out to Hershey for the transplant. (he wears tshirts and undies to sleep in a home hence the need to shop)
Scott chopped some wood for me, we're still using the fireplace in the evenings and I certainly don't want Brian to even consider the chore. We did a little around the yard...but not really too much. I spray painted a garden ornament ( frog) I've had for years, he was looking faded and rusty and I repainted him and gave him a fresh look. I mostly worked in the house, put up some shelves and found a few more moving boxes to unpack. We're still missing a box of bathroom stuff and a box of kitchen things...I am thinking they must have gotten shoved in the attic.
I spent Friday evening with Stephanie. We went out and did some chores, went to Lowes to get the shelves I put up. That really helped with some organization. The more that is stored away, the easier it is to keep things clean and dust free for Brian. I haven't talked to Brian about packing his paperbacks in his room away, he'd be very upset, and I want to discuss the necessity of it with the transplant doctors first.
Tonight he's having some pain where the new portacath has been installed. There is a spot that looks a little red and swollen, so we cleaned it up and put a little antibiotic on it. It's healing slower because of the chemo right after the port a cath insertion. It is on the opposite side of the one he had before, and up a little further towards his left shoulder. It's smaller, but deeper then the old one and is called a power port. The surgeon chose this port for Brian for a couple of reasons, first off because he formed many fibrin sheeths with the old port, this design is not so susceptible to them, and it can also be used for contrast IV fluids for PET and CAT scans.
All in all he had a good weekend, mostly resting and playing video games. His appetite was good and he ate lots of fresh fruit and veggies. He is also keeping his hydration up and drinking quite a bit. That really helps keep him healthy and prevents chemotherapy delays. The PH isn't as much a factor with this chemo regime as it was with the CHOP, but still important especially with the blood draws all the time. It's a whole lot easier to find a vein if you are nice and hydrated. His arms are bruised a bit, but it happens.
If there are any questions you think I should ask the transplant doctor on tuesday, post them here for me.
Friday, April 9, 2010
weekend off....
I am taking the weekend off.
Brian is tired but well...
lots of things to get done, the next few weeks will be crazy again.
Check back on Sunday or Monday for updates.
Brian is tired but well...
lots of things to get done, the next few weeks will be crazy again.
Check back on Sunday or Monday for updates.
Thursday, April 8, 2010
Thursday's good news
Well, because Brian's bloodwork has recovered so quickly and unexpectedly (something to be said for a good protein and fruit and vegetable diet oh, and don't forget the milk...my gallon a day boy...)
we don't have to go for labs again until Friday 4/16....woohoo...first week off since January. Quick...somebody get a plane...I want to go to the Grand Caymans for sun, relaxation and Tortuga Rum....
oh wait, that's that little fantasy world I live in....damn....
we don't have to go for labs again until Friday 4/16....woohoo...first week off since January. Quick...somebody get a plane...I want to go to the Grand Caymans for sun, relaxation and Tortuga Rum....
oh wait, that's that little fantasy world I live in....damn....
Wednesday, April 7, 2010
another day trip to the hospital for bloodwork
Seems like we are always driving to the hospital..oh wait, that is because we are. Using the "local" hospital for the labs seems to be working well for now and although is hardly around the corner, it is closer then Lehigh. It does save wear and tear on all of us, as well as the car.
Today it was HOT...where did spring go?...and as it would be, it seems the air conditioner doesn't work on my vehicle...guess it goes with the way things have been going, and while I love my vehicle, she's hardly a spring chicken. Scott's going to see if "Harry's u pull it" has one for my car. (got to love junk yard names...at least PA still has them, most of them in NJ are long gone) I can't imagine making these trips without air conditioning. Neither Brian nor I do heat very well.
I do hope spring comes back before summer though.
I spoke with the people at the cancer center and the people at Lehigh, they are coordinating that all the pathology slides get to Hershey before we do on Tuesday. They have really been amazingly helpful, and I appreciate anywhere I don't have to make sure something is getting done. They even called me to let me know it was being taken care of.
Brian's counts today were a complete surprise. His platelets which were low (90) on Monday were 136 today and recovered rather then continued to fall...a delightful surprise. All his counts have returned to normal. Much quicker then expected. He's still tired, and has hand, feet, and scalp numbness and some brain fog, but he's doing pretty well all considered.
Scott got a small second job today, it's not much and I am torn between what expenses it might cover vs. the extra things that need doing around here. But that is how Scott deals with stress, work so he doesn't have to think. While I don't think it is the best choice, after 25 years of marriage, I know that with everything that has happened so far this month, he felt like he didn't have a choice.
I know how he feels...like we need to clone ourselves so we can do more and be more places then we can be.
I know that it is hard for people who haven't been in our position to completely understand, but life doesn't stop just because we have this huge issue of Brian's cancer and all of the time and money his treatments and check ups and lab work takes. The grass grows, the dishes pile up in the sink, the cat litter boxes still need to be cleaned. And the cars are getting a ton of mileage that they really shouldn't be getting. Ah, if you could just choose the planning of life's complications.
I had to laugh tonight when I was in Walmart, there was a parent in line with her kids and one was complaining about how things were "unfair" because her sister got a t shirt and she didn't. It was one of those times when I felt like turning around and saying "unfair??...let me tell you about unfair" At least I could laugh...there was a time when overhearing something like that would have made me angry with the injustice of it.
Today it was HOT...where did spring go?...and as it would be, it seems the air conditioner doesn't work on my vehicle...guess it goes with the way things have been going, and while I love my vehicle, she's hardly a spring chicken. Scott's going to see if "Harry's u pull it" has one for my car. (got to love junk yard names...at least PA still has them, most of them in NJ are long gone) I can't imagine making these trips without air conditioning. Neither Brian nor I do heat very well.
I do hope spring comes back before summer though.
I spoke with the people at the cancer center and the people at Lehigh, they are coordinating that all the pathology slides get to Hershey before we do on Tuesday. They have really been amazingly helpful, and I appreciate anywhere I don't have to make sure something is getting done. They even called me to let me know it was being taken care of.
Brian's counts today were a complete surprise. His platelets which were low (90) on Monday were 136 today and recovered rather then continued to fall...a delightful surprise. All his counts have returned to normal. Much quicker then expected. He's still tired, and has hand, feet, and scalp numbness and some brain fog, but he's doing pretty well all considered.
Scott got a small second job today, it's not much and I am torn between what expenses it might cover vs. the extra things that need doing around here. But that is how Scott deals with stress, work so he doesn't have to think. While I don't think it is the best choice, after 25 years of marriage, I know that with everything that has happened so far this month, he felt like he didn't have a choice.
I know how he feels...like we need to clone ourselves so we can do more and be more places then we can be.
I know that it is hard for people who haven't been in our position to completely understand, but life doesn't stop just because we have this huge issue of Brian's cancer and all of the time and money his treatments and check ups and lab work takes. The grass grows, the dishes pile up in the sink, the cat litter boxes still need to be cleaned. And the cars are getting a ton of mileage that they really shouldn't be getting. Ah, if you could just choose the planning of life's complications.
I had to laugh tonight when I was in Walmart, there was a parent in line with her kids and one was complaining about how things were "unfair" because her sister got a t shirt and she didn't. It was one of those times when I felt like turning around and saying "unfair??...let me tell you about unfair" At least I could laugh...there was a time when overhearing something like that would have made me angry with the injustice of it.
Monday, April 5, 2010
Question and answer time
Brian in an uncharacteristic "socialness" has decided that tomorrow he will answer any questions you might have about him, his treatment and what it is like to have cancer.
Since today he remarked on how ironic it is that he usually has no great desire to go out and be around people and now because he can't, how it would be nice to do more then just go and have blood drawn every other day.
SO, send your questions to the comment section, and he'll answer them tomorrow. (yes I am surprised).
a very special thanks to one of my dear furbaby friends Dottie for her very kind donation towards Brian's needs. As always, all gifts are most appreciated.
Thanks to Grandma for that Easter check which will help cover this weeks medications.
Since today he remarked on how ironic it is that he usually has no great desire to go out and be around people and now because he can't, how it would be nice to do more then just go and have blood drawn every other day.
SO, send your questions to the comment section, and he'll answer them tomorrow. (yes I am surprised).
a very special thanks to one of my dear furbaby friends Dottie for her very kind donation towards Brian's needs. As always, all gifts are most appreciated.
Thanks to Grandma for that Easter check which will help cover this weeks medications.
the hair goeth
We're going to buzz Brian's hair short today, it's falling out anyhow and it makes it easier to buzz it short first. Then there isn't so much to vacuum up, and I don't need to worry about the cat's eating it...and yes, they will....anything string like and it can be dangerous. And worse yet is when it comes out in their poop, with a little poop ball dangling by a piece of hair...(cat ownership is NOT for the faint at heart)
You will no doubt learn more nitty gritties then you ever wanted to know from this blog.
Today we have a treat...Brian pulled some of his hair out reluctantly so I could video it from my phone to share with you. IF you have never experienced hair loss from chemotherapy, it is unique in how the hair just sort of "lets go" at the root....it doesn't hurt, in fact there is no feeling to it what so ever.
So here it is... Hair loss from chemotherapy
You will no doubt learn more nitty gritties then you ever wanted to know from this blog.
Today we have a treat...Brian pulled some of his hair out reluctantly so I could video it from my phone to share with you. IF you have never experienced hair loss from chemotherapy, it is unique in how the hair just sort of "lets go" at the root....it doesn't hurt, in fact there is no feeling to it what so ever.
So here it is... Hair loss from chemotherapy
Sunday, April 4, 2010
one hair, two hairs, a whole bunch of hairs
Brian's hair has started to fall out. It took a long time (years) for Brian's hair to return to normal after his last chemotherapy treatments. It was coarse and stiff like brush hair and he hated it.
Now he wears his hair a little longer and it is medium curly...really quite nice and I know the loss of it is going to be difficult for Brian.
When he was 14 and his hair started to fall out, we were in the hospital for a round of chemotherapy. He ran his finger through his hair and came out with a handful...he was amused then...pulling tufts out and leaving himself with a quite the unique look.
This time around, well I think it won't be particularly amusing for him. One of the big problems is when his eyelashes fall out, they frequently get into his eyes in the middle of the night, causing him pain and it can be hard to get them all flushed out. Makes for a very unpleasant way to wake up as well, and since sleep can be sparing, not good to get awoke like that.
Stephanie offered to cut her hair so I could make him a wig. Now that is a REAL serious sacrificial offer...Stephanie's hair is very long and she's quite attached to it. Literally..ha.ha.
I offered to shave my head in support, and draw a dragon on his, but he's not finding these offers amusing right now. He's all gurr and serious. And there will some sense of loss no doubt.
Some of you have made repeated offers for me to call or visit or go to church etc..and I'd like to address them in general for a minute.
We are very private people. We are a fairly closed family group and it is something that we do well at. We appreciate your offers, but it is unlikely that we will avail ourselves of them. Having been through this before, we know what we need to cope. Sharing our feelings publicly is for us, somewhat uncomfortable and we don't feel better for having done it.
It is not a reflection on the many offers we have graciously received, it is a reflection of how we cope best under tremendous stress.
This blog is all the sharing we are able to do at this time. But we know your offers are heartfelt and we thank you for them. I hope you'll understand and respect our wishes at this time.
Now he wears his hair a little longer and it is medium curly...really quite nice and I know the loss of it is going to be difficult for Brian.
When he was 14 and his hair started to fall out, we were in the hospital for a round of chemotherapy. He ran his finger through his hair and came out with a handful...he was amused then...pulling tufts out and leaving himself with a quite the unique look.
This time around, well I think it won't be particularly amusing for him. One of the big problems is when his eyelashes fall out, they frequently get into his eyes in the middle of the night, causing him pain and it can be hard to get them all flushed out. Makes for a very unpleasant way to wake up as well, and since sleep can be sparing, not good to get awoke like that.
Stephanie offered to cut her hair so I could make him a wig. Now that is a REAL serious sacrificial offer...Stephanie's hair is very long and she's quite attached to it. Literally..ha.ha.
I offered to shave my head in support, and draw a dragon on his, but he's not finding these offers amusing right now. He's all gurr and serious. And there will some sense of loss no doubt.
Some of you have made repeated offers for me to call or visit or go to church etc..and I'd like to address them in general for a minute.
We are very private people. We are a fairly closed family group and it is something that we do well at. We appreciate your offers, but it is unlikely that we will avail ourselves of them. Having been through this before, we know what we need to cope. Sharing our feelings publicly is for us, somewhat uncomfortable and we don't feel better for having done it.
It is not a reflection on the many offers we have graciously received, it is a reflection of how we cope best under tremendous stress.
This blog is all the sharing we are able to do at this time. But we know your offers are heartfelt and we thank you for them. I hope you'll understand and respect our wishes at this time.
Saturday, April 3, 2010
late saturday update
Today was a nice day. It really was the first day in a long time that we got a lot done, but we felt relaxed. Not sure why, but hey, I'll take it.
We cleaned the snake's cage even, and I took him outside to get a little fresh air while Scott washed out his tank. I think Brian was disappointed, I haven't let him handle "nakkee" since he started getting chemo. Some reptiles can carry bacteria on their skin and I just don't want to take the chance. It's why we also changed his tank...he gets misted and we just swapped out his bedding just in case there was any chance of any mold or fungus. He's really quite clean, we're just trying to be extra vigilant.
Brian feels better tonight, he has a little more energy and is more stable on his feet. He even came and sat outside for a short while for some fresh air. It was another gorgeous day here, and I am sorry that Stephanie had to work and didn't get to have dinner with us. We haven't had much time for dinners together.
Brian has sores on his tongue today, but the bum sores are better. I inspected him for petechiae tonight when he got out of the shower...sometimes on Brian they can be difficult to see at first because he has freckles as well on his body. Naturally he LOVES letting me see the bum sores and search him for petechiae, but as I have mentioned before, there is not an ounce of dignity left in this process. Besides, I am his mommy...I have seen all the parts and pieces, he'll just have to grumble, complain and comply....
hope tomorrow is just as nice, I have several more loads of laundry and I need to shampoo the hallway carpet.
last time Brian was on chemo, the carpet became such an ordeal we ripped it up and put town vinyl tiles to help cut down on the cleaning and allow for a quick bleach solution on the floors. It worked very well. We had planned on taking up the carpet and tiling when we bought the house, but we're going to do the vinyl flooring again. We don't have time to do the tiling right now, and we need the added benefit of no carpet. It makes cleaning and keeping clean much easier. With both the vomiting from the chemo and the pets, it will be the easiest thing. Scott and I can just do one box at a time until it's done downstairs. Then all it will take is a sweep of the steam mop or a quick wipe with a dilute bleach solution to keep it as clean as possible.
I guess another advantage to being familiar with the chemo is we already know so many things that make things easier on us, that last time, it took us the first year to figure out.
We cleaned the snake's cage even, and I took him outside to get a little fresh air while Scott washed out his tank. I think Brian was disappointed, I haven't let him handle "nakkee" since he started getting chemo. Some reptiles can carry bacteria on their skin and I just don't want to take the chance. It's why we also changed his tank...he gets misted and we just swapped out his bedding just in case there was any chance of any mold or fungus. He's really quite clean, we're just trying to be extra vigilant.
Brian feels better tonight, he has a little more energy and is more stable on his feet. He even came and sat outside for a short while for some fresh air. It was another gorgeous day here, and I am sorry that Stephanie had to work and didn't get to have dinner with us. We haven't had much time for dinners together.
Brian has sores on his tongue today, but the bum sores are better. I inspected him for petechiae tonight when he got out of the shower...sometimes on Brian they can be difficult to see at first because he has freckles as well on his body. Naturally he LOVES letting me see the bum sores and search him for petechiae, but as I have mentioned before, there is not an ounce of dignity left in this process. Besides, I am his mommy...I have seen all the parts and pieces, he'll just have to grumble, complain and comply....
hope tomorrow is just as nice, I have several more loads of laundry and I need to shampoo the hallway carpet.
last time Brian was on chemo, the carpet became such an ordeal we ripped it up and put town vinyl tiles to help cut down on the cleaning and allow for a quick bleach solution on the floors. It worked very well. We had planned on taking up the carpet and tiling when we bought the house, but we're going to do the vinyl flooring again. We don't have time to do the tiling right now, and we need the added benefit of no carpet. It makes cleaning and keeping clean much easier. With both the vomiting from the chemo and the pets, it will be the easiest thing. Scott and I can just do one box at a time until it's done downstairs. Then all it will take is a sweep of the steam mop or a quick wipe with a dilute bleach solution to keep it as clean as possible.
I guess another advantage to being familiar with the chemo is we already know so many things that make things easier on us, that last time, it took us the first year to figure out.
Saturday
Really today should be hump day, not wednesday....just trying to get caught up on the laundry, get the recycling together to go out tomorrow night, pet chores....
I'd like to go out and get some gardening done....but there really isn't time for that today. I also would REALLY like to see the movie "how to train your dragon" but Brian wouldn't be able to go because of his counts, and I can't otherwise justify the expense.
Scott and I sat and watched "How it's made", we love that show, and it's really the first 5 minutes we've had all week. Seems like we've been putting out one fire after another this week. Makes things very stressful.
Brian is pretty much living on frozen strawberry smoothies until his mouth sores are better. I add a little heavy cream to them so he can get a little extra protein...and hey...a little heavy cream makes EVERYTHING better anyhow...
I need to make a trip back to NJ to see my doctor..my own prescriptions are running low, but with Brian's counts so low this week, I am going to put that off one more week. Funny how keeping our same doctor seemed so simple at first, but now has become complicated. But not as complicated as finding a new one right now. Besides, it IS only twice a year I need to get in there...it's just not a good time of year now..
Stephanie is still sick. She's been relegated to staying in her room or wearing a mask. We have a small hepafilter for her room, but it never got unpacked from the move. Scott's going up in the attic to find it tonight, then we'll need to find a new filter for it. Can't have her getting Brian sick for sure...
I have to work on retrieving my computer back up hard drive information this weekend too. No rest for the wicked...and obviously I am very wicked...
I'd like to go out and get some gardening done....but there really isn't time for that today. I also would REALLY like to see the movie "how to train your dragon" but Brian wouldn't be able to go because of his counts, and I can't otherwise justify the expense.
Scott and I sat and watched "How it's made", we love that show, and it's really the first 5 minutes we've had all week. Seems like we've been putting out one fire after another this week. Makes things very stressful.
Brian is pretty much living on frozen strawberry smoothies until his mouth sores are better. I add a little heavy cream to them so he can get a little extra protein...and hey...a little heavy cream makes EVERYTHING better anyhow...
I need to make a trip back to NJ to see my doctor..my own prescriptions are running low, but with Brian's counts so low this week, I am going to put that off one more week. Funny how keeping our same doctor seemed so simple at first, but now has become complicated. But not as complicated as finding a new one right now. Besides, it IS only twice a year I need to get in there...it's just not a good time of year now..
Stephanie is still sick. She's been relegated to staying in her room or wearing a mask. We have a small hepafilter for her room, but it never got unpacked from the move. Scott's going up in the attic to find it tonight, then we'll need to find a new filter for it. Can't have her getting Brian sick for sure...
I have to work on retrieving my computer back up hard drive information this weekend too. No rest for the wicked...and obviously I am very wicked...
Friday, April 2, 2010
more side effects
It became apparent tonight that the loss of feeling in Brian's hands and feet are more serious then previously thought, or he told us.
I am not sure at this point if it is an enhancement of the preexisting nerve damage, he does have some left over damage from his previous chemo treatments, or if it will get better after his chemo ends and he has time for nerve recovery.
What I am sure of, is that he dropped a plate of food on the floor tonight because he couldn't feel it in his hands.
It's not a big deal, we have an instant food clean up crew that lives here, and it was a plastic plate because I switched to plastic wear when Brian started chemo again because I knew he'd be taking the glasses and plates to his room and didn't want anything breakable. Besides, truth be told, aside from the good dishes, ( that we never use) we don't have too much left in the ceramic department, between the move, and the general normal breakage, we are low on breakable plates. Not really a bad thing....
His response to this incident, and his tripping the other day tells me more then he wants me to know.
I think that we'll have to keep in mind that he might need a wheelchair at some point, but I think I will discuss that with Scott quietly before we broach the subject with Brian. I know Brian isn't going to like it. We'll see what the next few weeks bring and what shape he is in before the next round of chemotherapy.
When Brian started chemo last time, he weighted 60 lbs and I could easily haul him around without a problem. But we did move his bedroom downstairs to be close to the bathroom. Now, I can no longer carry him, although we do have a full bath downstairs and could turn the dining room (which is my office/craftroom) into a bedroom for him, he would be very resistant to that idea. And it would be a huge amount of work. SO I think for now, I will craft him a nice walking staff out of beech from the yard, I've made a few already and they are very strong, and add a shower chair to the list of helpful things.
that list will most likely continue to grow as Brian's needs do, since we need to make sure his prescriptions are covered first.
I made sure today at the hospital that the medicaid paperwork has finally been correctly filled out and on it's way to the people who file it. I am hoping once approved, the constant prescription expenses will be covered and we can get some of the other items he needs, though the cost of transportation won't be assisted with at all. At least this week the cost was about $75.00 instead of more then double that last week. Thank goodness we can utilize the closer hospital for the lab work on M,W,F and it seems to be working. (getting to the cancer clinic the same day).
I am not sure at this point if it is an enhancement of the preexisting nerve damage, he does have some left over damage from his previous chemo treatments, or if it will get better after his chemo ends and he has time for nerve recovery.
What I am sure of, is that he dropped a plate of food on the floor tonight because he couldn't feel it in his hands.
It's not a big deal, we have an instant food clean up crew that lives here, and it was a plastic plate because I switched to plastic wear when Brian started chemo again because I knew he'd be taking the glasses and plates to his room and didn't want anything breakable. Besides, truth be told, aside from the good dishes, ( that we never use) we don't have too much left in the ceramic department, between the move, and the general normal breakage, we are low on breakable plates. Not really a bad thing....
His response to this incident, and his tripping the other day tells me more then he wants me to know.
I think that we'll have to keep in mind that he might need a wheelchair at some point, but I think I will discuss that with Scott quietly before we broach the subject with Brian. I know Brian isn't going to like it. We'll see what the next few weeks bring and what shape he is in before the next round of chemotherapy.
When Brian started chemo last time, he weighted 60 lbs and I could easily haul him around without a problem. But we did move his bedroom downstairs to be close to the bathroom. Now, I can no longer carry him, although we do have a full bath downstairs and could turn the dining room (which is my office/craftroom) into a bedroom for him, he would be very resistant to that idea. And it would be a huge amount of work. SO I think for now, I will craft him a nice walking staff out of beech from the yard, I've made a few already and they are very strong, and add a shower chair to the list of helpful things.
that list will most likely continue to grow as Brian's needs do, since we need to make sure his prescriptions are covered first.
I made sure today at the hospital that the medicaid paperwork has finally been correctly filled out and on it's way to the people who file it. I am hoping once approved, the constant prescription expenses will be covered and we can get some of the other items he needs, though the cost of transportation won't be assisted with at all. At least this week the cost was about $75.00 instead of more then double that last week. Thank goodness we can utilize the closer hospital for the lab work on M,W,F and it seems to be working. (getting to the cancer clinic the same day).
Friday's hemonc visit
Brian got his check up...and labs...his red cells are low, his platelets are also low. His white cells are okay....they are low, but were lower wednesday.
Because I don't have my computer, I can't scan the labs right now. When things are up and running, I'll scan in the labs.
He has mouth and bum sores, we got 3 different prescriptions for medications to help with that, as well as a prescription for thrush ( a mouth fungal infection).
The low platelet count is the most concerning as it will continue to drop 10-14 days after chemotherapy. That means all next week, but based on how the platelets look today, I expect he'll probably wind up in the ER sometime over the weekend needing a transfusion. In fact in anticipation of that, I'll cook up some meals today and pop them in the freezer I guess.
He also needed some pain medication again today (real pain meds, not tylenol) and is feeling quite tired. I would expect next week will be worse, as he'll be at his "peak" lows in blood cell counts.
My sister was going to come visit, and Brian was really looking forward to her visit, but because of where his counts are, and the possible need to go for transfusions, we're going to reschedule that. No point in further exposing him to germs.
They are working on rt.33 and have it dug up, making our trip today fine going down, but a bit miserable, bumpy and traffic ridden coming home. Not good for someone with a bad headache, but little I could do about it.
we got a freebie neulasta mouse pad and thermometer at the DR.'s office today....
It's warm and gorgeous here today. I'm going to open up and get some fresh air in, maybe even sit out back a little.
Because I don't have my computer, I can't scan the labs right now. When things are up and running, I'll scan in the labs.
He has mouth and bum sores, we got 3 different prescriptions for medications to help with that, as well as a prescription for thrush ( a mouth fungal infection).
The low platelet count is the most concerning as it will continue to drop 10-14 days after chemotherapy. That means all next week, but based on how the platelets look today, I expect he'll probably wind up in the ER sometime over the weekend needing a transfusion. In fact in anticipation of that, I'll cook up some meals today and pop them in the freezer I guess.
He also needed some pain medication again today (real pain meds, not tylenol) and is feeling quite tired. I would expect next week will be worse, as he'll be at his "peak" lows in blood cell counts.
My sister was going to come visit, and Brian was really looking forward to her visit, but because of where his counts are, and the possible need to go for transfusions, we're going to reschedule that. No point in further exposing him to germs.
They are working on rt.33 and have it dug up, making our trip today fine going down, but a bit miserable, bumpy and traffic ridden coming home. Not good for someone with a bad headache, but little I could do about it.
we got a freebie neulasta mouse pad and thermometer at the DR.'s office today....
It's warm and gorgeous here today. I'm going to open up and get some fresh air in, maybe even sit out back a little.
Thursday, April 1, 2010
some days you just need to stay in bed
Some days are just predetermined to be full of doodoo Karma. As if yesterday's debacle wasn't enough, I think today I should have just locked the bedroom door and put on my headphones.
Stephanie woke up with a sore throat and swollen glands...not something new or normally serious, except for the fact that Brian's going into the time of his lower blood counts. The worse possible time for her to get sick.
Brian is is a lot of pain today as well...in his bones, his legs and his jaw and his hips. That would be from the neulasta. He also has a major headache. That is probably from a low red blood cell count.
Scott has allergies and is WAY cranky himself. SO basically...I really can't make anyone happy today. And the dogs are just bark, bark, bark because the kids are off school today and the little precious furthings see and hear them running around playing and are yapping their little heads off. We live in a development now and the dogs are not use to neighbors, and they are learning not to bark at the kids playing, but it's a process.
I spend 12 hours or more...trying to fix my computer, and finally gave up when the last few messages I got told me not only could it not find my OS, it couldn't fix the partition and couldn't even reformat the hard drive. SO annoying. I guess I will rebuild it when I get time, but right now I am so fried, it's not a job for today...tomorrow....next week....
Brian has to go to the cancer clinic tomorrow for his check up and see how low his counts are. Currently getting the labs is a pain, because they won't email them because email isn't secure and I don't have a fax...but since this is about the 20th time this month I needed the use of a fax, I guess I am going to set one up. It will make things easier as far as paperwork for Brian goes. I still have a ton of stuff to fill out and get filed as well. I am hoping to put a dent in that this weekend.
I am feeling a little overwhelmed myself today...and when I was out doing errands, the traffic was horrid...did everyone come to the poconos for the holiday?....can they please go home?
On an upside, the weather is gorgeous. Warm, sunny, birds chirping....I got a chance to open up the whole house and air out....except for that one silly window WAY about the front door....and it would give us some good cross ventilation, I have to figure out how to make some little tool on a pole to open and shut that window...
I haven't heardfrom Hershey yet, I am hoping to hear from them soon so I know roughly what our schedule will be. It makes things easier so I can schedule other things around hospital time, because it is impossible to get anything done when Brian is there, because I am sitting with him.
we did get the propane filled for the grill, Brian always enjoys his cow grilled. (sorry PETA)...
Stephanie woke up with a sore throat and swollen glands...not something new or normally serious, except for the fact that Brian's going into the time of his lower blood counts. The worse possible time for her to get sick.
Brian is is a lot of pain today as well...in his bones, his legs and his jaw and his hips. That would be from the neulasta. He also has a major headache. That is probably from a low red blood cell count.
Scott has allergies and is WAY cranky himself. SO basically...I really can't make anyone happy today. And the dogs are just bark, bark, bark because the kids are off school today and the little precious furthings see and hear them running around playing and are yapping their little heads off. We live in a development now and the dogs are not use to neighbors, and they are learning not to bark at the kids playing, but it's a process.
I spend 12 hours or more...trying to fix my computer, and finally gave up when the last few messages I got told me not only could it not find my OS, it couldn't fix the partition and couldn't even reformat the hard drive. SO annoying. I guess I will rebuild it when I get time, but right now I am so fried, it's not a job for today...tomorrow....next week....
Brian has to go to the cancer clinic tomorrow for his check up and see how low his counts are. Currently getting the labs is a pain, because they won't email them because email isn't secure and I don't have a fax...but since this is about the 20th time this month I needed the use of a fax, I guess I am going to set one up. It will make things easier as far as paperwork for Brian goes. I still have a ton of stuff to fill out and get filed as well. I am hoping to put a dent in that this weekend.
I am feeling a little overwhelmed myself today...and when I was out doing errands, the traffic was horrid...did everyone come to the poconos for the holiday?....can they please go home?
On an upside, the weather is gorgeous. Warm, sunny, birds chirping....I got a chance to open up the whole house and air out....except for that one silly window WAY about the front door....and it would give us some good cross ventilation, I have to figure out how to make some little tool on a pole to open and shut that window...
I haven't heardfrom Hershey yet, I am hoping to hear from them soon so I know roughly what our schedule will be. It makes things easier so I can schedule other things around hospital time, because it is impossible to get anything done when Brian is there, because I am sitting with him.
we did get the propane filled for the grill, Brian always enjoys his cow grilled. (sorry PETA)...
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