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.