thursday update

Brian's had a pretty good week, but he's had some headaches.

I had a brief conversation with someone today who seemed very surprised that a well known cancer group didn't help with Brian's expenses. I was sadly amused, as I ran into this when Brian was sick before as well. For some reason, there are a lot of people out there who think that the well known groups such as the american cancer society and the lymphoma and leukemia foundation actually assist patients with many expenses. This is simply not the case. We have received a total of $150.00 in aid from the L&L and nothing from ACS. Trust me, it is not because of our tax bracket...these groups simply do not help financially...they help with literature..and sometimes counseling and support groups.
What they do with all their donations, I can only guess.,but it sure doesn't go to patients...I know they claim a lot goes to research.

when Brian was sick as a child, we got a small amount reimbursed from L&L (less then the $150.00) and no other assistance from any other cancer group. When Brian completed his treatment, we did get a vacation courtesy of the Make a Wish foundation. They were a group that helped as they claim to.

what a day

today was not a very good day. Scott has not been dealing very well with the stress of everything and today he almost lost his job...wouldn't that have fucked the pooch....while I understand being overwhelmed, I am unsympathetic to his specific issue at work. He did it to himself. and he's been lying to me about getting to work on time. (that is what the issue is).
to make things worse, Brian feels like it is his fault that Scott is stressed out. When the fault entirely lies with Scott, he needs to actually deal with his problems and feelings.
He has 3 months to prove he can get to work on time otherwise, his job and everything it supports, will be gone.
For the first time in a very long time, I feel concerned for us as a big picture....I resent the additional stress this places on us and how it makes both Brian and Stephanie feel. I think he needs to go to the doctor and get some happy pills ASAP.

weekend update

Brian is back on vitamins, he's happy about that...he's also started some of the supplements to help with the chemo brain, we're starting to see those effects again, but last time it was several years into it before we knew about the helpful supplements. Some are expensive, but I got him some to tide him over until I get to costco, they are less expensive in larger quantities there. I wouldn't get them if we hadn't seen the helpful effects last time and now even the dr.s know to suggest them...

Brian had some decent energy yesterday, and was very helpful with chores, but when he got tired, he got very cranky, so I will have to remind him not to burn it all off....we do not want him cranky.

thursday oncology visit

It's late and I'm tired, a long day of driving, almost 7 hours in the car, due to traffic and road construction and just the distance....

The visit went well and Brian's labs were good, his white count is a little low again, but nothing too concerning. His platelets dropped a little too, but are still within normal range.

I was concerned when Brian wanted to discuss what treatment options he might have if the PET scans shows lymphoma still...he has not mentioned anything that indicated he feels like the cancer is still in his body, and he is very attuned to his body. Not sure where that is heading....
In any event, the PET scan needs to be scheduled for 4 weeks from now and we will be returning to U of P Oct. 28 for a visit and to discuss the results of that testing.
Brian gets a lab reprieve, they are going to let him go all month without having to have labs done. Thank goodness...his veins are shot and he can use the break.

The brakes on my car went on the way home, we were almost home, we stopped to get some brake fluid, but it didn't help....guess that will be tomorrow's fire to put out. Scott can't catch a break and he's not wearing it well any longer...stress is a bitch master for sure.

Stephanie went hiking on the Appalachia trail today with her new beau..boy is she sore tonight and I'm pretty sure if I looked in her room, I'd find her face down still in her clothes out cold....but she had a great time and said it was beautiful. She needs better footwear though...she turned her ankle and after 2 breaks, I don't want ankle troubles again.

so the doctors are Uof P are very pleased with Brian's recovery so far, and in 5 weeks, we'll know if the cancer is in remission...so all good.

Monday update

Brian's 60 day post stem cell transplant is thursday in Philadelphia. He appears to me to be doing well, but without any pet scan so far, it's hard not to wonder what's going on in his body.

We've all decided as a family to rebuilt the transmission on Steph's car...we've never done it before ,but we can't find a used one from a junkyard and we can't afford to have it done....it will be like game night..only longer...and greaser...and more complicated....Scott didn't want to do it, but we all voted and he got outvoted 3 to one...

I had dinner last week with Stephanie's new paramour....he is nice and has a good sense of humor. It was a nice evening out with Steph...and I didn't embarrass her at all....

saturday update

Brian is excited about the cool weather, the possibility of having enough energy to help decorate for halloween and my promise to get the tank filled so we can grill some dinner.

it looks like it will be a nice weekend here and I am going to just focus on things I can control and not fret about the things I can't....for a day or so...

thursday update

today we all went for a drive to Scranton area.
It was just a short trip of a couple of hours, but we got out, got some fresh air and saw something new for a little bit.
it improved all of our dispositions.

wednesday update

I need a vacation. Even a short one. (hum ...guess it will have to be a pretend vacation...)I have worn myself out and lost perspective. It's a slippery slope that many a caregiver has slid upon.

I am even feeling the angst of anger...towards people...towards circumstances..towards life..it's not good.

I came out of Brian's first bout of cancer angry...seethingly so and it was bad, and compounded by the incessant hounding of insomnia and unpaid everything, I swore the purpose of this blog this time was to help eliminate some of those issues, by both allowing me to complain so I could function in the real world and to allow people a glimpse into our lives so they could see and help where they could. So they would understand how difficult this really is.

I'm not sure I have achieved what I wanted to here. Not if I find myself exactly where I didn't want to be.

something to ponder and reflect upon.

don't be surprised if there are not any more blog updates for the rest of the week. I have things to think about. And not much more to say here right now.

Monday update

Today we had a serious lightning storm, and a strike hit the dog pen in the back....very loud.

Brian and Scott were in the living room and they said it made them jump. I am sure it did.

Brian looks like a little grey chia pet today...lots of little grey hairs sprouting all over his face, and in a few odd patches on his head.

Stephanie went out with a friend and was able to get an enjoyable day off, that was good.
Brian spent some time checking out the language programs my friend Elizabeth sent him. I am thinking that there is little excuse if we don't all learn a bit through them. They are way different then the language programs I studied in school.

Special thanks to Elizabeth for the language programs. Elizabeth has been very helpful through all this.

Sunday Update

today sucked..Scott and I had a fight over money..or the total lack of it...and the piles of things that need to get paid...
it actually spilled out into the front yard...how white trash of us...
now ask me if I care..nope I don't give a fuck...these problems are hard to solve and we don't really have a lot of people standing in line to help.
I am tired, cranky, bitchy and generally worn out.

Brian is also tired, but he's getting a little hair back, in patches on his head and his face..it's grey and looks funny, but we've seen it like that before.

my blood sugar is not where it should be, my stress level is not where it should be and things are very difficult right now...people want what they want when they want it and they really don't give a shit if you bought medication for your son with the money instead of sending it to them.

on the upside, Stephanie is happy in her new job.

oh and my fibromyalgia is flaring and EVERYTHING HURTS...my hands, my hips..the iliac sacral joint...hey no knee pain..just every other joint and tendon in my body...and I never did get a new DR. up here so I would have to schlep almost 2 hours to my doctor to something to deal with this. Really need to get a local doctor....

I am SO cranky and the xanax is NOT helping.....

Thursday update

Brian's pretty tired today, and also again really hungry. Otherwise, not a lot of change.
Here's something of interest I came across the other day....

On one hand I feel like it is great idea...on the other, it smacks of "1984"....and heaven knows our government has already crossed too many of those lines...

Tuesday update

Brian is exhausted today. SO he's been sleeping most of the day. I roasted a turkey break for him to eat, but I think tomorrow I will get some iron rich foods into him.

Stephanie has a new recipe for kale which is high in iron and vitamins, so we might try that. He also has to go for lab work.

Not much else to report...it's the sitting and waiting period...

Monday's update

Brian managed about 10 minutes of physical labor (ie CHORES) today before he was completely exhausted. But that was10 more minutes then last week, so it's all good.

Stephanie has worked 9 straight days now at her new job....and won't be off until next sunday, at which point, I am fairly sure she's going to sleep until she has to go back to work. But she likes the new job, and they seem to like her, which because of her work ethic, it would be hard not to like her.

some of the swelling in my ankle went down and interestingly enough the pain has increased. I am considering getting an xray, but well see how it feels in the next couple of days.

It was a gorgeous day here...

saturday update

I slipped in the woods a few days ago and last night my ankle decided to seriously swell up. It hurts, but it looks a lot worse then it feels...

interesting....

Brian is restless and not sleeping well. He's also a little irritable...I don't know if he is not feeling well or bored.

His side hurts and that has him a bit concerned, but I am hoping it is more from hours at the computer then anything else..
He's also starting to have some noticeable short term memory problems and it has him very aggitated about that.

cool here today....
nice to open all up....but could almost have a fire in th fireplace to warm things up

Thursday update

Brian has a good day today. A little better energy level, he did have a little low grade temp last night, but it didn't amount to much, and it got hot here again, so maybe just environment related.

He's super hungry today....if it isn't nailed down, I am pretty sure it's gone into the maw of all consumption....no doubt all that cell production/repair needs energy....

he's drinking a gallon of milk a day...anyone got a cow?...MOOOOOO


imikimi - sharing creativity

today's theme...

sometimes I just want to cry

Brian's ssi payment is wrong again this month...that would be the third month in a row he has received $30.00 instead of $440.00. I was assured it had been corrected ,but sadly no, it hasn't...and heaven knows we need the money to offset the expenses.

It really is unfair that there is so much to constantly deal with. and I know we'll never get that $1200.00 back paid...
Scott has no more days off this year and Stephanie got a new job, so it's all back on my head...and I'll be honest..I am worn out.

Hell, if we got the money he's entitled to, we could even get a day or two away at the beach. Wouldn't that be nice...or even to have one bill collector not ringing the phone all the time.

Got to love living like this...again...

STILL got to put a transmission in Steph's car so she can drive it to work...

thanks to our neighbor Jim who is on the prowl for firewood for us. I appreciate him looking out for us.