As my sister puts it, getting me out of the house is a little like getting a baby out of the house - a process. I can't just get up and go. I have to plan out my day because it takes me a while to get going. Showers take longer, getting dressed takes longer, putting on my legs, going to the bathroom. It's a pain, but we manage.
CHRISTMAS: So, we went to the in-laws for Christmas. It was nice to go over there and be with all the family. Plus, there were a bunch of guys willing and able to help me get into and around the house. And, as always, dinner was great! So, definitely worth the time to get out there. Only down side - their toilet was very low. And when you have a hard time getting up from a sitting position, well - that doesn't really help. (I have a "booster" seat for use at home.) I'm not still stuck on the toilet, so I managed to get up off it. :0)
MOVIE: Yesterday we went to see Sherlock Holmes. It was a good movie but a bit on the long side for me. Maybe it was the half hour of previews before the movie... (BTW - If you're in a wheelchair, definitely go to the Riverside theater, not Sparks. There's better seats for us disabled folks.) After the movie, we went to El Pollo Loco, hung out and chatted, then came home. It was a long day, but it was nice to get out of the house.
Monday, December 28, 2009
Thursday, December 24, 2009
Radioactive AFOs?
Ok - so now that I think this blog is updated pretty well to the current situation, I can actually write as I go.
Tuesday was a rough day. I had PT for an hour and then OT for an hour. Then I had to get my AFOs (Forrest Gump leg brace thingys) cut so that I could bend my foot and walk like a normal person. (I think I'll need to take a photo to explain...). Anyways, that took some time. Then I had to go to the Cancer Institute for my mapping for radiation therapy, which is basically a test run of where to target the radiation.
First things first - cutting the AFOs. They basically took away my crutch. After they cut them, I felt so unstable that I could barely walk. It was really upsetting. Granted I was pretty exhausted from all the PT. Still, it was a mental blow to be able to balance and then not be able to. After that, I pretty much stayed in my wheelchair all day because I just felt like I was going to fall every time I got up to walk with the AFOs.
After that, I went to Joan's office to wait for the radiation appointment. At the appointment, pretty much figured that I can use my wheelchair to get to the appointment and into the machine. Which is good because sometimes I don't know if I need to bring both the walker and wheelchair so it saves some effort and time. Anyways, did you know when you go to get mapped for radiation they tattoo you? Not even with a tattoo gun - with ink and a needle? I now have three little freckle type tattoos on me. One on each side of my belly and one snack in the center of my belly. Funny enough - the sides hurt more than the one in the center. Must be all that padding. To be honest though, I don't even know where they are... I can't tell the difference between them and an actual freckle. Hope they can...
So after that, went back to Hanger (the AFO place) to see if they could make my left (bad) leg more stable because I just wasn't feeling it. Hornel, awesome guy, worked really hard to try and get them to work but in the end I was just over it. So we went home. Let's just say - I had a really, really tough time getting into the house. Emotionally - I was over it and upset because I felt like I was progressing and getting better and then this! I couldn't even walk into the house. Then I was upset because I thought that I should have known better than to let them do that because I didn't feel ready. Then I was upset because I just wanted my old ones back but they already cut those. So then I was upset because I didn't think my insurance would cover another set and so on. Just being in a pit. And, of course, Joan is the shining ray of light and tells me everything will be ok. I'm just tired and tomorrow we'll work on the new AFOs and it'll be fine. I should just know that she's right, because she is.
So Wednesday - took it easy around the house. Didn't have rehab so just didn't do a whole lot. Joan came home and we walked around with the new AFOs. It took so much effort, but we did it. And that made me feel better about them because I have to use them to get in and out of the house since we have two steps.
So this morning, after much effort and finagling I got out the house and into the car. At PT, Hornel and my therapist worked to make the AFO more stable. The problem is I'm hyper-extending my knee in order to have stability. So, either I walk bad but feel stable or walk well but probably fall. So, stable it is. They are still cut but now have a tether to hold my knee back. Also, since they AFOs are starting to get a little big (from muscle loss... although, I think they were a bit big to start with...) I'll probably be getting new ones once I start radiation - at no extra costs. Apparently, when you buy something like these - they come with some lifetime adjustment guarantee or whatnot. So, that's good...
What else? Got into the bathroom at the rehab center by myself in the wheelchair. I normally use the walker but because it was prior to the AFOs fixing, I was still in my wheelchair. So I decided I wanted to try transferring from the wheelchair to the toilet incase I go somewhere without the walker, like the movies or a store. And - it can be done! Is it easy? Hell no. You try pulling up your pants without standing up! But, I'm proud of myself for being able to do it. It makes me feel better about going out and doing things. (I think I'll save my bathroom drama for another post because it's, well, what it is...)
So, let's end on a good note. Today had PT and OT. Got AFOs more stable. Used the wheelchair in the bathroom. And walked up the stairs into the house on my own two feet (and Joan's trusty hands supporting me up the steps.) :0)
Tuesday was a rough day. I had PT for an hour and then OT for an hour. Then I had to get my AFOs (Forrest Gump leg brace thingys) cut so that I could bend my foot and walk like a normal person. (I think I'll need to take a photo to explain...). Anyways, that took some time. Then I had to go to the Cancer Institute for my mapping for radiation therapy, which is basically a test run of where to target the radiation.
First things first - cutting the AFOs. They basically took away my crutch. After they cut them, I felt so unstable that I could barely walk. It was really upsetting. Granted I was pretty exhausted from all the PT. Still, it was a mental blow to be able to balance and then not be able to. After that, I pretty much stayed in my wheelchair all day because I just felt like I was going to fall every time I got up to walk with the AFOs.
After that, I went to Joan's office to wait for the radiation appointment. At the appointment, pretty much figured that I can use my wheelchair to get to the appointment and into the machine. Which is good because sometimes I don't know if I need to bring both the walker and wheelchair so it saves some effort and time. Anyways, did you know when you go to get mapped for radiation they tattoo you? Not even with a tattoo gun - with ink and a needle? I now have three little freckle type tattoos on me. One on each side of my belly and one snack in the center of my belly. Funny enough - the sides hurt more than the one in the center. Must be all that padding. To be honest though, I don't even know where they are... I can't tell the difference between them and an actual freckle. Hope they can...
So after that, went back to Hanger (the AFO place) to see if they could make my left (bad) leg more stable because I just wasn't feeling it. Hornel, awesome guy, worked really hard to try and get them to work but in the end I was just over it. So we went home. Let's just say - I had a really, really tough time getting into the house. Emotionally - I was over it and upset because I felt like I was progressing and getting better and then this! I couldn't even walk into the house. Then I was upset because I thought that I should have known better than to let them do that because I didn't feel ready. Then I was upset because I just wanted my old ones back but they already cut those. So then I was upset because I didn't think my insurance would cover another set and so on. Just being in a pit. And, of course, Joan is the shining ray of light and tells me everything will be ok. I'm just tired and tomorrow we'll work on the new AFOs and it'll be fine. I should just know that she's right, because she is.
So Wednesday - took it easy around the house. Didn't have rehab so just didn't do a whole lot. Joan came home and we walked around with the new AFOs. It took so much effort, but we did it. And that made me feel better about them because I have to use them to get in and out of the house since we have two steps.
So this morning, after much effort and finagling I got out the house and into the car. At PT, Hornel and my therapist worked to make the AFO more stable. The problem is I'm hyper-extending my knee in order to have stability. So, either I walk bad but feel stable or walk well but probably fall. So, stable it is. They are still cut but now have a tether to hold my knee back. Also, since they AFOs are starting to get a little big (from muscle loss... although, I think they were a bit big to start with...) I'll probably be getting new ones once I start radiation - at no extra costs. Apparently, when you buy something like these - they come with some lifetime adjustment guarantee or whatnot. So, that's good...
What else? Got into the bathroom at the rehab center by myself in the wheelchair. I normally use the walker but because it was prior to the AFOs fixing, I was still in my wheelchair. So I decided I wanted to try transferring from the wheelchair to the toilet incase I go somewhere without the walker, like the movies or a store. And - it can be done! Is it easy? Hell no. You try pulling up your pants without standing up! But, I'm proud of myself for being able to do it. It makes me feel better about going out and doing things. (I think I'll save my bathroom drama for another post because it's, well, what it is...)
So, let's end on a good note. Today had PT and OT. Got AFOs more stable. Used the wheelchair in the bathroom. And walked up the stairs into the house on my own two feet (and Joan's trusty hands supporting me up the steps.) :0)
Surgery/Biopsy
Had surgery on Nov. 4th. After getting in late for the operation, surgery lasted about 4-6 hours (I don't really remember...) We were hoping they could remove the tumor. Unfortunately, the tumor is too intertwined with my nerves to be safely removed, so the doctors thought it best to only biopsy. They sent the biopsy to Stanford Med. I was in the recovery room at around 1 am and didn't get to my hospital room in the Nuerosurgery section till about 3 am. There I was told I had to stay flat on my back for 36 hours because of all the spinal fluid I lost during surgery. Needless to say, that sucked. My first roommate was pretty normal, but by about the third (I believe...) on the second night was a little more needy. She was an older woman who kept getting out of bed, walking around, removing her IV... apparently, the room I was in is where they put their more needy patients (as in mental issues) because the poor lady thought it was 1996.
After that night, they moved me down the hall. My roommate there was nice and left after a few days so I had the room to myself. Once I was moved down the hall, they started to give me more solid foods. Apparently, my belly didn't really like that because part of my intestines didn't want to "wake up" and wasn't working. So, I had to have a tube shoved down my nose into my stomach to remove the food. That was seriously one of the most painful and disturbing things I've ever had to have done. Once that was done, I definitely felt better... I was up walking a bit, but not very much. At this point, my neurosurgeon decided I should got to "rehab". I said sure, why not? (I really didn't know what that meant, but whatever..)
So, after being in the main hospital for a week, I was moved to the inpatient rehab center. Probably the best thing I could have done for myself. I learned how to do things for myself with my limited mobility and got stronger and more able to get around. I had three hours everyday of a combination of physical therapy and occupational therapy. With the PT, we worked on getting stronger. With the OT, we worked on how to shower, cook, build upper body strength. I spent two weeks there and got out in time for Turkey Day.
I am now starting up with outpatient rehab since I am still pretty weak. (I'm using a walker and/or wheel chair to get around since I have muscle weakness from not moving around much and the tumor.) I'm also not allowed to drive myself around, something about all the drugs I'm taking and the braces I have to wear... whatever.
I am going to Stanford Medical on Tuesday (leaving Monday, so let's hope the pass is pretty clear...) to discuss radiation treatment for the tumor. (I have what's called an astrocytoma. If you google it, don't get too freaked out. It's only in my spine, not my brain...) I will probably do Cyberknife radiation treatments. I'm hoping I can get it done here since St. Mary's has a cyberknife machine but I might have to continue to go to Stanford. In any case, we're really hoping this works and we'll do what we need to do...
So, thanks for all your thoughts and prayers. Also, thanks to everyone that sent cards or gifts or came to visit me. I really do appreciate the thought that went into doing that for me. ;0)
Trip to Stanford 12/7
So we made it over the mountain. Good thing Joan's a good driver because it was quite scary. Took us four hours just to get over the mountain - not even to Auburn... And snow + walker = no bueno.
Our trip to Stanford did not go quite as planned. We were basically told that Cyberknife is not the way to go - so we should do regular radiation, which will be done in Reno. Which is a good thing. I don't know what I would have done if I had to go to Stanford for treatment. Was also told to do steroids, but not the ones that go in your veins like I did previously. These are just a pill. Was also told that radiation might not make the tumor smaller or go away. It will probably only stop it from growing. So that really, really sucks. We're still hopeful that it might shrink - we're not giving up on a cure.
I'm also starting PT and OT next week. If I can get back to walking with a cane and being more independent - that'd be enough for me. So that what I'm working on and that's my goal. Still am not allowed to drive myself, so might have to bum rides from folks. ;0)
Saturday, December 19, 2009
What's in a name?
Well, in the case of this blog, it means having to get a spinal tap... but we won't get to that till later. It is also the awesome name of my Rock Band band! Pretty clever, right?
So where to begin...
I would say I was a pretty active person. I liked going to the gym and attending my kickboxing class. Granted I haven't been as religious about going to my kickboxing classes, so the day I went and noticed I couldn't really stay on my toes I just attributed it to being out of shape. I had recently come back from a cruise and was laid off, then started at a new job - so I was probably a bit out of shape.
So I decided I would work out my calves to get back in shape. If you know me, then you know I'm not a little girl. I'm pretty good sized. LOL! So I stepped onto the calf raises machine thingy. WTF!?! I could only do 30 lbs. You kidding me!?! I used to be able to do 100+ lbs.! What's going on? Hummm...
So I get home and decided I'm going to do some calf raises. I'm doing them, then my ever so honest sister asks, "What are you doing?" "Calf raises, why?" "It just looks weird. Why are you doing them?" "Because I am way out of shape. I can't even stay on my toes." "That's weird..."
So I show her and we find out I can't even do a one legged calf raise on my left leg. But I can do it on my right.
"That's not normal. You should go see a doctor," the sister said.
Older sister knows best, right? So off to our primary care physician I go.
There she tests my left leg. I can still move it and have feeling in it. She asks if I have any back pain. I tell her I have some lower back pain, probably from bending over a computer all day. She says I have muscle weakness in my leg probably from a pinched nerve - so she orders an MRI and sends me to ROC.
So, I put off going to get an MRI until after I go to ROC because I don't want to pay $1,000 for them to just tell me it's nothing - like they did with my knee a year ago. So, I go to ROC where I pay my $40 co-pay and don't even meet with my doctor...lame. They take eight x-rays of my back. Then tell me I have a slightly bulging disk and should still get an MRI to see what's really going on.
Ok. Fine. You win. To the MRI I go. First MRI not too bad. Everyone was really nice and it didn't take too long. (This was July 27th.)
The next day I get this phone call from my primary care physician's office. "We need you to come in. Today. Dr. Jane would like to see you as soon as possible." That can't be good.
Grab the sister and head to the doctor's. I'm told they found something on my spinal cord. A Giloma. According to my good friend Wikipedia - A glioma is a type of tumor that starts in the brain or spine. It is called a glioma because it arises from glial cells. The most common site of gliomas is the brain. Luckily, I only have one on my spine.
How can one word make everything fall apart? It seemed like everything I had planned suddenly got put on the back burner. Going back to school. Not any more. Going on vacation. Not any more. Going to play softball. Not any more. My whole world fell apart all around me and there wasn't anything I could do about it.
So, this blog is about what I'm going through. I figure it's a good way to get people to talk about things while allowing for an outlet for me to get my emotions and thoughts out. Plus, I figure if people want to keep up on how I'm doing and what I'm doing, this is an easy way for that. So, more to come as I start to update this thing.
So where to begin...
I would say I was a pretty active person. I liked going to the gym and attending my kickboxing class. Granted I haven't been as religious about going to my kickboxing classes, so the day I went and noticed I couldn't really stay on my toes I just attributed it to being out of shape. I had recently come back from a cruise and was laid off, then started at a new job - so I was probably a bit out of shape.
So I decided I would work out my calves to get back in shape. If you know me, then you know I'm not a little girl. I'm pretty good sized. LOL! So I stepped onto the calf raises machine thingy. WTF!?! I could only do 30 lbs. You kidding me!?! I used to be able to do 100+ lbs.! What's going on? Hummm...
So I get home and decided I'm going to do some calf raises. I'm doing them, then my ever so honest sister asks, "What are you doing?" "Calf raises, why?" "It just looks weird. Why are you doing them?" "Because I am way out of shape. I can't even stay on my toes." "That's weird..."
So I show her and we find out I can't even do a one legged calf raise on my left leg. But I can do it on my right.
"That's not normal. You should go see a doctor," the sister said.
Older sister knows best, right? So off to our primary care physician I go.
There she tests my left leg. I can still move it and have feeling in it. She asks if I have any back pain. I tell her I have some lower back pain, probably from bending over a computer all day. She says I have muscle weakness in my leg probably from a pinched nerve - so she orders an MRI and sends me to ROC.
So, I put off going to get an MRI until after I go to ROC because I don't want to pay $1,000 for them to just tell me it's nothing - like they did with my knee a year ago. So, I go to ROC where I pay my $40 co-pay and don't even meet with my doctor...lame. They take eight x-rays of my back. Then tell me I have a slightly bulging disk and should still get an MRI to see what's really going on.
Ok. Fine. You win. To the MRI I go. First MRI not too bad. Everyone was really nice and it didn't take too long. (This was July 27th.)
The next day I get this phone call from my primary care physician's office. "We need you to come in. Today. Dr. Jane would like to see you as soon as possible." That can't be good.
Grab the sister and head to the doctor's. I'm told they found something on my spinal cord. A Giloma. According to my good friend Wikipedia - A glioma is a type of tumor that starts in the brain or spine. It is called a glioma because it arises from glial cells. The most common site of gliomas is the brain. Luckily, I only have one on my spine.
How can one word make everything fall apart? It seemed like everything I had planned suddenly got put on the back burner. Going back to school. Not any more. Going on vacation. Not any more. Going to play softball. Not any more. My whole world fell apart all around me and there wasn't anything I could do about it.
So, this blog is about what I'm going through. I figure it's a good way to get people to talk about things while allowing for an outlet for me to get my emotions and thoughts out. Plus, I figure if people want to keep up on how I'm doing and what I'm doing, this is an easy way for that. So, more to come as I start to update this thing.
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