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.
Wednesday, July 28, 2010
Friday, July 23, 2010
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!
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!
Wednesday, July 21, 2010
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.
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.
Thursday, July 15, 2010
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.
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.
Thursday, July 8, 2010
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.
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.
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