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.

an update

first off, another article (kinda funny:
Yes, it really is brain surgery from Time magazine.

So, since I am unable to find any doctor to tell me the spot on my brain is going to magically disappear all by itself, I have decided to go ahead with Brain Surgery. Really, don't you think about it with the capital letters?

Anyway, I went to see Dr. Jeffery Bruce at the Department of Neurological Surgery at Columbia University. This is one of the top neurosurgery departments in the country, and Dr. Bruce is the co-director of the Brain Tumor Center, so I think I've hit the jackpot. Also, they accept my health insurance!

Dr. Bruce basically reiterated what my first opinion said, and although he said we could wait 6 months to do another MRI if we wanted, he also used the word "inevitable" in reference to the surgery. My rheumatologist also recommend I go ahead with the surgery, so I decided to do it. Did you know you can just pick up the phone and schedule Brain Surgery? Huh!

So, it's scheduled for August 2nd. Wow.

Am I freaking out about this? Well, yes and no. Most days are good days, and I'm staying strong. Then there are bad days when I cry. Not a big surprise! But I'm more crying over the giant wrench this whole thing has thrown into my life rather than the fear of the surgery itself. I'm sure that will kick in the night before the surgery.

We're working on setting up a schedule for people to come and help out, and slowly trying to explain things to my 4 year old son. He's still dwelling on my episode from last November where I keeled over and ended up in the hospital for 8 days with a 104 degree fever and pneumonia, so I want to prepare him the best I can for this. Right now we're going with "Mommy has a boo boo in her head and the doctors are going to fix it" but I've got some books requested from the library that I hope will help elaborate a bit.

So this is life with lupus and a brain tumor. The lupus is pretty calm right now, thank goodness, though fatigue is kicking my butt when I overdo it. We're trying to figure out how to manage my lupus meds + the surgery. Doesn't seem like a great idea to go into surgery while being pumped up on immunosuppressant drugs.

That's it for now.

2 interesting applicable articles

I just stumbled across this article on Slate

Head Case: Trying to decide whether to have brain surgery
http://www.slate.com/id/2227764

It pretty much sums up what I'm going through.

___________________________

another interesting article:

As doctors find cancers earlier, more patients get overtreated
http://tinyurl.com/earelycancerdetection

ah, 6 months ago, how I miss ye...

yes, my last blog post was in simpler times when I could just be happy about a fancy new hair cut...oh how things have changed.

Last November I had an "incident" in which I woke up one morning, ran up the stairs to the bathroom and then...keeled over. I had a high fever and who knows what, and ended up in the hospital for 8 days with pneumonia.

During my time in the hospital, the nice doctors and nurses decided to put the time to good use and do 100 billion tests on my bad self. I swear, I'm pretty sure I had 8 CAT scans in one day.

So with words such as "cancer", "MS" and of course the lovely lupus being bandied about, I was having a ball! Still not sure what the whole passing out on the floor was about, but probably the 104 fever didn't help.

Fast forward to the present. It has been rough times since the hospital stay...my head is fuzzy most of the time, I have blurry vision in my right eye, pain comes and goes. I am on some nasty drugs (Cytoxan, a chemo drug), which make me feel better but destroys my immune system and makes it hard to eat.

One of the fancy things they noticed during hospital testing mania was an unidentified spot on my brain. I did go see a (crazy) neurologist back then, but he pretty much blew it off as a side effect of the lupus and thought it was vasculitis, so we decided to wait and see.

Then I went to see a neurosurgeon. He said he didn't think it was a tumor, he thought it could be MS and I should see a specialist to rule it out. So off the the MS center at St. Barnabas. After more tests (an MRI and and MRI spectroscopy), MS neurologist said it (most likely) wasn't MS and that is was a tumor and I should see a neurosurgeon (see where I'm going with this? yep, that's a complete circle baby!).

Anyway, that brings us to this morning. Somehow I was able to get an appt. with head of neurosurgery at St. Barnabas the day after I called (on his day off). These circumstances made me a bit nervous, but I was grateful he could see me so quickly.

Mom accompanied me to the appt (thanks mom!) and we learned the good news and the bad.

The bad: It's most likely a tumor. There were indications on the MRI and the MRI spectroscopy that both point to tumor = yes. Not conclusive but pretty likely.

The good: At this point it's small and it hasn't grown since last Nov. Also, it is located in the front left lobe and it has been determined by very smart people that this part of the brain doesn't do anything (huh?).

The other bad: Recommendation -- Brain Surgery.

The doctor says that the spot should be biopsied and while they're in there, they might as well just cut the whole darn thing out. I am still wondering what happened to the good old days of "wait and see", but there are risks associated with that (the tumor could grow and spread into places that it actually would cause problems, or could grow large enough that chemo and/or radiation would be necessary if they did surgery later - the tumor is small enough now that chemo/radiation would most likely not be necessary).

Of course having lupus will make any surgery that much more complicated, still not sure the details on that one.

So, lupus, I'm sorry but you're going to have to take the back burner for a while. Yes, I know that you have been totally a pain in my ass (sometimes literally) for the past 3 years, but unfortunately I have other things to think about for the time being.

I guess that's all I can say at this point. I keep trying to figure out a reasonable status to post of Facebook, but just can't come up with something that works, so will skip it for now...hi I'm kristin and I have a brain tumor seems a bit harsh...

I'm sure this hasn't sunk it yet, I keep looking around for Candid Camera to pop out of the closet. But what the heck, if I panic it's not going to help anything.

I'm glad I found a decent doctor and that he's fairly close by. He was very clear with his thoughts and he answered all of our questions.

Alright, that's enough babbling for today. I'll keep you posted...