Whew, Hi all! Boy am I glad to see you! I got a little lost there for a few weeks- some by choice, and some not. I did have to take a time out and rethink a few things in private. My head got a little screwy there for a few.
Last I wrote, I had my first dose of CMF in me. Not bad at all really. Tiny bit of mouth sores, and my blood counts don't look too shabby. The worst of it has been my appetite. Food hasn't been on the top of my priority list, and food money has gotten super tight, which really doesn't help the cause. Figures, as the only thing that has really sounded good for the last 2 months is Taco Bell hard shell tacos. Why? I hate Taco Bell- that's not real Mexican food! Check this though- I still have all my hair. The "C" part of the treatment should make it fall out. I think I am a month in, with 2 treatments under my belt...and no sign of hair falling out. I put on makeup last week, and was quite shocked to find such a lush set of lashes to put mascara on. It was a pleasant surprise.
I don't remember much of the beginning of the month. I had a pretty rough week that the highlight was hallucinating before I finally started getting better. I woke up 2 Mondays ago with what felt like a ginormous side ache. The Lortabs, nor the 2mg Dilaudids made it go away. Oh yes, and at this point in time- I did NOT know that one should not take Dilaudid and Lortabs together :) I haven't had a lot of pain medication instruction, as I just haven't needed much up till about now.
I made a doctor's appointment after about 4 hours of this pain. Doc had the nurses run labs and he came in to tell me that he was a little concerned that this was symptoms of a really low blood count. Which he thought might need to result in an over night hospital stay. Which made me kick and scream because I felt fine of course, other then the pain. Lucky for me, I was right again. My counts were not low. So my Onc now says the next thing is a CT, because the next guess is a blood clot. He gave me a blood thinning shot before I went over for the CT, as this is how sure he was. This is what the CT showed, a chemo induced blood clot on my left lung. Lovely. So he sent me home with Coumadine, and some shots. He asked me how my pain meds were, and I didn't know any better, so I told them they were fine. I guess I was just thinking I had enough to last until I saw him next. I was already loopy and somehow it just never came up what I was taking.
So home I went. I had 1 functioning brain cell left that told me I should start writing down when and what I am taking for pain. Haha, I absolutely can't make heads or tails out of my notes now. I'm pretty sure that first Monday I took 2 Lortabs at 8:30, and still in pain an hour later. So I took 2 Dilaudids at 9:30. For some reason I had it stuck in my head that Dilaudid starts acting in about 10 minutes. Why? I don't know, except I'm guessing I was not told this. By 10 pm, I am still in a lot of pain. I had already called the on-call Onc. What I understood her say was either deal with what I have for pain meds, or I can go to the ER to go on an IV. I'm not sure what this was based on, unless it was based on how strong Dilaudids are. Anyway, by 10pm I asked my roomie to run me into the hospital. I did not want to be admitted, but the pain was that bad. I basically ended up spending almost 2 hours in there explaining what had transpired during the day. They didn't seem to know what to do either, other then they seemed to think that maybe I have built up a tolerance to pain meds. I left with a little bit better instruction. First, don't take both the pills together. Then, make sure I am taking it often enough. OK then. All I know is I am feeling stupid about now.
So home we went. I decided that the next best solution was propping myself up in bed with a big tv pillow. This works like a hospital bed, and took the pressure off of my side. Next thing is to set my alarm for every 3 hours. So I spent the next 4 days in bed, taking 4mg of Dilaudid every 3 hours. I still had to call my Onc again on Tuesday, because the pain was still so bad. The gist I got was that it is going to hurt until the clot dissolves pretty much. I knew at this point that sleeping my way through this was probably the best solution. So I did the best I could to do this. I was really whacked out by Friday. I think the nurse had to warn my not regular Onc that I was pretty loopy when he came in to check my labs. Somewhere along the way I drove myself to run errands, and got pulled over. I think he didn't want to deal with me, and he sent me home without a ticket. Somewhere along the way, either before or after this- I started hallucinating at home. It was bad. The thinner medicine must have worked though, as I started feeling better, and taking less pain meds over the weekend. Thankfully! That was a pretty scary mess, that I just didn't really realize. I do have a high pain threshold maybe, and this has made me realise that I need to be aware of this.
By the time I rolled back in to see him the next Monday, I was MUCH better. And feeling much relieved to have a functioning brain left. We talked briefly about the pain meds. I don't know exactly what he asked me, but from my answer- he decided that it was probably time for some slow release pain meds that I take on schedule every day. I haven't liked this idea out the gate, and I have been afraid of this day coming. To me, it is just not a good sign of things to come. Plus, if I can ever beat this devil, I don't want to walk away with a pain pill addiction.
I agreed to go on some. I am a little bit bitchy about it, but I will get over it. It's just giving me a little bit of a mental beating, but it is growing on me. He put me on a slow release 30mg of morphine. I don't know much about pain pills, but I'm thinking that this is heavy duty pain killers. The part that is really freaking me out is this. To me it seems like when you take pain meds that you don't need, that it makes you high and loopy. My experience with taking them when you need them, well it seems like you feel pretty normal when you need them. This is what is bothering me...I feel pretty clearheaded and coherent, and I know I sound like this too. I feel like I didn't know that I needed them. I still have some pain in my shoulder, (which is the reason for the Dilaudid), but 1 Lortab then seems to fix the problem. I will get over it and used to it I guess.
Something tells me that I think it might be covering up some of the pain in my neck. Pain that is newer due to the growth of all my lymph nodes. Onc says that he doesn't think my mass has shrunk last Monday, but nor has it grown. It might not be growing much, but I just don't think I can say the same about my lymph nodes. Every time I feel them up, they just seem like there is more, and or bigger. I gave him the 2 treatments like I said would. We'll see what it looks like in a couple more weeks before we make another decision.
So there you all are, all updated. I so wish I had some better news for you, other then my chin is still up and I feel soooooo much better then last week. I will leave you with a picture of my new bangles from a friend. They are Cookie Lee, and I just love them! I have never seen any like these.
Last I wrote, I had my first dose of CMF in me. Not bad at all really. Tiny bit of mouth sores, and my blood counts don't look too shabby. The worst of it has been my appetite. Food hasn't been on the top of my priority list, and food money has gotten super tight, which really doesn't help the cause. Figures, as the only thing that has really sounded good for the last 2 months is Taco Bell hard shell tacos. Why? I hate Taco Bell- that's not real Mexican food! Check this though- I still have all my hair. The "C" part of the treatment should make it fall out. I think I am a month in, with 2 treatments under my belt...and no sign of hair falling out. I put on makeup last week, and was quite shocked to find such a lush set of lashes to put mascara on. It was a pleasant surprise.
I don't remember much of the beginning of the month. I had a pretty rough week that the highlight was hallucinating before I finally started getting better. I woke up 2 Mondays ago with what felt like a ginormous side ache. The Lortabs, nor the 2mg Dilaudids made it go away. Oh yes, and at this point in time- I did NOT know that one should not take Dilaudid and Lortabs together :) I haven't had a lot of pain medication instruction, as I just haven't needed much up till about now.
I made a doctor's appointment after about 4 hours of this pain. Doc had the nurses run labs and he came in to tell me that he was a little concerned that this was symptoms of a really low blood count. Which he thought might need to result in an over night hospital stay. Which made me kick and scream because I felt fine of course, other then the pain. Lucky for me, I was right again. My counts were not low. So my Onc now says the next thing is a CT, because the next guess is a blood clot. He gave me a blood thinning shot before I went over for the CT, as this is how sure he was. This is what the CT showed, a chemo induced blood clot on my left lung. Lovely. So he sent me home with Coumadine, and some shots. He asked me how my pain meds were, and I didn't know any better, so I told them they were fine. I guess I was just thinking I had enough to last until I saw him next. I was already loopy and somehow it just never came up what I was taking.
So home I went. I had 1 functioning brain cell left that told me I should start writing down when and what I am taking for pain. Haha, I absolutely can't make heads or tails out of my notes now. I'm pretty sure that first Monday I took 2 Lortabs at 8:30, and still in pain an hour later. So I took 2 Dilaudids at 9:30. For some reason I had it stuck in my head that Dilaudid starts acting in about 10 minutes. Why? I don't know, except I'm guessing I was not told this. By 10 pm, I am still in a lot of pain. I had already called the on-call Onc. What I understood her say was either deal with what I have for pain meds, or I can go to the ER to go on an IV. I'm not sure what this was based on, unless it was based on how strong Dilaudids are. Anyway, by 10pm I asked my roomie to run me into the hospital. I did not want to be admitted, but the pain was that bad. I basically ended up spending almost 2 hours in there explaining what had transpired during the day. They didn't seem to know what to do either, other then they seemed to think that maybe I have built up a tolerance to pain meds. I left with a little bit better instruction. First, don't take both the pills together. Then, make sure I am taking it often enough. OK then. All I know is I am feeling stupid about now.
So home we went. I decided that the next best solution was propping myself up in bed with a big tv pillow. This works like a hospital bed, and took the pressure off of my side. Next thing is to set my alarm for every 3 hours. So I spent the next 4 days in bed, taking 4mg of Dilaudid every 3 hours. I still had to call my Onc again on Tuesday, because the pain was still so bad. The gist I got was that it is going to hurt until the clot dissolves pretty much. I knew at this point that sleeping my way through this was probably the best solution. So I did the best I could to do this. I was really whacked out by Friday. I think the nurse had to warn my not regular Onc that I was pretty loopy when he came in to check my labs. Somewhere along the way I drove myself to run errands, and got pulled over. I think he didn't want to deal with me, and he sent me home without a ticket. Somewhere along the way, either before or after this- I started hallucinating at home. It was bad. The thinner medicine must have worked though, as I started feeling better, and taking less pain meds over the weekend. Thankfully! That was a pretty scary mess, that I just didn't really realize. I do have a high pain threshold maybe, and this has made me realise that I need to be aware of this.
By the time I rolled back in to see him the next Monday, I was MUCH better. And feeling much relieved to have a functioning brain left. We talked briefly about the pain meds. I don't know exactly what he asked me, but from my answer- he decided that it was probably time for some slow release pain meds that I take on schedule every day. I haven't liked this idea out the gate, and I have been afraid of this day coming. To me, it is just not a good sign of things to come. Plus, if I can ever beat this devil, I don't want to walk away with a pain pill addiction.
I agreed to go on some. I am a little bit bitchy about it, but I will get over it. It's just giving me a little bit of a mental beating, but it is growing on me. He put me on a slow release 30mg of morphine. I don't know much about pain pills, but I'm thinking that this is heavy duty pain killers. The part that is really freaking me out is this. To me it seems like when you take pain meds that you don't need, that it makes you high and loopy. My experience with taking them when you need them, well it seems like you feel pretty normal when you need them. This is what is bothering me...I feel pretty clearheaded and coherent, and I know I sound like this too. I feel like I didn't know that I needed them. I still have some pain in my shoulder, (which is the reason for the Dilaudid), but 1 Lortab then seems to fix the problem. I will get over it and used to it I guess.
Something tells me that I think it might be covering up some of the pain in my neck. Pain that is newer due to the growth of all my lymph nodes. Onc says that he doesn't think my mass has shrunk last Monday, but nor has it grown. It might not be growing much, but I just don't think I can say the same about my lymph nodes. Every time I feel them up, they just seem like there is more, and or bigger. I gave him the 2 treatments like I said would. We'll see what it looks like in a couple more weeks before we make another decision.
So there you all are, all updated. I so wish I had some better news for you, other then my chin is still up and I feel soooooo much better then last week. I will leave you with a picture of my new bangles from a friend. They are Cookie Lee, and I just love them! I have never seen any like these.
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