it's been a long time...

just a quick update, it's been a while...

had brain tumor removed just over a year ago...after the surgery, actually felt great, which was quite surprising because the docs all said that removing the tumor wouldn't really affect anything...but looking back, I think the feeling better part was mostly from the high doses of steroids I was on...kindof a bummer that I wasn't miraculously cured

I'm a little fuzzy re: what happened over the last year, but the good news is is that I'm feeling pretty good these days! :) I started taking methotrexate (7.5 mg once a week) a few months ago, and it seems to be helping (finally! something is helping!) I'm also on prednisone (10mg) and lopressor (beta blocker) and various supplements and vitamins. It's nice to finally have a combo that makes me feel pretty good...still have fatigue in the afternoon and some fuzzy brain action, but so much better than before...no skin involvement and no joint pain (knock on wood).

I did attempt to get a job about 6 months ago at the local library, but that was a bust. I was doing interlibrary loan work, and it was just too much (wrapping and unwrapping books, packing and unpacking crates of books...). So that only lasted a few weeks, hopefully I'll get back into a library job next year, maybe volunteer in the meantime.

I did have a bout or two in the hospital this year, which was a bummer. Had pneumonia once (finally got the vaccine, hope it works...), and had cellulitis about a month later (did *not* want to go into the hospital for that, but they thought it was necessary :/ ). Anyway, fine now, though dealing with a pulled wisdom tooth, ugh!

hopefully, I'll start updating this blog more often, though I've been fairly blue lately, so don't want to write a bummer blog...send me cheery messages! :)

surgery is done...and I'm home!

Just a quick post to update...

I came home on Wednesday, just 48 hours after the surgery! Totally crazy, went in the hospital Monday AM and was home by Wed early afternoon. Had to get repeat MRIs done Mon. AM since the ones they did the previous Thursday didn't work, but the Mon. ones came out OK.

Surgery went well, the tumor (or whatever it was, we'll find out more next Tuesday), was the size of a ping pong ball, slightly bigger than expected. But they were able to remove it and I'm walking around like a champ. Taking it easy for the rest of the week, and then go to the doc on Tuesday to have the staples removed and discuss results with Dr. J.

Not too much else to report except I was already out of bed walking on Tuesday! Very exciting :) Photos to follow soon :)

--k

surgery-eve

It's been a pretty crazy past few days. The pre-op meeting was...well, it was long. We really had no idea what to expect, but I did not expect a full day medical marathon of tests - blood tests, MRIs, a physical etc. It was a loooong day and we *still* didn't learn more details about stuff. Well, we did learn that we should be there at 8am on Monday for a 10am surgery, but that has been contradicted and turned on it's head all over the place since then.

No time to write now, gotta shower and go to sleep to rest up for the Big Day!

We're heading in to arrive at 7:30 and the day will go from there. I will be supported by lots of family members and everyone is praying for me.

Wish me luck, I'll update as soon as possible :)

tomorrow - pre-op meeting

Tomorrow is the pre-operation meeting with the doctor...holy cow! Ummm, starting to feel a bit real here! I was not in a good place last night, I was in a lot of lupus pain, and wondering why I had to deal with so much pain, a trip to the oncologist today to deal with some swollen lymph node issues, AND having brain surgery next week. I mean, c'mon, shouldn't there be limits to how much someone has to deal with??

Feeling somewhat better today. Tylenol helped the pain and the oncologist still doesn't think the lymph nodes warrant worry.

Things are pretty much under control, though it's going to be a busy weekend tying up lots of loose ends. A last minute complication has me going to the cardiologist on Friday so he can give me a clean bill of health for the surgery.

Hopefully we'll learn a lot tomorrow and the details will fall into place. It has been frustrating now knowing very much at all about the surgery -- we won't even know what time the surgery is scheduled for until Friday evening.

life in a holding pattern

so, I'm pleased to say that I actually feel ready to look for a job! sure, I'm thinking part time, low pay, I can't really do anything challenging right now, but still, it would be nice to get out of the house regularly and bring in a little money.

then, in steps the Brain Surgery...oh for goodness sakes, now that I finally feel a *little* better, I can't apply for any jobs or make any plans because I have to have Brain Surgery?? Can you imagine applying for a job...you could have a little asterisk at the top referring to this note:

*Kristin will be available sometime around the end of August, beginning of September. She's hoping her hair will have grown back by that time and also that she will be thinking and speaking clearly. She just has to go through a little Brain Surgery, but then she should be fine. Really!

Hmmm, perhaps that's not the best way to sell one's self...jeesh, life's complicated!

make a wish? ha ha ha!!

so, today is my 38th birthday. wowee! with so much else going on, I really didn't care if we did much to celebrate this year...

around 7 o'clock my doorbell rang. I had been waiting for a delivery (soft hats for after the surgery!) so I was *sure* it was the UPS guy, yay! I yanked the door open, and was a bit gobsmacked that instead of my friendly delivery man, it was my sis (down from NYC) and my mom and step-dad bearing a delicious chocolate cake - complete with candles! after a rousing rendition of "Happy Birthday," I'm about to blow out the candles when someone calls out "Make a wish!" ----
....
silence
....
and everyone just bursts out laughing! snort!

Where would I even START to make a wish at this point!?!?

Anyway, kinda funny.

lupus...tumor...lupus...tumor...

...sometimes it's hard to figure out which one to worry about.

Since I have surgery scheduled in 2-1/2 weeks (gulp!), I suppose the tumor will have to take precedence. Or I could just ignore both things and spend all day surfing the web or staring mindlessly at Facebook...

But not when there is an almost-4-year-old running around the house! No rest for the chronically-ill-who-also-happen-to-have-a-brain-tumor!

This afternoon we decided to make a trip to the mall (a fairly rare occurrence due to our dearth of moola). The trip was a bust due to small child experiencing terror when presented with the Automatically Flushing Potty! So, quick stop into the Lego Store and home we went. Sigh.

But at least I am well enough to be attempting such an ambitious trip. This weekend we will be attending my husband's work picnic. Thinking back the past two years, last year I was too ill to attend, and the year before I hopped from shady spot to shady spot because being in the sun made me sick (love ya lupus!).

So that's pretty much what's going on. Working hard at scheduling enough help for after the surgery, and dealing with the complication of the surgery being in NYC (about an hour's drive from home). We have lots of family, friends and neighbors who are happy to help out, thank goodness, so at least that's one less thing to worry about.

Off to put the boy to bed. G'night.