This has been one of the longest weekends EVER. I have done NOTHING except watch TV show marathons and old movies. I have been bored out of my mind but It was worth it.
As of yesterday, almost 2 months to the day of my diagnosis, I have officially gone into remission!
Meaning....my last bone marrow biopsy showed that all signs & symptoms of leukemia are gone. There are no abnormal cells in the blood, bone marrow, and cerebrospinal fluid, most of them are mature & can reproduce on their own. The percentage of lymphoblast cells in the bone marrow is less than 5% AND my blood platelet counts are returning to normal.
My last health update that I actually wrote down was on Sunday. My hemoglobin (red blood count) was at an 8.5 (I should be at around a 11-15) and I haven't had a transfusion and for me this is GOOD. :) My platelet count was at a 166....I came into the hospital for the first time at an 8. LOL and i've been floating around 22-40 so anything over 100 is awesome! :) and my white blood count....I didn't write down. lol. I guess I was excited about everything else. But I'm not neutropenic anymore so I know I'm above a 2. :)
So all this is great news and from what I was reading the longer it takes to get into remission the more likely one is going to relapse. They usually want people with ALL to go into remission during the first 4-8 weeks of treatment. So maybe that's why there was such a big push for the transplant?? IDK. I'll still have to get minor chemo treatments to maintain my remission state mainly done as an outpatient but sometimes I will have to come into the hospital. Which I'll take that over any hospitalization that I've had thus far.
Anyways, it's been such a long hospital stay even though it's only been two weeks. I think because it's been so rough on my body. My weight is down to 144.6 as of this morning. It's down from a few days ago of 147. And what's crazy is I thought I gained weight because I have actually been eating as opposed to throwing up everything. Oh well, maybe once I start walking around on my own, I'll put on some weight.
So as far as my current health goes, the Infectious Disease team hasn't found anything else new. They have been watching me closely and they said my broncoscopy has yet to grow anything (still) but yesterday they asked for a urine culture (pee in a cup) and from that grew some sort of bacteria. So now they're watching that but luckily it can be treated with oral medication so I won't be here any longer to get it treated. The plan is to go home TOMORROW (FINALLY!!) after another eye exam to see if the lump on my eye has grown or shrunk. I'll have to then come back daily for my IV medications to treat the fungal infection I came here for.
So basically, because of these infections it'll be a while until I won't have to come to the hospital daily but this was a scary infection to have so it's better to be safe than sorry. :)
Alright well, I'm tired and hot and my ramen noodle scent is making me sick so I need to get off of here. I might take a walk somewhere or do some of my bed exercises.
I love you all very much and I definitely couldn't have made it this far, this fast without all of your prayers, thoughts, and kind words of encouragement. Thank you to all that have been behind me 100%. Words cannot explain how thankful I am that I have such wonderful people in my life. It makes me believe even more that the people you meet along the way are there for a reason. :)
have a good night.
kim
Monday, May 30, 2011
Friday, May 27, 2011
Day 59: Or so I thought....
Well, i thought I would just lay around here and rot but boy was I wrong. Today was an unexpected busy morning. It started with one of my doctors coming in and giving me results of my echocardiogram yesterday. They said my heart valve was good but there might be something going on with my lungs. So today they decided to do a Bronchoscopy procedure on me. They basically stuck a scope down my nose (I was asleep) and put some sort of wash down my windpipe and into my lungs and sucked it back out. Then they're gonna see if anything grows from it. I'm not sure how long the procedure itself lasted but I'm so glad I was asleep for it and it's over. I was dry coughing for a long time afterwards and probably still am but I'm doing good now. So before that procedure, the opthamologist came for a follow up on my eyes. From what he saw he said that the spot he was concerned about in my right eye shrunk. So it must've been a side effect of the fungal infection I had. He also said I have some sort of peripheral retinal degeneration that they want to watch. which is just awesome. one more thing to look at.
So anyways, other than that, I spent the rest of my afternoon sleeping and just resting. I was really tired today. I have Olive Garden coming tonight from an awesome person and I'm so excited about my salad!! :)
Well this was a quick update and as soon as I have results from my biopsy or anything else, I'll be sure to let you all know.
love you all,
kim
So anyways, other than that, I spent the rest of my afternoon sleeping and just resting. I was really tired today. I have Olive Garden coming tonight from an awesome person and I'm so excited about my salad!! :)
Well this was a quick update and as soon as I have results from my biopsy or anything else, I'll be sure to let you all know.
love you all,
kim
Thursday, May 26, 2011
Day 58: Almost Pointless
I feel like I'm wasting away here. I'm so bored and just wanting to get out of here. :(
So this morning I had my TTE procedure...the one where they stick something down my esophagus to take pictures of my heart valves to see if anything is growing on them. They rolled me past the window and I guess I haven't been out that early (they took me around 8:30am) but the sun felt awesome. As we were waiting by the elevators it felt so nice to be in the sun....granted it was way too bright for me to look outside but I imagined it was nice and pretty out there.
Anyways, I got downstairs to the cardiology area and it took forever to get started. They had to hook me up to machines, ask me a million questions, wait for the doctors, have them ask me a million questions and then they finally gave me some Novocaine to gargle (gross) and swallow and it was disgusting. I gargled way longer than 15 seconds but I figured they would say "okay now swallow" but of course not, they said "hahaha you gargled way longer than you're suppose to but that's okay" lame. So anyways, did that and then they gave me some tranquilizers and soon enough, I was OUT. I remember feeling the very end of the procedure (them taking it out and me practically choking) but I think I was still asleep. I later woke up and there transportation was ready to take me back down to my room.
And that was pretty much my day. I got a few visitors and that was nice because I was actually feeling pretty okay today. Hopefully I get out soon. We're still waiting for the bone marrow results and I guess now the Procedure I got done today....On a good note, I am off my "special diet" and can now eat raw veggies (yuck! but lettuce is a plus!) and fresh fruit! I celebrated today by eating hardly anything but fruit and salads for lunch and dinner. it was amazing. :)
Alright well, that's the update today. I feel a zillion times better than I did a week ago. Thank you for your continuous prayers and kind words. They helped get me through this tough time. I love you all. :)
Kim
So this morning I had my TTE procedure...the one where they stick something down my esophagus to take pictures of my heart valves to see if anything is growing on them. They rolled me past the window and I guess I haven't been out that early (they took me around 8:30am) but the sun felt awesome. As we were waiting by the elevators it felt so nice to be in the sun....granted it was way too bright for me to look outside but I imagined it was nice and pretty out there.
Anyways, I got downstairs to the cardiology area and it took forever to get started. They had to hook me up to machines, ask me a million questions, wait for the doctors, have them ask me a million questions and then they finally gave me some Novocaine to gargle (gross) and swallow and it was disgusting. I gargled way longer than 15 seconds but I figured they would say "okay now swallow" but of course not, they said "hahaha you gargled way longer than you're suppose to but that's okay" lame. So anyways, did that and then they gave me some tranquilizers and soon enough, I was OUT. I remember feeling the very end of the procedure (them taking it out and me practically choking) but I think I was still asleep. I later woke up and there transportation was ready to take me back down to my room.
And that was pretty much my day. I got a few visitors and that was nice because I was actually feeling pretty okay today. Hopefully I get out soon. We're still waiting for the bone marrow results and I guess now the Procedure I got done today....On a good note, I am off my "special diet" and can now eat raw veggies (yuck! but lettuce is a plus!) and fresh fruit! I celebrated today by eating hardly anything but fruit and salads for lunch and dinner. it was amazing. :)
Alright well, that's the update today. I feel a zillion times better than I did a week ago. Thank you for your continuous prayers and kind words. They helped get me through this tough time. I love you all. :)
Kim
Wednesday, May 25, 2011
Day 57:I'm ready to get out of here...so are my taste buds.
Today I thought was gonna be a slow day. It started off lame again around 5 or 6 i don't remember but I had to get my blood drawn. Since they can't draw blood from an IV they had to manually stick me...over and over and over and over again. So I had to get stuck again and my night nurse is TERRIBLE at it. She stuck me two times in my right arm around my elbows (where people usually get blood drawn from) then after she couldn't get it she moved to my left hand and she finally got it. By that time I was irritated and hot and my poor arms felt raw. :( On a brighter note, I got a new PICC line in my left arm (i had one on my right) today. I haven't got to use it but I'm just happy that I won't be getting stuck with a needle anymore. yay!
Alright so anyways, my bone marrow biopsy was today and I was so nervous about it. But they gave me some adivan tranquilizer and it started working immediately. As i was signing my contract thingy, I was feeling loopy and light. I was in and out of it during the procedure but I definitely felt the pain meds being injected....the classic "Sting and burn".....ugh, worst words ever. I also felt all the pressure that goes along with the biopsy but I think I barely felt that. Right now my lower back on my left side is sore so I'm just kinda laying here.
I'm still coughing today but right now it seems to be a little better. I feel like there is nothing in my cough and i keep asking myself....is this cough really necessary? So tomorrow I have a TEE (Trans-Esophageal Echocardiogram). Basically, they'll put a tube down my throat and use it to take pictures of my heart valves and to check for bacterial or fungal infection that a regular cardiograpm wouldn't show. that should be interesting because just having something being stuck down my throat doesn't sound fun. :(
Hopefully that will be the last of the prcedures because I've really just had enough. I hate being in a hospital and everything about it. The sheets smell funny, the hot food smells, the hallway smells, just everything ugh. it's annoying. I hate that they wake me up so early and I hate that I just sit in my room and hang out. :(
Well thats all that happened today...oh and I got a chest xray and a CT scan....not really sure what for but I got them.
So tomorrow is a big day...i figure out the results of the biopsy which means I find out if I still have leukemia in me. I feel good about it but everyday I'm here makes me worried.
Well, my mom is almost here with real food (hamburgers!) so I need to get to somewhat cleaning up. love you all
good night! :)
Kim
Alright so anyways, my bone marrow biopsy was today and I was so nervous about it. But they gave me some adivan tranquilizer and it started working immediately. As i was signing my contract thingy, I was feeling loopy and light. I was in and out of it during the procedure but I definitely felt the pain meds being injected....the classic "Sting and burn".....ugh, worst words ever. I also felt all the pressure that goes along with the biopsy but I think I barely felt that. Right now my lower back on my left side is sore so I'm just kinda laying here.
I'm still coughing today but right now it seems to be a little better. I feel like there is nothing in my cough and i keep asking myself....is this cough really necessary? So tomorrow I have a TEE (Trans-Esophageal Echocardiogram). Basically, they'll put a tube down my throat and use it to take pictures of my heart valves and to check for bacterial or fungal infection that a regular cardiograpm wouldn't show. that should be interesting because just having something being stuck down my throat doesn't sound fun. :(
Hopefully that will be the last of the prcedures because I've really just had enough. I hate being in a hospital and everything about it. The sheets smell funny, the hot food smells, the hallway smells, just everything ugh. it's annoying. I hate that they wake me up so early and I hate that I just sit in my room and hang out. :(
Well thats all that happened today...oh and I got a chest xray and a CT scan....not really sure what for but I got them.
So tomorrow is a big day...i figure out the results of the biopsy which means I find out if I still have leukemia in me. I feel good about it but everyday I'm here makes me worried.
Well, my mom is almost here with real food (hamburgers!) so I need to get to somewhat cleaning up. love you all
good night! :)
Kim
Tuesday, May 24, 2011
Day 56: Since I'm Awake
Right now I'm waiting in my hospital bed for my bone marrow biopsy. It's a big day because we will find out whether or not there is still leukemia cells (cancer) inside of me. I'm a bit nervous about this one because I'm NOT at Mercy. Things here at OU are just different. I feel like a number and not a name. lol. Anyways, I already had a full morning starting around midnight. Well last night they had complications with my IV and my options were to either stick out the pain (which I tried....believe me!) or get a new IV stuck somewhere else. I didn't want to get stuck again because since my muscles were non-existent for a few days my muscles, veins, joints....everything has just been raw. So any little pokes or pricks I get hurt like 5x more. And I always thought I had high pain tolerance and each time i got stuck it seemed like i cried like a baby. :(
So anyways, I ended up getting stuck once around midnight and the nurse said the vein she was going after busted and that stick was no good. Then around 4am another nurse came in and put another IV in me and she barely got into the vein. She wanted to get the IV in just enough to get my anti-biotics in me. Which was fine with me because I was scheduled to get a new PICC line in today anyway and I had been living with people sticking me with a needle for blood so why not...just one more day. So anyways, then they let me sleep until about 8am and in came the first of five doctors to talk to me. They asked just general questions, usually the same thing, does your stomach hurt? Are you feeling any pain? Is anything new going on? etc...I had some infection specialist people come in and look at bumps that have been popping up in random spots on my body (legs, head, arms) and they really had nothing to say except that they'll be watching all my tests to make sure no more fungal infections are in me hiding somewhere. With that said, they took me downstairs after all this and I got another echocardiogram to look for any abnormalities there that might have fungal stuff clinging to it. For the most part I'm pretty sure that the fungal infection was growing on my PICC line that they had removed about 6 days ago (maybe 7?).
hmm.....on Monday (yesterday) an Opthamologist came to visit me and did an examination of my eye. I usually HATE anyone messing with my eyes because I already know they're terrible, I know I need to wear glasses, and no I don't like staring into a big orange light when my eyes are dilated. But he came anyway. He was a really nice person so I didn't mind...Luckily, when he came in I already had my glasses on so he didn't have to see how bad my vision really was! lol. After examining, dying and dilating my eyes his conclusion was that I had some abnormalities but it was common in leukemia patients and nothing to worry about and no I don't have any fungal infections latching to my eyeball. He just said to notify a doctor if my vision changes or I notice any significant changes. Well....that's probably a nice $300 bill. :(
...
Well today I'm feeling a wee bit better. I'm still coughing and today my sense of smell is off. EVERYTHING smells TERRIBLE to me. They just changed my sheets but they SMELL. I'm sitting here in my room with a mask on because I can't stand the smell of anything! I wanted to throw up when I smelled my mom's coffee and usually I like the smell of coffee in the morning. It's weird. And i'm sure it's effecting my taste too because once again I'm not eating hardly anything b.c by the time I get it, it smells or tastes funny to me.....it's frustrating. My weight is down to about 150-151....which is down 6 more pounds. :( My legs are so skinny now and my arms are too. I worked so hard on having somewhat decent legs and now, i'm back to bones. LOL. Oh well....In other good news, I can finally walk on my own. I started walking again on Saturday when a physical therapist came to visit me and asked if I wanted to try to walk. I said yes but it was pretty brutal. She could tell I was struggling but she said she was glad that I actually got out because a lot of patients are hesitant to start walking again. She showed me leg exercises to do because I had mentioned that I felt like my legs were weak. On Monday I had the same PT lady and when we went for our walk, she said she noticed that I was walking a lot better. She said on Saturday I was walking flat footed and kinda stomping around but on Monday I was walking properly and we walked for a while until I started to get tired. :( Soooo....I guess that means no 5k when I get out, haha!
I'm have a terrible cough to me that my mom is more worried about than I am. I usually cough for a few days after being sick but I guess since I don't have as strong immune system, I can't really go off of what I used to be able to do. which is sad.
Anyways, these biopsy people are taking forever. I'm gonna get off of here try to relax before they come (these kinda hurt if I remember right) and possibly go for a walk with my mom down the hall.
Thank you all for your continuous prayers and good, positive, healthy thoughts. They have definitely helped me recover a little faster and have pushed me through the days I thought I would never get through. It's good to know that I have such a wonderful support system.
have a great Tuesday!
KIm
So anyways, I ended up getting stuck once around midnight and the nurse said the vein she was going after busted and that stick was no good. Then around 4am another nurse came in and put another IV in me and she barely got into the vein. She wanted to get the IV in just enough to get my anti-biotics in me. Which was fine with me because I was scheduled to get a new PICC line in today anyway and I had been living with people sticking me with a needle for blood so why not...just one more day. So anyways, then they let me sleep until about 8am and in came the first of five doctors to talk to me. They asked just general questions, usually the same thing, does your stomach hurt? Are you feeling any pain? Is anything new going on? etc...I had some infection specialist people come in and look at bumps that have been popping up in random spots on my body (legs, head, arms) and they really had nothing to say except that they'll be watching all my tests to make sure no more fungal infections are in me hiding somewhere. With that said, they took me downstairs after all this and I got another echocardiogram to look for any abnormalities there that might have fungal stuff clinging to it. For the most part I'm pretty sure that the fungal infection was growing on my PICC line that they had removed about 6 days ago (maybe 7?).
hmm.....on Monday (yesterday) an Opthamologist came to visit me and did an examination of my eye. I usually HATE anyone messing with my eyes because I already know they're terrible, I know I need to wear glasses, and no I don't like staring into a big orange light when my eyes are dilated. But he came anyway. He was a really nice person so I didn't mind...Luckily, when he came in I already had my glasses on so he didn't have to see how bad my vision really was! lol. After examining, dying and dilating my eyes his conclusion was that I had some abnormalities but it was common in leukemia patients and nothing to worry about and no I don't have any fungal infections latching to my eyeball. He just said to notify a doctor if my vision changes or I notice any significant changes. Well....that's probably a nice $300 bill. :(
...
Well today I'm feeling a wee bit better. I'm still coughing and today my sense of smell is off. EVERYTHING smells TERRIBLE to me. They just changed my sheets but they SMELL. I'm sitting here in my room with a mask on because I can't stand the smell of anything! I wanted to throw up when I smelled my mom's coffee and usually I like the smell of coffee in the morning. It's weird. And i'm sure it's effecting my taste too because once again I'm not eating hardly anything b.c by the time I get it, it smells or tastes funny to me.....it's frustrating. My weight is down to about 150-151....which is down 6 more pounds. :( My legs are so skinny now and my arms are too. I worked so hard on having somewhat decent legs and now, i'm back to bones. LOL. Oh well....In other good news, I can finally walk on my own. I started walking again on Saturday when a physical therapist came to visit me and asked if I wanted to try to walk. I said yes but it was pretty brutal. She could tell I was struggling but she said she was glad that I actually got out because a lot of patients are hesitant to start walking again. She showed me leg exercises to do because I had mentioned that I felt like my legs were weak. On Monday I had the same PT lady and when we went for our walk, she said she noticed that I was walking a lot better. She said on Saturday I was walking flat footed and kinda stomping around but on Monday I was walking properly and we walked for a while until I started to get tired. :( Soooo....I guess that means no 5k when I get out, haha!
I'm have a terrible cough to me that my mom is more worried about than I am. I usually cough for a few days after being sick but I guess since I don't have as strong immune system, I can't really go off of what I used to be able to do. which is sad.
Anyways, these biopsy people are taking forever. I'm gonna get off of here try to relax before they come (these kinda hurt if I remember right) and possibly go for a walk with my mom down the hall.
Thank you all for your continuous prayers and good, positive, healthy thoughts. They have definitely helped me recover a little faster and have pushed me through the days I thought I would never get through. It's good to know that I have such a wonderful support system.
have a great Tuesday!
KIm
Saturday, May 21, 2011
Day 53: And I Thought Finals Were Bad.
Sorry readers for my lack of update. I assure you that this has been one stressful week for me and my parents. Okay so from the top.....Saturday, I was allowed to sleep in just a little if I wanted. My parent hit a few (many) Garage Sales and i did NOT go with them. I've always hated that hobby of theirs. So right after they left i rolled myself off the couch and go ready to go back to Taft to help decorate a bit more, or as much as I was physically able too. I was so excited for prom because I was able to see all the Kids looking their finest! :) I did as much as I could and my back started hurting pretty quick so I got out of there. I was also pretty tired so I really just wanted to go home and go to sleep for a bit to rest up. I was planning to host my BF's Bacheloette Party at my place so I decided to take a quick nap and wake up at three to feel refreshed. Well I woke up at 4 (oops) only to my mom asking if I needed help for the party. I told here I didn't (which I really did) and continued to get up and but on whatever was close to me. I it was a quick one hour shopping trip to three different stores. When I got home I made a Huge Bachelorette sign and of course, I only realized at the end that I am the only person but I managed to get most of everything set up. THEN I decided to get ready for prom, it didn't take me very long to get ready because my hair. It was debut of my wig and I got a lot of compliments on it. it took a little bit off my paranoid self (thinking "OMG, EVERYONE KNOWS THIS IS A WIG!)
Anyways, I had fun at prom and planned to stay and little longer by my head started hurting from the loud music and my tight wig. It was a bummer but I'll be okay. So as soon as I got back the bachelorette party was about to start. Some girls showed up early (on time) and I did the final setting up and kinda just talked while we were munching and they were having a few glasses of wine. After a while, I started to get tired and my head started to hurt so laid down for a bit and was completely being a party pooper. I laid down for a good 25 minutes and felt a little more refreshed. When I got up I was a litte woozy. then a girl called and said she'd be a little late. SO I went straight to the bedroom and laid down a bit. great ideat. As soon as she got there I was ready to go, they mingled a bit, took a few shots, and we were finally on our way.
I was the dd (obviously) and had every intention of going in for a bit and leaving early. But I knew as soon as we were pulling up that I was going to be sick and I really felt like throwing up. So i told the girls to go ahead and go. It sucked to say that but they understood what I was going through and were cool about it. They hopped out and went in and I drove off. As soon as I was driving through the neighborhood I suddenly got sick and had to throw up. I stopped my car, opened the door and let it all out. It was all the water and gatorade I was drinking at the apartment that I was throwning up. Usually when I take medication without food or something and it settles on its own it rejects any and everthing. So it was weird. I threw up for a good three minutes before finally cleaning myself up, getting my energy back and driving home.
As soon as I got home I cleaned as much as possible before getting tired and I passed out on my own bed. The next morning I woke up and felt awful! Just exhausted and had a headache. I got myself up and moved to the couch and put in a movie to watch. I cooked some ramen noodles and was just thirsty!! I finished cleaning the rest of the decorations which really didn't take long at all....except my cat einstein decided it would be funny to knock off all the sequence onto the floor....twice. ugh.
So the rest of my day was spent on the couch not feeling too terrible but I was just fatigued. my parents came home and I was still laying on the couch. After a couple hours of that my mom finally asked how I felt and she took my temperature and it was 101.5! I told her I didn't feel like I was running a fever. She left me alone for a bit and retook it later and it was at 102.7! at that point I started to feel a little worse but still remained on my couch and ate the ramen noodles my mom had just cooked me. I fell asleep for a bit and she woke me up later at night and then my temp was 98.9! So we thought...hmmm it must've been from the chemo or just something normal because it's coming back down.
The next morning (monday) we had to wake up somewhat early to get to our appointment. But I was just not in the mood to get up. my mom had been saying "kim we have to get there early you need to get ready" but I had no energy. She ended up grabbing any sweatpants she could find and any hoodie out of my closet. I told her i didn't care what I looked like. So as I was putting my clothes on I felt terrrrrrrible. For some odd reason my calves were sore. I figured I was sore from my 30+ minutes of wearing my high heels and I was just being pathetic. I toughed it out and we went to my appointment. My mom had told the ladies who work in the infusion room that I had ran a fever the night before. So they got my vital signs as normal and indeed that day I was running a fever as well. So they called and told whoever they needed to about my fevers and she said, get to the ER asap! They gave me paperwork to make the process easier. So with whatever I had with me at the time (my purse) I was about to be admitted into the ER and most likely be taken to Oncology. Well....my sprite spilled in my purse so everything got wet! and that monday night, ALL of the hospital rooms were TAKEN. I had to stay in an ER room, which was so uncomfortable and my eyes were extremely sensitive to light and at this point my calves were cramping up so bad it hurt to walk. I was more shuffling around to get to the restroom. Also in ER they put a whole bunch of stuff on you that you really don't need. So all night if I had to use the restroom I had to call a nurse and he/she would come and unplug everything and it was just weird.
Luckily on Tuesday they got me onto a 7th floor Oncology room. It's a really oddly shaped room but it works. So on tuesday I was feeling terrible. I could hardly move and I needed help gettint up to use the restroom. I could still walk on my own but it was a slow, painful shuffle. The soreness feeling that I was getting had gotten worse and was spreading up through to my quads. I had a fever all day and I just feel crummy all day.
Wednesday and thursday were about the same kind of day. My legs soreness were at an all time high and I could barely move them. I needed my mom to help me just move them around (which was sleeping uncomfortable at night b/c i'm a toss and turner) I was still just barely walking on wednesday but on thursday I started being wheeled over in a portable old people toilet chair thing. it was AWFUL. and PAINFUL. My fevers were also peaking and i was sweating really bad between fevers, which was gross. I also found out that I had some sort of yeast infection. They took out my PICC like just in case it was growing on the plastic part of the line inside of me. So they put me on antifungal stuff on top of being on general antibiotics.
Friday, was one of the worst days yet. I had a high fever and just felt horrible. terrible. awful. any word you can think of along those lines. It was terrible. I could no longer walk or move any part of my body on my own. I felt so useless. Like literally, I was in the hospital only to try to live. it was almost like my body had given up on me. I felt like that every day as I got worse. I would cry if I couldn't move or just cry because the reality was that I couldn't do anything for myself anymore. It was just scary. So anyways, going to the restroom was about a 30 minute process. My mom had to get both of my legs off the bed, then she would have to try to straighten me out as best as she could. I had to sit the bed up as much as i would allow it to and then she would have to put her arms around me (like a hug) and move me around. She then had to pull me forward so I was somewhat close to the edge of the bed to make it a bit easier to move. Then, I raised the bed high enough to where I was practically standing. I then leaned against the bedside table and tried to adjust myself to sit down in the toilet chair. once I finally sat down I was wheeled to the toilet, went, and came back. The process getting up was 10x harder and took a lot longer because a lot was me on my own trying to get up. It was horrible because my poor legs always felt weak and it was just a horrible experience. And on average I used the restroom at least once every 4 hours because of all the fluids going through me. So this was definitely not a fun process.
At night was the worst, because when I knew I had to go Idk why but I would always think, well, Ill make it until morning....umm definitely didn't. I had to wake my mom up somehow to have her help me and it just sucked. Last night I went to the restroom three times. The first time I knew I had to go as soon as I sat down and I told my mom. SO our solution was to slide bucked under the portable in a little slot and I went beside my bed...odd. The second time I need to go I waited way too long and started to panic because I had to go so bad. I was moving around too much and I think I psyched myself out so much that I kept asking my mom if I could just go on myself. As soon as she said yes...I let it rip. lol. We called the nurse afterwards and she got us clean bedding and I got cleaned up myself. It was just sad.
anyways. I went to sleep and woke up SWEATING. it was so hot and I didn't feel good at all. I woke up on because, go figure, I had to use the restroom. So I got my mom up AGAIN and we repeated the entire process of using the restroom. We had some help from the nurse too, which was nice. But then my mom noticed my body temperature was sky high! My skin was hot and everything. I didn't notice, I just felt crummy. When I went back to sleep I only slept with a sheet over me because I was already pretty warm and I woke up to one of the residency doctors checking in with me. When she was talking (mainly to my mom) I noticed how sweaty I was. My head was wet, my back was too....it was gross. Eventually, I had to use the restroom AGAIN and this time I stayed in there to shower and I felt so much better afterwards.
Luckily after I showered I felt a little better and flexible in my legs. after my shower my mom had me walk a few paces back and forth and I felt like a baby giraffe. i was extremely wobbly....almost like I forgot how I walked....but it was progress and I was happy about that. Then I sat down and later Physical Therapy came up to do a few strength tests and evaluate my walking. She showed me exercises in my bed to do on my own and she would check on me the next day.
So basically, Ive been in the hospital for the past 6 days and it has been just TERRIBLE. It has been miserable but I'm alive taking it day by day. I have good days and bad days that help me get through one another (i think of the good days on the bad days that I dont' want to come back, and the bad days I think of the good days I can have)
Every day I learn something new and write stuff down and keep it in a box. So maybe one day I can help someone out.
Alright food is here, I'm a little hungry and eventually the smell will start making me sick so I better eat. LOL.
Love you all and sorry for the long wait. Just know I've been meaning to but it's just been that terrible.
keep the prayers coming I need it during this time....
kim
Anyways, I had fun at prom and planned to stay and little longer by my head started hurting from the loud music and my tight wig. It was a bummer but I'll be okay. So as soon as I got back the bachelorette party was about to start. Some girls showed up early (on time) and I did the final setting up and kinda just talked while we were munching and they were having a few glasses of wine. After a while, I started to get tired and my head started to hurt so laid down for a bit and was completely being a party pooper. I laid down for a good 25 minutes and felt a little more refreshed. When I got up I was a litte woozy. then a girl called and said she'd be a little late. SO I went straight to the bedroom and laid down a bit. great ideat. As soon as she got there I was ready to go, they mingled a bit, took a few shots, and we were finally on our way.
I was the dd (obviously) and had every intention of going in for a bit and leaving early. But I knew as soon as we were pulling up that I was going to be sick and I really felt like throwing up. So i told the girls to go ahead and go. It sucked to say that but they understood what I was going through and were cool about it. They hopped out and went in and I drove off. As soon as I was driving through the neighborhood I suddenly got sick and had to throw up. I stopped my car, opened the door and let it all out. It was all the water and gatorade I was drinking at the apartment that I was throwning up. Usually when I take medication without food or something and it settles on its own it rejects any and everthing. So it was weird. I threw up for a good three minutes before finally cleaning myself up, getting my energy back and driving home.
As soon as I got home I cleaned as much as possible before getting tired and I passed out on my own bed. The next morning I woke up and felt awful! Just exhausted and had a headache. I got myself up and moved to the couch and put in a movie to watch. I cooked some ramen noodles and was just thirsty!! I finished cleaning the rest of the decorations which really didn't take long at all....except my cat einstein decided it would be funny to knock off all the sequence onto the floor....twice. ugh.
So the rest of my day was spent on the couch not feeling too terrible but I was just fatigued. my parents came home and I was still laying on the couch. After a couple hours of that my mom finally asked how I felt and she took my temperature and it was 101.5! I told her I didn't feel like I was running a fever. She left me alone for a bit and retook it later and it was at 102.7! at that point I started to feel a little worse but still remained on my couch and ate the ramen noodles my mom had just cooked me. I fell asleep for a bit and she woke me up later at night and then my temp was 98.9! So we thought...hmmm it must've been from the chemo or just something normal because it's coming back down.
The next morning (monday) we had to wake up somewhat early to get to our appointment. But I was just not in the mood to get up. my mom had been saying "kim we have to get there early you need to get ready" but I had no energy. She ended up grabbing any sweatpants she could find and any hoodie out of my closet. I told her i didn't care what I looked like. So as I was putting my clothes on I felt terrrrrrrible. For some odd reason my calves were sore. I figured I was sore from my 30+ minutes of wearing my high heels and I was just being pathetic. I toughed it out and we went to my appointment. My mom had told the ladies who work in the infusion room that I had ran a fever the night before. So they got my vital signs as normal and indeed that day I was running a fever as well. So they called and told whoever they needed to about my fevers and she said, get to the ER asap! They gave me paperwork to make the process easier. So with whatever I had with me at the time (my purse) I was about to be admitted into the ER and most likely be taken to Oncology. Well....my sprite spilled in my purse so everything got wet! and that monday night, ALL of the hospital rooms were TAKEN. I had to stay in an ER room, which was so uncomfortable and my eyes were extremely sensitive to light and at this point my calves were cramping up so bad it hurt to walk. I was more shuffling around to get to the restroom. Also in ER they put a whole bunch of stuff on you that you really don't need. So all night if I had to use the restroom I had to call a nurse and he/she would come and unplug everything and it was just weird.
Luckily on Tuesday they got me onto a 7th floor Oncology room. It's a really oddly shaped room but it works. So on tuesday I was feeling terrible. I could hardly move and I needed help gettint up to use the restroom. I could still walk on my own but it was a slow, painful shuffle. The soreness feeling that I was getting had gotten worse and was spreading up through to my quads. I had a fever all day and I just feel crummy all day.
Wednesday and thursday were about the same kind of day. My legs soreness were at an all time high and I could barely move them. I needed my mom to help me just move them around (which was sleeping uncomfortable at night b/c i'm a toss and turner) I was still just barely walking on wednesday but on thursday I started being wheeled over in a portable old people toilet chair thing. it was AWFUL. and PAINFUL. My fevers were also peaking and i was sweating really bad between fevers, which was gross. I also found out that I had some sort of yeast infection. They took out my PICC like just in case it was growing on the plastic part of the line inside of me. So they put me on antifungal stuff on top of being on general antibiotics.
Friday, was one of the worst days yet. I had a high fever and just felt horrible. terrible. awful. any word you can think of along those lines. It was terrible. I could no longer walk or move any part of my body on my own. I felt so useless. Like literally, I was in the hospital only to try to live. it was almost like my body had given up on me. I felt like that every day as I got worse. I would cry if I couldn't move or just cry because the reality was that I couldn't do anything for myself anymore. It was just scary. So anyways, going to the restroom was about a 30 minute process. My mom had to get both of my legs off the bed, then she would have to try to straighten me out as best as she could. I had to sit the bed up as much as i would allow it to and then she would have to put her arms around me (like a hug) and move me around. She then had to pull me forward so I was somewhat close to the edge of the bed to make it a bit easier to move. Then, I raised the bed high enough to where I was practically standing. I then leaned against the bedside table and tried to adjust myself to sit down in the toilet chair. once I finally sat down I was wheeled to the toilet, went, and came back. The process getting up was 10x harder and took a lot longer because a lot was me on my own trying to get up. It was horrible because my poor legs always felt weak and it was just a horrible experience. And on average I used the restroom at least once every 4 hours because of all the fluids going through me. So this was definitely not a fun process.
At night was the worst, because when I knew I had to go Idk why but I would always think, well, Ill make it until morning....umm definitely didn't. I had to wake my mom up somehow to have her help me and it just sucked. Last night I went to the restroom three times. The first time I knew I had to go as soon as I sat down and I told my mom. SO our solution was to slide bucked under the portable in a little slot and I went beside my bed...odd. The second time I need to go I waited way too long and started to panic because I had to go so bad. I was moving around too much and I think I psyched myself out so much that I kept asking my mom if I could just go on myself. As soon as she said yes...I let it rip. lol. We called the nurse afterwards and she got us clean bedding and I got cleaned up myself. It was just sad.
anyways. I went to sleep and woke up SWEATING. it was so hot and I didn't feel good at all. I woke up on because, go figure, I had to use the restroom. So I got my mom up AGAIN and we repeated the entire process of using the restroom. We had some help from the nurse too, which was nice. But then my mom noticed my body temperature was sky high! My skin was hot and everything. I didn't notice, I just felt crummy. When I went back to sleep I only slept with a sheet over me because I was already pretty warm and I woke up to one of the residency doctors checking in with me. When she was talking (mainly to my mom) I noticed how sweaty I was. My head was wet, my back was too....it was gross. Eventually, I had to use the restroom AGAIN and this time I stayed in there to shower and I felt so much better afterwards.
Luckily after I showered I felt a little better and flexible in my legs. after my shower my mom had me walk a few paces back and forth and I felt like a baby giraffe. i was extremely wobbly....almost like I forgot how I walked....but it was progress and I was happy about that. Then I sat down and later Physical Therapy came up to do a few strength tests and evaluate my walking. She showed me exercises in my bed to do on my own and she would check on me the next day.
So basically, Ive been in the hospital for the past 6 days and it has been just TERRIBLE. It has been miserable but I'm alive taking it day by day. I have good days and bad days that help me get through one another (i think of the good days on the bad days that I dont' want to come back, and the bad days I think of the good days I can have)
Every day I learn something new and write stuff down and keep it in a box. So maybe one day I can help someone out.
Alright food is here, I'm a little hungry and eventually the smell will start making me sick so I better eat. LOL.
Love you all and sorry for the long wait. Just know I've been meaning to but it's just been that terrible.
keep the prayers coming I need it during this time....
kim
Friday, May 13, 2011
Day 42: Pain
Todays day started out fine. I had to wake up early (9 am!) to get to the OU Clinic for my daily blood test. We got there and I was feeling good. Even the nurses noticed that I looked a little healthier. I guess I looked miserable the past two days. LOL.
I went into the infusion room and refused to sit down on the "comfortable" chair all the way because I swear those chairs trigger my neck pain. I didn't have any that morning but I knew they were coming. They quickly drew my blood and we waited for the results and my counts....and of course, they're still low. My hemoglobin was at a 7.7 and platelets were at a 10, which is 2 points higher than when I came in. lol. So they told me I was gonna get one unit of platelets and 2 units of blood. I was kinda excited about it because I've been walking around here tired and pale so I needed it. I don't have to go back until monday because hospitals, clinics, or whatever on weekends are BRUTAL to get into.
Because this whole thing was a four to five hour process they put me in a special room (VIP treatment) where more "longer" term outpatients go. It took a while to actually get the stuff but once I got it they put it inside of me as fast as it would go. My blood pressure went down pretty low (usually your blood pressure raises when new blood/platelets go into you) and it was weird. I claim it was because I was so relaxed and in no pain. I was laying down the entire time, it was nice.
Anyways, after all of this my mom brought me a hamburger and we went home. I then went to Taft (the best school ever) to help with 8th grade prom stuff. it was great helping as much as I could. I hope I can go tomorrow...it'll just depend on my mood/pain level. I love seeing all my students all dressed up and on their "best/better" behavior. :)
After helping a little with what I could, my neck started hurting pretty bad so I came home and laid myself on the couch and went to sleep for a good two hours. It was great but I still can't believe I've been having such awful pain. it's so annoying and uncomfortable. And the worse part is that's the ONLY thing keeping me from going 100%. If I time my medications right tomorrow. I should be okay but pain meds only go so far. And on top of this, my head gets really cold and hot easy...which sparks a headache. UGH. I'm ready for all of this to go away. :(
Alright well nothing else to report on. My mom has been awesome trying to help me put things away and actually make my apartment livable. I need to go decoration shopping but I'll save that for another weekend....well, my neck is hurting now so that means I need to lay down....'
Good night, love you all.
xoxo
kim
I went into the infusion room and refused to sit down on the "comfortable" chair all the way because I swear those chairs trigger my neck pain. I didn't have any that morning but I knew they were coming. They quickly drew my blood and we waited for the results and my counts....and of course, they're still low. My hemoglobin was at a 7.7 and platelets were at a 10, which is 2 points higher than when I came in. lol. So they told me I was gonna get one unit of platelets and 2 units of blood. I was kinda excited about it because I've been walking around here tired and pale so I needed it. I don't have to go back until monday because hospitals, clinics, or whatever on weekends are BRUTAL to get into.
Because this whole thing was a four to five hour process they put me in a special room (VIP treatment) where more "longer" term outpatients go. It took a while to actually get the stuff but once I got it they put it inside of me as fast as it would go. My blood pressure went down pretty low (usually your blood pressure raises when new blood/platelets go into you) and it was weird. I claim it was because I was so relaxed and in no pain. I was laying down the entire time, it was nice.
Anyways, after all of this my mom brought me a hamburger and we went home. I then went to Taft (the best school ever) to help with 8th grade prom stuff. it was great helping as much as I could. I hope I can go tomorrow...it'll just depend on my mood/pain level. I love seeing all my students all dressed up and on their "best/better" behavior. :)
After helping a little with what I could, my neck started hurting pretty bad so I came home and laid myself on the couch and went to sleep for a good two hours. It was great but I still can't believe I've been having such awful pain. it's so annoying and uncomfortable. And the worse part is that's the ONLY thing keeping me from going 100%. If I time my medications right tomorrow. I should be okay but pain meds only go so far. And on top of this, my head gets really cold and hot easy...which sparks a headache. UGH. I'm ready for all of this to go away. :(
Alright well nothing else to report on. My mom has been awesome trying to help me put things away and actually make my apartment livable. I need to go decoration shopping but I'll save that for another weekend....well, my neck is hurting now so that means I need to lay down....'
Good night, love you all.
xoxo
kim
Thursday, May 12, 2011
Day 41: Neglect.
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
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
Saturday, May 7, 2011
Day 36: Familiar Feeling.
Well I didn't get out today. The doctor came in today and told me that I basically have too much chemo in my system and my counts are too low to be released. But I'm kinda glad I didn't get to go home today. I usually get way excited about things and today I was just not feeling it. I didn't sleep all day but I laid around with my eyes closed and relaxed. I didn't feel like talking to anyone or seeing anyone. And it seemed like just as I was on the verge of dozing off a nurse popped in and gave me more pills to take. They have me on everything. I even got a shot today to help boost my blood counts. It was weird because they actually gave me a shot shot....I had a choice of either on my side or my arms. It didn't hurt like I thought it would or maybe I was just really tired.
In other news, my mouth is starting to get the "swollen" feeling again that I remembered hating. So...mouth sores are on their way. oh great. Which means....nothing but soup for me. ugh.
There isn't a lot to report on today. The doctor said I'll get out Monday and return in about 10 or so days for a bone marrow biopsy to check the leukemia level. *fingers crossed*
Alright well I don't feel much like doing anything but laying here so I'm gonna get off. Love you all, have a good night. :)
kim
In other news, my mouth is starting to get the "swollen" feeling again that I remembered hating. So...mouth sores are on their way. oh great. Which means....nothing but soup for me. ugh.
There isn't a lot to report on today. The doctor said I'll get out Monday and return in about 10 or so days for a bone marrow biopsy to check the leukemia level. *fingers crossed*
Alright well I don't feel much like doing anything but laying here so I'm gonna get off. Love you all, have a good night. :)
kim
Friday, May 6, 2011
Day 35: Catching Up.
Today has been a relaxing day and I needed it. It started out for me sleeping in until 10:30, and for me that's late! The ambien that they've been giving me before I go to sleep has been helping a lot and I'm thankful. After I got up my doctor(s) came in and updated me on my health....
My platelets AND my red blood counts went UP on their own. IDK what this means but to me...it sounds GREAT. The fact that my body can actually make it's own red blood cells and it's platelets....so does that mean the leukemia is weak?? IDK. I didn't ask. lol.
Anyways, My white blood count is still at a 0.4 so I'm still prone to infection. They're going to give me a white blood cell shot to help me produce more white blood cells but I don't remember when they said they would give it to me.
So if I heard them right, and if I'm mistaken...I could be going HOME tomorrow. Crazy right?? I just finished my chemo dose and I guess it's procedure or standard to send patients home when they don't need it any more. Last time they held me for a bit longer and just as they were going to send me home I got a random fever. It makes me a bit nervous to go home with my WBC as low as they are but I guess that just means I need to be extra cautious!!
I'll let you all know what's going on tomorrow when I know for sure. Today has been one of my "weird" days. The AWFUL taste in my mouth is back where I can't seem to quench my thirst. I've been drinking everything I can a hold of and nothing is working. :( I'm still eating well and trying to eat as much because I feel the mouth sores might be coming on.
The nurses are surprised that I'm doing so well and that I'm not as sick. They said I had a pretty big dose of chemo the past 24 hours but I'm taking it well. :) It still makes me feel good when people brag on me. LOL. I guess that's the competitor in me.
So my old doctor came to visit me today. :) it made me happy to see him. My mom and I figured that he felt bad for "sending me away." He apologized and re-assured me that he liked me as a patient but wants the best care for me. He kept saying to call him if I ever needed anything and he would try to visit on fridays If I was here. He also goes to church with my new doctor....yet another coincidence? lol.
I move into my new apartment on SUNDAY. So if you need my new address please let me know. I know a lot of you asked about it, just know I moved.
ALright well other than that my day has consisted of taking medications (12 or more a day), putting a lot of eyedrops in, and laying around being lazy and trying to sleep. My nurse should be in soon with my sleeping medications so I'm gonna try to relax and get my pre-sleep on. :)
Thanks for reading as usual and giving me all the love and support that you have. especially around the holiday (mother's day) keep my mom in mind especially and just my entire family in general. if you're spending time with your family take a little time to appreciate them. Life can change so quick that once you realize what's going on, you don't want to regret anything.
good night.
xoxo
kim
My platelets AND my red blood counts went UP on their own. IDK what this means but to me...it sounds GREAT. The fact that my body can actually make it's own red blood cells and it's platelets....so does that mean the leukemia is weak?? IDK. I didn't ask. lol.
Anyways, My white blood count is still at a 0.4 so I'm still prone to infection. They're going to give me a white blood cell shot to help me produce more white blood cells but I don't remember when they said they would give it to me.
So if I heard them right, and if I'm mistaken...I could be going HOME tomorrow. Crazy right?? I just finished my chemo dose and I guess it's procedure or standard to send patients home when they don't need it any more. Last time they held me for a bit longer and just as they were going to send me home I got a random fever. It makes me a bit nervous to go home with my WBC as low as they are but I guess that just means I need to be extra cautious!!
I'll let you all know what's going on tomorrow when I know for sure. Today has been one of my "weird" days. The AWFUL taste in my mouth is back where I can't seem to quench my thirst. I've been drinking everything I can a hold of and nothing is working. :( I'm still eating well and trying to eat as much because I feel the mouth sores might be coming on.
The nurses are surprised that I'm doing so well and that I'm not as sick. They said I had a pretty big dose of chemo the past 24 hours but I'm taking it well. :) It still makes me feel good when people brag on me. LOL. I guess that's the competitor in me.
So my old doctor came to visit me today. :) it made me happy to see him. My mom and I figured that he felt bad for "sending me away." He apologized and re-assured me that he liked me as a patient but wants the best care for me. He kept saying to call him if I ever needed anything and he would try to visit on fridays If I was here. He also goes to church with my new doctor....yet another coincidence? lol.
I move into my new apartment on SUNDAY. So if you need my new address please let me know. I know a lot of you asked about it, just know I moved.
ALright well other than that my day has consisted of taking medications (12 or more a day), putting a lot of eyedrops in, and laying around being lazy and trying to sleep. My nurse should be in soon with my sleeping medications so I'm gonna try to relax and get my pre-sleep on. :)
Thanks for reading as usual and giving me all the love and support that you have. especially around the holiday (mother's day) keep my mom in mind especially and just my entire family in general. if you're spending time with your family take a little time to appreciate them. Life can change so quick that once you realize what's going on, you don't want to regret anything.
good night.
xoxo
kim
Thursday, May 5, 2011
Day 34: rolling in the deep.
Quick post....I had my intrathecal Chemotherapy this morning around 9am. 2 residency doctors did the procedure and one intern (student?) watched. It didn't hurt as much as it did the first time but it hurt enough to make me cringe a bit. It lasted maybe 15 minutes and they did it bedside rather than taking me down to radiology like they did before. To "recover" I had to lay flat for 30 minutes to avoid headaches and whatever else. They've been giving me my steroid eyedrop's every 2 hours and IDK if i'm paranoid or have it in my head that it may effect my eyes....but it's harder to see the tv than before....and yes i'm wearing my glasses. great.
Let the procedure begin!
Umm....ow.
close up of the chemo....
uhhh idk what that is but it looks scary!
Done...and I'm still alive!!
So other than that, I had plans of SLEEPING all day long. But I just couldn't. I'm so used to being places and keeping busy because I always felt like I was behind or volunteering myself for everything and anything. this is just a change of pace. On a good note....I found something else pretty cool about my new hospital. When I order a drink from the cafeteria downstairs they give me a HUGE bottle of whatever....coke, sprite, dr pepper, SWEET tea. I'm on the bone marrow diet so they have to have everything reliever covered....so now my goal is to build up a pretty good stash of whatever I can....lol. this i going to be awesome & a way I entertain myself. LOL.
Hmm there isn't a lot to report about. I miss my students a lot and I wish I could be at work to spend time with them. I feel like this experience has bonded me closer to some. I feel all the love they have been sending and it makes me stronger and feeds my positivity. Here are two poems that I was sent. I guess Taft is having a poetry contest for the students. The contest was to write about your favorite teacher....When I read this I cried. I think they should both win because I HIGHLY doubt that anyone else's better.....sigh.
brace yourself.
and one more...
This my friends is why I keep going. They are the reason I kept on going to school when I was sick and had no energy. They noticed how I looked on the outside and knew something was wrong with me on the inside. Taft has some of the craziest kid to teach but each and everyone of them have some of the biggest hearts I've ever know anyone to have. I'm so lucky to be at such a wonderful school........annnnnnnd i'm crying.
awesome. LOL
Anyways, They have been so good to me I can't let them down. Not now....not ever.
I have put so much effort into trying to build relationships with them. I hope that they take this experience I'm going through now and learn a little about life and see just how short it could be and how it can change at any second.
These two poems make the stress, the sleepness nights, the endless lectures, the random yelling, and all the goofy times I made a fool of myself in front of them....worth it. I love them.
Let the procedure begin!
Umm....ow.
close up of the chemo....
uhhh idk what that is but it looks scary!
Done...and I'm still alive!!
So other than that, I had plans of SLEEPING all day long. But I just couldn't. I'm so used to being places and keeping busy because I always felt like I was behind or volunteering myself for everything and anything. this is just a change of pace. On a good note....I found something else pretty cool about my new hospital. When I order a drink from the cafeteria downstairs they give me a HUGE bottle of whatever....coke, sprite, dr pepper, SWEET tea. I'm on the bone marrow diet so they have to have everything reliever covered....so now my goal is to build up a pretty good stash of whatever I can....lol. this i going to be awesome & a way I entertain myself. LOL.
Hmm there isn't a lot to report about. I miss my students a lot and I wish I could be at work to spend time with them. I feel like this experience has bonded me closer to some. I feel all the love they have been sending and it makes me stronger and feeds my positivity. Here are two poems that I was sent. I guess Taft is having a poetry contest for the students. The contest was to write about your favorite teacher....When I read this I cried. I think they should both win because I HIGHLY doubt that anyone else's better.....sigh.
brace yourself.
and one more...
This my friends is why I keep going. They are the reason I kept on going to school when I was sick and had no energy. They noticed how I looked on the outside and knew something was wrong with me on the inside. Taft has some of the craziest kid to teach but each and everyone of them have some of the biggest hearts I've ever know anyone to have. I'm so lucky to be at such a wonderful school........annnnnnnd i'm crying.
awesome. LOL
Anyways, They have been so good to me I can't let them down. Not now....not ever.
I have put so much effort into trying to build relationships with them. I hope that they take this experience I'm going through now and learn a little about life and see just how short it could be and how it can change at any second.
These two poems make the stress, the sleepness nights, the endless lectures, the random yelling, and all the goofy times I made a fool of myself in front of them....worth it. I love them.
Wednesday, May 4, 2011
Day 33: Might as Well Keep on Going.....
Three things.
#1 - They put some leg compressor on me tonight so my legs don't swell and blood properly circulates. I remember last time I got chemo (like it was forever ago, lol) my feet/legs started getting puffy and swelling. Maybe it was in their notes they got faxed. All i know is it's LOUD and makes my legs sweat....gross. I'll stick it out for a night but two nights may be pushing it.
and it makes me look like I have fat cankles. ugh. lol.
#2 - I've still been hyped up on those steroids....and I'm hungry. LOL. Remember last time I was eating like four meals a day. Too bad I can just get up and make a light night run to taco bell like back in the day. :( Oh well. My blood pressure was a bit high tonight but other than that nothing has changed.
#3 - You may have a heart attack when I type this.
here it goes.
I MAY sign up to run a half marathon in October. in California.
Well I was talking to a friend who told me he wants to run a marathon in the fall. We started to talk even more and I noticed, and was told, that this Team Taft 5k run inspired them to start running. I guess they got the natural high and excitement that is so contagious to people and they want more. SO anyways, a couple years ago (2) I was signed up to run the Maui Marathon. But not as an individual. I wanted to be a part of something and do something cool. You know, have a cool story to add to my life accomplishments. WELL, I actually was part of the Leukemia & Lymphoma Society's TEAM IN TRAINING. They basically take your little hand and practically walk you through a half marathon, full marathon, triathlon, or a century ride. LONG story short....we both got way excited and I said, why not?? By then I should be fine to run and If I continue to work hard (in the hospital by taking care of myself and out of the hospital by taking ALL safety precautions and training WHEN i can) I can do it.
I know this sounds CRAZY and I'm sure a lot of you are thinking this isn't a good idea....it's 13.1 miles!! But it's a challenge. I will try to train as much as I can with the "TEAM" (which will start in Mid June) and as much as I can on my own. **Crosses fingers** I hope that I go into remission soon or have the transplant soon to help jump start that goal. BUT if I'm not ready for it, I won't do it...
It's just "in the works" right now but I promise from here on out to be as healthy as possible. that sounds weird. Well I promise to do whatever I need to do to increase my chances of going into remission and staying there. If the doctor says eat a pile of.....shrimp every other day (cooked of course) I will. If he asks me to limit my workout to three times a week, I will NOT cheat and go running every day thinking it will help. I will be good. I promise.
It would mean the WORLD to me to accomplish this and that is also the 6 month mark of hardcore treatments. and a great birthday gift to myself (birthday is on the 4th) race is on the 9th.
I can do it.
I know I can.
I'm Kim Begay.
Good Night.
Spinal Tap in the morning. I need rest.
#1 - They put some leg compressor on me tonight so my legs don't swell and blood properly circulates. I remember last time I got chemo (like it was forever ago, lol) my feet/legs started getting puffy and swelling. Maybe it was in their notes they got faxed. All i know is it's LOUD and makes my legs sweat....gross. I'll stick it out for a night but two nights may be pushing it.
and it makes me look like I have fat cankles. ugh. lol.
#2 - I've still been hyped up on those steroids....and I'm hungry. LOL. Remember last time I was eating like four meals a day. Too bad I can just get up and make a light night run to taco bell like back in the day. :( Oh well. My blood pressure was a bit high tonight but other than that nothing has changed.
#3 - You may have a heart attack when I type this.
here it goes.
I MAY sign up to run a half marathon in October. in California.
Well I was talking to a friend who told me he wants to run a marathon in the fall. We started to talk even more and I noticed, and was told, that this Team Taft 5k run inspired them to start running. I guess they got the natural high and excitement that is so contagious to people and they want more. SO anyways, a couple years ago (2) I was signed up to run the Maui Marathon. But not as an individual. I wanted to be a part of something and do something cool. You know, have a cool story to add to my life accomplishments. WELL, I actually was part of the Leukemia & Lymphoma Society's TEAM IN TRAINING. They basically take your little hand and practically walk you through a half marathon, full marathon, triathlon, or a century ride. LONG story short....we both got way excited and I said, why not?? By then I should be fine to run and If I continue to work hard (in the hospital by taking care of myself and out of the hospital by taking ALL safety precautions and training WHEN i can) I can do it.
I know this sounds CRAZY and I'm sure a lot of you are thinking this isn't a good idea....it's 13.1 miles!! But it's a challenge. I will try to train as much as I can with the "TEAM" (which will start in Mid June) and as much as I can on my own. **Crosses fingers** I hope that I go into remission soon or have the transplant soon to help jump start that goal. BUT if I'm not ready for it, I won't do it...
It's just "in the works" right now but I promise from here on out to be as healthy as possible. that sounds weird. Well I promise to do whatever I need to do to increase my chances of going into remission and staying there. If the doctor says eat a pile of.....shrimp every other day (cooked of course) I will. If he asks me to limit my workout to three times a week, I will NOT cheat and go running every day thinking it will help. I will be good. I promise.
It would mean the WORLD to me to accomplish this and that is also the 6 month mark of hardcore treatments. and a great birthday gift to myself (birthday is on the 4th) race is on the 9th.
I can do it.
I know I can.
I'm Kim Begay.
Good Night.
Spinal Tap in the morning. I need rest.
Day 33: Feeling Brand New.
Today has been a good day.
I don't know what it is but I feel good. About life and myself. I'm just happy with life right now. I'm sure that many of you are thinking, WHAT?! Lol.
Of course, If I could change the fact that I'm sitting in a hospital rotting while doing chemotherapy, I would. But I can't. And I think that by accepting that I have this disease makes it a lot easier. Through my entire 33 days living with cancer, I have always accepted it. From day 1. I kept a positive attitude and like any human, I had my up and down days & days that I started to cry no matter where I was. But, a huge change happened around day 14 after I was diagnosed. I started losing my hair.
I'm sure most girls/women go through what I was/am going through. Losing all your hair on your head is depressing. Just seeing it fall out in strands or clumps gives me the idea of dying hair and it is a visual representation of what is going on in my body. Like I said, It's a physical change that is just hard to accept...and it came and went whether I was ready for it or not. And I definitely wasn't.
So yesterday when my friend and his dad came over to visit me (close friends for about 6 years now) they had just bought a new camera. At first, I was wearing my scarf and they wanted to take pictures. I was so tired yesterday at one point that I didn't want to move and I guess I looked over at the camera at just the right time but I looked angry (lol) and the picture was GORGEOUS. He did a few black and white swaps and what not and then it was on. My friends dad was wanting to win an "amateur" photo contest that was going on at his work. So he decided to use one of my pictures. He wanted to capture a few different shots (he explained but I forgot what he said) and emotions. At first, the pictures and my facial expressions were showing the emotion of angry, upset, emotional, attitude, or a prisoner. Then after about 10 or 15 head shots later, different more soft expressions came out. We laughed and made goofy faces as well and after a few compliments/jokes on how proportioned my head is and the fact that I didn't have scars came up or weird indentions....I started to feel a bit more confident.
At one point I thought to myself, these are the types of people who I need to constantly surround myself with. Through all of this that I am going through, I can see thru the fakeness and ignorance of people just by reading/seeing their reaction towards me. But i won't get back on that train again.....So anyways, the very LAST picture I took was the one that I said was my favorite. It shows so many things and makes you wonder (if you didn't know me) what you would do if you were her? Why is she happy?....I could go on and on about it but I'll let you determine what the photos mean. Every time I look back at my blog and look at those pictures, I see something more than the last time. They are just awesome.
So back to what I was originally saying, after the pictures were taken my friend said to me, "So which one are you going to put on your facebook?"
I thought he was crazy because I was like.....PEOPLE ARE GOING TO SEE ME! His response was, "So? And? You already share you blog and post about chemo/cancer updates, it's not like they don't know what's going on."
He was in fact telling the truth. I've been so open about my journey that, what was I trying to hide? People know I lost my hair, people know I'm in the hospital, and people have already seen me in person or on my 5k pictures that I don't have my hair anymore. So I started off by posting some pictures on my blog and I debated whether or not I should hit the "publish post" for a really long time. I don't know what I was hiding. Maybe I wanted people who haven't seen me (family who live far away, friends I haven't seen in forever, random creepy people reading my blogs who I have never talked to.....LOL) to remember me as the same person they remember. But then I was thought, but I'm NOT the same person....like, at all.
So I did it. I posted it on my blog. Then a few hours later, I decided to chose the best one (well, my favorite) and put it on my facebook. I was more scared about my facebook post because some of my students are friends and I didn't know how they would react. They remember their teacher of 9 months one way....and now she has no hair?? It's hard for them to completely understand exactly why I'm in the hospital and why this is happening to me.
But I posted it on my facebook wall at like 3 in the morning (because I couldn't sleep) and so far, I got a lot of good responses and it just made my day. I keep looking back at those pictures and I'm in love with them. :) MAN, Who would've known that I think of all these things over an entire 24 hour period. LOL. So much stress over my hair....take a minute and think how you would take it???......oh the things that make you say hmmmmmmmmmmm.....
So in other news....my white blood count went down to a 0.4!! noooo....it was at a 0.7 yesterday. So I'm back on the steroids and once again...i'm hungry and eating everything in sight!! I'm craving sour cream & onion potato chips....I'm about to ask my mom to go on a quick trip to the vending machines!!!!
**side note**
I don't understand but i absolutely LOOOOVVEEE vending machines in hospitals. It's the weirdest thing ever because they're always wayyy over priced for the quantity they give you or they always get stuck when you really want it. But vending machines are like the best thing since sliced bread. It's like...you put your money in & you stand there and twiddle your thumbs arguing with yourself what you want because there are so many options. Almost everything is under one dollar....and it's like the slot machines but you WIN like almost every time!! I'm so weird for this but I just get really excited about them when I see them....
**end side note**
My blood pressure went way down from the first night i was here and I'm starting to get adjusted to this place. I will always miss my Mercy Hospital but this place has the better treatment for me so I belong here...and I totally just ran kinda by here during my 5k so I'm meant to be here. My hemoglobin is at a 9.8. So it's also down from the 11.7 I had on..... Monday? My platelets were okay. Speaking of platelets, I found a cbc result before I got admitted into Mercy. I had a platelet count of an 8.....yes that's right....no i didn't forget a 0....my platelet count was an 8 out of 250. If you can recall (if you were around me during my "sick" days) I had bruises all over my body that I had no idea where it came from.
that's just terrible. 8,000 out of 250,0000. wow. once again. I'm thankful I listened to people and went to the doctor.
Alright well, I'm still on my first dose of Chemotherapy (Methotrexate). I have about 6 or 7 hours left of it. Tomorrow morning I'm scheduled for another spinal tap where they inject me with chemo and it circulates up and round my spinal cord and into my brain area. I gotta be laying down afterwards and after I shared with my doctor just how terrible the initial pain was (read my blog) she said we can definitely get some pain meds in me before I go down to take the sting away.
So I need to get some sleep soon because last night I only got 3 hours and the night before I got 4. My body needs sleep. :(
Alright well other than that, I'm locked in my room so I can't go out and make friends with my grumpy neighbors or interact with people or eavesdrop on the latest 7th floor gossip. So sorry people, these may not be as exciting.
OOOOOHHHHH.....i forgot, I met the doctor who my old doctor, Dr Reynolds, was talking to. He is the transplant specialist and I got a really good vibe from him. He came in dressed like a doctor (slacks and button up) he has long dark brown hair (think of a hippie) and has a good sense of humor. He introduced himself and said, I don't need you to introduce yourself, I read all about you in the paper on monday!! Then we talked about the run and what Dr Reynolds thought about it (haha). He also asked me if I was a nice navajo or a mean navajo. When he was doing his residency i guess he worked on the Navajo Reservation at three different locations and one was Tuba City (the usual grandparent central location on my dad's side). Another coincidence? i think not. He then talked more about where he worked at including South Dakota (where my parents live) and eventually we got down to talking about transplant stuff. Right now, I think they want to see if I can get into remission through this round of chemo....then go from there. And it depends on if I can find a correct match for me.
Alright so this was a longer post than expected...I guess I'm more bored than I thought. LOL.
I'm gonna drink my coke, send my mom on a chip run, and eventually take a late afternoon cat nap. or just watch TV and hope jersey shore comes on! lol
I love you all. Thanks for the prayers, cards, thoughts, and just for reading this on a regular basis. you guys are awesome, I really can't do this without all of you. :)
have a good afternoon! :)
Kim
I don't know what it is but I feel good. About life and myself. I'm just happy with life right now. I'm sure that many of you are thinking, WHAT?! Lol.
Of course, If I could change the fact that I'm sitting in a hospital rotting while doing chemotherapy, I would. But I can't. And I think that by accepting that I have this disease makes it a lot easier. Through my entire 33 days living with cancer, I have always accepted it. From day 1. I kept a positive attitude and like any human, I had my up and down days & days that I started to cry no matter where I was. But, a huge change happened around day 14 after I was diagnosed. I started losing my hair.
I'm sure most girls/women go through what I was/am going through. Losing all your hair on your head is depressing. Just seeing it fall out in strands or clumps gives me the idea of dying hair and it is a visual representation of what is going on in my body. Like I said, It's a physical change that is just hard to accept...and it came and went whether I was ready for it or not. And I definitely wasn't.
So yesterday when my friend and his dad came over to visit me (close friends for about 6 years now) they had just bought a new camera. At first, I was wearing my scarf and they wanted to take pictures. I was so tired yesterday at one point that I didn't want to move and I guess I looked over at the camera at just the right time but I looked angry (lol) and the picture was GORGEOUS. He did a few black and white swaps and what not and then it was on. My friends dad was wanting to win an "amateur" photo contest that was going on at his work. So he decided to use one of my pictures. He wanted to capture a few different shots (he explained but I forgot what he said) and emotions. At first, the pictures and my facial expressions were showing the emotion of angry, upset, emotional, attitude, or a prisoner. Then after about 10 or 15 head shots later, different more soft expressions came out. We laughed and made goofy faces as well and after a few compliments/jokes on how proportioned my head is and the fact that I didn't have scars came up or weird indentions....I started to feel a bit more confident.
At one point I thought to myself, these are the types of people who I need to constantly surround myself with. Through all of this that I am going through, I can see thru the fakeness and ignorance of people just by reading/seeing their reaction towards me. But i won't get back on that train again.....So anyways, the very LAST picture I took was the one that I said was my favorite. It shows so many things and makes you wonder (if you didn't know me) what you would do if you were her? Why is she happy?....I could go on and on about it but I'll let you determine what the photos mean. Every time I look back at my blog and look at those pictures, I see something more than the last time. They are just awesome.
So back to what I was originally saying, after the pictures were taken my friend said to me, "So which one are you going to put on your facebook?"
I thought he was crazy because I was like.....PEOPLE ARE GOING TO SEE ME! His response was, "So? And? You already share you blog and post about chemo/cancer updates, it's not like they don't know what's going on."
He was in fact telling the truth. I've been so open about my journey that, what was I trying to hide? People know I lost my hair, people know I'm in the hospital, and people have already seen me in person or on my 5k pictures that I don't have my hair anymore. So I started off by posting some pictures on my blog and I debated whether or not I should hit the "publish post" for a really long time. I don't know what I was hiding. Maybe I wanted people who haven't seen me (family who live far away, friends I haven't seen in forever, random creepy people reading my blogs who I have never talked to.....LOL) to remember me as the same person they remember. But then I was thought, but I'm NOT the same person....like, at all.
So I did it. I posted it on my blog. Then a few hours later, I decided to chose the best one (well, my favorite) and put it on my facebook. I was more scared about my facebook post because some of my students are friends and I didn't know how they would react. They remember their teacher of 9 months one way....and now she has no hair?? It's hard for them to completely understand exactly why I'm in the hospital and why this is happening to me.
But I posted it on my facebook wall at like 3 in the morning (because I couldn't sleep) and so far, I got a lot of good responses and it just made my day. I keep looking back at those pictures and I'm in love with them. :) MAN, Who would've known that I think of all these things over an entire 24 hour period. LOL. So much stress over my hair....take a minute and think how you would take it???......oh the things that make you say hmmmmmmmmmmm.....
So in other news....my white blood count went down to a 0.4!! noooo....it was at a 0.7 yesterday. So I'm back on the steroids and once again...i'm hungry and eating everything in sight!! I'm craving sour cream & onion potato chips....I'm about to ask my mom to go on a quick trip to the vending machines!!!!
**side note**
I don't understand but i absolutely LOOOOVVEEE vending machines in hospitals. It's the weirdest thing ever because they're always wayyy over priced for the quantity they give you or they always get stuck when you really want it. But vending machines are like the best thing since sliced bread. It's like...you put your money in & you stand there and twiddle your thumbs arguing with yourself what you want because there are so many options. Almost everything is under one dollar....and it's like the slot machines but you WIN like almost every time!! I'm so weird for this but I just get really excited about them when I see them....
**end side note**
My blood pressure went way down from the first night i was here and I'm starting to get adjusted to this place. I will always miss my Mercy Hospital but this place has the better treatment for me so I belong here...and I totally just ran kinda by here during my 5k so I'm meant to be here. My hemoglobin is at a 9.8. So it's also down from the 11.7 I had on..... Monday? My platelets were okay. Speaking of platelets, I found a cbc result before I got admitted into Mercy. I had a platelet count of an 8.....yes that's right....no i didn't forget a 0....my platelet count was an 8 out of 250. If you can recall (if you were around me during my "sick" days) I had bruises all over my body that I had no idea where it came from.
that's just terrible. 8,000 out of 250,0000. wow. once again. I'm thankful I listened to people and went to the doctor.
Alright well, I'm still on my first dose of Chemotherapy (Methotrexate). I have about 6 or 7 hours left of it. Tomorrow morning I'm scheduled for another spinal tap where they inject me with chemo and it circulates up and round my spinal cord and into my brain area. I gotta be laying down afterwards and after I shared with my doctor just how terrible the initial pain was (read my blog) she said we can definitely get some pain meds in me before I go down to take the sting away.
So I need to get some sleep soon because last night I only got 3 hours and the night before I got 4. My body needs sleep. :(
Alright well other than that, I'm locked in my room so I can't go out and make friends with my grumpy neighbors or interact with people or eavesdrop on the latest 7th floor gossip. So sorry people, these may not be as exciting.
OOOOOHHHHH.....i forgot, I met the doctor who my old doctor, Dr Reynolds, was talking to. He is the transplant specialist and I got a really good vibe from him. He came in dressed like a doctor (slacks and button up) he has long dark brown hair (think of a hippie) and has a good sense of humor. He introduced himself and said, I don't need you to introduce yourself, I read all about you in the paper on monday!! Then we talked about the run and what Dr Reynolds thought about it (haha). He also asked me if I was a nice navajo or a mean navajo. When he was doing his residency i guess he worked on the Navajo Reservation at three different locations and one was Tuba City (the usual grandparent central location on my dad's side). Another coincidence? i think not. He then talked more about where he worked at including South Dakota (where my parents live) and eventually we got down to talking about transplant stuff. Right now, I think they want to see if I can get into remission through this round of chemo....then go from there. And it depends on if I can find a correct match for me.
Alright so this was a longer post than expected...I guess I'm more bored than I thought. LOL.
I'm gonna drink my coke, send my mom on a chip run, and eventually take a late afternoon cat nap. or just watch TV and hope jersey shore comes on! lol
I love you all. Thanks for the prayers, cards, thoughts, and just for reading this on a regular basis. you guys are awesome, I really can't do this without all of you. :)
have a good afternoon! :)
Kim
Day 33: Letting Go.
enjoy.
by far my favorite.
I think I look happy.
and calm.
Tuesday, May 3, 2011
Day 32: Round 2....ding...ding....fight!
I started my official second round of chemo tonight. I don't remember a time but it was a little before the Thunder game started. I did a small dose of Methotrexate. I had it before as a spinal tap chemo just before I got discharged from Mercy. It was a small little bag that only took about 2 hours to go in. I just finished that bag and now they have a new bag up and ready to go. The next bag will go into my IV over a 24 hour period.
Emotionally, I'm fine. I don't feel any different and after talking to doctors ALLLL DDAAAYY they said that this round of chemo is LESS harsh than my first round. They said I had a pretty harsh first round. Which explains my mouth sores, body rash, weird fingernail and skin reactions.
go hard or go home right?
With that in mind, this round should be no problem-o. It is a 5 day chemo treatment and they project that I will be outta here in about 7 days. Now if I'm here in 30 days later, I may go crazy. I'm already bored and wanting to go run (lol). Alright well I'm tired because last night I got 3-4 hours of sleep. I didn't nap. and They already warned me they'll be in at 5am.
so here we go again.
Round 2.
don't worry.
I got this. I ran a 5k with cancer. :)
goodnight!
Emotionally, I'm fine. I don't feel any different and after talking to doctors ALLLL DDAAAYY they said that this round of chemo is LESS harsh than my first round. They said I had a pretty harsh first round. Which explains my mouth sores, body rash, weird fingernail and skin reactions.
go hard or go home right?
With that in mind, this round should be no problem-o. It is a 5 day chemo treatment and they project that I will be outta here in about 7 days. Now if I'm here in 30 days later, I may go crazy. I'm already bored and wanting to go run (lol). Alright well I'm tired because last night I got 3-4 hours of sleep. I didn't nap. and They already warned me they'll be in at 5am.
so here we go again.
Round 2.
don't worry.
I got this. I ran a 5k with cancer. :)
goodnight!
Day 32: Mercy Spoiled Me.
Alright, sorry for my last post. I just read it and I sounded crazy. LOL.
I was talking to a friend about what had happened and how frustrated I was last night...
Me: "Everything has been so unorganized and I can't stand it. I like orderly things and plans. And you would think people can communicate a little better. I mean come on, were not doing Morse code or sending snail mail anymore..."
friend: "I'm sorry Kim. I bet you are going crazy because nothing is written down huh?"
Me: "EXACTLY! It makes me want to pull out all of my hair and run out the door screaming...."
.:awkward pause:.
friend: "ummmm...."
Me: "OMG, my hair is already gone!"
LOL...sometimes I am just ridiculous and don't even realize it....Anyways, today hasn't been TOO bad. I'm adjusting well to my new place and of course, trying to be nice to everybody. I had a really good tech today. She was fun. She laughed at me, cracked jokes, and was just overall a happy person. My nurses have also been great but I think I got spoiled at Mercy that I'm comparing everything to it. Like an ex boyfriend/girlfriend. EVERYONE does it...compares people...i'm just comparing hospitals. LOL.
I had a lot of doctors come in today to talk to me and ask me question after question. Finally, this morning, i called my old doctor and asked him a lot of questions and asked permission to give out his personal cell number. He okay'd everything and I guess that helped speed up the whole "process." Around 11 about 8 people came into my room. The main "boss" lady doctor, I think two residency doctors, two interns and maybe two med students or three? I don't really remember but I had a full house in my small room full of people who were just staring at me. My assumption is that they were observing the doctor tell me what was going to happen next and answer some of my questions. I tried to ask a lot of questions to scare the students and interns about bizarre things. They just looked intimidated. And it didn't help that I was sitting in my bed with no scarf on my head. I know that sounds weird but seeing a real life cancer patient with no hair can be intimidating and just.....real. I look at myself in the mirror and am intimidated by me because I "fit" an image I had in my head that I was afraid to become. Now I enjoy it. I like being bald. it's convenient. LOL. Of course, I'll be so happy when I start my hair growth again but since I can't change it or do anything about it, why not embrace it and make the best out of the best situation. Life REALLY is too short.
Speaking of which.....isn't it the strangest thing when you have a realization that people were placed in your life at just the right time. Not necessarily for negative reasons but also for positive reasons as well. Has anyone stopped and said to themselves..."Kim was placed in my life to show/teach me something about mine?" I think of that all the time with people I meet and what they say. Even if I met them for a whole two seconds and they said something nice to me on a day I was feeling down.....it was worth it and for the rest of my life I will remember that. I think that I'm being shown true colors of people through this. I have friends who are just coming out of nowhere who want to help. I have seen people who really do have good hearts and I have seen people who don't. At times like this, I'm thankful because I know who really cares about me and who I have found worth keeping around. NO i'm not saying, if you don't visit me i'm not gonna be your friend but it's the simple things that no one notices that just make me happy.
sorry, i got off on another weird tangent and started typing whatever and it probably didn't make sense. LOL.....
So as of now, I don't know what is going to happen. The doctor who I talked to mentioned starting chemo either tonight or tomorrow morning. Right now they have me on ongoing fluids that make me use the restroom every 30 minutes....and on top of that, i'm THIRSTY again...noooo!
alright well, I'm going to try to take a nap because we all know how little of sleep I got last night and probably how little sleep I'll get tonight. It feels weird sitting in a bed all day. especially after my run. Maybe I'll invent some sort of hospital bed workout. hmmmm.......
I love you all, thanks for putting up with my crazy posts & randomness...
xoxo
kim
I was talking to a friend about what had happened and how frustrated I was last night...
Me: "Everything has been so unorganized and I can't stand it. I like orderly things and plans. And you would think people can communicate a little better. I mean come on, were not doing Morse code or sending snail mail anymore..."
friend: "I'm sorry Kim. I bet you are going crazy because nothing is written down huh?"
Me: "EXACTLY! It makes me want to pull out all of my hair and run out the door screaming...."
.:awkward pause:.
friend: "ummmm...."
Me: "OMG, my hair is already gone!"
LOL...sometimes I am just ridiculous and don't even realize it....Anyways, today hasn't been TOO bad. I'm adjusting well to my new place and of course, trying to be nice to everybody. I had a really good tech today. She was fun. She laughed at me, cracked jokes, and was just overall a happy person. My nurses have also been great but I think I got spoiled at Mercy that I'm comparing everything to it. Like an ex boyfriend/girlfriend. EVERYONE does it...compares people...i'm just comparing hospitals. LOL.
I had a lot of doctors come in today to talk to me and ask me question after question. Finally, this morning, i called my old doctor and asked him a lot of questions and asked permission to give out his personal cell number. He okay'd everything and I guess that helped speed up the whole "process." Around 11 about 8 people came into my room. The main "boss" lady doctor, I think two residency doctors, two interns and maybe two med students or three? I don't really remember but I had a full house in my small room full of people who were just staring at me. My assumption is that they were observing the doctor tell me what was going to happen next and answer some of my questions. I tried to ask a lot of questions to scare the students and interns about bizarre things. They just looked intimidated. And it didn't help that I was sitting in my bed with no scarf on my head. I know that sounds weird but seeing a real life cancer patient with no hair can be intimidating and just.....real. I look at myself in the mirror and am intimidated by me because I "fit" an image I had in my head that I was afraid to become. Now I enjoy it. I like being bald. it's convenient. LOL. Of course, I'll be so happy when I start my hair growth again but since I can't change it or do anything about it, why not embrace it and make the best out of the best situation. Life REALLY is too short.
Speaking of which.....isn't it the strangest thing when you have a realization that people were placed in your life at just the right time. Not necessarily for negative reasons but also for positive reasons as well. Has anyone stopped and said to themselves..."Kim was placed in my life to show/teach me something about mine?" I think of that all the time with people I meet and what they say. Even if I met them for a whole two seconds and they said something nice to me on a day I was feeling down.....it was worth it and for the rest of my life I will remember that. I think that I'm being shown true colors of people through this. I have friends who are just coming out of nowhere who want to help. I have seen people who really do have good hearts and I have seen people who don't. At times like this, I'm thankful because I know who really cares about me and who I have found worth keeping around. NO i'm not saying, if you don't visit me i'm not gonna be your friend but it's the simple things that no one notices that just make me happy.
sorry, i got off on another weird tangent and started typing whatever and it probably didn't make sense. LOL.....
So as of now, I don't know what is going to happen. The doctor who I talked to mentioned starting chemo either tonight or tomorrow morning. Right now they have me on ongoing fluids that make me use the restroom every 30 minutes....and on top of that, i'm THIRSTY again...noooo!
alright well, I'm going to try to take a nap because we all know how little of sleep I got last night and probably how little sleep I'll get tonight. It feels weird sitting in a bed all day. especially after my run. Maybe I'll invent some sort of hospital bed workout. hmmmm.......
I love you all, thanks for putting up with my crazy posts & randomness...
xoxo
kim
Day 32: Laaaaammmeeee.....
Okay so one day I hope to look back at this day and say...oh what was I thinking.
Alright, well...I just settle into my new pad for the next hopefully ONLY 2 weeks. :)
ummm yeah....i'm thinking the same too.
this place stinks. LOL.
Well...when I first checked in it was just a weird vibe. The night "receptionist/nurse" was super busy for a bit so i patiently waited and after maybe a 5 minute standing wait, she finally came and i said, "Hi..I'm suppose to be admitted tonight as an inpatient to room 723" she quickly said okay, go knock on that window and tell her. So I got into the hospital with some delay and i asked for directions of how to find my room and the lady couldn't even tell me. She eventually said "well you'll run into security so just ask him the best way to go" and shoved me on my way. Luckily I have a pretty good sense of direction and I found my way to the oncology department and stood there to be helped. THREE...yes THREE nurses saw me and said NOTHING to me. I mean if you see a girl and her mom packed and ready to go somewhere looking LOST standing by the ONCOLOGY PATIENT CHECK IN counter you'd think that they would ask "Can I help you??"
and they didn't.
So i stood there thinking....okay the lady downstairs just called someone on the phone and CONFIRMED with that person that I will be up shortly. and when I mentioned that, no one...and i mean no one knew what I was talking about. I stood standing by the desk confused what was going on for a good 2 minutes or so and saw the night nurses SITTING in the back on a computer with their backs towards me. Angry at this point, i walked into their little office and said "ummm excuse me, i'm suppose to be checking in to room 723 tonight"....and they looked at me, then each other, then back at me and said....what?? SO i explained to them what was going on, mentioned someone from downstairs called them, and SHOWED them my paperwork...and still they all (three) had a BLANK stare on their face.
SO they showed me to my room anyway, took my paper and said "i will call the doctor and figure out what is going on"
My nurse for tonight showed me around my new place and seemed either nervous or just talked really fast. she said the word "anyway" about 50 times in a like 2 minute introduction she gave to me. it annoyed me. My room is small, very BLAND, and my shower is awkward. The light switch to my ENTIRE room is OUTSIDE of my door so no privacy will be had. I have one over head lamp and it's a fluorescent light so I'm just wondering how these early morning blood draws will work out....My mom has to sleep on a recliner and I don't like the "feel" of the place. The RN asked me if I wanted anything to drink. She offered sprite, water, and a few other options. My mom and I requested water and I said I wanted a 'sprite.' and what does she come back with??
THAT's right....CAFFEINE FREE SHASTA TWIST...which is NOTHING like sprite...which I was promised. :( and a mini pitcher of water and Styrofoam cups. grrreeaaatttt. I can't even get a cool water bottle thingy like they gave to me at Mercy. and what are these people thinking with these cups?? Lisa is going to go crazy because this is in NO WAY GREEN AT ALL. They really need to invest in some nice OU cups and wash them like they do at other hospitals. This must be a fake hospital. :( But anyways, as soon as I got a drink, I sprayed everything down with disinfectant and clorox'd wiped everything too....not that they wouldn't have done that anyway but i have become deadly with my antibacterial hand sanitizer, my disinfectant i carry in my purse, and my handy dandy "to go" clorox wipes. LOL. which is good right?
......floor nurse comes in.....shes talking to me......
here it comes....wait for it....now.
aaaaaaaaarrrrrgggggggggghhhhhhhhhhh.......................
a new RN came in and basically NO ONE knows what is going on here. they have no idea who i am. they don't know ANYTHING about me.....i'm so frustrated right now. my mom took a picture of me and here is my facial expression. and yes, i'm bald now. LOL. :)
okay i'm frustrated, angry, sad, and TIIIIRREEEDDDD. so I'm gonna get off of here before my battery dies and i can't save this (because that WOULD happen to me right now). A doctor is suppose to be coming in any minute to figure this ish out. UGH.
i still love you all. :)
good night.
kim
Alright, well...I just settle into my new pad for the next hopefully ONLY 2 weeks. :)
ummm yeah....i'm thinking the same too.
this place stinks. LOL.
Well...when I first checked in it was just a weird vibe. The night "receptionist/nurse" was super busy for a bit so i patiently waited and after maybe a 5 minute standing wait, she finally came and i said, "Hi..I'm suppose to be admitted tonight as an inpatient to room 723" she quickly said okay, go knock on that window and tell her. So I got into the hospital with some delay and i asked for directions of how to find my room and the lady couldn't even tell me. She eventually said "well you'll run into security so just ask him the best way to go" and shoved me on my way. Luckily I have a pretty good sense of direction and I found my way to the oncology department and stood there to be helped. THREE...yes THREE nurses saw me and said NOTHING to me. I mean if you see a girl and her mom packed and ready to go somewhere looking LOST standing by the ONCOLOGY PATIENT CHECK IN counter you'd think that they would ask "Can I help you??"
and they didn't.
So i stood there thinking....okay the lady downstairs just called someone on the phone and CONFIRMED with that person that I will be up shortly. and when I mentioned that, no one...and i mean no one knew what I was talking about. I stood standing by the desk confused what was going on for a good 2 minutes or so and saw the night nurses SITTING in the back on a computer with their backs towards me. Angry at this point, i walked into their little office and said "ummm excuse me, i'm suppose to be checking in to room 723 tonight"....and they looked at me, then each other, then back at me and said....what?? SO i explained to them what was going on, mentioned someone from downstairs called them, and SHOWED them my paperwork...and still they all (three) had a BLANK stare on their face.
SO they showed me to my room anyway, took my paper and said "i will call the doctor and figure out what is going on"
My nurse for tonight showed me around my new place and seemed either nervous or just talked really fast. she said the word "anyway" about 50 times in a like 2 minute introduction she gave to me. it annoyed me. My room is small, very BLAND, and my shower is awkward. The light switch to my ENTIRE room is OUTSIDE of my door so no privacy will be had. I have one over head lamp and it's a fluorescent light so I'm just wondering how these early morning blood draws will work out....My mom has to sleep on a recliner and I don't like the "feel" of the place. The RN asked me if I wanted anything to drink. She offered sprite, water, and a few other options. My mom and I requested water and I said I wanted a 'sprite.' and what does she come back with??
THAT's right....CAFFEINE FREE SHASTA TWIST...which is NOTHING like sprite...which I was promised. :( and a mini pitcher of water and Styrofoam cups. grrreeaaatttt. I can't even get a cool water bottle thingy like they gave to me at Mercy. and what are these people thinking with these cups?? Lisa is going to go crazy because this is in NO WAY GREEN AT ALL. They really need to invest in some nice OU cups and wash them like they do at other hospitals. This must be a fake hospital. :( But anyways, as soon as I got a drink, I sprayed everything down with disinfectant and clorox'd wiped everything too....not that they wouldn't have done that anyway but i have become deadly with my antibacterial hand sanitizer, my disinfectant i carry in my purse, and my handy dandy "to go" clorox wipes. LOL. which is good right?
......floor nurse comes in.....shes talking to me......
here it comes....wait for it....now.
aaaaaaaaarrrrrgggggggggghhhhhhhhhhh.......................
a new RN came in and basically NO ONE knows what is going on here. they have no idea who i am. they don't know ANYTHING about me.....i'm so frustrated right now. my mom took a picture of me and here is my facial expression. and yes, i'm bald now. LOL. :)
okay i'm frustrated, angry, sad, and TIIIIRREEEDDDD. so I'm gonna get off of here before my battery dies and i can't save this (because that WOULD happen to me right now). A doctor is suppose to be coming in any minute to figure this ish out. UGH.
i still love you all. :)
good night.
kim
Monday, May 2, 2011
Day 31: New month....New hospital.
a few quick things for today's morning blog....
#1- no, I am NOT sore from yesterday's run. :) I guess that means......well, idk what that means. I just know there are some fellow tafties out there who I'm sure are suffering. Just make sure to hydrate, hydrate, hydrate, and ice and stretch if you're stiff. This also sounds crazy but you also need to do some sort of physical activity today to work out the kinks.Mao....go for a run or walk. Those stiff muscles need love too. I promise it will make u feel a a lot better tomorrow. Rather than letting it stiffen out more. Any who, us taffies have decided to run the marathon relay?? Right?! It makes me excited for next time. :)
#2- I'm getting platelets as I type from mercy hospital. It's neat b/c just sit in a chair and wait as they pump into me. There is a nurse in here and one other guy. He was talking to me for a looking time but he was really nice. He asked how long I had my picc line in and i told him just over a month. Then he went on to explain to me at that he had his in for FOUR years now. And before that he had one in his other arm until he got a blood clot. And I thought to myself......holy moly!! Lol. He told me his entire story and it was ridiculous what he was going thru. It just made me thankful for what I'm going thru and it put me in "check mode" of what I'm going thru. I felt like a little mouse by a huge elephant. It was kind of inspiring. He gave me some advice and was just nice.
#3- I told my doctor this morning about running my 5k and if course, he wasn't as excited as I was about it but he was just thankful that I didn't get sick. I reassured him I was extra cautious but he said....well can't do anything about it now so good job! You're a first...again. Lol. And now, sitting here in mercy outpatient oncology, one of my old nurses saw me and said,...I read about you in the paper!! Lol. She told people at work and I was suppose to be readmitted today to mercy and they said they all wanted to give me a hard time about it but they were all so proud us of me.:)
#4- I will no longer be at Mercy hospital....or have my awesome doctor. They are passing me over to a Presbyterian hospital that has a special Leukemia doctor just for me. I got emotional when my doctor was telling me about it. But basically, I still have more leukemia than expected in my blood so rather than a general cancer doctor, they're giving me to a leukemia doctor. And I'll most likely be getting a bone marrow transplant if my bro or sis is an exact match and I'll be getting it there anyway, so why not?
#5- my head is cold. Lol
#6- go buy a daily Oklahoman and read about my mini story in today's paper!! yay!
Okay platelets are in me and I'll write more later.
Enjoy ur day!
Kim
#1- no, I am NOT sore from yesterday's run. :) I guess that means......well, idk what that means. I just know there are some fellow tafties out there who I'm sure are suffering. Just make sure to hydrate, hydrate, hydrate, and ice and stretch if you're stiff. This also sounds crazy but you also need to do some sort of physical activity today to work out the kinks.Mao....go for a run or walk. Those stiff muscles need love too. I promise it will make u feel a a lot better tomorrow. Rather than letting it stiffen out more. Any who, us taffies have decided to run the marathon relay?? Right?! It makes me excited for next time. :)
#2- I'm getting platelets as I type from mercy hospital. It's neat b/c just sit in a chair and wait as they pump into me. There is a nurse in here and one other guy. He was talking to me for a looking time but he was really nice. He asked how long I had my picc line in and i told him just over a month. Then he went on to explain to me at that he had his in for FOUR years now. And before that he had one in his other arm until he got a blood clot. And I thought to myself......holy moly!! Lol. He told me his entire story and it was ridiculous what he was going thru. It just made me thankful for what I'm going thru and it put me in "check mode" of what I'm going thru. I felt like a little mouse by a huge elephant. It was kind of inspiring. He gave me some advice and was just nice.
#3- I told my doctor this morning about running my 5k and if course, he wasn't as excited as I was about it but he was just thankful that I didn't get sick. I reassured him I was extra cautious but he said....well can't do anything about it now so good job! You're a first...again. Lol. And now, sitting here in mercy outpatient oncology, one of my old nurses saw me and said,...I read about you in the paper!! Lol. She told people at work and I was suppose to be readmitted today to mercy and they said they all wanted to give me a hard time about it but they were all so proud us of me.:)
#4- I will no longer be at Mercy hospital....or have my awesome doctor. They are passing me over to a Presbyterian hospital that has a special Leukemia doctor just for me. I got emotional when my doctor was telling me about it. But basically, I still have more leukemia than expected in my blood so rather than a general cancer doctor, they're giving me to a leukemia doctor. And I'll most likely be getting a bone marrow transplant if my bro or sis is an exact match and I'll be getting it there anyway, so why not?
#5- my head is cold. Lol
#6- go buy a daily Oklahoman and read about my mini story in today's paper!! yay!
Okay platelets are in me and I'll write more later.
Enjoy ur day!
Kim
Sunday, May 1, 2011
Day 30: Shampoo or Body Wash??
Tonight I said bye-bye to my hair. I'm glad I took my time with the decision rather than rushing it. I never knew I would ever be as emotional about something like hair. Maybe it's the idea of losing something because of something else? IDK. I haven't figured out why. Well I do know why but I don't know how to articulate it. I guess I just never saw myself going through this and I never felt like I had leukemia, I always felt great. But now, losing something like hair, a physical feature, makes it more real. It shows a physical change that people have learned to put two and two together and figure it out. bald head on a girl = cancer patient.
But I'm trying to look at the positives...for instance today while I was taking a shower I had a whole debate with myself. Shampoo or body wash?? It took me a whole 3 minutes to shower (which included this debate) and it was awesome! I was just confused what to put on my head. lol. It still has a little prickly hair on it but for the most part I'm as bald as a baby. I settled on just body wash and it was soooooo weird. I felt like I was cheating on my shampoo and conditioner. And it just felt awkward seeing body wash being squeezed into my hands...then putting it on top of my head. LOL. I know that sounds absolutely NUTS but that's only acceptable when your like drop dead tired and not wanting to shower in the first place. LOL. Everyone has done it...got confused in the shower and you know it. LOL. :) Anyways, my showers are way short now and it's great!! guys seriously have it way easy girls...
I had a great dinner with great friends as we had a last-night-before-the-hospital-stay party. It was everything I hoped for in a party (arts and crafts too!!) and I can't thank our wonderful hostess, lisa, for EVERYTHING and all the work she put into making me happy. She's an absolute saint and I honestly don't know how I would get through this chemo/leukemia stuff without her. and all my tafties of course. :)
Okay before I start crying....I need to get off of here. I'll start blogging more about my crazy hospital stays and the excitement and chatter I always seem to hear about. Tomorrow I get checked into the hospital again and it's going to be tough. I've throughly enjoyed my last 5 days out in the real world and I'm so proud that I didn't get sick! :)
I plan on breaking the news somehow to my doctor that I ran the 5k. I'm sure he'll be totally fine with it but you just never know. :)
I love you all....good night.
kim
Look at the pure joy expression on my face....priceless.
Being interviewed by a newspaper guy! I look goofy.
But I'm trying to look at the positives...for instance today while I was taking a shower I had a whole debate with myself. Shampoo or body wash?? It took me a whole 3 minutes to shower (which included this debate) and it was awesome! I was just confused what to put on my head. lol. It still has a little prickly hair on it but for the most part I'm as bald as a baby. I settled on just body wash and it was soooooo weird. I felt like I was cheating on my shampoo and conditioner. And it just felt awkward seeing body wash being squeezed into my hands...then putting it on top of my head. LOL. I know that sounds absolutely NUTS but that's only acceptable when your like drop dead tired and not wanting to shower in the first place. LOL. Everyone has done it...got confused in the shower and you know it. LOL. :) Anyways, my showers are way short now and it's great!! guys seriously have it way easy girls...
I had a great dinner with great friends as we had a last-night-before-the-hospital-stay party. It was everything I hoped for in a party (arts and crafts too!!) and I can't thank our wonderful hostess, lisa, for EVERYTHING and all the work she put into making me happy. She's an absolute saint and I honestly don't know how I would get through this chemo/leukemia stuff without her. and all my tafties of course. :)
Okay before I start crying....I need to get off of here. I'll start blogging more about my crazy hospital stays and the excitement and chatter I always seem to hear about. Tomorrow I get checked into the hospital again and it's going to be tough. I've throughly enjoyed my last 5 days out in the real world and I'm so proud that I didn't get sick! :)
I plan on breaking the news somehow to my doctor that I ran the 5k. I'm sure he'll be totally fine with it but you just never know. :)
I love you all....good night.
kim
Look at the pure joy expression on my face....priceless.
Being interviewed by a newspaper guy! I look goofy.
Day 30: YAY....BEGAY RAN A 5K! :)
I finished my 5k!! I actually did a pretty good time considering the fact that I have done nothing for a month (keep that in mind)....my time was 40:52. So that was about a 12:30 mile...for me that's SLLLOOOWWWW but I'm happy and proud of myself. The first mile was good. I focused only on keeping a slow steady pace as I passed by the Ford Center (where OKC thunder play), the Cox center, Harkins movie theatres, and up and around through Bricktown. It was great being surround by such a great support system also throughout the entire race. I had the best co-workers/boss anyone could ask for who stayed with me the ENTIRE time to make sure I was okay...and I had some of the best students ever push me through by giving me a friendly smile or a "there's Miss Begay!" or a "GO MISS BEGAY!" shout when I passed them or when they passed me. It just felt great. I took another long "snapshot" in my brain and filed it away....actually, i took a lot. :)
The second mile was probably the hardest. It started with the huge bricktown hill that I walked. At this point the adrenaline had worn off and I was "kicking" myself for running the 5k (i knew it would happen). I mean, why couldn't I have just been a fan and showed up at the finish line? geez. anyways, i looked at my watch 11 minutes in and we were all still doing pretty good. I had to stop and tie my shoes but it was so hard because my poor little hands were little ice cubes. And on top of all that, my hands LOOKED rough. My fingernails are naturally half purple now so with them red and cold it just looked pathetic. But i tucked them away in my sleeves and kept on going.
I almost fell once, it was kinda a slip but no one from Taft saw me. I didn't make a big deal out of it but just know it would've been BAD if i did fall and start to bleed. At the halfway point they had the first and only waterstop for the 5k and i thought to myself....OMG WERE ONLY HALFWAY. lol. Now i gotta turn around and run back. I didn't stop for water because i knew my stomach would hurt and there is no telling how clean those people's hands were who were holding the cups.....yuck. I had my mask on 90% of the time and MAN OH MAN was i hot. But I'm so glad I had it because otherwise my throat would've been hurting afterwards like it usually does. But it's NOT. :)
the last mile consisted of small up and down hills and as much as I hated walking, I had to walk up the majority of the hills. But i tried to "speed" walk when i did walk to make up for my time lost. I ran the down hill slopes and then.....the finish line was in sight. I then thought...wow, that's it?? lol. as with all 5k's it seemed a lot longer at the time than when I finished.
The feeling that I got when I saw the finish line cannot be described. I felt like a million dollars. Everything was perfect and what I had wanted it to be....except I wish my entire family was there to watch me finish or finish with me or beat me to the finish line....but it was still a great sensation and feeling of I can overcome. It was wonderful and worth every second of everyday I have been in the hospital fighting for life. it's great and I'm so glad I did it. :)
Anyways, after I finished I stood around as long as I could and tried to stay as warm as I could (having no hair makes a BIG difference) but I remembered that I was "sick" and couldn't get any sicker so my mom and I packed up and walked FOREVER to get to the car. I thought I wouldn't make it to the car (it was REALLY FAR AWAY and REALLY REALLY COLD and WINDY) but again, i did.
We then stopped at my place and my mom ran up the stairs to get me dry sweats and a jacket and we were off to the hospital. I got a regular cbc blood draw and my vitals were taken. my temp was a wee bit low but I then confessed to the nurses what i had just did and they were like...oooohhhh, that makes sense. They took my temp again after thawing a little more out, and it was normal. My doctor hasn't called me yet so I'm assuming that everything was good or at least the same from yesterday. which is GOOD NEWS. :)
So as we were driving to and from Mercy Hospital we saw the marathon runners and my heart went out to them because they were about halfway finished and I was FREEZING in my CAR....lol. But one day next year I'll try again to run a full marathon....I better start training. LOL. :)
As soon as I got home I requested my mom to make greasy potatoes for breakfast (and she did because she's awesome) and I laid on a heating pad until I warmed up. I eventually fell asleep and now I'm here. I have a dinner tonight at my boss's house that she is hosting to celebrate all of us completing the race and me going back to the hospital tomorrow....boo!
it should be nice to be around good company again...but this time in the warmth of a house and not outside in the miserable rain and cold.
thanks to those who sent me a "good luck" today and those who have supported my crazy (i know it was) decision to even run in the race. I couldn't have done it without everyone behind me shoving, dragging, and pulling me along. THANK YOU FOR ALL THE SUPPORT. I LOVE YOU ALL....
more to come later....
xoxo
kim
part of my support group of teachers....at 5am, we look pretty good.
officially pinning on my race bib!
Annnnnd we're off!
A sign at the finish line with your name on it is the best feeling ever!! :)
Part of our "TEAM TAFT" group.....we were waiting on others to finish or find us. :)
another picture of the group....
The view of the finish line
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