Sunday, May 31, 2009

End of Week Two

Stephanie has been in the hospital for 13 days this time. Right now there isn't a discharge date in sight, but the doctors are monitoring her daily. She is technically due for chemo again on Friday, we haven't heard whether or not it will be delayed again. So out of the past 42 days Stephanie has spent 24 in the hospital. Hopefully next time wil be much better.

Grace and Peace.

Monday, May 25, 2009

Another Surgery Down

Stephanie had surgery today to correct the SMA Syndrome she's been suffering from the past month. Originally we hoped it could be corrected laproscopically, unfortunately that wasn't the case. The doctor made a small incision and basically removed the contents of her abdomen and put them back in lower to remove the small intestine from the area where the areteries were pinching together.
Everything went well and Stephanie is now recovering. Unfortunately she can't swallow anything, which is really tough for someone as addicted to ice as she has become. She also has a PCA pump again, which is a pretty good thing for her.
In less important news we got moved yesterday to a larger room with a stretcher for me to sleep on. Not quite as nice as the original room she was in a few weeks ago, which was pretty much a suite, but still much nicer than the pull out couch to sleep on.

Saturday, May 23, 2009

Shining A Little Light on The Subject Matter Of My Rare Diseases

Well, It seems like I've kept everyone in the dark as to what has been going on! I'll try to keep a coherent thought going on here, but just know you are forewarned. I had chemo on Friday and it was really no big deal. My doctor ordered a ton more fluids to try and stay ahead of all the problems I was having the first time around. It seemed to work like a charm. I woke up and ate some yogurt and milk and then had some broccoli and potato pureed soup. It had become a staple. Well, I did pretty well. I ended up staying in bed all day on Sunday quite nauseous and sleeping and popping pills as I could. I was up for most of the night Sunday night with my bucket, unable to keep anything down, including water. 

So, Monday morning we called to go in to the oncology unit for fluids (my bloodwork showed I was barely dehydrated so it wasn't that!) So, I got some zofran, ativan, decadron, and fluids. After all that I still wasn't feeling well, so they went ahead and admitted me. I again had my stomach pumped (it's still being pumped as I write this). I guess it was later Monday that I had a bunch more tests run and I was woken up on Tuesday with the results??? Or maybe they did all the testing on Tuesday? Or Monday afternoon at some point saying they needed to run more tests to confirm if it really is my SMA again, because usually when they're certain they're right they're usually wrong, but they are definitely right this time. I apparently have this huge blockage on my small intestines.  So, long story short for the night, I haven't been able to eat anything my mouth since Monday except liquids because they get pumped right back out...which means yes, I have a NG tube in my nose to my stomach.

On Monday I will be having surgery to correct the problem by moving my small intestines out of the way and by putting a feeding tube in my stomach and my small intestines to make me gain weight faster. 

But regardless, I'll finish the story tomorrow, it's bed time now!!! 

Friday, May 15, 2009

Sitting in the chemo room hanging out watching the storm and
 playing on the computer and thinking about taking a nap.

Warner thinks he's a patient today. He's taking advantage of the 
 snacks that I can't eat yet and the empty recliners for once.

For the first time ever there's a younger girl in the chemo room but she's at the other end of the room and sleeping. It's been a pretty uneventful day so far which is definitely a good thing! I'll post a better picture of the bump above my eye later on. It's not too bad but it definitely hurts. I took a Vicodin last night when it happened because it made my neck hurt pretty bad and I woke up in the middle of the night when the pill had worn off and I fully felt the effects of hitting the cement full force with my whole body! Oh well, enjoy the pictures for now!

Thursday, May 14, 2009

Stunt Woman Training

(me before work this morning)

Chemo Tomorrow.

I need to get about 4-5 hours of entertainment together tonight so I can have something to do while I sit there. Basically I just have to remember my computer! 

In other news, I started my training as a stuntwoman today. Ha. I completely face planted it today on the cement. I had the boys outside going to the bathroom in the garden off the leash. Ruekie wouldn't stop whining and I didn't know when Warner would be home since he was running errands, so I took them out. Well, a big ol guy comes walking by with his little bitty yippie chihuahua and the boys of course wanted to go make a friend - Big Guy was not a fan. So, I started to run after the boys and my leg gave out since I am so weak and I apparently can't run. Well, down I went face first in to the ground. Luckily there were some guys across the way yelling at the boys and asking if I was okay, so it all worked out. So apart from a headache and some bumps and bruises and one really good bump on my eyebrow everything is fine. The boys are in mega trouble though and have been kenneled since the incident. 

The bump above my right eye (the computer flips the images)

Not much else is going on really. I worked half days all week which allowed me to get back in to the swing of things and get a few things done and to meet the million new people that are running around the offices now. Food is going about the same with a little improvement in the past two days. Yesterday I told Warner I wanted peas and mashed potatoes but he didn't get the message until he got home, so he went back out to get me KFC mashed potatoes and then to the grocery store to get me peas (but he bought the wrong kind, he got frozen and I like my peas to be canned - he was just trying to be healthier, but I'm not sure what's healthy about neon frozen peas). So that was my first adventurous meal. Then tonight Warner and I had pancakes for dinner so I'm hoping they stay down! I've been eating some applesauce and tapioca pudding as well. So hopefully that pizza is coming soon! HA! 

I saw Heels yesterday and Dr. Bienvenu had filled her in on my SMA which was a good thing because I really expecting a lecture for losing 20 pounds. So, it was a good visit. She checked my mouth and all that and we talked for a while. Mell was in there because she had just found out about my cancer returning, so she was fussing at me for not telling her. They both agreed that I looked gorgeous bald and with a scarf on. Heels fussed at me for not telling her I was in the hospital. I thought for sure Dr. Bienvenu would tell her, but apparently not. I told her I next time I would definitely tell her, but hopefully there wouldn't be a next time! 

I'm still keeping you all in the dark about my big surprise! I'll tell you all soon. I promise.

Tuesday, May 12, 2009

Working Woman

I went back to work yesterday. It was really good to get out of the house but man by the time 2:00 rolled around, I was pooped and declared it quitting time. Today I decided to quit at lunch which was a much better situation all around. Monday I got a snowball on my way home, ate some of it and then crashed for the rest of the afternoon. Today I just slept for a little while sitting on the couch. Not much else is going on right now. I'll have to write a post about the surprise Warner gave me last night, but for now I'm going to leave you all guessing as to what it is. My new food is tapioca pudding - it has pieces in it. So I'm pretty excited about that because I really like tapioca pudding. Oh well, just wanted to let you all know we are still around!!! 

Friday, May 8, 2009


Due to the overwhelming support for the bracelets we are going to set a deadline for tomorrow for orders so Hal can order supplies and get them made. So if you want one, or know someone who might, get that in to me by tomorrow! When I get a final count, I will send out an email to everyone who has ordered one with my address for sending the money and all that jazz.

In other news I had my doctors appointment today and everything is looking good. He decided to wait a week for chemo so I have some more time to gain weight. I think I am going to try and go back to work on Monday, at least for a half day - I get pretty bored during the day. 

Thursday, May 7, 2009

Soup Soup Soup

Just letting you all know I'm still alive - bird legs and all. Not much exciting is going on. Just eating soup and watching reruns of Unsolved Mysteries. And so you know how awesome my husband is, he gave up his lunch break today to go to Walmart and buy me soup (we were mostly out) and pudding. AND he bought me flowers AND he came cooked me the soup when he got home before he went back to work. He also shaved my head last night for me. That's pretty awesome. But don't worry, I let him buy a new video game the other night, so he's at least getting spoiled a little bit! My mom is bringing me some soups on Saturday that she has cooked, so I'm looking forward to having something different. 

We will find out tomorrow at my doctors appointment if I will have chemo tomorrow or not. I guess it depends on how my doctor thinks I'm doing! 

Wednesday, May 6, 2009

Support / Awareness Bracelets

My friend Hal approached me the other day with the idea of making a bracelet for me, like the one pictured above. It will be on a red rope because red and white are the colors for Oral Cancer Awareness. The beads are silver and the center bead will have an "S" on it for Stephanie. To cover the cost of supplies for the bracelet, each bracelet will cost 5-10 dollars. If you would like one of these bracelets or if you have any questions about them, let me know by either leaving a comment or emailing me at If you leave a comment please make sure you leave your name and email address so I know who to contact and how to contact you. 

Whole Foods

Two nights ago Warner and I ventured out for a very quick trip to Whole Foods. I get tired really fast right now so we tried to make the trip as fast as we could. I would sit down when I could and stayed focused on what I was looking for when I was walking. I wore my mango scarf in the store because I knew it would be freezing cold in there - otherwise I probably would have just gone bald because I'm lazy. While we were walking and I was contemplating taking a sitting break, a lady asked me how I was feeling, while tugging on her wig. Apparently she was fighting cancer as well. She pointed out some foods that she likes to eat, we thanked her for the ideas but we informed her of my  stomach issues, to which she thought I meant chemo nausea. We tried to explain it to her but she didn't really understand so we let it go. Anyway, it was a nice conversation for a few minutes and then it just got weird. We cut the conversation short becuase I really did need to go sit down by this point. She hugged me (and if you know me, I'm not a huggy person at all) and then she told me she loved me. It was all a little too personal and touchy for me, I much prefer the weird looks from non-cancer people, but hopefully it made her day.

Okay, and now for some pictures for Dawn to reward her for reading the blog!!!!

This is my mango scarf - it's a little big on my head, but it's probably my favorite right now. It's slightly heavier weight but it's made of stretchy material so I like it. 

This is my flashy scarf. I didn't realize how glittery it was when I bought it but I'll wear it for fancy occasions! This one is the same material as the mango scarf.

This is my lightest weight scarf and it has butterflies on it. It will be good to wear when I'm outside when it's hot since it's so lightweight.

I have picked out a couple more scarves that I am going to get I just have to get around to ordering them. Other than that, not much is going on around here. I'm just eating and trying to get fat...or at least gain some weight. I bought some soup at Whole Foods and my mom made me some soups - but they are all quaranteened right now so I guess it may be a couple days until I get the soup. A guy at my brothers work got the flu Monday and apparently my mom hasn't been feeling too good this week. 

Basically right now I eat something every few hours - usually yogurt, soup, or milk, or whatever I can find. I don't have many snack ideas, so if anyone has any good ideas, please pass them along! I don't really like ice cream that much and I am way beyond tired of jello! I also prefer juice to smoothies (I'm not too crazy about frozen things I guess - I just put lots of ice in my drinks). Well, that's all I've got for now...enjoy the pictures!

Sunday, May 3, 2009

Brownie Batter

So, I had the revelation tonight that I can eat batter! I obviously haven't tried this theory out yet and it may not settle well in my stomach - but batter is kind of liquid, right? Cake batter, brownie batter, etc.... I think it's a genious idea. Okay maybe not. Maybe I'll just lick the bowl if someone makes brownies or a cake or something - I'm not going to sit down and eat the entire box of mix.

In other news, I am tubeless now! My NJ tube got clogged this morning and we spent the entire morning trying to unclog it. When we finally talked to the doctor, she told me to go ahead and pull it out since it was no longer usable. Yeah, for ME to PULL it OUT of my nose. On my own. So I did. It was either do it on my own, let Warner do it, or wait until tomorrow and go to the hospital to have it taken out - so Warner convinced me to go ahead and take it out on my own at home. And man did it hurt when it got to the end because the end part is slightly larger than the rest of the tube. They had trouble finding a tube that was small enough for my nose when they put the tube in so it was really tight, which obviously made it painful when I took the tube out. But the good news is that the tube is out and no longer irritating my throat and nose. Now I have to work extra hard to gain weight so I don't have to have the tube put back in. 

I'll have to take a better picture of myself "tubeless" but for now you'll have to deal with the one above - I snapped it really quickly with the computer so I could show off my lack of tubes!

Paula came by and visited me today, as did my parents, and Warner's mom was also here this weekend. So we had quite a few people hanging around today! I'll have to write more about all that later. It's time for bed now! 

Saturday, May 2, 2009

Weight Changes

Here are a couple of pictures over the past two weeks so you can see the changes I've gone through with being sick and everything. I didn't realize how much weight I lost until I started looking at pictures. I had asked Warner to buy me a pair of comfy pants from Gap while I was in the hospital and I remember fussing at him because he bought me a medium "for the length" (as if a medium would be too big in the waist) and I thought there would be no way they would fit my waist (I usually wear a large) but he was right and the medium fit me quite well. And for those of you who thought I had no butt before all of this?!?! You should see me now! Haha.  

This was taken April 16th, my first day back in the chemo chair. 

This was taken April 27th after I had been in the hospital for a while. You can see how much weight I've lost! And this was even when I was on the better side of being sick! 

Me today!! My brother completely shaved my head last night since all the little pieces were falling out! I can't wait to get rid of the feeding tube so I can take a decent picture! But I definitely look a whole lot healthier in this picture than I do in the previous one - I'm still pretty skinny though! And in spite of my head always being cold, the no hair thing is pretty convenient! 

Friday, May 1, 2009

Maybe Someday I'll Be Normal

In case you were wondering why I've been in the hospital, I'm pretty sure this is the technical term for it all :

Superior Mesenteric Artery Syndrome

And according to everything I've read online about it, it's pretty rare! I like to keep the doctors' on their toes! 


I'm breaking out today...feeding tube and all. The feeding tube should be gone in two weeks and hopefully I'll be well on my way to eating pizza by then! I do still have some questions for my doctor before I leave, so I won't be outta here until around lunch time! And I have to get some food ideas as to what exactly counts at liquids so I know what I can eat when I get home. 

Hey Look!

New Fuzzy Socks!!!

They're fuzzy like my head! Not much news to report. I'm allowed to drink chocolate milk now and today I think I get to try a different type of soup - which is awesome because you can only eat chicken, beef, and vegetable broth, for so many meals and if anyone wants "jello" let me know. They bring you like 3 containers of it at a time and it's not even real jello because there's not any gelatin in it! Plus I just don't eat jello that much  and usually it's a little warm when they bring it to you. If I'm going to eat jello it better be super cold. Anyway, that's my news today. Hopefully I'll get out of here today and I gotta keep trying to gain weight. This morning I weighed 131. It's a learning process for me trying to figure out how to gain weight healthily - usually I can just eat cake and cookies and call it a day! But since I can't eat any of that stuff, I'm starting from scratch! 

Oh yeah, my stubblies on my head are starting to fall out so I'm going to have Charlie shave it all completely off when I get outta here! And I am sooooo ready to go swimming soon!!!!