“What are the most common side effects of Neulasta® (pegfilgrastim)? The most common side effect you may experience is aching in the bones and muscles. If this happens, it can usually be relieved with a nonaspirin pain reliever, such as acetaminophen.”
My white blood counts dropped while I was in the hospital so on Saturday I had to get a shot of Neulasta. It stimulates the bone marrow and promotes the growth of white blood cells. Based on the above information that I was given when I got the shot, I figured it wouldn’t be too bad.
While looking up more information about it, I found this picture:
wtf???
I have no idea what the heck it means. Weird.
So I got the shot Saturday morning and didn’t really feel anything. Went about my business and had no effects. Until last night.
I went to one of my cancer support groups and on the way there started to feel this pressure in my lower back. As I sat through the session the pain started to spread and get worse. By the time I got home it felt like someone was trying to scrape the muscles off of my bones. Tylenol my ass.
I would say I’m about a 6. Not fun.
I realize that everyone reacts to medication very differently. I have also come to realize that I tend to have different and more extreme reactions to medications. I should’ve expected this. However, in reading more about this drug it seems that quite a few people experience pain that is a bit more than just taking an aspirin will relieve.
I ended up taking Vicodin and managed to get some sleep last night. Cats slept on me all night. I’d like to think they were trying to do their part in helping me heal but they were probably just cold. Either way is was a nice snuggle.
I woke up this morning feeling like I was in a car accident. Each and every one of the 206 bones in my body seemed to have something to say today. Took more Vicodin and I’m feeling better. For now. Can’t take too much since I still need to take care of the kids later this afternoon. Don’t really want to model “high mom” today.
Hopefully my bones will stop screaming and this will pass soon.
Going to see the taping of The Big Bang Theory was supposed to take my mind off of being in the hospital, not put me back in it. Twice.
The couple of days after the taping I was wiped out. Just exhausted. A slow exhaustion. Kinda like a day of gardening, teaching a toddler to swim (or giving a cat a bath), or slowly drinking through a 24 pack of Natty Ice. Whichever you can relate to.
I knew my hemoglobin was low and figured that’s what was dragging me down. I just had to make it to Saturday, but I didn’t.
Friday morning I woke up with a pain in my chest. Pressure. Kinda like the cat was sitting on me. It didn’t get overwhelmingly bad, but got worse enough that my oncologist had me head into my favorite place, the ER. I will say, you do get in amazingly fast if you have chest pain. I don’t think she even had my bracelet printed out before I was heading back to my bed.
Hemoglobin was actually up, but my gallbladder decided to make it’s inflamed, diseased presence known. They decided to keep me overnight for observation. Not wanted my gallbladder to get all the spotlight, my hemoglobin decided to drop overnight and I needed that transplant after all. I stayed all day for it and was released at 10pm. And yes, I watched Big Bang Theory.
I was home just in time to go to bed so I wouldn’t miss the Easter Bunny the next morning. He comes early around our house. The kids are always cute searching for all the hidden treasures. This year the Bunny put lottery tickets in a few of their eggs. Kian won $50!
I made it to church to add my trumpet flare to “Christ The Lord Has Risen Today” and came home to catch up on housework I missed while I was in the hospital.
While I was sorting through some of our medical files, MJ reminded me that I haven’t finished my will or funeral wishes. We did all the advance directive stuff and I was going to finish all of that at that time but didn’t. She brought it up because it was all part of the files in front of us and it’s just one of those things you have to do as an adult. Just stings a little bit to have to think about and do in my situation. I know doing it now while I’m still relatively healthy will be better than when I’m starting to decline or can no longer function. Just still sucks to have to do.
In the early afternoon I noticed my colostomy bag was quite full all of a sudden.
Crap.
(No, it wasn’t that)
I know what that means…
Bleeding again!
Damn it. I was so happy that I thought that problem was over. I hadn’t had a bleed in a month and 1/2. I emptied my bag and sure enough, all blood. I sat down and put pressure on it for awhile.
Second bad filled.
Decided to take off the appliance in the shower and see what was going on. It was quite the bleeder! Gushing out of the stoma. It would’ve been impressive if it wasn’t freaking me out at the time. The shower looked like a murder scene. Psycho had nothing on this tub. I held a rag on it for about 15 minutes before it started to stop. I left the bag off for awhile to make sure it was done but once I suited the stoma back up? Gush.
{{edit– Um, I know I’ve talked about my stoma quite a bit and if you still don’t know what one is and have just done a google image search, I’m sorry. That must be quite shocking for you. It’s actually quite a miraculous thing they can do to help save people’s lives, but yeah, it does look pretty freaky. It’s even freakier when it’s sperting blood.}}
By the time I filled my 4th bag I was starting to not feel well and was realizing I couldn’t keep it from bleeding. I knew I was heading back into the ER. Damn it.
By the time I got there I had filled my 5th bag and figured I was in for at least a blood transfusion. They checked me into One West (the oncology wing) and I settled in for the night. Little did I know I would be there for 3 more days.
A surgeon came in to stitch up my stoma. Blood levels were still down though so I had to have 2 more units of blood. Got 6 total in 4 days.
Watched more Big Bang and other TV. Did some puzzles. Tried to do a little bit of school but it’s hard to concentrate on when you’re not feeling well.
All things considered I still think I looked pretty good. Me and my crazy hair.
Good thing smellovision hasn’t been invented yet though. This pic was taken on day 2 of being in bed. I think I look cleaner than I was :/
I had a few visitors and just passed the time until they freed me. Once they let me go I got to go straight to chemo. Boo.
I’m struggling more with this chemo than any I’ve had up to this point. I get very nauseous tired and weak. This was the first time I actually threw up during chemo. Luckily I made it to the bathroom in time. It was a last minute sprint.
Once I got home and settled in from chemo, MJ and I had a discussion about school. <sigh> It was not what I wanted to talk about but knew she needed to have a decision made about it right away. I still have at least 3 terms left and I’m not super motivated to get through right now. Especially when I’m not feeling well. It sucks to drop at this point, but I’m not really sure if getting that degree will benefit me at this point. Hard to know. Will I be able to work full time in 6 months? Who knows?
I struggled through the last few days physically and emotionally. Just drained. Even more so than the days after the taping. I hate those days. I feel so trapped and it makes me wonder if I’ll ever feel normal. And then I do.
Today is the first day I’ve felt as good as I did at the taping. I need to remember to take advantage of these days and get as much done as I can without wiping myself out. So today I got the blog post in -plus some other stuff. Tomorrow? Well see. I still haven’t officially dropped from school yet. If anyone has any thoughts about it, I’d love to hear.
**Possible Spoiler Alert**
I’m not going to tell you everything, but if you don’t want to know anything about the episode, don’t read.
My Big Bang Theory Taping Day
We started the day getting up bright and early. Partly so we could get ready to go and partly because we couldn’t sleep. MJ was excited about Disney.
Because the kids were on spring break, MJ decided to take a vacation day to watch them and decided to break in our Disneyland passes.
We got to Anaheim around 11am. I decided to hang out with them for a couple of hours. Got our passes and pictures taken for them. The park was super busy because of Spring Break so I only had time to wait for one ride with them. I made my way back to car and left by 2.
Check in time at the studio wasn’t until 4:30 so I figured I had time. Of course then I hit LA traffic. Ugh. Dead stop on the 5. I looked up traffic on my phone and it looked like I was going to be sitting in it for awhile. Hoping I would get there by the check in time. Otherwise they put you into standby. Luckily traffic started to clear and I remained amazing calm through it
I got to Burbank around 3:30. Found the “Lot 8″ parking structure and a place to park. Little did I know that the structure was the actual check in spot for the show. Weird. We all met on the first level where they had a big section roped off and benches. It was a little crazy when I got there. Probably 70 or so people sitting there. I was trying to figure out where to go when a woman snipped at me and pointed behind her “there the end of the line”. The guy she was with wasn’t much nicer. I sat there for just a few minutes when one of the organizers said there were two lines. Apparently the one I was sitting in was for standby. I was kinda snotty to the woman when I stood up and said, “Oh, I’m not standby”. She gave me the stink eye.
Once I was in the correct line I struck up conversation with an adorable couple from the UK. I asked of they were here just for the show. He said “not reeaally”, but yeah, it was “a big part of the reason” they were here. WOW.
A woman came around to check us in, gave us numbers (I was 38) and “the rules”. Basically, don’t try to bring anything in. Anything. I had a backpack with an extra shirt, sweatshirt and I brought a shirt for the cast to sign in case some of them hung out after which I heard they sometimes do. But after the second announcement decided I didn’t want to take a chance with it so I took it back to the car.
At 4:30 they lined us up to start taking us over to the studio. We had to go through security to get onto the lot. I was at the head of the second line with the UK couple. The woman from Audiences Unlimited who was leading us gave us a little tour of the lot as we passed the different studios. She also told us that things were weird for our taping for some reason. She said they normally leave around 50 seats for VIPs for each taping. Tonight they had 137 VIPs. There’s only 200 seats in the studio. They weren’t even sure if they were going to get all the people in with priority tickets. Yipes! Glad I got in line when I did!
We weren’t allowed to bring our phones so I took some pictures from the internet to try and show what it was like. Here’s what the Warner Lot looks like:
Once we got to studio 25, we had to go through another security check as we went in. And then we finally got to our seats!
I got a pretty decent seat. I was almost in the center about 5 rows up. I think there were only 8 rows? And I was just about center to Lenard and Sheldon’s apartment.
While we waited they showed an episode that hasn’t aired yet on the monitors. After the episode, Mark Sweet (the audience warm up guy) started a dance contest with members of the audience. He constantly tried to keep things going.
And then… They announced the cast! And they came out one by one. It was a bit surreal.
They started out with a scene they pre-taped. We watched it on the monitors so they could record the audience reaction.
The first scene they filmed was in the cafeteria which is a set that’s next to the audience, so we had to watch it in the monitors. It was a little bit of a tease. We could hear them on the other side of the wall and could see them on the screen. It was kinda weird.
The second scene was in Bernadette s apartment which was at the end of the studio. You could see part of it, but not most of it. We did get a chance to see Cinnamon Koothrappali, though. Adorable.
The third scene was in Leonard’s bedroom which was on the opposite side of the stage. Couldn’t see that one at all so we watched on the monitors again. Again, such a tease!
They FINALLY got to center stage and stayed there for most of the rest of the scenes. It was incredible to watch. Of course you want to watch what’s happening on the stage but then you catch a glimpse in the monitors and everything looks so different. They only did a few takes of each scene. A few times they would get together and change the lines. Some of the line changes were really funny. I’m assuming they take the lines that get the best reactions.
I’m assuming the 137 VIPs in the audience had to do with the guest star of the episode, Bob Newhart. Apparently he hasn’t done a sitcom in about 10 years, so this was a pretty big deal. The reaction in his first appearance was huge.
About halfway through the taping they passed out pizza and water for everyone. It was cold and not great, but it was still pizza. Mark also passed out candy the whole time. Trying to keep people going between takes. He had all of the people who came from another country come up and sing a song their native language. The UK guy sang a Beatles song. It was cute. They also had people come up and tell what the show meant to them or why they connected to the show. I got up and told my story and he gave me a whole bag of candy haha.
The episode was great. The whole experience was fun and just as amazing as I imagined.
A few notes:
The whole cast is very professional. There was not a lot of goofing around. Some of the scenes were long and filmed mostly in a single take.
Jim Parsons (Sheldon) really is amazing. He’s kinda quiet and works on his lines between takes. As soon as they roll, he is very much in character and is a huge personality. He’s also very tall.
Johnny Galecki (Leonard) is a bit of a character between takes. He dances and jumps around a lot.
Simon Helberg (Howard) and Melissa Rauch (Bernadette) have great chemistry and work really well off each other. They are also both very little.
Kunal Nayyar (Rajesh) seems very sweet. He was always smiling on set.
There was no Mayim Bialik (Amy Farrah Fowler) :( I was sad she wasn’t there, but the chance to see Bob Newhart in action was worth it.
Kaley Cuoco (Penny) is HOT. Wow. I mean, she really is stunning. And funny.
I got to hear a live “Soft Kitty”! It’s in one of the scenes.
The first person in the standby line was wearing a bright green t-shirt. I didn’t see him in the audience. That means at least 50 people waiting to get in did not. I wonder if they even got all of the ticketed people in. Once the taping was over all the VIPs got to go to the stage, meet the cast and get a tour. I should’ve tried to sneak in with them. I mean, there were 137 of them! I heard that at least a few of the cast always hang out afterwards for autographs, but because Bob Newhart was there (and all his VIPs) they didn’t. They shoo’d us out of the set area pretty quickly.
All was done by 10:30pm. Disneyland was open until midnight so I was back in plenty of time to pick up MJ and kids. An amazing day and an experience that I am so thankful to get the chance to be a part of.
In all the sick and craziness I haven’t had a chance to post about the UNDY 5000. So here it is:
On the morning of Saturday March 9th we did the 5k run to support the Colon Cancer Alliance. Many of you donated to support me and I can’t thank you enough!
When I started fundraising I had no idea I would ever be close to being the top fundraiser. When I got close to it towards the end I went for it and the support was great! ”Stan” the second place guy came out of nowhere in the last week and we had a little competition going every day up until the end.
When we went to bed the night before the race I was in the lead by a few hundred. Thought I had it in the bag.
I woke up around 3 in the morning and went to the bathroom. I figured I’d check the figures while I was up and wouldn’t you know it… some other guy “Patrick” got a few thousand dollars in donations and came from nowhere to edge up on me. He was only a hundred dollars away.
When I woke up he had passed me by $50. Seriously?!?? I got a few more dontations but at 6:30 (when they were checking people in for the race) he was up by like $700. The pisser about it was I had a huge match that hadn’t gone through yet. Once that does I’d be up by over a thousand.
Well… before the race started they announced the highest fundraisers. They didn’t check the numbers that morning I guess because they announced me as the top fundraiser!
About 5 minutes later they announced that Patrick had gotten all those donations in the last night. He didn’t seem happy with that though. Whatever. I think it was win-win. Cause really, once that match comes in I’m still the top girl
I did get to meet “Stan” and he was really cool. We joked how we kept each other going in getting all those donations. So glad it was going to a cause that helps the both of us.
The race was nice. Considering I didn’t really train and I had just started a new chemo the Tuesday before, I did well. About a 15 minute mile.
It’s called the UNDY 5000 because many people run in their underwear. Being that it’s San Diego and were weather wimps, most of us wore our undies over pants.
Our friend Tracy was participating with another team and our friend Ruth came to watch so we met up with them. It was fun to know other people there.
Tracy, MJ and I at the starting line:
After the race they had a nice survivor ceremony. There were 45 survivors that participated in the event. It was a little emotional for me. We all got special medals:
MJ and I after the race. I can’t tell you how much I <3 her:
The following day we went to the Ostomy Fair! Good times I tell ya!
It was smaller than I thought. Just a room with about 5 tables. Surprisingly I was not the youngest person there. There were quite a few young people there, but mostly old. The one thing I found funny about being there. A little secret… when you have a colostomy one secret you always have when you are in public is that “I could be pooping right now”. It’s kinda funny depending on who you’re talking to. You know, like one of the kids teachers. But when you go to an Ostomy Fair, EVERYONE has that same secret. It was weird talking to someone and thinking “THEY could be pooping right now”.
And then I got sick that week. Missed PaleyFest. You’ve already heard that story. If not, click back a few posts.
After years of saving and dealing with working on a laptop I finally got myself a new desktop computer! It arrived this week and it’s just as amazing as I dreamed it would be (yes, this is very big news for the computer nerd girl).
And today? I’m not starting out this week well.
I guess I figured since I got a new computer and all I may as well go ahead and break my iPad. Yeah.
Suck.
Slipped right off my lap onto the tile. No Apple Care. The crunching sound making me not want to open my eyes.
Went to go get that fixed today and afterward had to go get my labs done to check my hemoglobin levels…
7.7
What?!??
Suck.
They wanted to schedule me for a transfusion. TOMORROW.
Um, I’m supposed to be heading to LA tomorrow to see The Big Bang Theory taping.
ARGHhhh!
Kids are on spring break this week too. Can’t have them sit with me for 6 hours while I’m in the chair, so it was looking like my option was to miss going to see the show. Seriously??!?
As I was about to lose it at my onc’s office, they said my numbers were OK enough to wait until Saturday. While I’m not thrilled I have to get another transfusion, I’m so grateful I still get the chance to go tomorrow.
Stay tunned… I will post about the taping experience later this week.
Went to the oncologist today for a follow up and basically he thinks I just caught a nasty bug while my immunity was down. My labs and blood cultures didn’t show anything eles going on.
While I’ve had little colds here and there, most of my sicknesses in the last year have been chemo related. Considering how bad the flu went around this year and how immune compromised I am, I’m pretty lucky it only put me down for a few days.
The best news is that this wasn’t likely chemo sick so it’s not something I’ll have to look forward to next round! Yay!
Thank you all for the funnies! It really did make me smile through an awful couple of days.
Yesterday was just awful. You know it’s bad when even watching TV is a chore.
Last night I started to feel a little bit of relief and was able to get some sleep.
This morning I’m feeling a little bit better. I can at least walk around the house without feeling like I’m going to collapse. I still have a fever that I can’t seem to shake.
I have an appointment with my oncologist this afternoon to see what he thinks or if he has any news on my labs. I’m even feeling well enough to drive myself to the appointment. Something I wouldn’t of been able to do yesterday. So things are starting to look up.
Well, I’m sick. Really sick.
I’m home from the hospital with a chance I might have to go back in. Let’s hope not.
I had to go to the ER last night because I’ve had fevers for the last few days. I’m super achey, nausea, stomach cramping etc. Pretty much like a horrible flu.
They ruled me neutropenic last night and sent me home. They’re watching my blood cultures to see if anything comes up.
Not going to lie, I’m pretty miserable. I could use a few good laughs today, warriors.
Thanks. <3
-plus some other stuff. Tomorrow? Well see. I still haven’t officially dropped from school yet. If anyone has any thoughts about it, I’d love to hear.
