Happy New Years EVE

It is the end of a long year. We've made some new friends and worn out some old ones. It's sad thing, but I guess it just how it is. People get tired of hearing about the same old things...not enough time, not enough money, another bill and another doctor's visit. I'd be lying to say that some of it hasn't hurt, but let's get real..this is hard for us and we struggle to keep it together...can't really blame those who just walk away and don't want to hear it anymore...OH wait..yes I can...Just how I am...I want to be understanding, but that ran out a long time ago. One bad hospital meal at a time.
We've had a crappy year...it's tired my marriage, it's tried my resolve, it's pretty much tired everything. And I can say with out doubt....acceptance just is NOT in my genetic make up.
Brian had his portacath removed....not very gracefully, by a surgeon that I will not allow to touch him ever again. A sad and frightening replacement to Dr. Mosca for sure....yanking and tugging then.."oh it's stitched in"...concerning since SHE SHOULD be putting them in as well....that caused some unnecessary pain for him. :(
He is also going to start physical therapy to help with the neuropathy...more on that later...
in the meantime....may you all who still read and care, have a happy and healthy New year. May you be blessed to NEver walk a mile in our shoes or deal with a sick child.

Feb update

I know, it's been a while, but we're taking time to adjust to our new "normal" life, as well as the fact that we've all been passing viruses around since Thanksgiving.

Brian is still tired all the time, and we're starting to see some of our old "post chemo" friends...the fungus is back on his scalp and he's having short term memory issues. We used to do some memory games to help with this, don't know how receptive Brian will be this time, but we'll give it a go.

Brian and I have been spending lots of time talking about the spring garden and solar panels and other sustainable projects. He's really quite brilliant and has some wonderful ideas.
He's struggling with the mood swings, but is steadfast in his decision not to take medication, and while I don't agree with it, I am giving him my full support and we're agreed on a feedback system. It seems to be working well enough for now. If I sound skeptical, it is because we've been here so many times before. But We've discussed this and talked to his doctor about it as well, and if the time comes he needs medication, or isn't coping well, then we are agreed on a psychiatric consult.

He still needs to get his porta cath removed, it has been rescheduled twice now, once due to Scott's car accident and once due to an ice storm. Let's hope third time's a charm.

We see the oncologist at the end of the month and they will evaluate the cancer and hopefully confirm it remains in remission for now. I think they will be doing a CAT scan this time rather then a PET scan.

Once this has transpired, I'll update again. Hope everyone is well.

Jan update

So, things have been okay...Brian has been sick with a terrible cold, I too have it. It really has knocked us both out for a good week and a half...
The pain in his side has gone away and I think it was gastrointestinal in nature, and no cause for alarm.
His port a cath removal surgery is rescheduled for 2/2 giving him time to get over his cold.

Scott has to have additional eye surgery on Wednesday to reduce the retinal blister/damage.

all in all the stress has been reduced some, and we are slowly working to get things back in order...it will take time, and there is no rushing to find our new "normal" I know this from previous experience.

just need to get done each day what we can, and not fret that which is left for tomorrow...though my goal is to get my etsy store up and running in the next few weeks...so stay tuned...

nerve wracking complaint

well....it's been a year since the nightmare began and Brian came to me tonight to show me a spot right across from where the necrotic tumor was that hurts and looks a little puffy...

now, he'd already been rubbing it and bothering it, so it is hard to tell anything at this point, and it hasn't been long since the PET scan, but I'd be lying if I didn't say that I am a tad bit concerned...last time I didn't give into panic...

so say it with me...I will not panic....I will not panic....I will not panic...

yeah, I feel better now...how about you?...if it is still bothering him on monday I will call the dr....

post christmas update

Christmas fell flat,it was my fault, I have had a virus all week and just didn't feel up to it.
Brian was really cool about it, he always worries about me when I am not 100%. He and Scott had a little together time and watched some tv, that was good.
Brian then of course decided to share in my virus...but we're both feeling better tonight. But he's pretty tired.
Scott and I were married 26 years ago today...what a long year this last one has been. Stephanie gave us a $20.00 card to olive garden, but with my stomach just on the mend, I do not think eating out is a good idea at all...and Scott has to work anyhow.
if I feel up to it, Brian wants to set up a work table to learn to solder....he is showing quite the interest in my tools...DAMN IT.... :)

Happy Holidays

Brian and I stayed up and enjoyed the eclipse on tuesday morning, (early) it was wicked cold, but the eclipse was well worth it.

Brian has been kind of down in the dumps, but he's starting to feel better, and back to researching solar panels...he really wants to build some. Health wise he is doing well...but he gets very tired after about 5 hours of a normal day and it frustrates him even though the doctors say he is doing really great for where he is at.

Today Stephanie and I baked cookies and we all worked on our regular chores...but we got a late start at it, so we're watching the grinch and cleaning the carpet at the same time..

Even though we couldn't get a tree, I did manage some lights in the living room in an attempt to be festive.
I would have loved a completely low key dinner for xmas, but apparently Stephanie comes with a Tim now to all events...but it's okay.

As you all know Scott and I will be married 26 years next week...it will be another low key celebration, but we're slowing getting our groove back. We just need a crisis free couple of months I think.

time to go, Stephanie just came in with her hands and arms all hived up...did I just mention some crisis free time?....
thank goodness for benadryl....

a christmas gesture

We're pretty worn out from everything. It's kind of hard to get into the holiday spirit as well...and we don't really have any extra money to spend, I cant really justify the expense of a Christmas tree this year.
But as that might be the case, I do have some dolls from my collection that in the current market are not sale able on ebay, so I have decided that if we can't really have a Christmas, we can bring on to someone else who can't either. Christmas is the one time where I do try and do something nice for people rather then my more favorite volunteer work of animals. So I am working on finding a local girl (or boy) who wouldn't have Christmas otherwise. If I can't find someone local, (I expect I can) then I will go down to the pediatric ward at Lehigh Valley Hosp. and bring some thing there...(we've done the hospital thing many times since Brian's first admission to Robert wood in 2000)
This is the first year in while there is no shopping, very little decorating in a lot of years, but hopefully this time next year things will be better. It's just stuff anyhow...

Brian is pretty tired this week, but we went to breakfast this morning where Stephanie works, they have a little family breakfast at the holidays, and it was nice to get to meet all these people I have heard so much about, as well as see some of her coworkers we've already met. We had a good time.
I am sending out cards this xmas, but I'll be in touch with all of you who have sent them shortly. Thanks for the well wishes and updated kids pix...