update frustration

So...we met with the surgeon....he is concerned with doing a biopsy of the lympnode because of it's location and size. He feels like if it is the lymphoma we'll have a larger node soon and if it is an indolent malignancy of another kind well then they don't respond well to chemotherapy anyhow. (his words ) (got to love the medical professionals either they blow sunshine up your bum or pow right in the kisser)

He is going to converse with the oncologist Dr. Nasta and what she decides is what he will do.

And this couldn't have occurred BEFORE the long and annoying drive?....these are the type of things that frustrate me. 6 hrs in a car for a 30 minute consult during which aside from a refreshing frankness (I am not into sugar coating at this point anyhow) Not a darn thing was decided except to tell me the dr.'s need to talk.

I'm tired, I am crankified and we're all frustrated that we've been left in limbo land ... His suggestion was another scan in March....
we still have unanswered questions....about the spleen..platelets...

while I can appreciate a good and accurate diagnosis takes time, we've had these irregular test results since October now...

I want answers damn it and ice cream...definitely ice cream ....

off to Philadelphia tomorrow

So we're off to Philly tomorrow...we're leaving a little early because of potential weather mess. The surgeons name is Giorgos Karakousis...and yes, I'll be practicing that on the way down....don't want to mispronounce...and it's quite tongue twister.

Hopefully they will get everything done in one shot so next trip will be the biopsy....it has never been handled like this before so I'd be lying if I didn't say the change in procedure that we've been through before is somewhat concerning...however Brian's previous biopsies did occur after admittance to the hospital..all 3 times so maybe that is the difference...IDK...

His toe is infected again..it is just not healing...we're going to have to get that looked at too...again...

I am pretty sure dashing thru the snow didn't help.

probably won't be much to update tomorrow night..but maybe a new schedule....

special thanks

Today I want to thank a special person who decided to help raise some funds to asst us with Brian's expenses. Bill Haller...Bill introduced me to Dubstep....a very amazing and interesting form of music that I enjoy...he is obviously very talented from the things I have seen, and funny..some of his facebook posts with his wife are just hysterical....They are with no doubt kind and genuine people.

http://www.youtube.com/watch?feature=player_embedded&v=rvh9-TQ6IYI

Here is a link to his new video from his show....I am humbled by his caring
 ( and his dps ...)

Thank You Bill and Nathalie





I also want to thank our friend and neighbor Jim for coming and clearing my driveway of all our snow just in case I have to get out or have an emergency, He knows Scott doesn't always make it home from work in bad weather and
I really appreciate what does.
Thanks Jim

I also want to thank my very good friend Lynn....she was our neighbor and there in the begining when we got started down this rabbit hole of surprises...she has all along helped us out in many ways. Always the first to jump up and help people. She is one of the best people I know...
Thanks Lynn


It doesn't always seem easy or fun, but in many ways we are lucky, our long journey abet filled with many pitfalls, sacrifices, tough decisions, and STRESSSSSS ...we have had the honor and privledge of meeting some great people along the way. They even look the other way during those periods of time when my head spins around on my neck like a bad horror film  :)

todays lesson on neuropathy

Sometimes it's the side effects of all the chemo that Brian has had that we have to deal with. In 2000-2003 Brian got a chemotherapy drug called vincristine....not only did it increase the likely hood of sterility but it also left him with nerve damage in a variety of spots. One of those being his feet...while this picture IS amusing and one of my favorites, it also shows how cold/hot/pain work differently on Brian. He SHOULD know better...but because Brian is ALSO an Asperger's child (adult) he thinks it's just cool that he can run around in the snow barefooted....

A mother's work really IS never done.....sigh...

Friday 2/7 update

Can we say.....SNOW STORM :) wooohooo

I'll be 50 years old in a month and nothing makes me smile like snow....I love it.

I just hope all the roads are clear for Monday....I don't want a long drive to take longer and there is no way I am willing to risk another postponement.

I put some new items on Etsy and I will be listing more to ebay this weekend...

I don't know if I mentioned this but Medicaid is dropping the plan Brian is on, so I have spend that last few days trying to get in touch with all his doctors to make sure we choose a new plan that they all accept. The nightmare that is...yikes..it would be so much worse if we had to change a doctor.

So I expect we'll get a biopsy date on monday after all the testing and meeting with the surgeon. This biopsy seems so formal in it's scheduling...not sure why....maybe just because it is at a different hospital then the previous ones have been.

ok...so monday night update if I am not too tired...if not then tueday update.

oh to save some money, we turned off the house phone, so we're on cell phones only...if you need to be in touch.

update and announcement

Sorry..things here were busy...so we had an ice storm and had to postpone meeting with surgeon until 2/11....this is like the 3rd time weather has made a trip get pushed back...just another issue we have to deal with traveling to Phila.

Brian is tired, his last labs still showed low platelets..but not so low to be concerned....he enjoyed a day out snow tubing (little hill max fun minimal risk) with his sister and her fiance...YES....FIANCE....


Stephanie got engaged tonight...of course everyone knew but her..made it even funnier...a nice happy note in the midst of all the chaos...

the day snow tubing really boosted his spirits, he's been a bit depressed lately...

eye dr. update

Sorry I forgot the eye dr update....Brian had some trouble with his eyes when he was in Univ. of Penn for the stem cell transplant from some of the chemo drugs.

His eyes are ok, just worse, they warned us this would happen. His prescription incristed by 1 in his one eye and by 2 in his other eye....so he does need new glasses....Not covered at all by medicaid, so I have to hunt around for someplace where they are not going to cost me a fortune...Scott's eyes are fine, the surgery he had two years ago has fixed the CSR and it has stayed fixed which is good news....I need new bifocals the nearsidedness required a tiny adjustment but the farsittedness almost doubled....guess I am going to need those books with the big print soon..lol

it is C O L D here today...about 7degrees...we are suppose to get some snow but I dont know if it will snow when it is that cold
(hope so , I love snow)