fundraiser update

http://www.gofundme.com/5ilsw0

in addition I would like to thank my mother and my sister....

et all update

Well, the car accident has really emotionally pushed us a little closer to the edge....it is not a good thing.
Brian had a terrible day yesterday emotionally...mentally..really pushed me to the point where I had to make him sit down and think if continuing to live here was in all of our best interests.
It sounds hard I know, but with the accident...no reliable car...no car for me at all, I simply can not have him acting out and on a manic roller coaster.
We're scared...we are kicked further down then ever before and there is no light at the end of that tunnel right now...I understand why he feels like he does...we are falling apart.

will it get better?...IDK
12/17 14 year anniversary of Brian's first cancer diagnosis...we really have been through the ringer...and NO ONE saw where we are today as where we would be.

as always there are those who manage to make me feel like my best is never good enough as well.

please share and help us to get another car if you can..it would take a lot of pressure off.

and we could regain some normal something....at least go further with the cat adoptions and get Brian to Philly in FEB.

or maybe I will just find a nice bridge to jump off of...starting to be a very appealing alternative.

http://www.gofundme.com/5ilsw0

terrible car accident

Scott had a terrible car accident the day before thanksgiving commuting home from work., leaving us carless. Please consider making a small donation to help us get a "new" used vehicle.
thank you. We were very lucky he wasn't more seriously injured or killed.

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http://www.youtube.com/watch?v=4UoIMwQEgL8

Update after Univ. of Pa visit

It's been awhile since the last update, we've been busy.

The good news is that Brian's last PET scan was completely clear and he is considered in complete remission. We are free of those constant trips now until Feb.  In Feb he will have a CAT scan and will see Dr. Nasta again. For now, we've decided to deal only with Univ. of Penn.

Brian also went to his regular Dr. and got some antidepressants, and some medication to help with his severe neuropathy. AND some more antibiotics for his toe. He also got a referral to the podiatrist and the psychiatrist. (those appt he has not made yet, but I am willing to be happy with the baby steps)

I have befriended people on facebook who's children have and are battling cancer in it's various forms, and I know that no matter what we have lost....what we might lose...we are blessed...Brian has survived for 14 years. Through some terrible chemo treatments, through a stem cell transplant that was even harder. and while we are all damaged...physically and mentally and ruined financially...we have Brian ..I can live with it. We are the lucky ones even if it doesn't feel like it every day.

august update

Brian had his PET scan and is heading to Philadelphia to meet with Dr. Nasta to review the results on Wednesday 8/28.

We'll post updates after that.

We have some issues with his mental health that are trying to get addressed, but it is a little easier said then done. He is not 100% committed to addressing them. We've had a few false starts in getting him the right kind of care, and obviously my ability to physically drag him off is not possible.

I have had personally a difficult summer physically and I have had to focus on that, simply because my body gave me no other choice and since there is no one else to step up and care for Brian, I had to give myself attention first. Xrays, MRI, blood tests later, it looks like either my immune disease is progressing or I am having a wicked flare. In any event, I have severe tendonitis in my shoulder and upper arm that is on week 9 of healing, and forced me back on prescription pain killers. However, it is making improvements after a series of injections, medications, steroids and even some antibiotics.

The cat rescue continues to progress....I am at the point now where as soon as I have the funds necessary I can file the paperwork, which is filed out and ready to go. The funds as always..the issue...lol

hope you all have enjoyed your summer.

updated schedule

Brian:

PET scan 7/24

Univ. of Phila....Dr. Nasta  8/28

unless something changes because of the PET scan results.


it's very hot here this week....I guess it is very hot pretty much everywhere this week.

My shoulder is still a problem and now is infected as well..so the steroid injections did cause cellulitis....but I have started the PT exercises, they hurt but seem to be helping a little....still ice, ibuprofen pretty much 24/7, but I have been able to reduce to usage of the dilaudid to almost none, so the pain is getting better...and I am just stubborn and won't take the rx. pain pills unless I am crawling out of my skin in pain anyhow. Certain things still cause immense pain, sitting up straight at the desk and bending over..must just position the shoulder to press on the inflamed tendons.

but I had the xrays and I had the mri so that is it...I am done with the DR. thing...lol...seriously unfortunately I don't seem to just be able to ignore this one.

short update

Brian had his 27th birthday.....how awesome we have been blessed to have him with us that long :)
we had his favorite cake...chocolate cake filled with vanilla custard and fresh strawberries covered in whipped cream. ....ever so yummy.

Spoke with Dr. Nasta's assistant yesterday, she doesn't want to bother with the CAT scan this month, just go right to the PET scan....WOW and holy shit does that make me concerned.

waiting for that other shoe to drop.

Scott is not dealing with the stress well again, got in trouble at work..again..got suspended for a day and they took his 4 hours a week overtime away for a minimum of 3 months...because when you have someone who is already stressed to the max and in financial ruin it helps so much to take another $500.00 a month out of their pocket....idiot fuckers.

yes bitch bitch bitch....and show me where I don't have the right, and I'll tell you to come live my life for a month and have to listen to all the people who say they want to help and never do.

HAPPY BIRTHDAY BRIAN

WOOHOOO.....

these milestones are such important ones....and Scott and I are taking the birthday boy out for lunch...and we got his favorite cake :)

We are the three musketeers....stick together no matter how bad things get....days like these are good reminders.

and yes although my shoulder is still very swollen and in great pain, I love him enough to struggle through and put on a bra...(that is SERIOUS LOVE considering the condition of my shoulder right now)

the spring blues

Brian is kind of having a rough time, feeling like he is all alone in this battle...I am pretty sure he would appreciate a card or a quick note to encourage....

He's been in this battle for his life for 13 years now, and it gets to him...it gets to all of us. He feels very much frustrated and discouraged.

Brian McColgan
3606 Heather Lane
Tobyhanna PA 18466

may showers

so I haven't updated in a few weeks..things here haven't really been good. Scott is having a rough time again, he feels the stress more quickly these days and the issues with the car hasn't helped take off any of the pressure.

I had hoped we'd get some money to fix the car, but that didn't happen, my trying out other selling sites then ebay hasn't really been successful...so it is a bit of frustration.

Brian is sure he is schizophrenic, and while in the past I have been able to reason with him, and point him in the right direction as well as remind him he didn't sleep or whatever the issue was, I am simply exhausted and I need someone to take over this aspect of his care, unfortunately he refuses to advocate for himself and doesn't see the need for a psychiatrist or medications. While I hope it doesn't come to it, I'd be lying if I wasn't considering forcing him into it.

both he and scott have taken to chronic pointless arguments with me as well...and while it is easy to to say.. hey how about a little support group or counseling  the practicality of it both in time and money is not so easy. There would also be the fact they both refuse to go.

We've gotten past it before, and I hope we will again, we just really could use a break...it is more the constant droning of money and emotional issues that really fray the edges so badly.

On a positive note, tomatoes, carrots, beets,onions,  raspberries and blueberries are all happy growing...I am still trying to get in another bed for peppers and potatoes. And ideally a bed for asparagus which takes a good 2 years to grow.

the toe you ask?..oh it is as infected as always....and Brian is reminded daily to call the dr. for antibiotics.

He'll be 27 next month...we have begged borrowed and stolen time to get him this far, but we are missing out on enjoying it. Stress the not so silent killer.

general update

Not a whole lot to say...we've been busy planting veggie seeds, trying to de rock the garden...that is about it. It's still pretty cold at night, I am concerned we're going to have a short growing season.

Cat stuff....getting ready for the first adoption event...Not sure Brian is loving the whole cat idea...we'll see...

Had to have scott fix the dishwasher again...what a piece of crap that thing is. I am not sure why we are having some many problems with the appliances...but I suspect we'd do well with a whole house surge protector...

tired this week...Scott and Brian have nasty colds and I think I am fighting it off just fine, but it makes me tired.

But the fresh air is good and so is airing out the house.

Peepers are out at night...very noisy but cute.;

choices

Scott and I sold our wedding rings today....gold fetches nice money and Brian needs to see a dentist, he really needs a new mattress and we had about $200.00 in unexpected car repairs.

I knew we had to do it...just way too many bills we couldn't cover this month...and I know we should be upset about it, but truth be told...you do what you have to do.

If i didnt have the cat rescue to keep my mind focused on the positive, I might be feeling stressed, but I didn't. Sad a little, but it isn't those rings that symbolize the fact that we're still together despite the blows we seem unable to step to the side and miss...

who knows..maybe next Christmas when we've been married 30 years we can get new ones, but for now I got the dentist thing and the car thing covered and I am working on finding an affordable mattress.

you do what you have to do for your kids...and as long as it is the right thing...the cost is the reward of being a good and caring parent.

I know people don't understand the toll that 13 years of this takes, and I hope they never do. Better it is our burden because we can do it then it is someone elses.

funny what we miss

we've had to give up a lot of things and we've found out after a while you hardly miss them....

but right now when my dishwasher is broken and full of water and my husband's solution to dealing with the stress is to stay at work again...

I miss the money to pay to get things done....I mean I did make Scott  (and still do) fix the things he could..but sometimes?...

today as my back kills me from bending over the sink and bailing water from the dishwasher..I miss being able to just go buy a new one.

I HATE washing dishes by hand and so does my back.

on the upside, it was a glorious day out, Brian and I had lunch outside in the sun and fresh air and I see little baby greens starting to peek their heads up in the gardens.

and my mage is level 90 on warcraft..finally... (got to have a little fun in all the craziness )

our new normal

So I know many of you are waiting to hear about yesterday' trip to Philadelphia. With the Cat Scan results (which i neglected to get but will next week to post)

Brian has a lesion on his spleen, which did not light up on scan, so they consider it "old" lymphoma...but it has not shown up in the reports before. Although Dr. Nasta said she looked back through the years and found a referral to another (or the same?) years back.

basically there has not a lot of change, There are some subtle things that I think indicate his body continues to mount a battle against the cancer to keep it contained. But this is simply a DR. and a mother having a conversation about what they think is going on.

There are some other issues that makes the DR. think Brian has an autoimmune problem as well, so they ran some additional blood tests.

The toe is one of those things, the fact that despite repeated doses of antibiotics it has been infected for 7 months now.

I think we have no choice but to continue to battle this with good whole foods, making sure that Brian gets the best possible nutrition he can.

PET Scan in 3 months again....it looks like this is going to be what is normal for us now....
scans until something is confirmed, then treatment...then scans....then treatment..with the hope that we can keep one foot ahead of the cancer with whatever new treatments come out the pike.
It sucks and I simply do not know how we can continue to do this...emotionally or financially.
We've been skating the edge of disaster with the depression, the old cars, the bills, the emotional fall out...for a long time.
We have to be careful here....it can and has consumed our lives and that doesn't help us keep one foot off the edge.

And sadly it also once again sends home the point, there will never be vacations or retirement or many of the things we had hoped to do.
As parents, we're okay with it, I mean what parents wouldn't give up everything to save their child, but it doesn't mean it isn't hard.

Brian's going to continue to try and get some money for school and I am going to move forward with the cat rescue...because otherwise we wither and die out of sheer emotional exhaustion.

Scott's taken up watching sports..who knew...

we're broken in so many ways...but we're also Scottish and German and Irish....we will do ok broken...the genes say so.

long week

It always seems to be a long week while waiting for that trip for scan results. Thursday we head to Philadelphia....

Scott has to replace the fuel pump on his car today...always one thing or another...nickle and diming us to death. This money situation is just really difficult right now. Oh wait isn't it always. But I need to see where we can make more cut backs...we have some increases in co pays since we switched Brian's insurance (which we had no choice in) and he really needs to go to the dentist...and he needs a new mattress...ehhh...never ends.

yesterday however was a glorious spring day here and I showed Brian how to prepare the new root garden. Beets and onions are going in shortly. Beets are excellent health foods and the beet greens are wonderful sources of vitamins for him, but beets are sadly one of top ten gmo foods (genetically modified) and I simply can not take the chance with his health, so we are growing our own.

so many things always running around in my head.
but I am sleeping better again..I think it is the nice cool breezes coming in the from open windows. :)

it's been a long winter...we could use some good news on thursday for sure.

have some cheese with that whine

yes I sounded whiny yesterday...4 hours in a car and a lot of back pain tends to do that to me...
I had to break out the ice and pain pills last night, but I feel better today. I see an injection for my back in the future though.

ok a new day a new 'tude...

cat scan

so today was the cat scan....Bri is feeling kind of nasty tonight from the contrast, so he headed off to bed after a little soup.

the auction ends tonight, but it is disappointing unless there are any last minute surprises.
I am going to sort through some jewelry I can live without and take that to sell...it is all that is selling these days. I used to be able to put a dent in our expenses with online sales, but it is hard these days...

gas went down a little at least...$3.65 /gal today....but 130 miles today and more then twice that next week.

Looks like I finally got everything squared away with the medicaid problems for now though...only a zillion hours and phone calls later. ;)


I applied for some other assistance to help us with some of the expenses, but all it looks like we'll get is the $150.00 from the lymphoma/leukemia society...but I gave up being proud some time ago..I'll take it.

I can't help but wonder if we didn't support Brian and pay for everything at no small cost and sacrific to us, what would happen...of course I have been wondering that for the last 13 years...

I mean seriously..I really need to buy some new bra's....think we could catch a break for a few months?...lol

oh well..spring is here..time to start some seeds to grow some nice healthy veggies...and it does help with the grocery bills as well as being satisfying to grow things.

cat scan results on 4/18 when we make make the trek to Phila. tl meet with Dr. Nasta.

auctions started

starting to list auctions...plz check them out..lots of expenses this month.

5 am blues

damn shame when it is the 3rd of the month and there is already too much month at the end of the money....it's keeping me up tonight. ;(

didn't get all the problems solved yet with the medicaid either...waiting on some phone calls back.

and I am hungry...lol   but too worn out to cook anything. I would so love some taco bell....or chinese take out...and cheesecake...def cheesecake ....

on the upside of things, I have a wonderful offer form an IRS agent who actually does 501c3's to help with the cat rescue paperwork...very exciting...AND I got my first donation of $25.00....
I have to have something else to work on besides cancer and medical paperwork... 13 years of it is too much even for me.

ubber frustration

so I have to do auctions for this month's travel expenses..(gosh wouldnt it be nice if it were to bali and not philadephia to see an oncologist?)
so I am trying to figure out what goes to the chopping block when I get a phone call  from Dr. Nasta's office telling me they do not accept any longer the medicaid plan we just had to switch to...

so now I have an oncologist locally who only accepts plan 1 and a specialist who won't accept plan 1....
worst possible nightmare right now...
they were just snitty on the phone with the if we dont switch then we'll be expected to pay the full bill....even if we do switch it takes a month, so that leaves us the the visit on the 18th not covered...really sucks this big mess...

I am not dealing with it on a friday..I know better and I want to pretend I am having a nice weekend...monday will be here soon enough for this.

It's hard as a parent to decide what choices are best for your kids. And when one gets sick, it is even harder.

I am forcing Brian to start to take over responsibility for his health. I am sure to some this has been  a long time coming, but to us, this is a very difficult step. In part because he is not well....In part because he has physical and mental issues that make this a difficult road...but watching him these last few months, I can see how he can and NEEDS to step up a bit. Not everything...Not even the important things....just the everyday dr. visits...dentist visits...

I am giving him a little tough love right now....because I see him leaning more and more on me, and he has assumed it can continue. Even if he doesn't realize it.

So I am going to pursue my dreams for bit..still watching closely but forcing independence a bit..when and where I can.

I forced him last week to take the bus to walmart and buy a new toilet seat that he broke because he kept dropping it down after being asked not to....a bus he talked about for 6 months checking out....and the minute he left...knowing he had to spend what little bit of money he had left over from Christmas..I felt horrible...but it passed...and he took the bus and got the toilet seat and he discovered the world did not end and he could do it. So did I.

it's all good...it's just challenging. Maybe the baby bird will never be able to leave the nest, and that is fine, but he needs to feel better and he needs to be a little independent regardless of his health issues.

new schedule with a boatload of new complications...

well the new medical assist plan Brian had to enroll in is causing complications already...I have to get referrals for every oncology visit now...and a quick look at the acceptable pharacuetical drugs allowed concerns me greatly...there was no neulasta or neupogen on the list at all.
I can deal with the paperwork increase..I dont want to , but I can...but the expense of those drugs if Brian needs them again?...the neulasta injections are $11,000.00 each.
I've be in this too long to outright panic....but I am getting an upset stomach for sure.

new schedule I will post on the calender...

mass confusion

so..."they" didnt schedule the cat scan but DID schedule the office visits...to review the cat scan...

oops...

getting return phone calls has really slowed up, when I spoke with Dr. Nasta's secretary yesterday, she said they were swamped with patients.

New schedule...
1st week in april....
cat scan
2nd week in april
dr. Shah
Dr. Nasta

further...tba depending on results.

Brian's medicare plan kicks back in 4/1 hence the 2 week delay...we just can't take on those scan bills.

Toe had yet another round of antibiotics....it has now been on and off since Oct that toe remains infected. Brian's immune system is just not kicking in like it should. I think it is a bit worn out and tired...

I looked into a greenhouse set up for growing our own veggies...i know diet helps Brian a lot...I'd like to provide an all organic, but the prices of food...so I am going to try and grow (probably w/o a greenhouse obviously) as much as I can.

this is an awesome idea...I'd love to do this in the back yard..I have a perfect spot....http://www.treehugger.com/green-architecture/build-underground-greenhouse-garden-year-round.html

but no way we could do it for $300.00 even with my frugality and we'd have to rent a digger...but the rocks..my goodness the rock garden I could have :)

so many ideas...I wish I could even just do a few....hard to feel like my whole life of wants and wishes just slips away. I can only imagine how Brian feels...the real nitty gritty stuff he keeps inside...Never has had a chance to have a real life.

well not much to say.....Brian's attempt at handling the doctor information was an epic fail first time around...hopefully he'll call them again tomorrow....but regardless of what his future holds and how many "issues" he has, he has to learn to do this and I figure the regular Dr is a better place to start.

the things that drive you crazy

well yesterday Brian decided to see the dr. by himself..which I am a big supporter of....but he has some memory issues on top of the general asperger issues...so when he came out from the doctor, he had a list of vaccines the doctor wanted him to get (this is a new GP remember)
I said to Brian..did u mention your spleen is enlarged and we're in a diagnosis stage?...NO....did you mention you had a stem cell transplant..NO....

bang my head against the wall and call me done....

today we took him for the lab work the gp wanted him to have to make sure his depression isn't from something else. I didnt even bother to ask Brian if he explained why he wanted/needed the medication, I already know the answer.

I think that we're just going to let Brian manage his visits wit hte gp on his own..no micromanaging..if it takes 500 visits to get to where it needs to be. so be it...

the oncology visits....yeah not so much...I'll still be glued to his side on those...

pics to share

sorting thru my computer files...gonna share some pics...they are older ones,( some many years old)  I might have posted a while back...but still nice ones :)   of both kids....
Stephanie got hurt at work last night and ended up in the ER with a concussion....and ppl wonder why I am am crazy nutso...
Brian goes to the Dr. tomorrow to discuss meds for the bipolar and depression....I am hoping he will take their suggestions. Even something to take the edge off would help my burden...

4 am thoughs

4 am...my favorite friend...insomnia...went to the kitchen to find it a mess...not sure if that was Brian or Scott...dishes, pots...wow...it's funny the things that make me crazy now...and I am never quite sure what will   do it...
I think it's just a week...I went grocery shopping yesterday and the food prices keep going up..and the gas prices keep going up...the house phone bill went up so I got rid of it...my cable is pared down as far as it can go...and it keeps going up....we only have basic and Internet...my electric company just got a rate increase...and the whole house is electric....water company got an increase last year....our taxes went up, our HOA's went up....

Scott got a $0.20cent an hour raise...

we get some disability for Brian but it doesn't even cover his food much less anything else...I have enough medical problems to qualify but I haven't worked enough in the last 10 years to collect (why not, oh yeah because I have been sitting in a hospital or taking care of Brian when he isn't in the hospital)

I do not know how we are going to make it. I don't know how other's are going to make it.

if you have some helpful ideas....please shoot them my way...but keep in mind they have to be practical and flexible...

anyone want to come help put some more garden beds in?....I need to grow more food

I hate the middle of the night panics....

update

I got a lot accomplished today....spoke with Dr. Nasta who consulted with the surgeon. They have decided to rescan in a few weeks and reevaluate the biopsy. The concern is causing unnecessary trauma.

I made an appointment for Brian to see a doctor for his bipolar...he feels strongly he needs an anti psychotic medication...and while I don't know if he needs something quite that strong, he does need some medication.

His glasses are ordered..we did go with an online company..the difference in price was just too much not to try.

and...we switched his medical assistance program as the one he uses will no longer cover him as of the end of the month. However....I am concerned by the notification we got that he has to go an entire month without coverage...which will include 2 dr. appts and a scan...that would mean a huge medical bill for March, so I am trying to get an answer to that...but the following is the print out I got from the pa web page were you make the switch


2/19/13 PA Enrollment Services
https://www.enrollnow.net/PASelfService/faces/secured/Change.xhtml 1/1
<Summary
Thank you for enrolling! You may print this page for your records.
BRIAN MCCOLGAN > Recipient ID ( I removed his number from here just for privacy issues)
Date of birth: Jun 21, 1986
Health plan chosen: Amerihealth Northeast Health Plan (HC-NE) - effective 3/1/2013,
Doctor chosen: LVPGPLEASANT VALLEY FAMILY PRACTICE
You can start using the health plan on: Monday, April 1, 2013

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)

sleep perchance to dream...

Brian's alseep....might as well get back in the habit of sleeping whn he is sleeping...I did a bit of research on treatment trials today...what would I do without pubmed?...cat in snow

I leave u with a cute video tonight...on this very cold snowy night....(not one of my cats)

enjoy

updates ..more detailed...

so Monday we have the long drive to Uof P to meet with the surgeon so he can tell us all the things we know already and to do blood work Brian just had done yesterday again.
Then we have to schedule a surgical appt for biopsy.

Do I sound frustrated?..it is because I know we're going to spend 6 hours in the car and all that gas money for a 25 minute visit with a docotor to hear things when have heard SO many times before..I HATE bureacucracy and particularly medical BS...

pfft....

here's the scan from yesterdays paperwork....we won't have a date for the biopsy until at least next week. Hurry up to sit and wait...and is there ANY wonder left why I am nuts???

LOL

on top of it, Lehigh did not send Dr. Nasta ANY test results so I have to do their job for them as well....since they are not playing nice together....

I called the trucking company who's truck broke my windshield....they are suppose to get back to me..I won't hold my breath.......but it's dead center in the middle of the driver's side so it has to be replaced.... ;(

sorry for the crappy scan, the printer atthe hospital yesterday ran out of ink....if you cant read anything you want to. just email me

University of PA update

I'm too tired tonight to post all the details and I have to return a phone call in the am to know the schedule for sure..but the bottom scoop is we're going to biopsy for a differential disgnosis to formulate a treatment plan. They mentioned a newer chemo drug but said it wouldnt work without another stem cell transplant and /or radiation...in any event, although nothing will be definate until the biospy results are back..looks like ...survey says it sucks....meeting with surgeon in Philly again on Monday....oh and a rock hit my winshield on the way home on 476 and broke it...we're gonna bleep out what I have to say about that...bllepppppppppppp.

update

well....next week is busy, we have eye doctor on tuesday to check the residual issues from the chemo...he had some trouble with his eyes during the stem cell transplant..then we are headed to Philadelphia on wednesday....
since we're headed to the eye dr tuesday we figured it was prudent since Scott and I are way over due for an exam to get our eyes checked too...I know for sure my prescription is WAY off since I have trouble with focus...but yikes..no idea how we'll budge those glasses in especially if Brian needs them..medicare doesnt pay for any of his costs.
I'm running out of ebay items to auction off and wow are they not doing so well in this economy ;(...

oh well....at least my exam is covered by insurance and a tiny bit off the lenses..

Philadelphia postponed

trip rescheduled due to flu....1/23 is reschedule date...
Brian's toe is also infected again, he is just not getting rid of this and I am starting to be concerned about why...

scan reports

PET SCAN results

so I know some of you have been patiently waiting for an update on Brian's PET scan results....I will scan the report into the blog page later tonight so you all can read...one of the reasons I do scan the results is so you understand what we go through is real, not exaggerated or made up.

so back to the results....they were interesting...the enlarged lymphnodes did not show active lymphoma, but the smaller ones did take up the contrast....the conclusion being (direct quote from report) " overall findings remain suspicious for early recurrent malignancy"
labs show low platelets and the rest of his blood work in the normal range....

where do we go from here....we are meeting with the Oncologist from Univ Of Penn on 1/9 to see if she wants to biospy the nodes now. His local oncologist wants to wait and rescan in 3 months, expecting that if the lymphoma is active, we'll know before that because it grows very quickly.

oh and his spleen is still enlarged, but is slightly smaller then in Oct..

because of the ongoing travel and medication expenses, once I get the paperwork done this week, I'll be doing auctions again...we received 2 donations this month which we greatly appreciated to help with costs.