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.

Check in with doc

Went in for some afternoon labs today. We got an afternoon appointment, because it was just labs and a quick check in with my onc- since I'm not on chemo at the moment. I was quite happy to notice a little pep in my step as I was sitting down in a chair. A chair on the edge of the first bay, like I was ready to do a mad dash out of there. Which I was- for a moment. I don't know if it was because I wasn't getting chemo, or it wasn't 10am, or most likely- the chemo is finding it's way out of me again. Whatever, it was better and I carried on for awhile with the lady I plopped down next to.

She was on her fifth round, so she is pretty new still. Nice lady, easy to talk to and full of spunk. Plus, Nurse J headed over to take care of me today- you can't be sad around her! We were all caring on about how good we felt, and how we just wished it could be the same for everyone else. About that time, I realised the elder woman across the way was not doing so hot. First I feel like crap because I have been just carrying on and maybe not being so considerate of someone else, and then just helpless because I just couldn't see how to make her feel better.

The moment passed and she was shuffling around a bit in her chair, so I asked her if her ears were cold and she needed a hat. Poor thing already had on a jacket and 2 blankets. She was good without a hat, but she did allow me to come put her recliner back in an upright position for her. She was feeling much better now, and so I moved to a closer chair so I could hear her better. We talked for awhile while she finished up and I waited for my doc. She started shuffling again, and I went over and she let me get her shoes and slip them on her feet. She even let me take a couple of her juice cups and get them out of the way. Lots of times people don't need help, and it made my day that there was something I could do for her, even if it was so little. I believe she said that she had pancreatic cancer, and they had just buried her husband the week before. So strong, and so spirited. It made me tear for a moment, as I realised that this dreaded disease will probably take this lady out. There was no mention of it, just a little bit of her story. I had already seen her daughter come in and check on her, and leave again. I believe that her daughter has got her hands as about full as they get, from what her mom had shared with me. I got comfy in my chair for awhile longer, as I knew that I  wasn't leaving the chemo ward until I got in the elevator with this woman and her daughter.

That is exactly what happened. We chatted, and next thing we knew- her bag was empty. Her daughter couldn't have timed it any better by the time she arrived. My doc had already came and talked to me by this time, so off we went. I walked out and made sure that they got all settled in their van, before I made my way to my truck. It has been awhile since I have left chemo feeling so fulfilled. I love to visit in chemo, but most times I am chomping at the bit to get out of there after several hours. However on days when I am just in and out of the center- I do take my time and chat my way back out. It has been awhile since I sat with somebody, just to keep them company while waiting for their rides. I could tell that this lady really appreciated it, and so did her daughter. It made for a really nice afternoon.

Oh, you want to know what the doc said do you? Alright, I'll tell! Labs all looked good, and he gave me a report from last weeks labs, as we did run some different things. Vit D level looks good, and not to quit my D supplements. He ran test and I am definitely post menopausal (chemo induced). We knew this already, but now there is no second guessing. He did talk to the doctor in Billings, and between the 2 of them- they just really don't see the need for a second biopsy. He did agree with her that yes indeed, the
CMF regiment would be good to try. I'm not sure why we haven't done this one already- other then I think it might be a pretty old school drug that still has good success rates. I get the idea that normally a CMF treatment is done much earlier in the game then this. My Onc says it's not that hard of a chemo. I am game, as once again this regiment has it's own battle program that sounds different then the others. My Onc is still waiting for her notes to get sent over, so I'm not sure if I am expecting any more new ideas from the Billings Onc. However, I think Doc and I had another feel good visit today, so yay! Oh and, when I asked what would be reasonable to expect from the current hormone therapy- what I got was this. We can hope for shrinkage, but I don't think we should hold our breath. What we can hope for is no more growth, for it to at least hold steady for awhile while I take a break from chemo.

Oh and, the funny guy- said my tumor markers look, "normal" as his parting shot. I think he was happy that I laughed, and said I understood. Understood meant- he knew I was going to look at him asking what is "normal". Yes, I did refrain on purpose, as he was almost free of me. However, I might have a slightly better understanding of normal then he might think I do. Nah, probably not. My understanding is that tumor markers are based on individual levels of something in out blood. Meaning each person's markers are unique to their own system. Since that was the first reading, there will be nothing to compare it to, until today's labs were drawn. I know that wasn't everything that his look entailed, but I think I finally have an understanding of this much.

OK, enough for now. I'm happy to have gotten you all a timely update for once! Take care, and keep on keepin' on folks!