Frustration

   I haven't posted in the last few weeks as I have felt nothing but complete frustration! After the last post I had the fluid drained from my lungs and had a few days of relief but this didn't last very long and was back to coughing and having a hard time breathing again soon after. The procedure was alot easier then it was explained to me so for that part I was very happy. I also now am having a lot of issues with my stomach, it has become very hard for me to eat without feeling nausea or stomach cramping and honestly most of the time just easier not to eat. I know something different is going on but when I called my Dr last week for help and some answers he was on vacation. Now I totally get that everyone has every right to vacation and some serious family time but really why can I not talk to someone about how I am feeling, what's going on right now with my body, what were the results from the fluid and finally what happened with insurance and WHAT ARE WE DOING? I do so much better when I know what the game plan is even if we are waiting for a week at least I know what to expect and what I need to plan my life around.
   So first thing bright and early Monday morning I was calling my Dr. He is back from vacation and things have gotten so much worse. I just feel so crappy now a days and I have been on nothing for the last 3 weeks, this just doesn't work for me!! Do I have a plan now? Somewhat.... We will be putting a Catheter into my lungs to keep the fluid from building up until we can get all the chemo drugs approved through insurance. It may take a little bit also for my body to respond so I could end up having this in for a few months.....UGHHH! Now to just have the appointment to put this in, they should be calling sometime today. With the other stuff going on right now my Dr has prescribed an anti nausea medication if this doesn't work for me today then I will be going in to see my Dr tomorrow so that some testing can be done and we can figure out what is going on. So after a week long of feeling like nothing was happening and not knowing what to do to make myself better. I am feeling a little more comfortable with things again and am just looking forward to moving ahead.

Most of the results are in....

 I know that everyone would like to hear what happened today at the Dr's and I so appreciate that everyone just letting me have some time to processes what I was told today. I went into this appointment very open minded and was ready to hear just what my Dr had to say. My thinking was if I just figured the worst and then my Dr said something good then that had to be better then the worst, right? It just seems to me that the darn Dr's just like throwing a wrench in that thought process sometimes. Well, I already knew from my Friday's appointment that the cancer had grown and she had also said that I had fluid on my lungs. What I didn't know was that this fluid is about 1/2 gallon of fluid and that this needed to be drained pretty quickly. OK, I can do this right? So my next question to him his "What is the procedure for this?" Let me just give you the name  and the description of this procedure

Thoracentesis: is an invasive procedure to remove fluid from the pleural space for diagnostic or therapeutic purposes. A cannula, or hollow needle, is carefully introduced into the thorax, generally after administration of local anesthesia.

So what he is telling me is we will be sticking a needle in my chest and I will be awake for this..... Holy Cow!!!! Are you kidding me right now? That sounds like a whole lot of fun!! Let me just be the first in line to sign up for this one!! Just thinking about doing this procedure right now makes me sick to my stomach but I do have the appointment schedule for tomorrow afternoon and this should relieve my coughing and tight chest pretty quickly (that's the good news) My Dr is concerned though that the build up of fluid is that the cancer may have now gone into the lining of my lungs. He will be ordering tests of the fluid and I will get result back by the end of the week. So you may be asking what next after this procedure? My Dr would like to use a newer chemo drug that was approved by the FDA about a month ago. This drug would have less side effect then the normal chemo drug and I could live a somewhat normal life on it but it needs to be approved by my insurance company first. I have dealt with this once already when my Dr wanted to use one drug that would be easier on me and the insurance said NO so I am not holding out on a whole lot of hope for this drug right now. I am expecting for them to say NO use the normal chemo drug and then once again I am back to feeling just sick and awful. If it turns out otherwise I will sure be one happy girl!! I guess you just take things one day at a time and try not to get worked up every time you get a little bad news. Right now I just want to get tomorrow over with and the procedure done and back home to my beautiful children!!

Awww.... to keep a girl waiting

     So today was my final radiation appointment. I was supposed to go first to radiation and then right downtown to my Dr's for a final check but I got a call early this morning that said they were having issue with the radiation machine so I needed to go downtown first and then to radiation. I was completely OK with any of this as long as I was getting all of this behind me and then moving forward. I get downtown and all checked in then my Dr comes in. The first thing she says is "We got the result back from your lung scan". I had done a lung scan on Tue and was set to receive this information from my Oncologist on Mon so when she said this it kind of threw me for a moment. I hadn't prepared myself for any of this information although in my heart and my mind I already knew what she was going to tell me. My cough has gotten progressively worse over the last week and breathing sometimes is very labored so when she said that the tumors in my lungs are half a size bigger and there are new tumors now I wasn't shocked. I just sat there listening to her read the report. My mind wondering what the HECK am I going to do next. She talked about a new drug waiting for FDA approval that is supposed to be amazing for my HER 2+ cancer but you never know how long this will take to get approved. So I feel like I came out of this appointment a little numb and still not knowing what next. For me I get to go through the weekend again not knowing what the next move will be. I am ALWAYS up for the fight.... It's just the waiting to find out what that fight needs to be that is so hard. How do you try and plan life when you don't know just how sick you might end up being? To make this day perfect though here is the sweetest message that I got from a dear friend and her daughter this evening

Maryn asked me today "Mom...the next time you see Ms. Connie, can you give her this?" I asked why and she said "I don't want her to be sick anymore. We can pay her doctor to fix her"

I LOVE this sweet girl and how she makes me smile!!!

My FINAL day of Radiation...

  I have to say that the last 3 weeks have actually gone by very fast. It is just so weird to me though that other then the massive headaches and trying to figure out how little of the steroids I should take to still feel normal I have felt pretty good up until this week. I felt earlier this week that it was me against my hair and my hair was winning! It started falling on Thur and by Sat it was just coming out in clumps. I had the boys this last weekend and they really had issues with me shaving my head in front of them and for this reason I chose to wait until they went back to their dad's. For me it was a very long weekend and something I just needed to do for the boys to not make things any harder for them. They have just about enough going on in their lives and I sure do not need to add to it but believe me the minute their dad picked them up on Sunday night and the door was closed I was asking for help to get this over with! There is very little that I have control of with cancer but I do have control of my feeling and me shaving my head when I want to and not because I have to feels like I am taking control of my situation. This is the 3rd time now for me losing my hair and it sucks to not have hair again but its hair and it will grow back (hopefully) I can think of a lot of things so much worse so I guess for me it has just been perspective :-) Now when I have lost my hair before my head was always very tender and sensitive and any hair that was there was always very soft but this time around has been so different. Even though my head was shaved with shaving cream and a shaver my head is so rough. I have been telling people it is like Velcro.... I lay down on my pillow at night and when I go to roll over I just stick to the pillow and take it with me. Its the same thing with hats and scarfs. They just stick and makes it so hard to wear them. On top of this my head is just so sore and hurts so much. By the end of the day I am in so much pain I cant wait to be alone and just relax my tired head. I was given some stuff today at my appointment to relive the pain and it does work when I first put it on but it really only last about 30 min and then I am back to feeling crummy again. Hey at least I am getting the 30 minutes of relief, right? My body is now feeling the last 3 weeks catching up with me. I am so tired..... I feel as if I need a nap at least 2 to 3 times a day. I don't want to live my life in bed and I have found myself the last few day pushing myself out of bed and moving so that I am not living here. I truly pray that all of the effects wont last to long and that I can feel somewhat normal again ( I am not even sure I know what normal is anymore) and just get back to enjoying and loving my family and friends!