post christmas update

Christmas fell flat,it was my fault, I have had a virus all week and just didn't feel up to it.
Brian was really cool about it, he always worries about me when I am not 100%. He and Scott had a little together time and watched some tv, that was good.
Brian then of course decided to share in my virus...but we're both feeling better tonight. But he's pretty tired.
Scott and I were married 26 years ago today...what a long year this last one has been. Stephanie gave us a $20.00 card to olive garden, but with my stomach just on the mend, I do not think eating out is a good idea at all...and Scott has to work anyhow.
if I feel up to it, Brian wants to set up a work table to learn to solder....he is showing quite the interest in my tools...DAMN IT.... :)

Happy Holidays

Brian and I stayed up and enjoyed the eclipse on tuesday morning, (early) it was wicked cold, but the eclipse was well worth it.

Brian has been kind of down in the dumps, but he's starting to feel better, and back to researching solar panels...he really wants to build some. Health wise he is doing well...but he gets very tired after about 5 hours of a normal day and it frustrates him even though the doctors say he is doing really great for where he is at.

Today Stephanie and I baked cookies and we all worked on our regular chores...but we got a late start at it, so we're watching the grinch and cleaning the carpet at the same time..

Even though we couldn't get a tree, I did manage some lights in the living room in an attempt to be festive.
I would have loved a completely low key dinner for xmas, but apparently Stephanie comes with a Tim now to all events...but it's okay.

As you all know Scott and I will be married 26 years next week...it will be another low key celebration, but we're slowing getting our groove back. We just need a crisis free couple of months I think.

time to go, Stephanie just came in with her hands and arms all hived up...did I just mention some crisis free time?....
thank goodness for benadryl....

a christmas gesture

We're pretty worn out from everything. It's kind of hard to get into the holiday spirit as well...and we don't really have any extra money to spend, I cant really justify the expense of a Christmas tree this year.
But as that might be the case, I do have some dolls from my collection that in the current market are not sale able on ebay, so I have decided that if we can't really have a Christmas, we can bring on to someone else who can't either. Christmas is the one time where I do try and do something nice for people rather then my more favorite volunteer work of animals. So I am working on finding a local girl (or boy) who wouldn't have Christmas otherwise. If I can't find someone local, (I expect I can) then I will go down to the pediatric ward at Lehigh Valley Hosp. and bring some thing there...(we've done the hospital thing many times since Brian's first admission to Robert wood in 2000)
This is the first year in while there is no shopping, very little decorating in a lot of years, but hopefully this time next year things will be better. It's just stuff anyhow...

Brian is pretty tired this week, but we went to breakfast this morning where Stephanie works, they have a little family breakfast at the holidays, and it was nice to get to meet all these people I have heard so much about, as well as see some of her coworkers we've already met. We had a good time.
I am sending out cards this xmas, but I'll be in touch with all of you who have sent them shortly. Thanks for the well wishes and updated kids pix...

Stop suffering. Make our community No Kill with funding for vet care. | Pepsi Refresh Everything

Stop suffering. Make our community No Kill with funding for vet care. | Pepsi Refresh Everything


This is a great group that helps lots of local pets and owners alike, please take a few minutes and vote for them so they can win money to keep doing the good things that they do. As you all know our animals are very important to Brian.

weekend update

In a few short weeks, it will be a year since the nightmare began again. What a year it has been.
We have dealt with what seems to be an unending barrage of misfortune. We have not come out the other side unscathed either. This year has taken some terrible tolls on our relationships with one another and others.
There have been life altering events again....my biggest mistake was in thinking that because we'd been through this before, it would somehow be easier...we'd be prepared, able to anticipate pitfalls..etc...
no, that simply has not been the case.
At the end of all this, we can say that the fantastic part is that Brian's cancer is once again in remission...but our life?...it's looking a little post apocalyptic. It's also hard to figure out where to start the clean up when the little personal bombs are still dropping.
The stress toll has been horrific. The damage done can't be counted and evaluated for many months.
We need the fallout to stop, but it's going to be a slow recovery...there are a lot of pieces to pick up. I don't have the patience for that kind of thing, so that will be a challenge for me.
We have had a lot of surprises along the way this year, some good, some not so good. my biggest disappointment in people I expected that Brian could count on for support, and a few I expected to be able to count on as well. But we also made some new friends and there are those one or two who never let me down. Without them, this would have been even harder.
It is far from over, in fact now more then ever, we have to embrace this as our life's journey. To be ever vigilant and prepared for Brian's cancer to invade once again, but for now we rest up, regroup, refocus and recover. We move to the mop up phase for now.
Brian's port a cath removal had to be rescheduled, I'll post a date when I have one.

friday update

Brian is still at my sister's having a nice week long visit. I can only hope after all the socializing he is doing while there, he is having a good time. I know he's tired, I can hear it in his voice when he calls.

Scott is back to work..again...but he really needs a new job. At least his is taking his medication regularly and has accepted at least this week he suffers form a disease that requires daily meds.

I am plain worn out. But no rest for the wicked.

Stephanie has left me a bit disappointed in her recent choices, but we've raised her to be a good person with good values so I can only home she starts using some more common sense and courtesy soon and stops thinking with her hormones. Guess it is teenage rebellion come late...(BIG FUCKING SIGH)

post thanksgiving update

I haven't really had much to talk about ...Scott has another issue with work and has been on unpaid vacation since last tuesday. He has a meeting at work tomorrow to know if we are in serious deep dodo...I am not sure what to think, I'm kind of numb, but at least he;s now taking his medication regularly. I just hope it isn't too late.

My sister came for thanksgiving and Brian went back to her house for a week for a change of scenery and it's really good for him. He doesn't need to feel like our current problems are because of him and his cancer and naturally he does. SO a week away seeing new things and visiting new places is a really good thing for him.

In the meantime, I am just coping the best I can and getting things done.

todays update

The news today was good. The chemo and subsequent stem cell transplant did achieve remission for Brian's cancer. The PET scan results were what we had hoped for, and his blood labs were also very good.

I suggest that you take the news with guarded optimism as we are. After getting caught blind sided by Brian's cancer returning after such a long remission period and many reassurances that his type of cancer rarely comes back after such a long remission, I am guarded against such a mistake again.

There is a 60% probability that his cancer will not return. But those were about the same odds last time. And it did return.
With that in mind, he will have much closer follow up then he did before, on the advise of his transplant oncologist, he will have labs every 3 months and PET scan's every six months. We will be returning to Lehigh Valley Hosp. on 11/22 to start his follow up care with his oncologist there.

He has some significant neuropathy from the treatment and that is unlikely to get better. He also has some short term memory issues (yeah for chemobrain) but we've already started many of things we found by trial and error in the past to work. (diet supplements, whole unprocessed foods, and typical memory games as well as the much hated note pads) and he is suffering from some depression, he is on a medication that deals well with both the neuropathy and the depression for now.

On a more positive note, the skin fungus that has plagued him for 8 years from the previous chemo treatments has completely resolved. This is the first time in all that time he doesn't need creams and special shampoos. Brian is thrilled with that. This will be a significant improvement in his way of life. THat rash drove him nuts sometimes.

So the news is good, but to think he is cured would be foolish. It is time now to start putting that somewhat battle-worn shreds of normalcy back together and more forwards with positive and cautiously optimistic outlook.

The short term goal is for Brian to learn to drive and enroll (funds permitting) in one class of his choice at the local community college. We'll take the baby steps from there.

I...well I'd like a nice long vacation to a pearly white beach with beautiful water where I can swim and relax...but as we all know...it will be a long winter of trying to get everyone back to some less then questionable mental health and dealing with the inevitable fallout that comes from a crisis like this.

Thank you all for your thoughts and prayers and everything else during the last 10 months.
I'll post his pet scan results on the blog tomorrow when I am not so tired from such a long day in the car.

weekend update

Brian is still suffering from depression and some serious neuropathy.

He had the PET scan done, results will follow Visit to Uof P next week.

Pa. accuses debt company of deceiving consumers Main Headline | PoconoRecord.com

oops..my bad, this belongs on my Lucy blog.....


Pa. accuses debt company of deceiving consumers Main Headline | PoconoRecord.com

everyone knows debt collection agencies use illegal tactics....phone calls after hours, to neighbors and relatives, threats, flat out lies and misconceptions, but THIS ....really is over the top...

the hospital bill arrives

Well, todays mail brought the invoice from the Univ. of Penn hospital for Brian's treatment...although most of it is covered by Medicaid, not all of it is...the bill's total amount (in case you wondered what it cost for the stem cell procedure) is $163,149.00.

thank goodness he has the medicaid...

thursday update

Brian had a great day today. He had some good energy and spent several hours just chatting with me and playing with the dogs.
We sat outside for a while, it was a lovely day here and all the leaves in the back are bright orange. You'll see the calender has been updated, the pet scan is scheduled for next week, the Univ. Of Penn the week after and towards the end of the month, we'll start up our visits to the oncologist at Lehigh again if the pet scan is negative and shows the cancer in remission.
In the meantime, I am goign to get some auctions going on ebay to help offset the setback we've had from Scott missing so much work.
I feel like we're kind of at a fork in the road where things could really turn around for the better for us, we just really can't take anymore setbacks. We're all emotionally spent.

Wednesday update

Brian is having some trouble with his short term memory and he is very frustrated by it. We are going to try some suppliments and some activites (that he hates) in hopes of helping.

Scott got his surgery and it went went well. How much of a blind spot in his eye he will have, we'll know in a few weeks, but already his headaches are better.
However, Brian just is making me laugh like crazy, he's totally fixated on getting the eye patch Scott is wearing right now, you'd think it was some fancy toy and not a $3.00 eye covering. ....

Stephanie is spending lots of time at the new job and with the new boyfriend, it's really good to see her get out and have fun. She deserves it. In am amusing turn of events however, I AM bugging her to get her chores taken care of again. But it's all good.

Scott had his meeting at work and is back to work.

weekend update

There isn't much to say at this point, things here continue to be complicated. Scott had to take a night off from work for his eye, and in fact is having surgery on his eye on monday, and he was suspended again from work for taking off too many days. Many of which were taken off to be with Brian and were okayed at the time...this complicates things in our lives greatly, he has a meeting at work on tuesday, so we've lost more then a week's pay, which is very hard since we're already behind in so many things.

He is having laser surgery on his eye to try and minimize the damage. but he's still going to lose some sight in his eye.

Brian is good, but continues to have issues, I was unable to get the PET scan scheduled yet, so his visit to Phila will have to be postponed, and I hope to get the testing scheduled soon, not quite sure what the problem there is...I;ve certianly spent enough time on the phone trying to get this done so far...

I am pretty depressed and worn out at this point.

trip to the eye doctor

Making the appointment for Scott at the eye doctor, reminded me that Brian was due for his recheck from the problems caused by the chemotherapy.

SO today I took Brian to the eye doctor (and went myself as well since it's been almost 3 years since my last trip and I know my Rx has changed)

So Brian's prescription changed quite a bit, and while the medicare covered his office exam, of course they didn't cover the glasses...so he got new glasses. Mine will have to wait a while., his is more important anyhow.

So scott has something called csr It's basically a blister on the retina. He has to have an angiogram of his eye tomorrow and probably get scheduled for laser surgery after that. He will have altered fuzzy vision though in that eye and while the surgery might help it, it won't eliminate it. Since Scott has always been very proud of his eye site and can't even stand the need to wear reading glasses, I am not sure how he's going to react to this.

Brian has a small swollen lump in his neck that continues to cause him pain. I am worried about it, but we'll know shortly as it will be scanned.

tuesday update

Brian has some hair....and he even needs to shave....of course his hair is grey colored, but we've seen it come in that way before. It took about 6 months last time to return to his normal color...

Scott had an eye doctor visit today because he's having trouble seeing out of his left eye. The eye doctor is sending him to a specialist tomorrow...so not sure yet what is going on. but something is...don't know if it is from the car accident or the possible cause of it....

Brian has an eye doctor visit thursday as a follow up to the problems he had form the chemo....we know he'll need new glasses, the chemo changed his prescription.

Stephanie's kitten Cobbler died suddenly and and unexpectedly the other night. He had seemed fine and she didn't want him necropsy-ed to find out why, but she is very sad. Cobbler was very sweet and we all miss him very much.

thursday update

Brian slept all day...I stayed up extra late to see if I could get him to eat before I went to bed, but he's still not up, so I am going to try and get some rest.

We decorated some more for Halloween today, my very favorite holiday, but I am having a hard time feeling it. Stephanie already senses this because she made a comment to me about how we "would "be getting a real tree for xmas...just in case I was thinking I was not in the mood...

I am really glad she has a boyfriend she enjoys spending time with, it gets her out having fun and away from this mess, but I miss her cheery spirit around me. I forget sometimes how much she helps me cope even if she does like a little more drama then I do...

weekend update

Scott had a car accident on sunday. Ran into the back of someone on the exit ramp of 80. He's fine, the car, well it isn't pretty and I don't know how it ran on his way to work. I'm done trying to help him deal with things. He's on his own. I really have enough to worry about and I can't help really help anyhow. He doesn't like my suggestions.

My focus has to be on Brian and taking care of him. Then everything else like fixing Stephanie phone she dropped in her tea today...I don't have the time or energy to cater to someone who's making his own problems and not helping with the family.

HE better get over this soon. I am WAY short on the patience. And the anger is starting to come to a boil.

saturday

In the mail on friday I got the monthly newletter form the lymphoma/leukemia society. I have been getting these for 10 years now.
I noticed this month there is an article on NHL (non hogkins lymphoma) and it talks about how nhl should now be looked at as not curable, but as a chronic disease. I knew this, I really did, in my heart, but after the week I have had, seeing it in print really just sent me for a nosedive.

How can we possibly continue to deal with this constant drain of money and emotion and time and it is sucking what little life I have left in me, out.
I just see nothing but doom and gloom on our horizon. I feel today that if it wasn't for Brian and Stephanie and the cats, there would be no real reason to get out of bed in the morning. I am officially depressed. Really, really depressed.

while I will never understand why people abuse substances because I am a control freak, I am beginning to understand why people cut themselves and starve themselves, because those are controllable things in a world that is running headlong into disaster, and I NEVER wanted to understand these types of things.

we just do not seem to get a break and I am beat up, beat down and just so damn sad.

on top of it all, Brian is complaining of feeling a lump in his neck. I am hoping he just has a little cold and it is a normal lymph node. I can feel it too.

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.

Sunday update

Brian didn't have such a good day today.

He was tired and a more then a little concerned about how he is emotionally feeling. I know this because he came into my office when I was working on tonight's lucy blog to ask me about what the pet scan said about his brain.
Seems he is concerned with the apathy he is currently feeling.

Might be something we want to follow up on as time passes....since he has suffered tremendous side effects in the past with Chemo Brain...this is sort of how it started before....but he is more expressive now, so it's good, but bad...and certainly does little to lighten our load.

saturday update

Brian is doing well, though my fibro is really bad right now. It's hard to go up the stairs and get in and out of the car...going to be cane time again.

This is probably a side flare from stress. But I will think about a dr.s visit soon.

Brian continues to do well and looks forward to some outside activities now that his platelet count is normal. (though his energy is likely to wain quickly).

It's fall here now in the poconos and the cold evening temps remind me we didn't get wood chopped for winter....damn....anyone have a cord sitting around all ready to go..

there are never enough hours in a day....

Thursday's update

Sorry for those of you waiting to hear how Brian's visit went. My drive to Philadelphia seriously aggravated my already flaring Fibromyalgia and I have been too tired and in too much pain to blog.

Brian's counts are terrific and his doctor is thrilled with his progress. He is off the antifungal and antiviral and is just on oral antibiotics m/w/f to prevent pneumonia. He only has to have labs done once week and we'll go back to Philadelphia in a month. He'll have the PET scans redone around day 100...so it's just sit and wait until then.
He's tired but good.

Stephanie got her job from Tueday's interview...she starts tomorrow...

Monday update

Brian is having a great day. He cooked himself some food...all protein, drank a 1/2 gallon of milk, ate an entire package of bacon, and I didn't even count how many eggs...loaded the dishwasher...rambled excitedly about a computer thing he's doing, watched the big "c" on HBO (which he though was very funny and didn't feel uncomfortable with at all?) played with the dogs for a few minutes then went upstairs to rest.
I am quite please...

Stephanie has another job interview tomorrow...she went to one on saturday too.

It's raining day3?...I think...good soaking rain, but that's enough now...

Wednesday is out trip to Philly. Brian's appointment is at 10am so we'll leave around 7am.

saturday update

Brian had a good day today. He's still frustrated by his energy level, but he simply isn't considering the facts that he's only been out of the hospital for a week.

He's a little bored I think, but a little too tired to really go and do anything yet. but all in all, I think he's doing really well.

He had a great time last night, he and Steph made the tacos and we all sat down to watch Harold and Kumar go to white castle...it was a great evening. I hope we have many more just like it.

Hey it's Friday....

Brian has been sleeping much better and really getting some much needed good rest now that he is tubeless.

He is excited because we are making taco's tonight for dinner....he loves tacos.

Stephanie and I are processing the herbs, I cut them yesterday and they are being dehydrated, powdered and containerized.

The chives are about to bloom, so I waited in clipping them. But the nights are getting cool now and I know the growing season is coming to an end and this week I have time to go the herbs.
Next Wednesday we head back to Philadelphia for the first post treatment check up. IF we start testing soon, that can be very time consuming, so go to do things while I have the time.

wednesday update

Today is Brian's last day of IV antibiotics and he is so happy. No more pole friend....tomorrow when the nurse comes to pull labs, his port can be deaccessed and for the first time in 7 weeks, he can sleep without tubes hanging from his chest. Tomorrow night will be a very good night indeed. I am not even going to wake him up on friday and I hope he sleeps through and gets some decent pain free, apparatus free sleep.
He is doing well, and while his energy level still annoys him being so low, I think he is pinker and has more energy even if he doesn't notice yet.

it's all good.

Monday's update

long day....the home nurse had problems getting blood from Brian's port, so he had to take it peripherally which is an issue because his veins are worn out and hard to get, but I did get blood return later tonight when I flushed his line and hung his iv ...so maybe it was a little fibrin sheath forming that was dislodged with the heparin flushing. hope so.

I was tired and took a nap and am totally off schedule now, which is a pain to correct.

Antibiotic iv will be done on thursday and he's looking a little more pink today so it's good.

just trying to get a lot of rest and heal up.

Sunday update

It's raining here, but based on how dry things were when I got home this week, it is welcome. We need a good soaking and we are getting that steady moderate rain that will provide that.

my herbs grew a great deal while I was gone and all will need a good clipping back when the rain stops.

Brian is very tired again today and is also tired of the iv antibiotics. I set them to run once every eight hours and they run for 2 hours each, so it's alot and I think is reminiscent of the hospital when I come in to set them up. (and wake him up)

labs get drawn again tomorrow and we'll see if he needs a transfusion Tuesday. I wouldn't be surprised. But then again, I wouldn't be surprised if he rebounded back either. He drank 2 gallons of milk in 3 days, so it looks like I'll have to head out for more of that too.

I picked up a bit of a skin infection on my face,and my arm I assume is from the hospital, and after unsuccessfully trying to treat it for a few days, I shaved off my eyebrows. And while it looks a bit peculiar, things are healing up much quicker now. Almost all gone, and I can pencil in until things grow back, though my eyebrows grow pretty quickly, so no concern on that front.

Brian hasn't been up to going for a walk yet, but hopefully when the weather is nice, he'll feel up to some time outside.

Friday Update

Brian is doing well. Lots of resting for now along with his 3 times daily antibiotic IV....

starting to go through all the mail, getting an idea of how bad things really are....

we really never discussed how bad the fallout was after Brian finished treatment last time (with others), but it was bad...looks like it is not as bad this time, but we unfortunately don't have the jobs/income we had then either, so it might be actually worse. But as to if we share that information, we haven't decided yet. But it will be requiring our full attention no doubt.

Oh, and I've started a new blog, this one will be about all sorts of things. One of the nurses at U of P commented on how interesting it always was to come into Brian's room, we were always discussion such intriguing things, so hang on for some lively posts. There is a link on the side

Wednesday update

Brian came home last night. As soon as we got home, we had to get the nursing home care in to get his iv stuff set up and unpack all his medical equipment.
my refrigerator is now full of IV bags.

Scott took a few days off from work and we're just going to try and get settled back into a routine with the medical things included.
I will probably take a few days off form blogging as well. Lots to get caught up on.

monday pm update

Rumor has it that Brian is going home tomorrow...his hickmann catheter was removed today, and we are just waiting on some lab results to determine if he's going to need iv antibiotics at home or if he can take oral ones.
He's driving me nuts, so I am going to stay at my hosts home tonight, I have stuff to pack up and it will give me a chance to say goodbye.
They are a lovely family and I feel like I have made long term new friends. Unusual for me, I know....
Brian is unhappy that everything didn't come together for him to go home today.

Treatment is ending, let the healing begin. It can take up to a year or longer for Brian's system to recover, and then we will have to consider redoing all his childhood vaccines. I guess to some extent, it means his risk for contracting things is both from his weakened immune system and his loss of vaccine immunity.
I know that good food, good rest and the love of a zillion little cat feet and dog tongues will go a long way.

Sunday Update

Brian had another good set of labs. So good in fact, we might have some most excellent news tomorrow....we'll have to see.

In the meantime, they have upped his vancomycin doses and he is feeling yucky. Too much antibiotics are giving him diarrhea and a little nausea. He's eating some yogurt to try and counter that.

saturday update

Well,
Brian's gotten a nice bounce to his blood counts and as a result, is feeling much better. I think this is likely to see the turning point we've been waiting for. It certainly has been similar in the past. I'd be very surprised now not to see his counts continue to climb rapidly and all the medical things resolving quickly.
it will be a while before his counts are normal, but let's hope they get up there enough for him to go home soon, the hospital is not the place to get the sleep and decent food that helps the mind and body heal.

Friday PM update

Brian had a good enough day. He's slept most of the day, ate a little dinner, and is resting watching TV tonight.
He's black and blue all over from the platelets being so low and having injections and poking and prodding, but it is all for good reason.
I'm hoping things go smoothly tonight with the antibiotics and tomorrow with his counts so I can leave and go do wash again. Sure do wish there was a w/d here to use, but I could use a good nights sleep in a bed as well, though I'd really like to go home to my own bed.

The source of the blood infection is Brian's hick line, which is of no surprise to me. they are problematic. I've insisted it is removed prior to discharge, as they sometimes send patients home with them. He's got a portacath if they need future access anyhow.
His counts are still so low they are giving him 4 antibiotics, antifungals, antivirals and a variety of other preventatives, so for now, we are still holding off on any visitors. He doesn't want anything delaying his escaping to go home.

Friday mid day update

Well,
today is off to a little better start after a bad night. Brian had another reaction to a new antibiotic last night that they are giving him because of the staph infection in his blood.

His counts have come up slightly, so there will be no transfusions today. But he's pumped full of benedryl and mainly sleeping today.

wound care came by to examine his ulcers and get a treatment plan going, but the real problem is that his counts are so low he just can't heal.

I am confident that once his system starts to bounce back, things will fall into place quickly.
For now he just needs to eat and rest as much as possible so his system can start to recover.

Thursday update

Today was not a good day for Brian. His counts are beyond low and he had an allergic reaction during his platelet transfusion that left him swollen, itchy and covered in hives.

His blood cultures also came back with some bacteria growth, so his antibiotic regime has been upped and more antibiotic added.
He also had to have another chest xray today to make sure he isn't developing pneumonia. I am afraid that his hopes of going home this week are dashed completely.

I did get the nutritionist to come in and while we can't get the quality of food improved upon., we did get the quantity of it increased. Sadly Brian does not appreciate the efforts on my part at least tonight. Tomorrow after he's had a little more to eat, perhaps. But he feels so poorly today that he spent the whole day just laying in bed watching tv and sleeping.

I am staying at the hospital instead of the host home until he no longer needs transfusions. With him reacting to them, he needs to be watched constantly.

wednesday pm update late update

Brian spiked a very high fever tonight up over 102...so blood cultures had to be done again and the doctor on call came in to examine him. They suspect the cause to be a combination of mucusitis and low counts, but they are concerned there might be an abscess that needs addressing. They are going to add another antibiotic in addition to the several he is already getting.

He is very uncomfortable and opted to take another pain pill which means he really is in pain, because Brian prides himself on being able to endure without assistance.
Much to my surprise he submitted to the rectal exam without much to do. Very unusual and indicative of how poorly he is feeling.

He will no doubt require transfusions again tomorrow based on the petechia that is spotting up all over his body tonight. I suspect his platelets are very low again.

wednesday pm update

Brian is in a lot of pain today from the esophageal ulcers and required some pain medication for the first time. Unfortunately pain medications make him a little irritable (or maybe just downright unpleasant) so today has been trying.
On the up side, we did get him an air mattress topper in which should help with his discomfort sleeping. Hopefully he will sleep better tonight between the pain meds and the mattress improvement.
Scott came down on his night off for a visit, but he too is tired, so basically I am stuck in a hospital room with two tired and cranky men....just how the hell do I get to be so damn lucky.

no transfusions today and the counts are up just a tiny little fraction..but it's in the right direction so I'll take it and be thrilled. The sooner the counts start to recover, the sooner we can get the flock out of here.
But THERE's TV..... :)

wednesday am update

Brian is smiling watching the history channel....it's his favorite channel and it's distracting him from what started out a very cranky morning.
To help with the lack of sleeping, they are getting him an eggcrate for his bed and I told the doctors this am that he needs more and better food, so they are sending nutrition up to see what they can do. I am hoping this is the turning point because the real healing isn't going to start until he gets home. and he can't get home until his counts go up.
They are a little higher this morning, but just a tiny bit. And he's still having fever periodically.

The TV still works and although I don't know why, or who, I am eternally grateful.

OMG the TV works

I turned the Tv on tonight because I couldn't stand it any more and I was willing to listen to Brian's ranting even over the headline new channel that was the only channel that worked besides family and the hospital channels and it WORKS!!!

I don't know if it is a glitch, or some super special secret blog reader arranged for the tv...but THANK YOU VERY MUCH....

my sanity is saved....hoping it stays working :)

Tuesday pm update

well...two pints of blood and a bag of platelets later, and Brian's whining about the crap food here again....

someone send me some good cheese will you??....I've plenty if whine to go with it.

Tuesday am update

Transfusions today....both platelets and red cells....I don't have the labs yet, but I know they must be really low...
Brian's not happy, he doesn't like transfusions and they are not always problem free for him. But let's hope so.

We were still alseep this morning when things got rolling and we got a snide comment about it....pretty funny since we barely have been sleeping. I let it go ....for now....just in case it was a flat attempt at humor. But they seriously don't want to go down that path with me.

I have really nothing bad to say about the care here. We've had good doctors and caring nurses so far. Sometimes a little too attentive. HOWEVER....if I have a complaint, it would be about the cleaning crew (contracted out of course) not exactly conscientious.

monday pm update

Extreme cranky....pacing like a caged tiger and irritable. That would be Brian.
things at home...SIGH...

Brian got his hick line flushed with TPA...it stopped working and he has a history of fibrin sheaths.

my evening?....let's just say more pleasant ones have been spent.....

pretty soon I might just check myself in for a 48 hour vacation in the psych ward....at least I wouldn't have to pay for the crappy food...

failing counts.....monday am update

And the counts keep failing....they are lowwwww today....almost at transfusion level, but he manages to just skirt...but they expect his counts to continue to fall through the week, so it doesn't look like we'll be getting out of here anytime soon unfortunately.

That was disappointing news, the constant drain on our resources is really taking it's toll and the longer I stay in the city that isn't going to change. But to leave Brian here by himself really isn't an acceptable option. It just all Sucks



Brian and I both want to go home....and things there aren't going particularly well either....we really work much better together then apart.

so his white cell count is 0.1
his red cell count is 2.8
his platelets are 22....

nice and low....

Sunday pm update

Tonight Brian has a little fever 100.4....you know..little in the world...big in chemo land...but nothing will change and he actually feels better though he has a sore in his esophagus that is really hurting him when he eats.
The gastrointestinal sores are the worst...they were before and they are again, causing pain and serious discomfort. He is getting medication for them to help them heal, but it really takes time.

Today is day 4 post transplant and all things considered, he's doing really well. He has expressed his desire that he doesn't want to go through this again and he hopes that cancer is gone. As I sit here and watch him, I suspect that if it is not, and it returns, getting him to accept treatment would be a battle. He has the most amazing spirit however, and for those few who really get to know, there is not a better soul on the planet.

sUNDAY

His Ice cream is HAPPY

even if he isn't....I swear it is exactly how it looked when he took the lid off....

Crankenstein....the sequel

Uh hun....all he needs are some neck bolts...Deb?...Photoshop time....

hey Dude, you've got a medicine cup mohawk....COOL...Rad?....whatever....

Sunday Update

Brian feels better and his temperature is down. He is still on IV antibiotics, but is feeling more like his disgruntled self.
He starts neupogen injections tonight, so that should help boost that 0.2 white cell count. His red cells are hanging in there, but his platelets fell to 44 today. Another plunge and he'll need a transfusion. We'll see in the am.
His wash is done, my errands are done and the hospital internet works...all is right in the world...

oh, my 13 MONTH OLD washer at home is apparently broken though, and Stephanie the notorious vacuum cleaner killer, knows nothing about it.... yep, I believe that.....Not....

saturday pm update

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 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....

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....

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.

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....

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.

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.

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.

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)...

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.

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.

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...

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???.......

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.

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. :(

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.

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.

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?

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....

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.....

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...)

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.......no groceries shopped for yet....not even a half a way through the paperwork...don't know where I am staying, doing laundry, or anything else...

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 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'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....

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.

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.

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....

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.

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.

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.

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.

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....

Happy 4th of July

May your day be filled with grilled hamburgers, corn on the cob, potato salad and watermelon.

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.

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.

wednesday's complaints

today Brian has low grade fever...not quite enough to call the doctor, but we're getting close. If we didn't have an appointment already for tomorrow I'd guess we'd be calling.

In fact, I wouldn't be a bit surprised if they kept him for low counts. He's got a headache and he's bleeding from the neupogen injections. All indicators I have seen before of low platelet and RBC counts.
He's not too pale and isn't doing badly, and I don't know how low in adults is that slap your ass back in the hospital line...I just know where it was when he was a kid.

Scott and I had a disagreement today...It happens...."the fix it and make it all better" fairies are apparently on strike and it leaves us with the mess we call life to clean up after ourselves.

It's hard for people who don't live under this type of stress to really understand, I know that, and I shielded many of those people from the reality of it last time. I haven't the time, energy or patience for those niceties this time around.

tomorrow I have to pick up more neupogen at the pharmacy for Brian, as well as the doctor's visit and any unexpecteds that come from that. I also need to get in touch with the guy from hosts for hospitals to see if he has any arrangements for next week, or if I'll need to drive back and forth. Hotel is out of the budget, and we're still trying to get another car on the road since I won't be around to drive Steph to work (or let her take my car)..too many freaking complications. Not enough energy to get them all solved.