thank you;s

I want to say thanks to those who were kind enough to send Brian gifts for the holidays
thank you to Aunt Donna and John
thank you to Grandpa and Gigi
thank you to Grandma, Anut Deb, and Sharon
thank you to Stephanie and Tim

also Special thanks to those who thought to share some holiday generosity with us
The Pocono Elf
 Delran High School
Jeremy

we appreciate it greatly

saturday update

It's snowing today again...so awesome, but I am sure the roads will be all clear by monday morning when we head out for Brian's rescheduled PET scan.

Today Scott and I have been married 28 years..unfortunately due to his work schedule he doesn't come home on Saturdays so I get to spend it alone...one of many things that get shoved to the wayside when you've been dealing with an illness long as we have. For us because of the bills work has to come first..always..regardless of what we wish could be. What we get yearly from lymphoma society covers gas for one trip to Philadelphia. We don't get any other assistance from any cancer groups....it's just not how they work unfortunately.

I got notice from the state of PA that they are eliminating the healthcare plan Brian has in a few weeks, and we have to choose other medicaid coverage...I am very concerned about that since I don't know what changes that will make for us. There are already things that they don't cover for Brian..we can't really take on more then we have already in regards to his expenses...and it also means MORE PAPERWORK as soon as the packet they are mailing arrives... the paperwork burden is...killer...going to need a file cabinet soon since my little file boxes are stuffed full already.

I hope everyone has a nice weekend...

oh the weather outside is frightful

Brian's scan and labwork was postponed until monday due to the storm...

Once a bear always a bear.....

When I was in High School....I did a lot of things...athletic training, yearbook, choir, drama club....my favorite was choir, but the athletic training led to first aid classes which led to the Delran Rescue Squad where I met my husband. (that and  friend who psuhed me to go)

Yesterday when I picked up my mail, there was a letter from the administration at the high school.They raised and sent us a donation to help with some of Brian's expenses. The donation is so very much needed and such a wonderful surprise, the note even more precious.

One of my former classmates is a teacher there in my alma mater and I suspect she had a lot (if not everything) to do with this...

our mascot was a bear and that is how the letter was closed "once a bear always a bear"...my husband too was a bear from the same school....so they helped two bears and cub :)

Scott and I will be married 28 years this week....and we've over come and dealt with things that I hope no one ever has to.
Brian goes for his scans on the 27th and the Lehigh Oncologist on 1/2 for results and University of Penn Oncology on 1/9...a lot of driving ( about 700 miles) and this donation will cover those expenses and maybe let me get my oven fixed :)

Happy bear butt wiggles :)
a fantastic holiday gift.

our deepest thanks  :)

water heater ordeal

well the water heater going was quite the ordeal....the old water heater was crammed under the stairs, and was a "lowboy". The new water heater is not, it is tall and is currently in my living room with flexible pipes running to it until we get permanent pipes run for it to go some place it fits..yeah...well guess I could throw a few xmas balls on it and call it done...no I didn't put up a tree... don't have the money or the desire...

I sure do have new appreciation for caregiver fatigue...how about caregiver burn out...after 12 year..I am SO there.

it least it snowed today...snow makes me happy...

my bloodwork came back from the dr..looks not so hot..I need to take better care of myself...my white cell count is high..my liver values are high...my sugar is high....my vit d is ..well there isn't any..

guess I need to get it together somehow...funny how quickly I got stressed and worn out...I can't live like this anymore...just not sure how to change things I can....there is just me Scott and Brian...no other help...and scott works 48 hrs a week an hour and 15 mins away...

I was reading someone ppls blogs about living in situations like we are..trying to get some ideas...most don't have 12 years in and they sure do seem to be able to get help...I must be doing something wrong for sure. maybe if I paint a rosy picture and pretend it's all fantastic,...

at least once we get the waiting over and we know exactly what we're facing this time it will be better then waiting...

questions and answers

I got a question in one of the comment sections and I am happy to help, but please remember to  leave me a way to respond, I send an email to the email that the blog generated, but I am not sure it gets to the person...it's safe to leave me an email in comments because they don't auto publish. thanks :)

the universe laughs

ok the universe is just laughing at me now...my paypal card was used to make a $280.00 purchase from walmart.com...
keep it coming baby....I just refilled my xanax...

I officially hate this holiday.
I want my grandma....

unfucking beleivable

it's offical..I HATE christmas...the world is welcome to end tomorrow....my water heater just went

happy holidays

I hope everyone enjoys their holidays. I hope that they are free of stress and full of joy...I got the stress covered for you.

monday, monday, monday,monday...

Brian slept all day...he complained about feeling hot but he didn't have a fever. I think the wait for the tests is just getting to him a bit..really to all of us.

tomorrow he has some more paperwork for college to do, no point in not moving forward..something positive to focus on. And we're going to the bookstore...he needs something to read. I wish we had a book exchange/ used bookstore around, I miss the one we had in NJ..

we had fog all day here, couldn't even see the end of the driveway...probably a cloud sitting on the mountain. But just warm enough we didn't get ice thank goodness,.

the senseless attacks on the school children both in CT and China show that society as a whole are really dropping the ball on those who need help. Mental health is an important thing, so is support. People who are mentally ill are no different then Brian with cancer, or me with connective tissue disease. They need more then a pill to make them happy...they need understanding and real treatment.

oh wait wrong blog..this isn't my soapbox blog...well still it is important enough to share my thoughts.

Brian's toe is finally getting better...he's tired and cranky this week, but he is still not sleeping well and while the meteor shower was fantastic to watch, he's off schedule now and stressing himself out over getting back on schedule. He can control so little in his life that he has been focusing on his schedule...and while it is a bit trival, he needs that illusion of control over those things he can.

Whatever happens, the wait for the testing and results is a huge stressor and we all want it over, but we needed to wait for him to get the antibiotics and antifungals in and through his system.

My car hit 276000 miles the other day...125000 miles pretty much in back and forths to the hospitals over the last 12 years. Scott does a good job keeping it running for those trips. My neighbor Jim helped him give it a good tune up 2 years ago when they did some engine work...now if I can just get that exhaust system replaced since it is still wired up on the car...

how would have thought we'd be like it was in the beginning rolling change for gas and band aiding the cars now...pretty sure this was not how I saw my life unfolding. But I wouldn't change a thing if it meant not having this time we've had with each other. It's been a really hard life, one that pushes me to the edge, but it has not been all bad.

I understand more then most how desperate you can feel, how low you can sink...and I have certainly considered the possibility of my own mortality, but to needlessly take lives that you have no right to..this I can not understand.

Send a cheery note

Brian sometimes gets down and feels like no one cares..I know the feeling..I feel that way too sometimes even if I know it isn't true.
Yesterday I got a Christmas card from a very long time friend...someone I have been friends with since secondary school..and the little note she included helped me so much to remember people care..so I've added a side bar with Brian's snail mail address if you'd like to send him a card.
I'd put his email up..but Brian is not much of an email person and he never remembers his password so he must have 10 different emails all sitting in limbo some place cause he's made a super secure password...it'
s SO secure even HE cant get into it it.

please give me the will

Brian is sleeping today because we stayed up to watch the meteor shower...somehow I MUST find the internal will and strength to get some decorations up for him...he deserves it...I am just having such a hard time with the whole holiday ideas this year and not much of a budget with all the trips back and forth for the scans/dr. visits...I just can't get the creative juices flowing in the pull the rabbit out of the hat department.

Brian loves camo though and I am going to get some yarn in camo colors and crochet him a nice warm scarf....and maybe some matching slippers...got to keep Frankentoe warm

Frankentoe is what I named his ingrown infected toe....(ehh maybe that is one of those you have to be here for that to be funny things)

Scott got some new blood pressure medication from the dr...his other meds are just not cutting it with the additional stressors..my check up went ok got some stronger xanax to help with the sleeping and

I am excited that I got an order for two beaded necklaces to make for someone for Christmas....from my etsy shop :)

hope everyone has a nice weekend :)

meteor shower

Brian enjoyed the meteor shower  and we have such a terrific clear view to see it with. It was chilly though :)

tuesday 12/11 update

Brian finished his antifunal medication, and while it helped, it did not clear up his head, so it looks like we'll be seeing a dermatology specialist. His oncologist thinks that it may have become chronic psoriasis from the damaged immune system from all the chemotherapy. Since it is SO bothersome to Brian, it would be very good if after 10 years, we could get rid of it.

He's not running any fever this week...but the fatigue is still more then say a month ago..very concerning indeed.

I am headed to the doctor myself tomorrow...so is Scott..he's getting a check up and I am getting my heart medication adjusted and an ekg and getting some different meds to help me sleep and a check up (or more likely a lecture..lol).

I was hoping to see a good friend from Hillsborough as well, but she is out of town :(   I don't get to see her like I wish I could very often.

my back was alright in the car to Philadelphia surprisingly, so I hope it will be good tomorrow. The long car rides have a habit of aggravating the injury.

Brian and I are playing warcraft tonight.."For the Horde"

ok camera charger found...2 auctions up...link to etsy shop up...shop is empty but I will add some stuff shortly...

a new picture of Brian n Leni on the side, I took down the surgery pic from feb 2010...put something less depressing up for now.

times like these I wish I drank...so much easier to explain my inability to cope that way...r at least a good excuse...but NO not me...

I am a little less depressed today because I took some xanax and a whopping load of caffeine....I have an appointment to see my doctor on wednesday..pretty sure I need a BP medication change and some better antidepressants.
better coping thru pharmaceuticals...and MUSIC!!!



http://youtu.be/N6uEMOeDZsA

crappy weekend

I am having a really hard time this weekend. I am sad, depressed..and I know from last time no one really wants to hear it...but it's a fact that I can't escape...

I just put the xmas stuff back in the closet..I can't even face it right now. I am beginning to wonder if after 12 years of being pounded on I just reached the end point of being able to take it.

damn oven is still broken too

wed night fun

we had a great time last night...we sat and made sandwiches and watched the first season of Big Bang Theory....Scott had never seen it and it was SO funny for him to recognize some of Brian's behaviors in Sheldon. Also funny to listen to the bicker about that...since Brian obviously disagrees.

a nice evening...

Just trying to get organized...not sure why I try cause it seems to be a losing battle, right now it is the paperwork nightmare that keeps me busy.

On an upside of things, we got notification from ssdi that Brian's disability review is finished and approved and he won't have to have another for 3 years. It's not a lot of money but it sure does help. Diet is so very important in him fighting this disease and I don't know about you, but wow has my grocery bill gone up in the last two years.

the dogs chewed the weather gasket off the bottom of the front door...idiots....cute lovable IDIOTS. Brian was playing with them and then got tired and I wasn't watching so they decided to go get into trouble all on their own.

it's frustrating just biding our time until the testing...way too much time to sit and ponder...and not enough time to read thru all the treatment trials.
Since Brian has had a modified CHOP protocol, an ICE protocol and an autologous stem cell transplant, we are up to just few options. Good new options, but ones that are very new and have relatively few results. And maybe he wont have to have treatment cause this is just a big nasty scare, but I don't believe that and I prefer to be prepared.

where is my camera charger ????

argh....can't find the charger cord to my camera...why is it electronics evilly plot against us?....I cant not count the number of times I have gone to use the printer to find it ...unresponsive...

auctions coming soon..plz stand by due to technical difficulties

user error...


watch this amusing video during intermission

http://youtu.be/rXpjX4l0hRg

and this one

http://youtu.be/bSywiwgC4Dk

Sunday

Paperwork is organized....binder set up...reorganized to keep all Brian's test papers/results...12 years ago this month, Brian was first diagnosed with anaplastic large cell lymphoma.
When I think back on it, it's funny the things we remember...we've managed a lot of funny times along with the scary painful ones.
I wish everyone really knew Brian like I do..his sheer will and determination..his compassion...his sense of humor...and his brilliant mind. I also wish I could fight this battle for him.

we worked on some math again today, he still has to take his placement tests for college and he's still determined to go which I think is fantastic...focus on the good :)

Brian ran a bit of a fever today, and was tired, so we grabbed a dvd from redbox "The Raven" and watched that, it was pretty good. I haven't rented a redbox in a while...it was $1.24 instead of a $1.00...I don't know when they changed their pricing and $1.24 seems like a weird increase..why not .25 cents? ah well..I like redbox..cheap and convenient...I still don't know why they don't have them at the hospital...seems to me like that would be brilliant.
 I got all his appointments for his testing and scan scheduled, and am just waiting on the precertification for the PET scan. But We have plenty of time before the scan so I am not concerned.
It looked like snow all day but weather report says it is going to be a bit of ice this am....hope it doesn't prevent Scott from getting home from work today :(

I am going to try and get some ebay stuff done tomorrow and I hope tp get some things in my etsy store too...not feeling the motivation...but the stress was tolerable...Brian did a few miles pacing in a 5 foot radius though....pretty typical for him ...Then he chilled on the bed playing with Leni....she has him wrapped around her tiny little calico paw...thank goodness he has the pets, they bring so much to his life.
We played warcaft for a bit before he went to sleep. I'm going to make sure the firewood is covered over in case we do get ice....I hate wet wood...I have to work way too hard to get the fireplace started. Then I am going to get some sleep for a bit..
I haven't given much though yet on what we're going to do holiday wise...usually we decorate a lot but I am not feeling it right this minute...I guess we'll figure it out on Scott's next day off from work.

reading material

if you have any paperbacks to share plz keep us in mind...good for that sitting and waiting..thanks :)

I'll be happy to return them if you put your name/addy inside them.

Brian's new Dr. Visits and test schedule has been added to the calender.
Thank you to those who have emailed their good wishes and thought and prayers

round like a circle in a spiral like a wheel with in a wheel..

You would think somehow these posts would get easier....the trip to Univ. Of Penn with Brian brought us no great sigh of relief. His oncologist is very concerned. She put him on two weeks of antibiotics and a course of antifungals just to make sure the enlarged lymph nodes are not from any underlying infection. His spleen is still enlarged.  Just covering bases and going through the diagnostic process.( he has an infected toenail) He will have a PET scan the week between xmas/new years..to be scheduled in the next few days...and a revisit to Uof P on 1/9. At that Time there will be a biopsy scheduled, and we will know for sure what we are dealing with. And not to be pessimistic but realistically it looks like the cancer is back and out of remission. Things are likely to move quickly once the biopsy is done, so I have about 5 weeks to get things fixed, and put in place and get things sold so we can go through this a third time. I am not quite honestly sure how we can and will face the expenses, haha to say little of the stress.. but you'll be seeing a whole lotta ebay links posted no doubt....it's daunting to think about this a third time....just the gas/parking alone much less all the other expenses...and it's hard to handle it all myself...( Scott is still our only income) but the key is to stay proactive and not let things slide (ugh and the paperwork nightmare).
I am going to try and find an inexpensive place to take Brian away for a few days to get ready for the ordeal ahead...if we can....so suggestions are welcome

Did I mention the paperwork nightmare??

Brian's response to today was..."it's okay"..

He is by and far the most amazing person on this whole planet.

round like a circle

ehh.....due to the power/gas/road closure issues, we were forced to reschedule the trip to Philadelphia. Unfortunately the soonest appt we could get was 11/28.
Hopefully by then we can afford the next exhaust system my car needs anyhow..but I shouldn't complain....it's old and has crazy mileage but it still a good vehicle. 

Storm is getting started here....lots of rain and wind...(yes I'd rather have the snow). I don't know yet how this might impact our trip to Philly on Thursday....just have to wait and see.

Thanks to those of you who have sent emails..it really helps :)

Two Year post transplant check up was not as smooth as I would have liked, the Cat scan showed increased lymph nodes and an enlarged spleen. We're headed to University of Phila. to see Dr. Nasta on Thursday 11/1 and Brian is scheduled for a repeat Cat scan on 12/12. It hard to face this again...I feel so lost right now....even if we did know it is always going to be a possibility. We haven't recovered from the last round really....emotionally or financially....and Brian has so many plans for the future he should be allowed to do ... He got accepted into the engineering program for college.. I'll scan all the papers shortly for you to read. Trying to get ready for the incoming storm, Scott's stuck at work and Brian's tired so I do what I can.