Brian is really feeling poorly tonight. I think it is double disappointing to him because he was feeling okay and so sure he was going to control the side effects.
I am doing his laundry now then I am going to call him and see how he is. If his fever is up any further then I am going to head back to the hospital for. The night.
He's got several antibiotic iv's up now, and hopefully he'll be rallying against the machine soon.
Saturday, July 31, 2010
saturday pm update
well...Brian's got a fever now( 100.6 is the chemo fever cut off) , so it is "fever" protocol....chest xrays, blood cultures, antibiotics...
I'll wait on the results to see if this changes my plans to sleep at the guest house and do laundry. I've been here at the hospital since tuesday and need to wash Bri's clothes and could use a decent night sleep and a meal someplace else then the hospital cafeteria...
oh well....
I'll wait on the results to see if this changes my plans to sleep at the guest house and do laundry. I've been here at the hospital since tuesday and need to wash Bri's clothes and could use a decent night sleep and a meal someplace else then the hospital cafeteria...
oh well....
saturday update
Brian's white count has now dipped to 0.2 That is very low. But his red count is holding around 3 and his platelets dropped to 78, but they are hanging on, so no transfusions today.
He is a great risk to infection and unfortunately he has developed mucusitis down his esophagus and stomach. Painful and annoying.
He's feeling a little less today...a little less everything. But none of these side effects are new to Brian so while painful, not surprising,
He's still bored and unhappy at his food limitations.
I am going to run out and do his laundry and see if I can procure some neutropenic approved Brian food....
He is a great risk to infection and unfortunately he has developed mucusitis down his esophagus and stomach. Painful and annoying.
He's feeling a little less today...a little less everything. But none of these side effects are new to Brian so while painful, not surprising,
He's still bored and unhappy at his food limitations.
I am going to run out and do his laundry and see if I can procure some neutropenic approved Brian food....
Friday, July 30, 2010
Friday pm update
Aggravation.....my favorite Brian emotion...he is annoyed at his diet limitations. Brian is never happy when someone comes between him and his food.
Not being home, we have no choice but to rely on take out and he can't have any. Just frozen, hospital or home cooked. No fresh fruits and veggies...he is cranky....and determined now to consume all the milk pints in the hospital.
the internet has not worked today here at all, so it's been a long day, no tv and no internet....sucks for both of us.
stephanie is sick and apparently didn't get much sleep at home, so I got a cranky phone call from her as well.
on an up side, Brian is basically in good spirits, pacing like a mad man because he refuses to get any more heparin injections and bugging everyone to get out of here. Exactly what I expect from him at this point.
complaining that the antivirals and antifungals taste funny, make his pee smell funny,Now, let's see what tomorrow brings....so far nothing unexpected.
There hasn't been the pink pee that we were told to watch for as he shed some of his stem cells..so maybe his body has gobbled them all up and put them to good use. Tomorrows labs will be interesting to see.
so far he has one anal sore, a little bit of peeling in his mouth, some pustules on his head but nothing too serious.
Not being home, we have no choice but to rely on take out and he can't have any. Just frozen, hospital or home cooked. No fresh fruits and veggies...he is cranky....and determined now to consume all the milk pints in the hospital.
the internet has not worked today here at all, so it's been a long day, no tv and no internet....sucks for both of us.
stephanie is sick and apparently didn't get much sleep at home, so I got a cranky phone call from her as well.
on an up side, Brian is basically in good spirits, pacing like a mad man because he refuses to get any more heparin injections and bugging everyone to get out of here. Exactly what I expect from him at this point.
complaining that the antivirals and antifungals taste funny, make his pee smell funny,Now, let's see what tomorrow brings....so far nothing unexpected.
There hasn't been the pink pee that we were told to watch for as he shed some of his stem cells..so maybe his body has gobbled them all up and put them to good use. Tomorrows labs will be interesting to see.
so far he has one anal sore, a little bit of peeling in his mouth, some pustules on his head but nothing too serious.
friday am update
Well....the labs say.....NEUTROPENIC....
his white count is in the toilet.....very low...500 when normal is 4000-10000.
so no real surprise, but he still feels good..bored...and he really isn't knocked out and tired, and that would no doubt surprise the doctors except all they see is computer boy....so they think he is tired and bed ridden.. they completely miss the cavern paced into the floor. But it's not a big deal at this point and I am staying well on top of things.
In all honesty, he's had white counts like this before. They will come up in time. His red cell count is holding steady and his platelets fell to 98 which is low, but not transfusion low....we'll see what tomorrow's numbers look like. He's putting a hurting on the little milk containers in the nourishment center refridge....
his white count is in the toilet.....very low...500 when normal is 4000-10000.
so no real surprise, but he still feels good..bored...and he really isn't knocked out and tired, and that would no doubt surprise the doctors except all they see is computer boy....so they think he is tired and bed ridden..
In all honesty, he's had white counts like this before. They will come up in time. His red cell count is holding steady and his platelets fell to 98 which is low, but not transfusion low....we'll see what tomorrow's numbers look like. He's putting a hurting on the little milk containers in the nourishment center refridge....
Thursday, July 29, 2010
thursday update
Brian is doing well today. He has announced to everyone that he wants to go home. They are all sure that his counts are going to plummet and he is going to be feeling poorly in about 4 days.
That is certainly possible, but if that didn't happen, that wouldn't surprise me either. I have watched Brian go through things that would bring most to their knees.
It is getting pretty boring, I've read 5 books, and watched a stack of DVD's.....Brian has not been able to read because of his blurred vision, but he has been playing his video games.
I've also been making beaded lariats...the Id holder kind. In a way it is ironic since it was when Brian was undergoing chemo as a kid that I first saw the Id lariats and thought of making beaded ones after seeing some pretty boring ones on the nurses and Doctors. They don't wear them here, most wear their id's on spring loaded clips as they are also swipe cards.
Scott brought me some more food, so I am free of hospital meals for a couple days. I can fit a little in the room fridge, so that is good. Save a little money and my stomach.
That is certainly possible, but if that didn't happen, that wouldn't surprise me either. I have watched Brian go through things that would bring most to their knees.
It is getting pretty boring, I've read 5 books, and watched a stack of DVD's.....Brian has not been able to read because of his blurred vision, but he has been playing his video games.
I've also been making beaded lariats...the Id holder kind. In a way it is ironic since it was when Brian was undergoing chemo as a kid that I first saw the Id lariats and thought of making beaded ones after seeing some pretty boring ones on the nurses and Doctors. They don't wear them here, most wear their id's on spring loaded clips as they are also swipe cards.
Scott brought me some more food, so I am free of hospital meals for a couple days. I can fit a little in the room fridge, so that is good. Save a little money and my stomach.
Wednesday, July 28, 2010
Wednesday PM update
Brian's labs don't look too bad today. All are a little below normal, but pretty much what you would expect.
He did develop an ulcer on his bum from the chemo, we've had them before, so we know that getting right on it is the best way to nip a potential problem in the bud.
He's officially considered neutropenic (or neutro penis as he used to call it when he was younger) ,so no more fresh fruits and veggies. It was impossible to bring the veggie washer to the hospital, so he is just going to have to endure without until his counts recover.
It's a little harder being away from home, I can't slap 1/2 cow on the grill and bring it into him to eat, he's going to have to endure hospital food...and let me tell you...having eaten in quite a few hospitals now, I can say with reasonable experience, the food here is terrible.
Special thanks to my long time friend Elizabeth. She has a knack for knowing how to help and what to say., and it's almost scary how well she knows me. We've been friends a long time and I am lucky to have her.
He did develop an ulcer on his bum from the chemo, we've had them before, so we know that getting right on it is the best way to nip a potential problem in the bud.
He's officially considered neutropenic (or neutro penis as he used to call it when he was younger) ,so no more fresh fruits and veggies. It was impossible to bring the veggie washer to the hospital, so he is just going to have to endure without until his counts recover.
It's a little harder being away from home, I can't slap 1/2 cow on the grill and bring it into him to eat, he's going to have to endure hospital food...and let me tell you...having eaten in quite a few hospitals now, I can say with reasonable experience, the food here is terrible.
Special thanks to my long time friend Elizabeth. She has a knack for knowing how to help and what to say., and it's almost scary how well she knows me. We've been friends a long time and I am lucky to have her.
The Stem cell Transplant
The transplant is done. It took about a 1/2 hour and Brian says it tastes like feet....how he knows what feet tastes like, I am sure I do not want to know.
He was very tired about 1/2 hour post transplant, took a power nap and was fine. The doctors say about in 5 days he'll be pretty much knocked out. Brian doesn't believe him and has decided he will go home in a week...unlikely but we'll see.
Scott came down today for the day, it's the only day he's had off, but he's heading back to work tonight. So much for that "family oriented "compaqny he works for, but no real big surprise there. I know I am not surprised. I've seen it before, these companies make a big deal out of "The children's miracle network" and all their other cushy tax deductions, but when it comes to actually personal help, well you are up a creek. No tax deduction in that kind of help.
He was very tired about 1/2 hour post transplant, took a power nap and was fine. The doctors say about in 5 days he'll be pretty much knocked out. Brian doesn't believe him and has decided he will go home in a week...unlikely but we'll see.
Scott came down today for the day, it's the only day he's had off, but he's heading back to work tonight. So much for that "family oriented "compaqny he works for, but no real big surprise there. I know I am not surprised. I've seen it before, these companies make a big deal out of "The children's miracle network" and all their other cushy tax deductions, but when it comes to actually personal help, well you are up a creek. No tax deduction in that kind of help.
Tuesday, July 27, 2010
tuesday pm update
Well, the trip to the ophthalmology department was interesting. There does not appear to be any damage to Brian's eyes, just some temporary blurred vision.
He is still anxious, but he got some relief in knowing despite how they look with the blood in them and his vision, they will be fine.
Tomorrow is transplant day. His labs today are still in the low normal range, but they will no doubt be starting to fall in another day or so.
While he was in ophthalmology, because he left the floor, his medical records with all the notes, opinions, lab results etc...went with us. It's always good to read the file when the opportunity presents itself....it always contains information you might not otherwise know.And they won't always just let you read it without a qualm....
They will be bringing in his frozen cells around 11am...defrosting them and injecting them over about a 1/2 hour tomorrow. I understand from the nurse practitioner it will taste funny to Brian and smell funny to me....I'll let you know how that goes. (Brian can taste everything he gets injected with IV)...
He is still anxious, but he got some relief in knowing despite how they look with the blood in them and his vision, they will be fine.
Tomorrow is transplant day. His labs today are still in the low normal range, but they will no doubt be starting to fall in another day or so.
While he was in ophthalmology, because he left the floor, his medical records with all the notes, opinions, lab results etc...went with us. It's always good to read the file when the opportunity presents itself....it always contains information you might not otherwise know.And they won't always just let you read it without a qualm....
They will be bringing in his frozen cells around 11am...defrosting them and injecting them over about a 1/2 hour tomorrow. I understand from the nurse practitioner it will taste funny to Brian and smell funny to me....I'll let you know how that goes. (Brian can taste everything he gets injected with IV)...
tuesday update midday
Last Night I left after rush hour to do laundry, and pick up some items Brian needed. I was in the most peculiar Target Store I have ever seen. It was two floors and it had a shopping cart escalator.
Brian is still having a difficult time with anxiety. He broke his glasses over night and he has a lot broken blood vessels in his eyes, and seriously blurred vision, so he is going to be examined by ophthalmology later today. (not sure how the glasses got broken, but between the blurred vision and fits of manic and anxiety...well...)you get the picture)
The chemotherapy is over, today is considered a day of rest, and tomorrow he will get the stem cell procedure to get his donated cells back. Then it is just a matter of supportive therapy (blood and platelet transfusions, antibiotics, antifungals, antivirals etc...) until his system and bone marrow start to recover. While it can take months, even up to a year for things to return to normal, once his counts start to recover, they will let him go home we hope.
last night I had Stephanie email me a bunch of pictures of the cats and dogs, but instead of cheering him up, it just made him sad.
He's having a hard time of it for sure. It's hard for me to see him like this, I feel frustrated, annoyed and helpless all at the same time.
thanks to Scott's sister Donna and our kind friend Sophia and her husband for their kind donations towards costs here in Philly. It's a big help.
Brian is still having a difficult time with anxiety. He broke his glasses over night and he has a lot broken blood vessels in his eyes, and seriously blurred vision, so he is going to be examined by ophthalmology later today. (not sure how the glasses got broken, but between the blurred vision and fits of manic and anxiety...well...)you get the picture)
The chemotherapy is over, today is considered a day of rest, and tomorrow he will get the stem cell procedure to get his donated cells back. Then it is just a matter of supportive therapy (blood and platelet transfusions, antibiotics, antifungals, antivirals etc...) until his system and bone marrow start to recover. While it can take months, even up to a year for things to return to normal, once his counts start to recover, they will let him go home we hope.
last night I had Stephanie email me a bunch of pictures of the cats and dogs, but instead of cheering him up, it just made him sad.
He's having a hard time of it for sure. It's hard for me to see him like this, I feel frustrated, annoyed and helpless all at the same time.
thanks to Scott's sister Donna and our kind friend Sophia and her husband for their kind donations towards costs here in Philly. It's a big help.
Monday, July 26, 2010
monday am update
Brian is very tired and very agitated. It's reached the stage where he is getting ativan round the clock and we're considering other medications. I think I finally made it clear that if they leave him alone long enough to sleep, this well might resolve. He hasn't slept for more then an hour straight in almost 3 days. Either have I, but I can take it better, though I did take my xanax this morning. I haven't left the hospital since Friday am, but I am going to leave after dinner tonight and go back to my gracious host house for some much needed sleep, and to do laundry. Brian and I need a little space for a few hours anyhow.
Today is the last day of his chemo, they will hang his last bag of cytoxin late tonight. Steriods end tomorrow, but he will be on some lasix to help get rid of the accumulating fluids. It's been a difficult few days for sure.
Today is the last day of his chemo, they will hang his last bag of cytoxin late tonight. Steriods end tomorrow, but he will be on some lasix to help get rid of the accumulating fluids. It's been a difficult few days for sure.
Sunday, July 25, 2010
sunday pm update
okay...so Brian managed to get a meal in and keep it down. Thank goodness for the zofran. Unfortunately it's a once a day dosing and he can't have it again until tomorrow afternoon.
The steriods have left him ancy, irritable and emotional tonight. Not a great combination with nausea, vomiting and being trapped in a hospital. He needs rest and can't get it.
tonight is the last dose of Etopiside. Let's hope that tomorrow and tuesday brings some better rest, better moods....just a little BETTER...
The steriods have left him ancy, irritable and emotional tonight. Not a great combination with nausea, vomiting and being trapped in a hospital. He needs rest and can't get it.
tonight is the last dose of Etopiside. Let's hope that tomorrow and tuesday brings some better rest, better moods....just a little BETTER...
sunday am update
today is the last day of the etopiside. One dose now, and another in 12 hours. Followed by the cytoxin. There is another day of the cytoxin. then the high dose chemotherapy will end.
Brian is currently having difficult bouts of nausea and vomiting and is generally very miserable, as well as being constipated from the zofran (in spite of the colace) and is retaining fluids as well.
on top of it all, there really was no sleep to be had, between the iv pump being cranky, the scheduled checks and blood pressure checks (his blood pressure drops form the etopiside sometimes). There hasn't been an hour undisturbed since 2am. For either of us. But it is Brian who is suffering. I am just tired...
Hey...diet mountain dew anyone???hun???please???.......
Brian is currently having difficult bouts of nausea and vomiting and is generally very miserable, as well as being constipated from the zofran (in spite of the colace) and is retaining fluids as well.
on top of it all, there really was no sleep to be had, between the iv pump being cranky, the scheduled checks and blood pressure checks (his blood pressure drops form the etopiside sometimes). There hasn't been an hour undisturbed since 2am. For either of us. But it is Brian who is suffering. I am just tired...
Hey...diet mountain dew anyone???hun???please???.......
Saturday, July 24, 2010
saturday pm update and labs...
The labs look okay today, his white cell count is way up from yesterday, but he did have a little fever yesterday. The rest are good so far. They won't start to plummet for a few more days.
We are on day 3 of the high dose chemotherapy before the transplant. He is getting 4 hours of cytoxin, and 1 hour etopiside twice a day. He is also getting mesna around the clock to protect his kidneys and bladder from the cytoxin.
He is pumped full of anti-nausea meds, zofran, compazine, ativan...and he felt well enough to eat his dinner and some ice pops. He also snacked on some shredded mini wheats. He also got up and walked around the floor rather then get another heparin injection which hurt and leave him black and blue. so far so good..
I am going to stay tonight on the it's a chair....it's a bed...because I know he's going to be feeling poorly again once they hang the cytoxin at midnight again...and it's not like I am sleeping anyhow since I am not home....I wish we lived closer to the hospital. the one good thing about when he first was diagnosed with cancer at age 14, was I could go home at night to my own bed cause we only lived 20 minutes away.
We are on day 3 of the high dose chemotherapy before the transplant. He is getting 4 hours of cytoxin, and 1 hour etopiside twice a day. He is also getting mesna around the clock to protect his kidneys and bladder from the cytoxin.
He is pumped full of anti-nausea meds, zofran, compazine, ativan...and he felt well enough to eat his dinner and some ice pops. He also snacked on some shredded mini wheats. He also got up and walked around the floor rather then get another heparin injection which hurt and leave him black and blue. so far so good..
I am going to stay tonight on the it's a chair....it's a bed...because I know he's going to be feeling poorly again once they hang the cytoxin at midnight again...and it's not like I am sleeping anyhow since I am not home....I wish we lived closer to the hospital. the one good thing about when he first was diagnosed with cancer at age 14, was I could go home at night to my own bed cause we only lived 20 minutes away.
Saturday Update
Okay, the no tv thing is getting annoying...seriously...what else are we suppose to do for endless hours of boredom.....
Brian had a long night of nausea. With the high dosage cytoxin, we knew this was going to be an issue. It's the only drug he's ever puked with. I'll probably stay at the hospital again tonight since he had such a rough night last night. Everything is bothering him, smells, noises...etc..and he's pretty over tired as well.
and so it begins....will post lab info later when I get a copy. His labs were okay yesterday except his phosphate level was low and his red cells are low. (not low enough for a rbc transfusion yet)...but they did give him something to boost his phosphate up.
I have a couple of pix, but the internet connection here at the hospital is way too slow to upload them...I'll see if I can figure something else out.
we miss the kitties and the dogs and we want to come home. :(
Brian had a long night of nausea. With the high dosage cytoxin, we knew this was going to be an issue. It's the only drug he's ever puked with. I'll probably stay at the hospital again tonight since he had such a rough night last night. Everything is bothering him, smells, noises...etc..and he's pretty over tired as well.
and so it begins....will post lab info later when I get a copy. His labs were okay yesterday except his phosphate level was low and his red cells are low. (not low enough for a rbc transfusion yet)...but they did give him something to boost his phosphate up.
I have a couple of pix, but the internet connection here at the hospital is way too slow to upload them...I'll see if I can figure something else out.
we miss the kitties and the dogs and we want to come home. :(
Friday, July 23, 2010
Friday PM update
okay...well so we have discovered some limitations...the tv gets 4 channels....none of them worth watching, but to get watchable tv, it is $8.00 a day per channel..so not in the budget...the parking is already whomping the budget....
so today while he is still feeling pretty good, Brian is BORED....and a bored Brian is a pacing back and froth...(yes froth)....so when the nurse came in to give him a heparin injection because he isn't up and about, I just about laughed my ass off....she hasn't seen the frantic pacing.
so today while he is still feeling pretty good, Brian is BORED....and a bored Brian is a pacing back and froth...(yes froth)....so when the nurse came in to give him a heparin injection because he isn't up and about, I just about laughed my ass off....she hasn't seen the frantic pacing.
friday update
today is day 5 in a 6 day count down to Brian's cell transplant. Last night he received the chemotherapy drug called Carmustine.
today, tomorrow, sunday and monday he will received etopiside iv's twice daily as well as cyclophosphamide. These drugs are the ones that cause the vomiting and nausea. on day 1 he rests and gets nothing and day 0 7/28/2010 he gets the cell transplant.
he was not feeling well because of the alcohol iv last night, so i I stayed at the hospital with him. visiting is permitted based on how he feels each day right now, so please call and check with him first. He's in room 7016 in the Rhodes bldg. He's not a big phone talking enthusiast, so please bear that in mind.
today, tomorrow, sunday and monday he will received etopiside iv's twice daily as well as cyclophosphamide. These drugs are the ones that cause the vomiting and nausea. on day 1 he rests and gets nothing and day 0 7/28/2010 he gets the cell transplant.
he was not feeling well because of the alcohol iv last night, so i I stayed at the hospital with him. visiting is permitted based on how he feels each day right now, so please call and check with him first. He's in room 7016 in the Rhodes bldg. He's not a big phone talking enthusiast, so please bear that in mind.
Thursday, July 22, 2010
thursday pm update
Day 1 chemo is in and done. A one hour iv solution in alcohol that leaves Brian singing "Burn baby burn".....also gave him a wicked headache.
LET THE WHINING BEGIN......any one got some cheese and crackers to go with that whine?
LET THE WHINING BEGIN......any one got some cheese and crackers to go with that whine?
Thursday update
Well, we arrived at the hospital about 7:30 last night. Got settled. Now we are just still waiting for them to get started with the chemo.
Hurry up and wait, but that is always how it is.
It's hot here and city like....the country mouse really doesn't like the city...but then I never did.
it's been almost 30 years since I have spent time here...not much has really changed.
Brian is already begging me to go find him some real food.....not hospital food....and so the draining of the resources begin........one cheesesteak at a time....
Hurry up and wait, but that is always how it is.
It's hot here and city like....the country mouse really doesn't like the city...but then I never did.
it's been almost 30 years since I have spent time here...not much has really changed.
Brian is already begging me to go find him some real food.....not hospital food....and so the draining of the resources begin....
Wednesday, July 21, 2010
Mid Wednesday Update
The wash is packed, the car is loaded, the paperwork is done and.....
we're waiting....
waiting.....
the hospital hasn't called yet with an available bed.... how funny is that...
will keep you updated.....
we're waiting....
waiting.....
the hospital hasn't called yet with an available bed.... how funny is that...
will keep you updated.....
Tuesday, July 20, 2010
Tuesday's update
Well we will be off tomorrow to Univ. of Penn..... I will post all of Bri's information, his room and visiting rules once we get there.
Unfortunately I just don't know how things work there. They don't even call us until tomorrow morning to tell us what time to be there. A little annoying for those of us who are CONTROL FREAKS....(nah, we don't have any of those living here....).
groceries are shopped for, car is fueled, most of the wash for packing is done, and 1/3 of my paperwork has been accomplished. Not too bad, but I'm still behind schedule.
Looks like it is Diet Mt. Dew time....
(hello, my name is Lorri and I am addicted to Diet Mt. Dew....I know it's full of chemicals and looks like nuclear waste, but I can't help myself...)
Unfortunately I just don't know how things work there. They don't even call us until tomorrow morning to tell us what time to be there. A little annoying for those of us who are CONTROL FREAKS....(nah, we don't have any of those living here....).
groceries are shopped for, car is fueled, most of the wash for packing is done, and 1/3 of my paperwork has been accomplished. Not too bad, but I'm still behind schedule.
Looks like it is Diet Mt. Dew time....
(hello, my name is Lorri and I am addicted to Diet Mt. Dew....I know it's full of chemicals and looks like nuclear waste, but I can't help myself...)
Monday, July 19, 2010
one from column a....one from column b....a side order of
...more time please....not that it matters. I, the queen of last minute procrastination of course have nothing packed, though I am doing wash....
but I slowly as to not overwhelm my delicate nature, am working through all of those things at once...tempered with a little cat time in between.
Otherwise I can just be running around in a panic and I just don't have the energy for it.
I also talked to the tomatoes and herbs, told them how I was looking forward to sharing their deliciousness when Brian and get home.
Brian is in an Anticipatory Funk. Everything is setting him off on a soap box dialog. It's just his way of dealing with how he feels about going.
we'll work it out, after not like there are actually a lot of choices.
Sunday, July 18, 2010
Sunday update
We took Brian out for some ice cream today as a treat. I know that once he gets chemo it will be off the list as just the way the machine makes the soft serve...and because of the neutropenia.
Naturally once we got there he decided he wanted cheese fries instead...can't help but be amused by that.
Our neighbors next door were up from the city (down from the city..across from the city?), so we visited with them for an hour. They are very nice people.
I have so many things still to get done though before we leave Wednesday and the hospital won't call until Wednesday to let us know what time to be there...a little frustrating.
I am of course worried about things going smoothly here while I am gone. And no doubt there will be too many things beyond my control. HATE THAT....
I am torn between caffeinated beverage evening and screw it....hum.....so many crappy choices, so little time. And who turned up the heat???
Fat people do not like heat....we are already well insulated and those of us who get hot flashes like heat even less....
several things pissed me off today...anyone need someone's head ripped off?....the mood moves me....
Saturday, July 17, 2010
Saturday's update
Brian is feeling a little manic right now. It's hard for him to sit and wait. His activity is so limited by his catheter and his health (tired ), and his brain is going a million miles a minute.
He spent today frustrated with a computer game he is trying to modify to get running on the old laptop. He spent the better part of the day trying to convince me to purchase a version of the game with other games for "only" $29.95....he was way too manic to listen to the "we can't afford it".
If you have never dealt with a manic phase, let me tell you that there isn't always reasoning with it. There certainly was a time when we could and would have simply made the purchase to make our lives easier. But Brian has done so well without medication and he went off frustrated but hours later had a solution.( that he can reluctantly live with) But it does make life a little more challenging then I'd choose. But if I had to choose, well, life wouldn't be consumed with cancer treatments either.
Despite how hard we try, there are always things and people to remind us we're not trying hard enough, or doing the right things. We just do the best we can and learn to be as happy as we can under the circumstances.
I myself and Scott and Stephanie are all feeling the funk of the pressure for 7 months now. IT can be depressing and frustrating and annoying and we're just the help...Brian has to suffer the pain, the side effects, the indignities, the frustration. It has to be so much worse for him. SO many things are answered with a no these days...you can't have that, you can't do that...
And yet, I watch him and I see how much he's grown and over come. It's amazing to think that this was a child the schools didn't even know how to educate. He's so smart, his knowledge far exceeds mine now, and yet he remains steadfast and dedicated to learning and figuring out how to make our lives less wasteful, more environmentally friendly. As annoying as h e can be, he really is an amazing young man, if not just a little intense....
Here is Brian's political take this week for you all to share....(he is very verbal about politics)I'm sure given time he'll change the date....
and for those who don't know who Cthulhu is....click here....
He spent today frustrated with a computer game he is trying to modify to get running on the old laptop. He spent the better part of the day trying to convince me to purchase a version of the game with other games for "only" $29.95....he was way too manic to listen to the "we can't afford it".
If you have never dealt with a manic phase, let me tell you that there isn't always reasoning with it. There certainly was a time when we could and would have simply made the purchase to make our lives easier. But Brian has done so well without medication and he went off frustrated but hours later had a solution.( that he can reluctantly live with) But it does make life a little more challenging then I'd choose. But if I had to choose, well, life wouldn't be consumed with cancer treatments either.
Despite how hard we try, there are always things and people to remind us we're not trying hard enough, or doing the right things. We just do the best we can and learn to be as happy as we can under the circumstances.
I myself and Scott and Stephanie are all feeling the funk of the pressure for 7 months now. IT can be depressing and frustrating and annoying and we're just the help...Brian has to suffer the pain, the side effects, the indignities, the frustration. It has to be so much worse for him. SO many things are answered with a no these days...you can't have that, you can't do that...
And yet, I watch him and I see how much he's grown and over come. It's amazing to think that this was a child the schools didn't even know how to educate. He's so smart, his knowledge far exceeds mine now, and yet he remains steadfast and dedicated to learning and figuring out how to make our lives less wasteful, more environmentally friendly. As annoying as h e can be, he really is an amazing young man, if not just a little intense....
and for those who don't know who Cthulhu is....click here....
Thursday, July 15, 2010
Thursday's update
It rained the last two days. the garden needed it/ We had a large speckled slug on the side of the house. He was pretty neat. Most of our slugs are yellow or tan. Brian loved him. Stephanie wanted to make him a terrarium and name him George.
Today I pruned the tomato plants. It had a bunch of stems at the bottom and with my not going ot be home, I will be happy if it gets watered. Other upkeep is unlikely.
I had another day of having a hard time getting motivated to get anything done. I am for sure in a funk. I did clean out under the kitchen sink and get rid of things we aren't going to use. Mostly plastic containers that have missing lids and cleaners I don't use. Recycling is on monday and it's a good time to sort the plastic food containers.
Brian is bored. Anxious to get the treatment done and get back home. We are of a like mind in that aspect.
Scott got Stephanie's car on the road but it looks like last week when she drove it home in the wrong gear up the hill, she did the transmission in once and for all. He tried flushing it and changing the filter, but it only has reverse, 1st and 2nd gear. It was having a problem with overdrive already, but was working fine in 3rd. It obviously was just enough to fry the gear last week. Scott's handling it rather well considering how many car issues there have been lately, but it doesn't resolve the needing another running car while I am gone issue. But we can only do what we can do. Since she's barely making enough money to cover the cost of her car insurance, cell phone and a little spending money, the job's going to play second fiddle to Scott getting to work for sure. But it doesn't help and doesn't come at the time when even if I will drive her or let her take my car, is even possible.
I am at the whatever point, and need to focus just on Brian's health for the next month anyhow.
I am going to caffeine my fat cells tonight and hope for the motivation I need to get at least my paperwork done.
Then maybe fight the oppressing depression by packing up some craft items to take with me and try and be optimistic about having spare time to sit and craft while supervising Brian and his treatment.
The picture is Brian during the collection of his stem cells. They pump the blood out, through the machine, which separates the cells and some plasma for the transplant and gives the balance of the blood back to him. He did really well with only a short period of low calcium and he got too warm from the blood warmer, but did fine after some calcium (in the form of tums) a couple of soda's and the blood warmer turned off.
Tuesday, July 13, 2010
so far so good
I flushed Brian's catheter again tonight. So far it is uncomfortable to him, but looks good. Last thing we need is an infection, but it bugs him and he has a hard time leaving it alone.
I started laying out his clothing for the month stay. Since we're in the city I am not sure of washer/dryer availability, so it's best to be prepared not to have one, and it is not likely I will be driving back and forth from home, so I want to make sure he has enough clothes. Me too of course. I'm going to call down to U of P tomorrow and see if they have any w/d facilitates. We did have one on the Peds floor in NJ, which made things easier, but I think it is unlikely.
I have to start to get my lists made...I hate the city and I hardly have any desire to have to go out and find something once I am there.
did I mention I HATE the city??.....I get agitated just thinking about spending a month there and driving there.
I started laying out his clothing for the month stay. Since we're in the city I am not sure of washer/dryer availability, so it's best to be prepared not to have one, and it is not likely I will be driving back and forth from home, so I want to make sure he has enough clothes. Me too of course. I'm going to call down to U of P tomorrow and see if they have any w/d facilitates. We did have one on the Peds floor in NJ, which made things easier, but I think it is unlikely.
I have to start to get my lists made...I hate the city and I hardly have any desire to have to go out and find something once I am there.
did I mention I HATE the city??.....I get agitated just thinking about spending a month there and driving there.
Monday, July 12, 2010
Monday's update
I received the hickmann dressings from Univ. of Penn. on saturday. The lines need to be flushed every other day and the dressing changed once a week (or as needed). We've already changed it 3 times.
fussofingers can't leave it alone. Thank goodness they sent the stuff out right away. I had bought some at med supply to tide us over, but at the rate he's bothering it, I would have had to go out and get more. The biggest concern is a systemic blood infection so I am checking it with regularity. tegaderm patches are clear so you can see what's going on well enough.
Bri's a little bored, and a bit agitated over the impending hospital stay. I think we are all a bit edgy and it's not really something I can drag up any enthusiasm over. I can't even say to Brian that at least it will be the end of treatment, because there is no guarantee it will be. And he's not going to be coming home feeling particularly well either. It's just a grim and endure it.
I'm trying to get some ebay stuff up, but I am running out of time. it's either in the next day or so, or not at all, but with parking costing $10.00 for 20-30 days and having to purchase all my meals for that same period of time, we're looking at a big expense.
clone machine?...anyone got a clone machine so there can be more then one of me??
and Steph and the perils of Penelope Pitstop...eyh yeh ehy....
fussofingers can't leave it alone. Thank goodness they sent the stuff out right away. I had bought some at med supply to tide us over, but at the rate he's bothering it, I would have had to go out and get more. The biggest concern is a systemic blood infection so I am checking it with regularity. tegaderm patches are clear so you can see what's going on well enough.
Bri's a little bored, and a bit agitated over the impending hospital stay. I think we are all a bit edgy and it's not really something I can drag up any enthusiasm over. I can't even say to Brian that at least it will be the end of treatment, because there is no guarantee it will be. And he's not going to be coming home feeling particularly well either. It's just a grim and endure it.
I'm trying to get some ebay stuff up, but I am running out of time. it's either in the next day or so, or not at all, but with parking costing $10.00 for 20-30 days and having to purchase all my meals for that same period of time, we're looking at a big expense.
clone machine?...anyone got a clone machine so there can be more then one of me??
and Steph and the perils of Penelope Pitstop...eyh yeh ehy....
Friday, July 9, 2010
do you ever wonder
How much you can take before you feel desperate, panic, sad, like you can't take anymore?...I consider myself a very strong person. I laugh through things that are difficult. Yet even I can feel overwhelmed. Much to my surprise in light of the big picture, it was a relatively small thing today that gave me a huge shove towards the edge. Guess it is time to sit back and relax. So that is exactly what I am going to.
Homecare for Brian's hickmann catheter became a problem today, as in they can't get any...good thing I am comfortable with the line flushing and the bandage changing that needs to be done. Went out and bought some supplies to tide us over until the package arrives from U of P that they sent out today when they couldn't get home care arranged. TOday I will flush both his lines with saline and heparin.
Did you know that heparin is made from pig intestines and cow lungs?....I wonder if PETA people know that?...Would they allow a potentially life saving procedure and use heparin?...or would they double standard?...hum...(PETA has seriously lost any credibility for me a long time ago) the mind wanders ...in overload....
Brian is still sleeping but looked fine and made appropriate aggravated grunt noises when I checked on him. I am not getting him up, I can use the peace and quiet.
Homecare for Brian's hickmann catheter became a problem today, as in they can't get any...good thing I am comfortable with the line flushing and the bandage changing that needs to be done. Went out and bought some supplies to tide us over until the package arrives from U of P that they sent out today when they couldn't get home care arranged. TOday I will flush both his lines with saline and heparin.
Did you know that heparin is made from pig intestines and cow lungs?....I wonder if PETA people know that?...Would they allow a potentially life saving procedure and use heparin?...or would they double standard?...hum...(PETA has seriously lost any credibility for me a long time ago) the mind wanders ...in overload....
Brian is still sleeping but looked fine and made appropriate aggravated grunt noises when I checked on him. I am not getting him up, I can use the peace and quiet.
Thursday, July 8, 2010
Thursday's update
Well, the great news is that Brian was super stem cell boy yesterday and the hospital called us around 5:30 to tell us that Brian self donated about 3 times the amount of stem cells he needed in the first apheresis and we were free to go home until admission on 7/21.
WOOHOO!!!!
so we packed up and headed home. He's pretty tired today and drinking a ton of fluids and he's very happy to be home.
He is not very happy about the hickmann catheter and the limitations and uncomfortableness it creates.
WOOHOO!!!!
so we packed up and headed home. He's pretty tired today and drinking a ton of fluids and he's very happy to be home.
He is not very happy about the hickmann catheter and the limitations and uncomfortableness it creates.
Wednesday, July 7, 2010
wednesday update
We arrived yesterday at the hospital around 8am. The traffic was not too bad until we got to Girard ave, but we were only about 5 miles from the hospital at that point.
It was a long day, with a lot of sitting and waiting, but the cd34 was good and Brian started stem cell collection today after surgery this morning to put in his catheter.
The host family we are staying with are located about 10 miles from the hospital so the trip back and forth is quick. But it is terribly hot here and it is exhausting to Brian and tiring to me with out any help to get him and his stuff around. Even the cafeteria is a hike to get food and drink back to Brian. They want him to eat and drink quite a bit during collection to help keep his calcium, potassium and energy up.
The host family is very nice and kind and has certainly gone out of their way to make our stay pleasant and not weird, but it is anyhow. It's hard for me to only have been away from home for 1 day so far and not wonder how I am going to manage 20-30 days.
I really can't wait to go home. Brian is extra cranky today as well. I am not sure if it is the drugs from this am procedure, lack of sleep or just simple exhaustion of everything going on. Maybe a combination of all of it.
I really miss having Scott here to help and lend that extra pair of hands.
I need to locate a grocery store in the area to get some milk and fruit and other calcium rich things for Brian to eat.
We will know late today how many cells they collected today and hopefully it will be a good amount. They don't collect over the weekend and we'd have to go home for the weekend, then come back and try and get arrangements made again for us to stay. Everything is so complicated.
It was a long day, with a lot of sitting and waiting, but the cd34 was good and Brian started stem cell collection today after surgery this morning to put in his catheter.
The host family we are staying with are located about 10 miles from the hospital so the trip back and forth is quick. But it is terribly hot here and it is exhausting to Brian and tiring to me with out any help to get him and his stuff around. Even the cafeteria is a hike to get food and drink back to Brian. They want him to eat and drink quite a bit during collection to help keep his calcium, potassium and energy up.
The host family is very nice and kind and has certainly gone out of their way to make our stay pleasant and not weird, but it is anyhow. It's hard for me to only have been away from home for 1 day so far and not wonder how I am going to manage 20-30 days.
I really can't wait to go home. Brian is extra cranky today as well. I am not sure if it is the drugs from this am procedure, lack of sleep or just simple exhaustion of everything going on. Maybe a combination of all of it.
I really miss having Scott here to help and lend that extra pair of hands.
I need to locate a grocery store in the area to get some milk and fruit and other calcium rich things for Brian to eat.
We will know late today how many cells they collected today and hopefully it will be a good amount. They don't collect over the weekend and we'd have to go home for the weekend, then come back and try and get arrangements made again for us to stay. Everything is so complicated.
Monday, July 5, 2010
the rest of the week
We're off very early tomorrow am. I will send short updates from my phone, but that will be the only expected ability to do updates and that will depend on reception of course.
I can get email on my phone as well, but again that will depend on reception which will be spotty in the hospital and I don't know how it will be when we're not in the hospital.
I'll do a detailed update when we return.
I can get email on my phone as well, but again that will depend on reception which will be spotty in the hospital and I don't know how it will be when we're not in the hospital.
I'll do a detailed update when we return.
Monday's update
Brian had another good nosebleed last night. I suspect the first order of business tomorrow is going to be a platelet transfusion.
Brian is scheduled to be at the hospital tomorrow am for 8:30, so we'll be leaving here around 5:30am. Scott isn't able to take time off, so it will just be Brian and I.
Wednesday Brian is scheduled for the hickman catheter placement then he will go to start cell collection following that.
They will continue the harvest procedure until they have have 2 million stem cells/kg of body weight. (let's see each Kg is 2.2 lbs..Brian weights...holy crap that's a lot of cells).
We hope it will be finished quickly as we will have to be near the hospital (day procedures) until it is. But it will take the time it will take. Hopefully we will be done and can head home at the end of the week.
I am packing up the things we will need and will pack the car later. There will only be time for caffeine before we hit the road tomorrow early am.
Steph will have pet duty.
wish I could say I was looking forward to this trip....
Brian is scheduled to be at the hospital tomorrow am for 8:30, so we'll be leaving here around 5:30am. Scott isn't able to take time off, so it will just be Brian and I.
Wednesday Brian is scheduled for the hickman catheter placement then he will go to start cell collection following that.
They will continue the harvest procedure until they have have 2 million stem cells/kg of body weight. (let's see each Kg is 2.2 lbs..Brian weights...holy crap that's a lot of cells).
We hope it will be finished quickly as we will have to be near the hospital (day procedures) until it is. But it will take the time it will take. Hopefully we will be done and can head home at the end of the week.
I am packing up the things we will need and will pack the car later. There will only be time for caffeine before we hit the road tomorrow early am.
Steph will have pet duty.
wish I could say I was looking forward to this trip....
Sunday, July 4, 2010
Happy 4th of July
May your day be filled with grilled hamburgers, corn on the cob, potato salad and watermelon.
Saturday, July 3, 2010
Brian's update
oh yeah, for those of you who tune in to get the Brian updates rather then my bitching....he had a massive nosebleed which indicates his platelets have dropped further, still has fungus mouth, but is fever free and feeling tired but good.
you can't make this shit up
Many years ago now, we went to a family psychologist. I dislike most psychologists, but I actually really liked this woman. I suspect under different circumstances, we could have been good friends. But I digress.
Our main reason for the visits were to address some issues Brian was having in school, as some of you might know, Brian has aspergers. It is a form of autism and the school system though it had a decent special education program, they were ill equipt to deal with a high functioning but learning different child. As Brian was. (and yes, he has made amazing progress but it has taken enormous effort and sacrifice for him to be "normal").
After we had achieved our goal with Brian from the counseling, I saw the psychologist a few more times to discuss changing my role in the family dynamics. Ultimately it was not achievable, but I felt the need to explore it to reduce my stress.
While there, she and I discussed pivotal moments in my life. Good and bad. We naturally focused on the bad..it WAS a psych visit after all... Sometimes the things that seem to happen read like a comedy of errors...spinning rapidly out of control.
Some have suggested over the years that I invite, or make some of my own problems. And certainly to an extent that can be true. I did rescue cats...I did take in pets that no one else wanted or were abandoned and left to die. I didn't have to take on the extra work, expense and to some extent the ultimate heart ache of the FIP outbreak. I have also made some uninformed choices...but what happened this weekend...well..you judge for yourself. And I am neither drowning my sorrows, nor wringing my hands...I am just sickly, manically, insanely laughing....and my insanity doesn't bother me a bit.....
about three weeks ago the saturn blew the engine and we needed a new car. We had no money for such a purchase and certainly can't even consider a car loan. We took what we had and bought an older used vehicle. Now while it is older then the saturn, it did have less mileage. Usually it is prudent to check things out, drive it locally etc...but we didn't have that option. Scott needed to get to work. He works a solid hour from the house.
At that same time, our neighbors who's home next door is a vacation home for them, asked Scott to supervise a delivery of bathroom remodeling items since they would not be there. It's the neighborly thing to do and anyone who knows Scott, knows he's the first to offer to help someone. They gave him the garage door remote....I told him to make sure he put it some place safe. Scott lost it naturally...of course he did. He frequently loses keys, shoes, wallet..phone..simply because his brain tells him some obscure place is "safe".
Today the "new" old car broke down...not sure where...exactly...have no idea what is wrong with it, have no money to fix it, BUT we did find the garage door opener...in the glove box of Stephanie's car (???)
I have to leave tuesday morning with Brian to go to Philadelphia. Those arrangements are not finalized or confirmed...but like Brian said...we can take pillows, blankets and the car is big enough to camp out in it...I am too worn out to fret.
TO top it all off, it took 3 separate trips to the hospital for them to get Brian's neupogen. First time, they filled 10 days not 12 and because of the medicaid couldn't give us the additional 2 days unless we paid out of pocket (neupogen is crazy expensive)so we tried to get it thursday when we were there for the NADIR visit..no..the medicaid computer was down and it couldn't be processed....went yesterday..and well they only had 6 out of 9 syringes we needed....had to go again today to finally get the balance...each drive 65 miles one way from the house....more time, more gas...more money...and you wonder why we never have 2 cents...it ISNT all eaten by the cats....
this evening I truly felt like just giving up at least for 30 seconds. I was so worn out, but poor Scott...it was his birthday...and he barely got sleep to go back to work.No dinner, no cake, no time for anything.
these are not the days that try men's souls...these are the days you say FUCK IT and are grateful you can laugh at things that would bring others to their knees.
Our main reason for the visits were to address some issues Brian was having in school, as some of you might know, Brian has aspergers. It is a form of autism and the school system though it had a decent special education program, they were ill equipt to deal with a high functioning but learning different child. As Brian was. (and yes, he has made amazing progress but it has taken enormous effort and sacrifice for him to be "normal").
After we had achieved our goal with Brian from the counseling, I saw the psychologist a few more times to discuss changing my role in the family dynamics. Ultimately it was not achievable, but I felt the need to explore it to reduce my stress.
While there, she and I discussed pivotal moments in my life. Good and bad. We naturally focused on the bad..it WAS a psych visit after all...
Some have suggested over the years that I invite, or make some of my own problems. And certainly to an extent that can be true. I did rescue cats...I did take in pets that no one else wanted or were abandoned and left to die. I didn't have to take on the extra work, expense and to some extent the ultimate heart ache of the FIP outbreak. I have also made some uninformed choices...but what happened this weekend...well..you judge for yourself. And I am neither drowning my sorrows, nor wringing my hands...I am just sickly, manically, insanely laughing....and my insanity doesn't bother me a bit.....
about three weeks ago the saturn blew the engine and we needed a new car. We had no money for such a purchase and certainly can't even consider a car loan. We took what we had and bought an older used vehicle. Now while it is older then the saturn, it did have less mileage. Usually it is prudent to check things out, drive it locally etc...but we didn't have that option. Scott needed to get to work. He works a solid hour from the house.
At that same time, our neighbors who's home next door is a vacation home for them, asked Scott to supervise a delivery of bathroom remodeling items since they would not be there. It's the neighborly thing to do and anyone who knows Scott, knows he's the first to offer to help someone. They gave him the garage door remote....I told him to make sure he put it some place safe. Scott lost it naturally...of course he did. He frequently loses keys, shoes, wallet..phone..simply because his brain tells him some obscure place is "safe".
Today the "new" old car broke down...not sure where...exactly...have no idea what is wrong with it, have no money to fix it, BUT we did find the garage door opener...in the glove box of Stephanie's car (???)
I have to leave tuesday morning with Brian to go to Philadelphia. Those arrangements are not finalized or confirmed...but like Brian said...we can take pillows, blankets and the car is big enough to camp out in it...I am too worn out to fret.
TO top it all off, it took 3 separate trips to the hospital for them to get Brian's neupogen. First time, they filled 10 days not 12 and because of the medicaid couldn't give us the additional 2 days unless we paid out of pocket (neupogen is crazy expensive)so we tried to get it thursday when we were there for the NADIR visit..no..the medicaid computer was down and it couldn't be processed....went yesterday..and well they only had 6 out of 9 syringes we needed....had to go again today to finally get the balance...each drive 65 miles one way from the house....more time, more gas...more money...and you wonder why we never have 2 cents...it ISNT all eaten by the cats....
this evening I truly felt like just giving up at least for 30 seconds. I was so worn out, but poor Scott...it was his birthday...and he barely got sleep to go back to work.No dinner, no cake, no time for anything.
these are not the days that try men's souls...these are the days you say FUCK IT and are grateful you can laugh at things that would bring others to their knees.
Friday, July 2, 2010
Friday Update
Yesterday Brian had his NADIR visit. His blood counts are very low...even lower then i expected based on how he feels.
His mainly resting which is an excellent idea, since we really don't want him to have to be admitted to the hospital over the weekend. He's also staying away from going out and being around people. Hopefully we can get through the weekend without any fever or petechiae.
Tuesday we are due in Philadelphia for the beginning of a long week. There are so many things to do before Brian and I leave. I had also hoped to get some ebay auctions run because the expenses this month are INSANE. But it looks like I am just going to run out of time. But we'll have to see. Sad fact is I am probably going to see if I can sell some gold jewelry to help offset the expenses. There really isn't much of any other options. "cash for gold"...let's hope it will cover all the gas, meals, parking...tolls...it's really a bit overwhelming and quite depressing. At least the medication copays are manageable now that Brian's medical assistance has kicked in.
His mainly resting which is an excellent idea, since we really don't want him to have to be admitted to the hospital over the weekend. He's also staying away from going out and being around people. Hopefully we can get through the weekend without any fever or petechiae.
Tuesday we are due in Philadelphia for the beginning of a long week. There are so many things to do before Brian and I leave. I had also hoped to get some ebay auctions run because the expenses this month are INSANE. But it looks like I am just going to run out of time. But we'll have to see. Sad fact is I am probably going to see if I can sell some gold jewelry to help offset the expenses. There really isn't much of any other options. "cash for gold"...let's hope it will cover all the gas, meals, parking...tolls...it's really a bit overwhelming and quite depressing. At least the medication copays are manageable now that Brian's medical assistance has kicked in.
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