I've been getting a zillion emails about my blog and my health. I haven't been on here since Saturday. Mainly because laziness but also because it has been a hard 5 days. So where to begin...
Sunday:
It was MOTHER's DAY! I spent my entire day laying in bed bored out of my mind. I had some company for most of the day (s/o to Sara!). Sunday was a big day because some AWESOME friends of mine moved my ENTIRE apartment from the THIRD floor to a new FIRST floor apartment. My mom did a lot of the pre-packing throughout the week before but for the most part, the labor was done by all my friends. Also, being in the hospital for a week I was COMPLETELY unaware of how hot it really was outside and of course i picked the HOTTEST part of the day to meet. lol. sorry guys. but i love you all. I'm just glad that it went as quick and efficient as I heard it did. Now the hardest part for me is UNPACKING. I have a lot of stuff. lol.
Monday:
Monday was BRU-TAL. It was my scheduled date to get out of the hospital but my counts were still low. So they just gave me about 6 prescriptions and sent me on my way...right? WRONG. I started out getting a shot in my side to help boost my counts. It didn't hurt but by now all needles hurt just looking at it. LOL. Then I had a morning intrathecal chemo again (spinal tap) and for some reason this one HURT. One of the residency doctors did it again and just the numbing medication hurt. It was like my original spinal tap at Mercy. the 1,2,3...sting....1,2,3....burn. UGH. And it took FOREVER because I think he kept messing up or sticking me in the wrong spot. IDK. So after about 15 minutes I was completely uncomfortable and irritated. Then he was finished and the waiting process began for the official discharge papers. During that time, I got quite a bit of pain meds (for headaches/mouth sores), potassium pills (my level was starting to drop), and the usual pepcid and nausea pills they gave me daily. During that time I ate a bread stick left over from the night before and drank water and talked with my mom.
I was finally discharged and given my paperwork, prescriptions, and directions around 2pm. As we were packing up things and literally about to walk out of the hospital room....my mouth started watering, my head got dizzy, and I said "i think I'm gonna throw up."
and I did.
I threw up the breadstick and water I just ate as well as all the meds I took....great. My mom went and got the nurse and I said...hmmm, I just threw up the breadstick so that must've been it. Maybe it was too greasy for my stomach. So I drank a cup of water to wash the taste away and got one to go and left. At this point, I was tired and wanted to go home and sleep.
When we finally got to the car I had finished my water and as we started pulling out....again... I said "stop, I think I'm gonna throw up." So my mom stopped the car, pulled back into the parking lot and I threw up all the water I drank. Nothing new. Just clear liquid that I knew was water. When I finished, I laid my chair back, put my sunglasses on, and tried to concentrate on something happy.
We got home and I saw my apartment furnished for the first time and MAN I HAVE A LOT OF STUFF. lol. My mom didn't put anything away because she knows how anal I am about putting things where I want them so I just had boxes and stuff everywhere. But of course after throwing up I felt like sleeping. and I did. I immediately went to my room and laid on my bed and fell asleep for a bit. Eventually, I made my way back to the living room and sat on my couch and somewhere in there....fell asleep. My parents went to the laundromat and came back and I was still asleep. They expressed interest in being hungry and so did I. We decided on Texas Roadhouse because it was already 9pm and i knew it closed at 10. When we got there, I ordered a water and dr. pepper and my food. And I was so thirsty I almost instantly drank half my water and half of my DP. And of course....took a bite of the tasty rolls they have.....then my mouth started watering.....and once again...I threw up EVERYTHING I just put into my mouth. Water, DP, and the little corner piece of a roll. It was like my stomach wasn't wanting anything. This was the first time I felt like this too. My assumption by this point was the spinal tap. I'm not really sure how it all works but all I know is that I was scared to eat or drink anything after that because i HATE throwing up.
So when our food arrived my steak, baked potato, and even BROCCOLI looked sooo tasty! But I didn't eat or drink anything...I just parked myself at my seat, scrunched myself down, and watched the Thunder game.
When we got back to my apartment, I was ready for bed. But again, my body wanted to throw something up. But since I threw everything up nothing was coming out. It was terrible. I then gave myself some medication and put myself to sleep.
Tuesday:
I didn't feel terrible waking up. Just tired and not wanting to get up. But we had to go to the clinic to get another shot for my counts. As soon as I got dressed and went outside to the car, my eyes started throbbing. The sun was WAYY too bright for me. As I walked I counted to three with my eyes closed and opened them on four. LOL. Until I got to my car, this had to work. I had a scarf of my head too but that didn't help. When we got there, my head was hurting and we checked in. As I sat and waited for my name to be called I was EXTREMELY uncomfortable & almost restless. A new pain had arisen and it was in my neck/high back MUSCLES. It felt like an EXTREME cramp that I couldn't massage out and the ONLY position I could be in while I waited for it to go away was a laying down flat on my back position. Weird right?
So I was laying on a bench and they called me back and as we did more waiting I found another bench I could lay down on. They finally moved us into a room where a lot of outpatient infusions happen and I sat in what I could consider, a comfortable looking chair. But it wasn't...well it would've been except I sat there so long my neck was CRAMPING, my eyes were hurting, I was getting hot and cold flashes, and I was just irritated all together.
I guess I just looked like I was in pain so the nurses who were giving me shots and what not had called my doctor and they ordered me fluids to keep me from dehydration and antibiotics to hopefully help with the cramps....but it didn't. Anytime I moved or even worse...stood up, my neck cramping was BACK. I tried to tough it out but I just couldn't.
After those brutal two hours I was sitting in my chair, and TWO more prescriptions later, I got enough energy to get up and walked back to the car. The only position I could hold my head in without my neck cramping was looking straight at the ground....and so i did. It seemed like it was better standing than sitting. My mom had driven me and on the way home, I laid down in the back of the car and felt a bit better. So it was off to wal-greens to get all my medications filled and it seemed like it took FOREVER. I was hot, my head was hurting, my eyes were hurting, and i was HUNGRY. Luckily I drank half a sprite before I went to see the nurses so I figured I was okay to stomach things. So my mom took me to sonic for a burger (yum!) and she took me home to lay down to rest. I was so tired and my body was just exhausted. My mom picked up my medication and MAN o MAN was it expensive....I'm not even gonna mention it...just know between my wig and my meds.....I could've paid people's RENT with that.
After I got as much meds as I was allowed to take I walked back and forth between my bed and my couch and eventually after eating some ramen noodles and watching a little bit of King of Queens....I went to sleep.
Wednesday:
I woke up to my mom cooking her yummy potatoes and I couldn't resist getting up. We had another appointment around 1pm today and up until then, I dozed on and off and as time passed we eventually were back where we had just been about 24 hours ago. My neck cramping came back as soon as I stepped into the OU Physicians building and I was again, uncomfortable. I tried to stick it out but eventually, I asked if I could just find a bench and lay on it after they drew my blood. THey wanted to check my counts so it took about 20 minutes to process all of that. The muscles cramps were off and on but nothing compared to Tuesday.
They let me go after talking to my mom about my counts and I figured since I was out we might as well go to wal-mart because I had to pick up pictures and get money back from when they charged me twice. I was feeling pretty weak so my parents got me a cool wheelchair thing that beeps at walmart. I also wanted to buy some organization stuff hoping it would put me in the mood to clean/put away things. After talking to customer service and getting my money back, I started shopping I was okay for a good 3 minutes and then....I had terrible neck cramps....AGAIN. they were worse this time and it hurt so bad that I had my mom open a thermacare box of instant heating pads and apply it right then. She of course paid for it but I just couldn't tough it out. It was terrible. My mom had found my dad and told him to go get the car so I could lay in the back as my mom checked out but....remember yesterday's flash flood/thunderstorm?? YUP I was in walmart at that time and as it came down my dad found a bench and sat down on it. As he waited for the rain to stop I was telling my mom what I wanted. I then stole the bench he was sitting on and laid down and almost instantly my neck's pain went away....weird right??
I laid down for a good five minutes as my mom found things and brought them back to show me what she found. I built up enough energy to grab a few things I needed for my apartment but it was the worst feeling ever not being able to get rid of a neck cramp. UGH.
My mom finally checked out for me and my dad got the car and we went home and I fell asleep until I got bored and tired of sleeping. As I was laying on my couch I really had the urge to start putting away my apartment.
Around 7 or 8, I looked at my mom and said, I want to go to target to buy a shower curtain. She must've been bored also because she jumped right into it and said "do you want to try to go again?" I of course said yes. I got all my pills in me and pumped myself full of meds and we made it to target and even to Michaels and it put us both in the mood to clean/put away things.
My neck was in a little pain but nothing too bad. But when we got back to the apartment, I laid down for about 30 minutes and eventually got up and I had an instant burst of energy (probably the steroids) and for about 3 hours my mom and I worked hard putting things away in the kitchen, bathroom, and some of the living room.
THen, I hit a brick wall. It's almost like I have a split personality.....I was tired, I wanted to lay down, my neck cramps came back and I ate more ramen noodles and fell asleep.
Thursday:
Today is a little better day. Both my mom and I have been lazy. We stayed up pretty late last night cleaning so we've just been hanging out. I was fine when I started typing this but I noticed that my head is starting to hurt the more I stare at this screen and my neck is beginning to hurt even more Annnnnd I'm craving ramen noodles. LOL
Well readers, I 'm sorry for the delay in messages but as you can see, I've been having a rough couple days. I think (i hope) the worse is over. As long as I can get over these dang neck cramps I'll be good. I'm not sick or anything just have terrible neck pains.
My white blood counts are extremely low so I'm trying to create a clean bubble in my apartment...but i'm running LOW on ramen so I need to buy more.
My next bone marrow biopsy is scheduled for the 24th of May....it's a big day because it will determine which "path" I take for my treatments....or whether or not I go into remission....
So keep that day and my results in your prayers. I'm feeling good about this dose but sometimes you just never know.
I love you all, I need to lay down, I'll try to remember to write more later. :)
xoox
kim
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