today was the first monday in a while it didn't rain. That was good. it is cold enough here tonight to have a fire though...which is also nice. I like having fires.
Brian and I both are not feeling well. I assume we picked something up on the last trip to the hospital. He's tired and has cold symptoms, I have a low grade fever and a very sore throat.
I found myself looking around tonight and being concerned about things being done when I am gone. Right now, I can run around and do the things that got overlooked or forgotten, but I won't be here to do that soon, and the stress I feel is tremendous. I am feeling very uptight about being away.
to make things worse, I don't really feel like all 4 of us are quite on the same page yet on priorities. I hope we get there soon, or I'll be driving back and forth from Hershey worried about things in both places wearing myself out and that won't do anyone any good.
I don't think people realize the strain that caregivers are really under. And I feel additional stress because I do not like to be away from home.
Even doctor's are clueless....I remember once about 1/2 through Brian's first treatments, his oncologist suggested I take a few books and get a hotel room at the beach for a few days. Gee, what a fabulous idea,....but she was totally clueless as to the financing strain and the inability of spare time and funds to just take off like that. It never ceases to amaze me how smart people are just that stupid sometimes.
tomorrow I have to get a couple of landscaping ties to put around the dog pen....we dog tested it to day and identified a few places where Wubbie will no doubt try and get out. I think a landscaping ties will address that issue and it will be one more thing off my "list"
Monday, May 10, 2010
Saturday, May 8, 2010
satuday...what a day...
what a windy day.... crazy winds here today. Lost power for a while as well....
Scott picked up a dog pen the other day I found on Freecycle. We put it up today for the dogs. It's better then the little bit of fence we had up for them. It gives them a much bigger space to run around, and gives Brian a little more room to sit with them and throw a ball for them. As much as I don't want them to be, the dogs are an issue because Brian has in the past spent the majority of the time with them.
if you are not familiar with Freecycle, I recommend checking it out. I've been a member for many years, it's purpose is to share unwanted things with one another while keeping things out of the landfills. It's great. I highly recommend it to everyone. I have both given away a zillion things, as well as gotten many things. I have also make friends through Freecycle (Hi Jean :) ) Great Friends.
Brian decided to try and help with a few chores today. He worked around the house on pet chores and did a load of laundry. After about 40 minutes, he was totally exhausted and has been alseep for a long time now. But it is good he felt up to helping a little and that he's sleeping now.
Stephanie came home from work with my favorite bead magazines, a couple of roses and a great card for mother's day. Does it get any better then that?....well maybe the years where her birthday is also on Mother's day.
I have a bit of a cold...and quite a sore throat tonight, but I am rarely sick, so I am sure it will pass quickly.
Hopefully Brian will wake up plenty refreshed after the long sleep he is getting. I hope he will feel up to having a nice BBQ outside. wind and rain permitting. He's got a busy day on wedneday and will be pretty tired out after all that testing.
Scott picked up a dog pen the other day I found on Freecycle. We put it up today for the dogs. It's better then the little bit of fence we had up for them. It gives them a much bigger space to run around, and gives Brian a little more room to sit with them and throw a ball for them. As much as I don't want them to be, the dogs are an issue because Brian has in the past spent the majority of the time with them.
if you are not familiar with Freecycle, I recommend checking it out. I've been a member for many years, it's purpose is to share unwanted things with one another while keeping things out of the landfills. It's great. I highly recommend it to everyone. I have both given away a zillion things, as well as gotten many things. I have also make friends through Freecycle (Hi Jean :) ) Great Friends.
Brian decided to try and help with a few chores today. He worked around the house on pet chores and did a load of laundry. After about 40 minutes, he was totally exhausted and has been alseep for a long time now. But it is good he felt up to helping a little and that he's sleeping now.
Stephanie came home from work with my favorite bead magazines, a couple of roses and a great card for mother's day. Does it get any better then that?....well maybe the years where her birthday is also on Mother's day.
I have a bit of a cold...and quite a sore throat tonight, but I am rarely sick, so I am sure it will pass quickly.
Hopefully Brian will wake up plenty refreshed after the long sleep he is getting. I hope he will feel up to having a nice BBQ outside. wind and rain permitting. He's got a busy day on wedneday and will be pretty tired out after all that testing.
Thursday, May 6, 2010
Thursday's thoughts 2
Today we stayed home. Meowie is definitively on her way to the rainbow bridge and none of us really felt like going to the movies and then coming home to find her gone. So we've lit some candles, wrapped her in a soft blanket and are just spending time waiting for her to pass quietly.
If some of you question that choice rather then rush off to the vet to euthanize her, let me assure you she is in no apparent pain and is sleeping. She is just very old. I have made that choice for too many of my pets, and it is never an easy one. Those of you who have been "with me" through the FIP ordeal know only too well I have seen enough to last me forever.
When Brian was younger, and our first cat died, he decided we would wrap her like a mummy and place her favorite things in a box with her. Stephanie likes to plant bleeding hearts around in memory of a passed favorite pet.
I think with Meowie, a simple grave in the woods with a chicken leg would make her spirit happy.
I trapped Meowie a few days before she gave birth to 4 kittens about 16+ years ago. She was part of a feral cat colony that lived behind the Kentucky fried chicken in Flemington. She never tamed, not in all those years she's lived with us, but she was happy, she'd eat in the kitchen with us, sleep on the end of the bed, but never was there ever touching allowed. But unlike some feral, she was always happy inside. When we moved, it was quite a chore to get her into a carrier...but that is another story.
Brian worked on the laptop some more installing a few more older games to play in Hershey, and trying out a few more to see if they would run. Transferring some files from his computer as well. Since I doubt we will have internet access at the hospital, he's frustrated and a little cranky about his gaming limitations. For those of you who don't know, Brian deal with a great deal of things through video game transference. Unlike his father, he has really no temper, in fact tends towards passive aggression and the video game thing works for him.
Scott's sister Donna and her husband have planned a fund raiser for Brian
http://www.facebook.com/home.php#!/event.php?eid=125387870804962
and we want to thank her for all her support and efforts on Brian's behalf. It's really a terrific thing she's planning.
If some of you question that choice rather then rush off to the vet to euthanize her, let me assure you she is in no apparent pain and is sleeping. She is just very old. I have made that choice for too many of my pets, and it is never an easy one. Those of you who have been "with me" through the FIP ordeal know only too well I have seen enough to last me forever.
When Brian was younger, and our first cat died, he decided we would wrap her like a mummy and place her favorite things in a box with her. Stephanie likes to plant bleeding hearts around in memory of a passed favorite pet.
I think with Meowie, a simple grave in the woods with a chicken leg would make her spirit happy.
I trapped Meowie a few days before she gave birth to 4 kittens about 16+ years ago. She was part of a feral cat colony that lived behind the Kentucky fried chicken in Flemington. She never tamed, not in all those years she's lived with us, but she was happy, she'd eat in the kitchen with us, sleep on the end of the bed, but never was there ever touching allowed. But unlike some feral, she was always happy inside. When we moved, it was quite a chore to get her into a carrier...but that is another story.
Brian worked on the laptop some more installing a few more older games to play in Hershey, and trying out a few more to see if they would run. Transferring some files from his computer as well. Since I doubt we will have internet access at the hospital, he's frustrated and a little cranky about his gaming limitations. For those of you who don't know, Brian deal with a great deal of things through video game transference. Unlike his father, he has really no temper, in fact tends towards passive aggression and the video game thing works for him.
Scott's sister Donna and her husband have planned a fund raiser for Brian
http://www.facebook.com/home.php#!/event.php?eid=125387870804962
and we want to thank her for all her support and efforts on Brian's behalf. It's really a terrific thing she's planning.
Wednesday, May 5, 2010
Wednesday's check up.....
We headed for Allentown early this morning....the driver's were their typical crazy on 33....and we were down to 78 at the tail end of rush hour.
There was a wait for a while at the clinic, which isn't typical and Brian was a little manic....but considering he hasn't been on any medications for that in quite a while now, not too bad...he's obviously been watching the news too much..
His check up and counts were good. Although the nurse had a difficult time drawing blood. And although the nurse practitioner he say is obviously very intelligent and competent, I'd be lying if I said I particularly cared for her mannerisms. She's got an air of superiority I took an instant dislike to. I don't think she much cares for me either.....I'm crushed....really I am.....just...crushed.....two know it alls in a room together...just a bad mix.
Stephanie interviewed again today for the new job...that is 2 interviews in 2 days for the same job..(first with the sous chef and today wit hteh head chef) ...she's very excited and I am not sure she can take the rejection should it come...I am concerned about that for sure. But she gave it her all....and brought with her two days in a row quite a portfolio of tastiness.....I know I just hated my kitchen being full of yummy things. She's really quite talented and they would be missing quite the catch if she doesn't get the job. She's got the drive and imagination for sure.
Brian has the tests next week, the doctor visit the following monday...and then I would imagine we'll get scheduled to go out to Hershey to start the harvest procedures.
Because Brian's counts are so good and he's been house bound for so long, I am going to take him to the movies tomorrow to see "How to train your Dragon". He doesn't have a lot of time before he is facing a long time of isolation. It's not good for a young man to be so confined....even a self contained one like Brian.
One of our old cats is going to pass in the next few days. She is about 17 and has lived a good long life, although in all the time, she never allowed us to really handle her. I had taken in 3 ferals many years ago, and she is the last of them. It is good that her passing is natural and will occur before I have to go away with Brian.
Brian is somewhat uptight about the whole process as the time gets closer. But he is trying to prepare and think about what he will do for at least 3 weeks in a bed, so you might see some things appear on his wish list...he has a small pile of books ready, has an old laptop with a few old games on it....(and I am going to try and get THE DIG installed on it as well...it was a great old game we loved). We're also going to see if we can get the PS3 to work with the smaller computer monitor so he can take that as well. 3 ++ weeks can be a really LONG time.....and he can fry my brain fast if he's bored...and Brian can feel like death warmed over and still bored and annoying...trust me.
I know I have a few days of emails etc to answer...but I am swamped with ebay and Brian and some paperwork I have to get done, so give me a few more days to try and get to you.
There was a wait for a while at the clinic, which isn't typical and Brian was a little manic....but considering he hasn't been on any medications for that in quite a while now, not too bad...he's obviously been watching the news too much..
His check up and counts were good. Although the nurse had a difficult time drawing blood. And although the nurse practitioner he say is obviously very intelligent and competent, I'd be lying if I said I particularly cared for her mannerisms. She's got an air of superiority I took an instant dislike to. I don't think she much cares for me either.....I'm crushed....really I am.....just...crushed.....two know it alls in a room together...just a bad mix.
Stephanie interviewed again today for the new job...that is 2 interviews in 2 days for the same job..(first with the sous chef and today wit hteh head chef) ...she's very excited and I am not sure she can take the rejection should it come...I am concerned about that for sure. But she gave it her all....and brought with her two days in a row quite a portfolio of tastiness.....I know I just hated my kitchen being full of yummy things. She's really quite talented and they would be missing quite the catch if she doesn't get the job. She's got the drive and imagination for sure.
Brian has the tests next week, the doctor visit the following monday...and then I would imagine we'll get scheduled to go out to Hershey to start the harvest procedures.
Because Brian's counts are so good and he's been house bound for so long, I am going to take him to the movies tomorrow to see "How to train your Dragon". He doesn't have a lot of time before he is facing a long time of isolation. It's not good for a young man to be so confined....even a self contained one like Brian.
One of our old cats is going to pass in the next few days. She is about 17 and has lived a good long life, although in all the time, she never allowed us to really handle her. I had taken in 3 ferals many years ago, and she is the last of them. It is good that her passing is natural and will occur before I have to go away with Brian.
Brian is somewhat uptight about the whole process as the time gets closer. But he is trying to prepare and think about what he will do for at least 3 weeks in a bed, so you might see some things appear on his wish list...he has a small pile of books ready, has an old laptop with a few old games on it....(and I am going to try and get THE DIG installed on it as well...it was a great old game we loved). We're also going to see if we can get the PS3 to work with the smaller computer monitor so he can take that as well. 3 ++ weeks can be a really LONG time.....and he can fry my brain fast if he's bored...and Brian can feel like death warmed over and still bored and annoying...trust me.
I know I have a few days of emails etc to answer...but I am swamped with ebay and Brian and some paperwork I have to get done, so give me a few more days to try and get to you.
Monday, May 3, 2010
Monday's musings
Well, the good news is that the toe looks better today. We soaked it last night for a while and clipped it back a little more. I think we have headed off the worst of an infection. We cleaned it up with betadine and a band-aid at least for a short while....
I think his counts are going to be surprisingly good wednesday. He looks good, his color is pink and there hasn't been any petechiae. The mouth sores haven't really amounted to too much this time, even less then before and the area on his lip is all healed.
Stephanie is working on her portfolio for a job interview tomorrow....and let me tell you, her portfolio is delicious...there is bread rising, dough sitting...and cookies chilling. I am going to print out some of the other things she's produced and put together some pictures as well for her.
It's a beautiful day here, mid 70's, sunny, warm...if I wouldn't feel guilty about how much I have to get done, I'd go sit at the lake for a couple of hours. But I need to get a ton of things done, laundry and bathroom cleaning. I do wish I had a clothes line up, it's a perfect day to hang wash, and there is nothing like sheets and clothes dried on a line. The smell is wonderful.
(add to the do list...clothes line...wonder where mine is from the other house?...I suppose we probably used the rope to tie things for the move...)
It rained last night which was good, we needed it, and all the dandelions bloomed, so no more salad greens..they are too bitter once they bloom, but I got some for salad last week. The lilacs are blooming, just a few flowers, the move last year shocked them and it will take at least another year before they are full again.
The Doe and her yearlings were here last night. Brian fed them banana peels and some apple skin. He says the apple skin tastes funny to him right now, so he's been peeling his apples. He said a few things taste funny still, but that will pass once the treatments are behind him. He loves to feed the deer. They are very tame here. We heard the turkeys and they riled up the dogs, but I haven't seen them. Brian said he saw one of the chipmunks the other day, they are very fun to watch.
I can hear Stephanie on the phone in the other room, and I can't help but thinking she's really missing her calling....she really should have been a social worker...but pastry and baking is her heart's desire....
I have more medical paperwork to work on tonight for a while. I always feel like I am behind it in. Of course that more comes in the mail everyday doesn't help.
Scott has a cough today...I don't know if he caught a cold from work or what, but I hope he doesn't share it.
I think his counts are going to be surprisingly good wednesday. He looks good, his color is pink and there hasn't been any petechiae. The mouth sores haven't really amounted to too much this time, even less then before and the area on his lip is all healed.
Stephanie is working on her portfolio for a job interview tomorrow....and let me tell you, her portfolio is delicious...there is bread rising, dough sitting...and cookies chilling. I am going to print out some of the other things she's produced and put together some pictures as well for her.
It's a beautiful day here, mid 70's, sunny, warm...if I wouldn't feel guilty about how much I have to get done, I'd go sit at the lake for a couple of hours. But I need to get a ton of things done, laundry and bathroom cleaning. I do wish I had a clothes line up, it's a perfect day to hang wash, and there is nothing like sheets and clothes dried on a line. The smell is wonderful.
(add to the do list...clothes line...wonder where mine is from the other house?...I suppose we probably used the rope to tie things for the move...)
It rained last night which was good, we needed it, and all the dandelions bloomed, so no more salad greens..they are too bitter once they bloom, but I got some for salad last week. The lilacs are blooming, just a few flowers, the move last year shocked them and it will take at least another year before they are full again.
The Doe and her yearlings were here last night. Brian fed them banana peels and some apple skin. He says the apple skin tastes funny to him right now, so he's been peeling his apples. He said a few things taste funny still, but that will pass once the treatments are behind him. He loves to feed the deer. They are very tame here. We heard the turkeys and they riled up the dogs, but I haven't seen them. Brian said he saw one of the chipmunks the other day, they are very fun to watch.
I can hear Stephanie on the phone in the other room, and I can't help but thinking she's really missing her calling....she really should have been a social worker...but pastry and baking is her heart's desire....
I have more medical paperwork to work on tonight for a while. I always feel like I am behind it in. Of course that more comes in the mail everyday doesn't help.
Scott has a cough today...I don't know if he caught a cold from work or what, but I hope he doesn't share it.
Sunday, May 2, 2010
the weekend's always too short...part deux....
I barely even noticed it was a weekend...it was just go go go....and once again I feel like I barely accomplished anything.
I think I should take a day off...I am worn out and starting to not accomplish things effectively. It happens when you run and run...
Scott took the door apart on the car trying to fix the motor on the window that doesn't go up and down that I need to work for the parking garage at the hospital...He didn't get it finished before he needed to go to bed for work....hopefully it will get finished tomorrow.
Stephanie is going out to look for a new job tomorrow...things are deteriorating at her current job and she didn't make enough over the weekend to justify the drive there. Besides...there is just too many unsavory things going on there...time to move on. It makes her sad because she has a great work ethic and hates being under appreciated.
Brian has an infected toenail. I clipped it and cleaned it up best I could, but I am concerned since his counts are heading into the usually lowest period. He ended up spending a week in the hospital in 2001 because of an infected toenail during neutropenia.
Oh course I had to bug him about putting some slippers or shoes on his feet....he is my barefoot child for sure...I rarely wear anything more then flipflops even in the winter.
Not sure if the toe will land us back at the hospital sooner then Wednesday or not..sort of depends on his immune system.
Tonight He felt a lump back near his incision and he was concerned it was the cancer again so quickly. It looks a little swollen, but I didn't feel anything. The PET scan on the 12th will give us the answer to that...I don't know if it will change anything if it is regrowing so quickly.
I know it is not good if it is regrowing so quickly.
I think I should take a day off...I am worn out and starting to not accomplish things effectively. It happens when you run and run...
Scott took the door apart on the car trying to fix the motor on the window that doesn't go up and down that I need to work for the parking garage at the hospital...He didn't get it finished before he needed to go to bed for work....hopefully it will get finished tomorrow.
Stephanie is going out to look for a new job tomorrow...things are deteriorating at her current job and she didn't make enough over the weekend to justify the drive there. Besides...there is just too many unsavory things going on there...time to move on. It makes her sad because she has a great work ethic and hates being under appreciated.
Brian has an infected toenail. I clipped it and cleaned it up best I could, but I am concerned since his counts are heading into the usually lowest period. He ended up spending a week in the hospital in 2001 because of an infected toenail during neutropenia.
Oh course I had to bug him about putting some slippers or shoes on his feet....he is my barefoot child for sure...I rarely wear anything more then flipflops even in the winter.
Not sure if the toe will land us back at the hospital sooner then Wednesday or not..sort of depends on his immune system.
Tonight He felt a lump back near his incision and he was concerned it was the cancer again so quickly. It looks a little swollen, but I didn't feel anything. The PET scan on the 12th will give us the answer to that...I don't know if it will change anything if it is regrowing so quickly.
I know it is not good if it is regrowing so quickly.
Saturday, May 1, 2010
Saturday update
Brian's feeling okay. He is getting the mouth sores, but we already started him on the prescription mouth rinse to help with them.
He tends to eat a softer colder diet to help as well...(ie: fruit smoothees).
I updated the calender to show the NADIR visit next week. He'll be at the lowest counts at that time, 2 weeks following the chemotherapy. Hopefully not too low and he won't require any transfusions.
He seems good so far, relatively speaking.
He has had a small stitch knot surface through his skin up above the port placement. Not sure if it was suppose to dissolve, or it is holding the catheter, but we'll have the doctor look next next, unless it starts to look infected, then we'll go to the ER. Can't mess around with even the smallest of infections during the low count times. Something innocent enough looking can land him in the hospital for several days. This has happened in the past, so we know to be as careful as possible.
It's 84 degrees here today....where did spring go?.....but it's a beautiful day.
He tends to eat a softer colder diet to help as well...(ie: fruit smoothees).
I updated the calender to show the NADIR visit next week. He'll be at the lowest counts at that time, 2 weeks following the chemotherapy. Hopefully not too low and he won't require any transfusions.
He seems good so far, relatively speaking.
He has had a small stitch knot surface through his skin up above the port placement. Not sure if it was suppose to dissolve, or it is holding the catheter, but we'll have the doctor look next next, unless it starts to look infected, then we'll go to the ER. Can't mess around with even the smallest of infections during the low count times. Something innocent enough looking can land him in the hospital for several days. This has happened in the past, so we know to be as careful as possible.
It's 84 degrees here today....where did spring go?.....but it's a beautiful day.
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