Tuesday, January 3, 2012

Did my Onc really just say that????

This is all I got today. First- How do  fix my blog? I don't have the patience to delete this one, and try and find another blog site and transfer it all over. My blog doesn't seem to work right anymore, because I am not using Google Chrome? Really? I disabled my IE, and downloaded Google Chrome, and I  HATE it. Google Chrome is fast...but very boring. In all reality- it is slow because I spend all day trying to find what I am looking for, or figure out how to make it do something. I can't even insert a curser in my blog post...I have to backspace to delete an error, ughhh! Can any of my millions of readers suggest a solution to the new blogger/blogspot changes? Please, I want to keep my blog, but just don't have it in me to redo the whole thing.
Plus, you see- I just don't have time! K, I'll spit out what he said, but then I'm done for the night. I need to not focus on it for the night. I had a witness today- I am hearing him right. I asked him how long again, only from the aspect of I have got to get my crud together, and suddenly I have been feeling like it's less then a year. Well, I guess it has been several months by now since he told me a year. He is still very hopeful of course with the Feamara, but realistically- I think he is about as optimistic as I am. He says it is time to get close to my support system. He doesn't think directing all my energies into purchasing a trailer is not necessarily the best use of my time. There is a study in Seattle that might do some good, but I don't believe he thinks that it is worth the efforts for me to focus on getting there. If I lived there, and my main support system was there, and it was convenient for me to participate- he might look at it differently. However when he looks at the whole big picture of the situation, he doesn't think it's worth the effort.

Crap, I just don't even care that much anymore that the end may be near. I just don't want to be without my dog, and I want it to be peaceful and happy. My needs, and some of my wants met. I hate it that I don't know how to get there. How can nobody else know the answer? I just don't understand. All I know is I'm not giving up my Hope until it's time. I think  it is time to be in WA. If there is any hope, maybe it is with a dr in WA. That, and I have decided that I want my baby sister to take care of me. I no longer have a husband that appears capable of getting it together to get me through this, and my parents aren't interested in welcoming my dog. Baby sister, I am so sorry to have to put this load on you, but I know that you are capable and willing. Who would of thought that we had to get you through nursing school in time to take care of your big sis?

UGHHHH- what you see is what you get. I can't even scroll up to proof read!

Thursday, December 15, 2011

A winter day walk

I had to go in for labs today, to check my Coumadine levels. Nothing too exciting there, now  I am a bit too thin, so another new pill routine. I sat in the office with him today for some reason. I double checked to make sure I understood the pain pill routine, which I did. Except now I have the mixing pill thing down. I can mix any of my pills, just might want to be prepared to take a nap is all. No damage to my liver or organs for mixing them, whew. He got out his calipers, and the mass is the same. This is good, only for me. For me, no change is better then growth. He also measured one of my lymph nodes on my neck for the first time. He thinks that he better watch that. We talked about taking another dose of my current CMF, for the sake of it is holding steady at the moment. I'm not convinced he has any other option.

Did I really just have to say that? That sucks, but I did. We talked about it again. He hasn't really seen any other cases like mine where it is so resilient as mine, was my understanding when I asked. He is pretty much out of ideas I think. There might be some old ball study that he can't get me on for some reason. How can this be? I mostly feel pretty damn healthy, so how can this be? And I don't even know what to do about it, just like my Onc. What the hell do I do, somebody please tell me!

On a lighter note, Hope was in the truck waiting for me as usual. I decided that we should go for a walk by the river and come back through downtown. Look at my sweet girl, I am so blessed with her love every day! Here she is patiently waiting for mom to medicate before we go for our walk.

And now we have made it out of the car. It's snowing out a little bit, but not too terribly cold. I had my huge hooded leather jacket on, and treat bag at my waist. We aren't walking on a prong collar today either. I put my support band on Hope's leash for Clint Miller. He passed on a couple days ago after a furious battle with testicular cancer.

                            Off we went. We walked down by the river just west of Caras Park.

This looks like a pretty nice resting spot by the river on the fence line. So there I left Clint's band. I hope not to see you too soon, but save me a place at your table please!

So that was my day. I loved my walk with Hope, it was a good day. I feel good, and I got some things accomplished. Goodnight all!

Tuesday, December 13, 2011

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.