Coming up for air

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.

PET Scan results

OK, So I got my results last week...Thursday to be exact. I have been in computer hibernation since then. Just not ready to share with the whole world yet. Don't ask me why, because I don't know. Just trying to absorb  it all in without feeling like anyone is feeling sorry for me maybe? Oh shit seems to be the general reaction. Mine too. I guess i don't want anybody else to have to think "Oh shit" too?

So here goes. I got settled into my chemo chair to draw labs. I told my nurse I was a little nervous as I was getting PET scan results today. She asked me if I wanted to stay in the chair, or go back to his office to hear. I mumbled something that the chair was fine, he didn't have time for my questions anyways. OK, so I'm a butt hurt ass from last week still. The chair is fine, I guess I didn't really want to be alone in the room with him, as I didn't have anyone with me to hear the results. I guess being in the chemo ward didn't feel so alone to hear what he had to say. Maybe someone else would hear and interpret for me if I needed it.

My Onc came over pretty quick it seemed today. Maybe he was caught up and not so rushed. Maybe he just wanted to get it over with. Maybe he just wanted to let me know, so I could get on with my day outside of the cancer center. In all reality, it was probably just my turn. However, he was much kinder then last time. So he tells me he has positive-negative news. I was hoping for better, but this is about what I thought he would have to say.

Let me start off by explaining that this was a PET scan. So cancer shows as a "hot spot" When the scan gets read, I THINK that it only reads somethings...like the "hot spot" Which is great, this needs to be seen. However, I believe that it doesn't really show a lot in terms of size very accurately. That is what an MRI is for. An MRI takes pictures in slices, and will give an accurate measurement of tumor size. Readers, please help me out here- am I still following along and understanding right?

So the positive first. The positive is that the bad lymph node under my right arm pit is doing good. Good I take to mean as either still showing signs of shrinking, or it is gone away. I'm confused on this, as I can still feel it. Which ever is the case, that was the positive news. The mass on my left chest, and the lymph node under my left collar bone- my Onc considers that one in the same. He says that that is no longer showing signs of shrinkage. He did not say growing again though. This is the part where I was really hoping he would say looked great. Because it feels back to the original size when I first felt it after surgery. Back to the un-understood question...how did THAT get from scar tissue to tumor???? OK, fine...what's next? Next is the bad lymph nodes buried under my sternum. If I understood everything, those are showing signs of growth again. Then on to the worst of the negative. Doc says he now can see a very small spot on my lung. He says it is very small, and he really didn't seem too excited about it. I will explain my interpretation of this in a moment. Wow, soaking it in still. This is the part that I wasn't really prepared for. I always knew that there was a chance it spread more. That's the stuff that I can't worry about much, unless given a reason. In my mind, if I can feel it...then there is an understandable reason to worry a little bit. I try not to get too excited about the unknown things, or I will worry myself into an early grave.

So my mom refreshed my memory about my grandma dying from lung cancer the year that I graduated. This is what I need to hold near and dear to me right now. A couple of years before Grandma died, she went in for a hip surgery. Mom says that the docs did a scan of some sort at this point in time, related to her surgery. There was a small spot on her lung at this time. However, docs were so concerned about her hip, that the ball got dropped on the spot on her lungs. fast forward a year or so, and Grandma is getting sick, and is diagnosed with lung cancer. The doctor went back and looked at that old scan. Doc said that if they had caught that small spot then, that they could have gotten rid of it. Sadly, by the time this was figured out- her lung cancer was too far advanced. So this is the thought that I have to hold onto. My spot on my lung is as small as Grandma's was originally. We will keep plugging away at chemo, and this little spot will go away!

So there it is, no more waiting or guessing. Now we know. I mostly right on what I thought the outcome would be. I wish I was more wrong, but not to be this time. I felt like a bad girl when I went home...I got kicked out of chemo for the day. I didn't really feel like a bad girl, it was just much more fun to say I got kicked out of chemo. Kicked out of chemo, as it is time to clean out my system again, so I can go try a different kind of chemo. Goodbye to Cisplatin and Gemzar, as we just burnt out another drug. 4th chemo regiment down the drain, which equals out to I've tried 7 different kinds of chemo so far in a year and 10 months. I have to quit looking at it in those terms, as that sounds freaky. Yet, I'm afraid to lose count or I won't remember. I don't want to forget how to spell CAT!