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.

">

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.