One Year Update - Kinda

Ok - as is standard practice for me these days when it comes to my blog - I apologize for not writing more frequently. Although, when I met with this big blog guy, he said to only write when you have something to say. So, I guess I'm keeping up with that idea.

Let's just cut to the chase and give you an update. My one year anniversary of having back surgery to biopsy my tumor was November 4th. Up to about a week before that date, I was kicking some serious ass. I was walking around, driving myself. You name it. I was doing it. I was doing so well, I even got discharged from Physical Therapy. Woot-woot! That was a Wednesday. The Friday of that same week - I thought I was going to fall over walking from my office to my car. What the heck?

At first I thought it was the crazy muscle relaxers I was on to help stretch my legs out. So, I started taking less and called my doctor to get off them. Not worth it if I can't walk at all. The doctor that prescribed them didn't call me back quick enough so then I went to my amazing primary care doctor - Dr. Elizabeth Jaffe - and got in to see her. It was about time for my follow MRI anyways so she suggested I move up my follow up MRI to see if there is something else going on since my back had also started to hurt again.

Me, my wheels and Belle.

So - I had another MRI in November. (I think that brings it up to like 12 or something...). Then off to my neurosurgeon - Dr. Jay Morgan - for the results. (Now - at this point I am not walking because my legs are too weak and I don't want to fall over. So, I'm using my wheelchair and having the sister drive me around.) At the doctors I'm told two things.
1. Your original tumor is still shrinking.
2. But now there is something above where we radiated.

It could be rouge tumor that we didn't get the first time or "fall out" from the radiation. (Is it bad that I kinda giggled when he said "fall out" because I thought of the video game...?) Anyways, from what I got out of it being "fall out" is basically some side effect of good cells getting blasted by the radiation and now they're freaking out. My neurologist then tells me that he's going to show my MRIs to another doctor to get his opinion and then we'll have a game plan. Until I go back in a few weeks - back on to steroids I go. Yea for drugs. Bleh.

I just had my follow up with my neurologist and was told two things again. We're going to get another MRI with hopefully a better few/contrast to be certain - but it's probably rouge tumor. So...
1. We can biopsy and then radiation.
2. We can just do radiation.

Hummm... let me think about this. The last time you filleted me open I was in the hospital for three - four weeks. I think I'll just do the radiation. Thanks.

So - here I am. Just waiting for another MRI and a game plan. Only this time around I feel so much better about where I am mentally and physically. Which might be weird to hear since I'm in a wheelchair and not driving myself or walking. But it really is better this time around. My work is very accommodating - my co-workers take such great care of me and help me - and it's not like I haven't been here before. So, mentally I'm not having to stress about NOT having a job, or income or insurance or any of that crap that can wear on you. When you have to go through something as physically demanding as radiation or chemo or being in a wheelchair or anything of the such - it's taxing. And the last thing you want to do is worry about how you're going to pay for things. So, I do live a blessed life and God is gracious and looking out for me. I know that no matter how bad I think I have it, someone else is suffering more. So, I will be thankful for all that I have and where I am.

I recently made a donation to two great charities that helped me when I was going through radiation last year and wasn't working. They helped pay for my COBRA, gas for my car, ect. If you would like to make a donation to help others that need financial assistance while trying to heal - here they are.
Reno Cancer Foundation - 1155 Mill Street, Reno NV 89502
Nevada Cancer Institute

Workin' 9 to 5

Ok - not really working 9 to 5.. more like 8 to 5.

I've been a bad blogger and haven't been keeping up on what's been going on. So a good place to start is the fact that I landed an awesome new job! I'm a Graphic Designer and it's great! I love it! I even have my own office. :0) Best part is that insurance started from DAY ONE and there is no pre-existing clause. Someone is definitely looking out for me.

It was such a weird experience to go back to work full time after not working for six months. Weird. Six months ago, I could hardly walk and was in the hospital. After six months of Physical Therapy and Radiation - here I am. Walking. With my AFOs, but at least I'm walking. I still get really tired and hot from walking but life really is so much easier when you can walk. Makes me that much more thankful for my working legs.

I'm still going to Physical Therapy twice a week and just had my first session in the pool! Man - is that water some resistance. At least it's fun and nice to get in the water during this hot weather. I will say that I'm not very good at swimming without a noodle... stupid ankles/feet aren't quite there yet. :0)

Other bummer news - I have the most heinous heat rash EVER! On both of my legs from my AFOs. (You can actually see the outline of where the braces go.) I guess that's what you get when you wear socks up to your knees and plastic braces wrapped around your legs pretty much everyday. Good thing I have a dermatologist appointment next week. Hope they can give me something to help it.

Good news - had my latest MRI and the tumor is slightly smaller. Woo-hoo! It's not gone - but I'll take it. :0)

Get Your Grub On

Ok, if you know me, then you know I like to eat. So consider this my Food/Accessibility review of places in Reno. I'll add more as I think of them or venture out. (Most of these places are Asian restaurants, not too sure why...)


RATINGS KEY: 
* = Really, I paid for that
** = Eh, it wasn't that bad
*** = Now we're talking
**** = Why aren't you here? This place is amazing!

Ijji Sushi - Sparks ****
Get your sushi on at this place. I mean, look at the pic my friend Lacey took. And, yes - it is that yummy (although, much more colorful in person). The price is right for all you can eat at $15.95 for lunch and $20.95 for dinner. I always opt to pay more for dinner even at lunch because I like getting muscles and the Blush roll. 


So what exactly do you get for your cold hard cash? (Really, who carries cash anymore? It's called a Debit Card.) Well, when you get all you can eat, you also get your choice of an appetizers (with a few exceptions). They also have a "salad" bar of sorts for you to help yourself to cucumber salad, spicy crab salad, fruit salad and edemame (not really a salad, but it's green). And to top it all off, you get your choice of ice cream for dessert. (I recommend the green tea.)


As for accessibility, this place is way easy to get in, sit down and move around in. It has a large, open floor plan which can easily accommodate a wheelchair or walker. There are tables and booths in addition to the bar. The restrooms are also very accessible and easy to get to. The only down side is that there are only two handicap parking spaces in front of the building. Other than that, the staff is friendly and always ready to help out. Check out their site here.

Hiroba Sushi - Skyline ****
Yea for sushi! I like to think this is a hidden jewel that only local know about. It's located a bit off the beaten path but worth the trouble of finding it. If you like a really AWESOME deal for sushi, this is the place. I can't remember how much it is for lunch (probably $16) but you can order everything on the menu. There is not a different menu for the dinner price (which is probably around $20). Even better, depending on the days, they have free beer or sake with all you can eat. Same as Ijji, this place offers appetizers with your sushi and dessert. Here for dessert they offer authentic Mochi Ice Cream. (Avoid this if you don't like certain textures. I like this, but then I'm Asian...) Another good thing about this place, besides the food, is that the staff is very friendly. They greet you with a resounding "Hello!" when you walk through the door.

As for accessibility, this place might be a bit more difficult to get in with a wheelchair since it is a rather small sushi place. It's not too tightly packed, so it is possible to get in to one of their tables. Again, only two handicap parking spaces, but they're right outside the front door. Check out their site here. If you're on facebook, become their friend/fan to stay up on all their specials.

CaiE's Oriental Cafe - South Meadows ****
Dim Sum anyone! I love me some pork buns, yes I do. These were super tasty. We did their Yum Cha - which is kinda like a Chinese brunch or tea time. Basically it's the experience of drinking tea and eating dim sum. Only, we didn't even get any tea - we had coke. In any case, there are several dim sum items you can choose with the all you can eat. We also ordered some extra a la carte items, but really you don't need to. The amount you get off the all you can eat menu is plenty. I recommend the pork buns (think of this as a BBQ pork sandwich, only stuffed in a roll), egg buns (these are sweet, like a custard inside), and the spring rolls which are fried like an egg roll. (See I liked the pork buns so much, there was only one left as evident in the pic.)


As for accessibility, it is also a very open, roomy place. They also have tables, booths and counter. The restroom is AWESOME because it is large, clean and have plenty of grab bars. The staff is also nice and the decor is modern neutral. The only downside is that the handicap parking is located on the other side of the building, near the Papa Murphy's. So, it's not too far but wish it was closer. Check them out here.


BTW - CiaE means "white swan" and is the name of the owner. At least that's what their website says.


Dynasty Chinese Restaurant - California Ave.****
Conveniently located off of California Avenue near my old gym (go figure), is this great Chinese place. They have everything you're looking for, such as General's Chicken and Lemon Chicken plus great pot stickers. Add in to the fact they they have lunch and dinner specials starting at around $6 and you're good to go. 


As for accessibility, it does a pretty good job. There are tables that are easy to get to and it's rather open. I am not sure about the restrooms (didn't check them out, sorry). There are two handicap parking spaces right in front of this place. Click here for more info. 

IHOP - Spanish Springs **
(Let me preface this review with the fact that I was still under going radiation when I came here, so I was kinda over it from the beginning.) I can't even remember what I had - crepes or something. And hash-browns, yum. So, why the low score? Because it's IHOP people. It's not some fabulous Reno only, family owned place. It's a chain - and this one was NOT very wheelchair friendly. 


Basically, the tables are WAY too close together. I could hardly get into it. I actually had to have people get up out of their chairs to make room for me. Really IHOP? Come on. I expect more out of you. I figure your target audience is an older crowd and they probably have a hard time getting around, so why is it so cramped in there? Geez. As for parking, I think they also only had two parking spaces reserved for handicapped folks. The restrooms were fine. Check them out here.


ZOZO's Ristorante - Lakeside ***
Get your pasta on at this local favorite. It's a bit like Cheer's in the fact that the owner (if you go there enough) knows your name. All I can say is their garlic bread is the most buttery, tasty garlic bread ever. It's a bit pricey but worth it. Definitely a good place for date night. I will say my soda glass was left unfilled for some time - glean from that what you will. 


As for accessibility - eh. I had my walker so I was ok but I think if you had a wheelchair you might have a hard time getting around. The tables looked to be a bit close together and I did not check out the restroom. As for parking - nothing near at all. Ended up parking in an end space. Check them out here.


PS. The leftovers were even better the second day!


CJ Palace - Spanish Springs ****
Ooooh, I like this place too. They have really great Chinese food but also some tasty sushi. I recommend the sweet and sour shrimp. I believe if you want to do all you can eat sushi, you have to sit at the bar. Otherwise it's a la carte at your table. They also have some good lunch specials, so take advantage of that.


As for accessibility, it has plenty of tables although some seem a bit too close together so it might be a bit more difficult to maneuver. As for parking, there were only two spaces and both were taken when I went. Luckily, I was using my walker and got a space close to the front. As for the restrooms, again - didn't venture in. Check them out here.

Sad News - Alicia

Alicia Parlette, whom I went to school with, is in the hospital dying from cancer. She fought hard and bravely for five years after being diagnosed with a rare form of cancer in her hip, breast and lungs. She was working for the SF Chronicle when she was diagnosed and was asked to document her story for the paper. (Read more about her story here.) 

Whenever I think about other people with cancer (especially those I know with it), it makes me really sad and mad, but at the same time grateful that I am doing better. I understand what it's like to get the news that "they've found something", to live off of hope and the understanding that, at least for me, you never really know what's going to happen. I've been told that the uncertainty would drive most people nuts. But then again, isn't that life anyways - you can't predict the future. All you can do is keep moving forward...

My thoughts are with you, Alicia.

Wheelchair and other things.

Ok! I finally got my new wheels, check 'em out (the cat wasn't too happy with me...). I do get a lot of comments on the fab green color. I got this from MedTech and it's perfect - it's a proSPIN 4x from Invacare. Smaller than the "other" one, lighter and just plain cooler. Best part; it has a butt pillow! A $450 one at that. The cushion is an Invacare InTouch Flovair. It is basically temperpedic foam with a gel/air topper. Super comfy. Normally when I would go places, I'd transfer to another chair. But this cushion is so nice, I don't really transfer out unless I need to.

Let's talk about all the cool features of this wheelchair. First, it only weighs about 28 lbs. So, it's about 12 lbs. lighter than the other one. We already talked about the cushion, but what a difference it makes. The back of the chair is shorter and I can adjust the tension as needed. I also added anti-tippers since some ramps a are little steep and freak me out. Just a safety thing. I also got swing away arm rests that are lower than the ones on the other chair. I opted for this because it makes it easier to get in and out of the chair. I also opted for the foam covered rests instead of the padded ones because the cover on the padding can crack and break with too much wear and tear. I got no puncture wheels. They're a little heavier but I won't have to worry about flats. I also got larger caster wheels on the front to help go over bumps/edges and carpet. The chair also has swing in or out leg rests. So awesome and convenient! Best part is, most of these items come off for easier lifting. The wheels pop off, the arm rests come off, the leg rests come off and the cushion does as well. The whole things folds up and can easily be transported. So, in short - I'm really happy and excited about this new chair!

Speaking of being in this chair, let's talk about the kid at Subway who is much braver than I. Basically, went to Subway to get a sandwich - so good! Yum! Anyways, went to pay and he asked me, "So, are you paralyzed or  just hurt?" Ummm... how to answer because technically I have "partial paraplegia" - so kinda paralyzed... but I'm also kinda hurt. I didn't feel like explaining my past year to him, so I said, "Just hurt." He replied, "Oh, ok. Because you look like you're just hurt, not paralyzed." Oh. Ok. Apparently I need to work on my "paralyzed" look - whatever that is. I wasn't upset or offended by his comment. I was just taken back by how bluntly he just asked. I mean, how many times do we see people in wheelchairs and we want to know what happened but we're too "politically correct" or polite to ask? So we just look. And that's probably the worst because, guess what - I can see you looking at me and asking me with your eyes, "What happened?" Maybe I should just get a shirt that says, "I might not be able to walk, but I can still see you." LOL! It's fine, really.

But, let's also talk about how inaccessible the world really is if you're in a wheelchair. Doors are hard! I still have issues opening some of them, especially the one to the bathroom at the Cancer Center - in the hospital! What's up with that? Then the things that are high up, like at the grocery store, yeah... Aisles that are too narrow or there's too much stuff in the way (hello World Market, I love your store, but move your shit. Big girl coming through.) And stairs! I can't even go to my friends new place because she's on the second floor! Then there's the bathrooms. Dear able bodied people, please do not use the ONE handicapped stall when you have, oh, I don't know, five other ones to use. Nothing erks me more than having to WAIT for someone who can actually WALK to get out of the handicapped bathroom. Yes, I know it's bigger and well, you had your toddler with you, but seriously? Get a clue and be more considerate. And then able bodied people that "BORROW" a disabled placard to get a closer parking spot or sit and wait in a disabled spot - WTF? All of us with those placard had to EARN them by either being old or actually disabled. And guess what - we actually need to park that close. So quit being rude and use your legs that actually work.

I think that's all the venting I need to do today. So, just stay out of my bathroom and parking spaces and we can all continue to get along. LOL!

Wheelchair

Who's getting new wheels? This kid. Well, at least once insurance approves it.

I am so excited about getting it. Here's a link. It's going to be the Quickie 2 with an awesome butt pillow, foot-rests that swing IN and OUT, arm rest that swing away and are low enough that my shoulders aren't in my neck. And it's going to be a sparkly green (pretty close to the Toxic Green)! And best of all, it's only going to weigh 28 lbs. instead of the 41 lbs. this beast weighs (we weighed it at the Cancer Center...). Also, the wheels pop off, so if I get to the point where I can drive myself, I can just pop off the wheels - put them in my car, then lift the rest into the car and off I'll go! Can't wait!

The Results are In

And they're inconclusive! LOL! Apparently I'm still radioactive. The radiation has made my spine and spinal cord still swollen/inflamed. With the image on the MRI, we can't tell where the tumor is because it shows up the same as the inflamation - of course.

Anyways, I have a follow up with my neurologist and another MRI in three months to see what's going on... so I guess that means I'm doing ok for now - nothing too immediate to worry about.

Photos

Here's some photos. The first is my mom and I trekking through the snow, from the rest stop, on our way to Stanford Med. Joan called this one "sledding." Rather appropriate I suppose. That's one nice looking rest stop, right?

The second one is of the fab new ramp my bro and father-in-law built for me in a day! It's great for the wheelchair, not so much for using my walker.

Thankful

I haven't posted anything in quite awhile. Sorry about that. Basically, I am done with radiation! Woo-hoo! It really wasn't that bad, just kinda hard having to go everyday. Luckily, everyone at Renown Cancer Center is really nice and understanding. I'm actually going to miss seeing the techs everyday.

The good news is things that haven't moved since before surgery are moving! I can actually wiggle my toes, I have some movement in both my ankles, I can bend my right leg up towards but butt while laying on my stomach, walking is easier than before, and I can get off of lower seats easier while sitting! It's amazing, everyday I feel like another part of my body wakes up and says, "Ok, I'm ready to work again." I just can't believe it. I feel like it's a miracle. Joan did say the radiation would work, and I think it is. I guess we'll know for sure next week since I have an MRI on Saturday. :0)

My mom was up here taking care of me while going through radiation. We talking about a lot of things, one being God. I think she's right. People turn to God, usually when we need something or are going through a bad time. I would probably be one of those people. I'm not overly religious but I have to believe because healing myself is beyond me. This is the hardest things I've ever had to deal with because I can't fix it on my own. I've always made my own way, but I can't with this. I have to rely on faith and doctors and technology to make me better.

This whole experience makes me realize just how lucky I am to have done the things I have and to have such great friends and family in my life. A lot of people have reached out to me and have helped me and it's just so touching that people can care about me that much. The other day, Mom and I were watching the news and they were doing a story about the homeless at the tent city. There was a girl there, in a wheelchair, whose name was Jessie. She had just gotten out of the hospital after surgery when her dad died. She was left with nothing and no one to help her. She was living on the street. It made me really think about how easily that could have been me.

So let us all be thankful for the lives we have, the people in them and cherish each moment. Let us be thankful for hope, faith and miracles.

Kitty Meow

Any cat lover will enjoy this link. http://www.catswhothrowupgrass.com/kill.php
Super funny and completely true.

Since I've been home so much, it seems that our cat, Belle, is my constant companion. She now sleeps with me, wakes me up in the early AM before I want to, and just enjoys hanging out with me. Needles to say, it's kinda nice having a furry companion that makes you laugh because she's just being her.

Radiation

This week is the start of my 28 day radiation treatment. So far, it's not bad. It's only the third day though...

I'm undergoing Tomo Therapy radiation. (http://www.tomotherapy.com/) I was a bit nervous at first since I didn't really know what it was going to be like, but it really wasn't that bad. It's basically being stuck into a donut type machine with a bigger hole than an MRI machine, which is nice. I was a Waitbit worried that it would be really tight in there, but it's not.

Also, it helps that all the nurses/doctors are super nice. But I guess when you work at the Cancer Center, you probably should be an extra nice and understanding person. Anyways, the two gals that run that machine are funny. They have music playing and said I could bring in a CD if I wanted too. I'm only in there for about 15 - 20 minutes when I go in, so that kinda seems like a lot of work. And so far, I like the music they have. The first day, it was instrumental, spa like music. The second day, it was Michael Buble. Then today, it was Michael Jackson!

Treatment basically goes like this - check in 15 minutes prior to get a wristband that no one looks at. Go to the special radiation waiting room with no clock. Read Reader's Digest till the nurse comes out to get me. Go into the room and somehow manage to transfer from my wheelchair to the rather high platform with some assistance. Lay down, making sure my head is in the right spot. Grab the bars above my head so I'm inline of where I need to be and I don't move my back. Have the nurses scoot my body around so the tattoos I got line up to where they need to be. Have them help me lift my legs up so they can put a support under them so my lower back doesn't hurt. Then, into the big donut I go.

Radiation will hopefully stop the tumor from growing and shrink or get rid of it. I really hope this works...