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!

So tired tonight but sleep is hard to come by....

  
     I am so tired tonight but I am struggling very hard to find Mr. Sandman tonight! I had such a wonderful day with my dear Aunt that was in town from North Carolina and my Cousin that I haven’t seen in at least 11 years or so, We had such a great time catching up and just going on about just about everything. I so LOVED spending time with them and it was a day very well spent, but with this great day had a grey cloud hanging over my head.... I had been told that I would hear from my Dr today on the results from the chest x-rays. By 11 am when I hadn’t heard from him I called and left a message asking him to please call me. You would at least think that maybe you would hear from him at that point right? The answer to this question is a BIG FAT NO!! By 8 pm I knew that he would not be calling and I was going to need to figure out how to get through this weekend without knowing any answers. I just really struggle with how willing they are to make people wait. This is my LIFE!! I don’t want to wait 3 days for test results that you were given this morning. Is this how you would want to be treated by your Dr.....? I tend to think not! Ok, don't get me wrong... I do love my Dr and he has always taken good care of me and been very open and up front about what is going on. It’s just hard to do this waiting thing! I KNOW for a FACT that the cancer has started to grow again and really what I would like from my Dr is for him to just say this is what we are doing next so I can prepare myself and just move on it as soon as possible. I DONT HAVE TIME TO WAIT ANYMORE!! My children need me & I need to be here for them as much as I can right now. Every day I wait is just 1 more days that we should have moved onto something else!
    I am also struggling with a few other things right now and I just felt like instead of keeping them all bottled up maybe I could put it here and someone else might just feel the same way. My hair has started to fall out & I am trying really hard not to shave it yet while the boys are here. Colby has a little harder of a time with my hair being gone but I thing I will talk to him in the morning about this and just see what he thinks about this.... Maybe he will want to shave it for me, we will see. I don't do well with little pieces of hair all over the house. My clothes and really everywhere. My head is just so extremely sensitive right now to even think of running a shaver over my head right now just doesn't get my juices flowing. The thing is if I don't do it I am more up tight and just can’t seem to relax until it is done..... Ughhhh, I just can’t win here. So just with these 2 things on my mind tonight I am wound tighter then a clock. I am trying my best to relax and let the sleep take over and I am so overjoyed to have my 2 sweetest one here with me this weekend and turning it into a wonderful family memory for all to remember

I am now halfway through radiation :-)

     I am so very happy that I have now made it halfway through radiation but it does come with alot of other concerns right now. The side effects are starting to take place now and I can tell that I will be starting to lose my hair very shortly. It comes out a little now with just a little tug but my head is just so sensitive and when I touch my hair it just seems to hurt to the roots. I am also still having the wonderful headaches. They did start me up on the steroids to help with the swelling and to take the headaches away but the steroids make me feel so much worse phyically. I have been trying to figure out over the last week how little of these I could take and still feel somewhat normal without the headaches but not a lot of luck with this so far. Tomorrow I will just have to suck it up and take the steroids like I was told... who ever said these Dr's knew best? My body just kind of aches now and I look forward to the end of this radiation but I do know that I have some other things going on that has me very concerned.
   When I was told 2 weeks ago that we would be doing whole brain radiation they told me that they didn't want me to be taking my chemo pills as this would make my radiation side effects so much worse. I spoke with my oncologist about this and he agreed that I needed to stop taking them while I was going through this treatment. So I have not been taking these pills for the past 2 and a half weeks. I have now started to have the cough come back and my lungs feel very heavy again. I have a hard time breathing and really it feels like I am having an asthma attack. I decided that it was best if I called my Dr today as it really scares me to think that I have only been off of these pills a short while and could the cancer start growing this quickly? When I talked to him he said that more then likely if it had started to grow again that it was doing it while I was still taking the pills and not just in a 2 week period. So tomorrow I go in for a lung x-ray to find out if there is any change. I already know the answer to this question and am just trying to prepare myself for what will be said. I would so LOVE for my body to work with me a little bit here but I also know that not everything is always in my hands. I need to just keep my faith and know that everything will end up working out just how it should. Besides I also have LOTS of fight left in ME!

2 Day of Brain Radiation DONE...

I have now finished 2 days of  Radiation. It is a lot different experience then it was the first time around. Last week I had to go in and they made a mesh mask that goes over my face and kind of latches my head to the table so that I don't move at all and the radiation goes to the places that's needed.  This is what cracks me up... They put this mask on my face that is pretty tight and very hard to blink or even talk and every time they put it on they end up asking me questions that they are expecting answers for. I am really truly not sure if they really do this on purpose just to drive us crazy. I did notice also that when the radiation machine goes on there is this smell as soon as it turns on. It only last a minute or so but a very distinct smell. I asked the girls there today if this is something common as I had radiation done before and didn't ever remember smelling anything before. I was told that the only time they ever hear of someone saying that there is a smell is only with Brain Radiation. She couldn't really explain why just that it does. I was just thinking that really what it was is my brain frying... LOL The side of  effects have been that I have had some swelling in my brain from the trauma of the radiation so this causes a massive headache that in turn makes my stomach upset. They are talking about putting me on steroids again for a week or so to let the swelling go down some. I hate the thought of even taking steroids again. This makes me feel so much worse and then  I can't sleep on top of that so I am having to take my Ambien to try and get a least a few hours of sleep. Because of all the trauma to my brain they has also decided that it is best for me not to be driving as I am going through this treatment so no driving for the next 3 weeks. Now this is one I am really not so happy with. I don't like making  other people wait on me or not being able to do things myself. I guess this is just one of those learning lessons that I just need to sit back and let it be and be OK with. Let me just say now to all my friends that will be helping me out during the next 3 weeks Thank You from the bottom of my heart... I couldn't do this without you!!

Whole Brain Radiation

    Well the news is in and instead of going with Gamma Knife again they decided that it would be better to do Whole Brain Radiation. I honestly wasn't surprised when the Dr told me. I had actually gotten a call from both of my Dr offices a few days before to schedule appointments and even though no one had said anything to me on the phone I knew that this was something different then what had been done before so I had completely prepared myself before I went into this appointment. I guess I should have also prepared my support system that was there with me as when the news came down I could just see her facial features change and how upset she was. My dear friend Jennifer has been a Rock for me!! She has been to almost every appointment with me and always knows what questions to ask when we get new news and I am sometime in a blur and can't even think to ask at that moment. These appointment are sometime very intense and she has been so strong and helped support me every step of the way. I feel bad that I didn't for warn her and I know how hard it is to feel like the rug has just been pulled out from under your feet. I only mention this because I want Jennifer to know how much I love and appreciate her and everything that she has done for me. I couldn't get through all of this without wonderful friends such as her and am thankful I have people like this in my life!
  So moving on to the Radiation.... I will be starting this on Monday and it will be 5 days a week for 3 weeks. I am actually feeling a little better about doing this. The Dr said yesterday that it really gets a bad rap and really isn't as bad as everyone makes it sound, although it is whole brain radiation. Only time will tell how bad it is and believe me I sure will be speaking my mind about it! I will lose my hair again in about 2 weeks or so after treatment starts it should grow back again in about 2 to 3 months although there is a possibility that it will be thinner. My hair has always been very thick so thinner may not be to bad, :-) we will see. I will also be very exhausted for a few months so I may be kind of unsocial for a bit. Just bare with me and hopefully I will get back to my normal self soon. I am feeling good about this decision. There were just to many things going on in my head that they couldn't  say for sure if it was or wasn't cancer and we know for sure that there were 4 new tumors. So to do the whole brain radiation just seems like the right way to go right now. I am at peace with this and know that God has a plan for me that things will work out the way that they are supposed to.