Where does time go?

 Wow.... where does the time go? I can't believe that it has already been so many months from my last post let alone that the year is coming to an end. I guess since it has been so long since I posted I should get you all up to date.  Oh where to begin.....I am going to be completely honest and let you know that things have gotten progressively worse.  I am now currently bed bound and spend lots of time in bed visiting with my children, family and friends.  But you know me, it is all about spending time and those precious moments with those that I love.  We ended up having a wonderful family Christmas with my Brother, Sister, her family, my Dad and all of my kids.  I still can't believe we squeezed all 14 of us into my bedroom!  It was an interesting holiday this year, but although it was not what I was expecting 2 weeks ago, it was probably one of the funnest Christmases despite the pain. Can my brother, sister and children make anything greater for me? I don't think so.  I was planning on leaving today on a family RV camping trip with the kids, but because of my situation, plans have changed and we are now doing an indoor camp out here at home.  It is a big let down for the boys and that makes me frustrated, but once again it is all about memories, and I know that it doesn't matter where we are at, it is just about making memories.

  Medically, right now, I have numbness on the left side of my body that makes it impossible for me to get around without any help.  But of course, I want to keep it comical and we have had some pretty funny times with my health care givers trying to help me around the house.  I never knew how strong Bladen was until this last week.  What a stud!!  I do have 24 hour supervision now and some of my health care givers, including friends and family, we have had some pretty good laughs.  You know I am going to keep it as light as possible.  As much as I love all of my friends, I am still going to ask people to not try and contact me directly.  I cannot even type this blog myself because I  have very limited use of my hands.  No more Doctor visits for me.  I am now on hospice care and it has been very nice.  They have been so great and have really helped me understand and keep things under control with my disease.  With medication we have gotten the coughing under control and that, right now, is something I am not having to deal with. 

  With all of this wonderful cancer stuff going on, we do still have some great news to report on the family side.  Bladen and his girlfriend Hannah, are engaged!  They got engaged about a month ago. I am so excited to have Hannah become a part of our family.  I am especially excited  that I am going to be an Oma (but that is not public knowledge, so I really shouldn't be announcing it here,  ha ha).  I have always looked forward to grandchildren and knew the time would come, I just didn't think it would come this quickly.  Being an Oma is one of the most important things to me and being able to find out whether it is a boy or a girl would just be the icing on the cake.  Bladen and Hannah have plans to get married after the baby is born, which will be in June.  They are so sweet together and I am so happy to have Hannah joining our family.

I am sorry that it has taken me a while to update you all and as much as I would like to keep you up to date in the future, I can't guarantee it will happen as quickly as you would like.  With the help I am getting I will try to have it updated a little more often.  I hope you all had a very Merry Christmas and I will be sending all of my love to you and your families for a happy New Year.

Connie

Peach Fuzz

 Back in July when I lost my hair from the brain radiation. I was told that I may not ever have hair again or that if I did it may be thinner. When my hair fell out it was so different then how it was when I lost my hair from chemo. With chemo I always had just a little bit of peach fuzz there and knew that as soon as I stopped chemo it would grow back very quickly. With radiation it was gone gone gone!! There was no peach fuzz and all I had was a very smooth bald head. I had pretty much at that point just figured I was not ever going to have my hair again and just surrendered to that feeling. Hey the nice part of this was that it takes me 1 minute now to do my hair. Well, as of this week I have started growing a little bit of fuzz on my head. It is way to early to tell what it might end up looking like but from what I can feel right now it is pretty patching and there are quite a few bald spots. I will give it about a month and then I should have more of an idea. It's really funny the things that can make me so happy now. Just the thought of having hair on my head again makes me so excited. We are coming into winter (maybe not here in California) and my head gets so dang cold I need all that hair on my head. Who knows we will see..... I could end up being as bald as my grandfather. :-)

I am back!!!

    I know that I have kept you all out of the loop over the past month and for that I am very sorry. The last month has been the hardest of my life but then again I have also had some of the best things ever happen to me. 1st off let me just say Thank You so much for everything that everyone did for the Benefit Concert!! To come into that room and see all the support and love for me and my family was just amazing!! There was so much time and energy put into this for us by so many of you and my younger boys will forever talk about how awesome and fun it was. You all have my heart and all my love!! I have had the chance also this last months to be able to visit with some of my family that I have not had the chance to see. Some of which have been years others just months but still none the less missed very much!! I loved having my sister and my nieces and nephew here for a week. Unfortunately I was so sick I didn't get the chance to really visit with them but I love them so much and am so thankful that they were able to come for the visit. My brother also showed up, which was a surprised to me. He has been MIA for too long and believe me I gave him a good big sister lecture no matter how bad I felt. I am sure his 1st thought was  "what the heck was I thinking coming to visit her when all I get is lectures" but it was only done in love and I am so glad that he made it here for a brief visit. I can't even begin to tell you how many family and friends showed up at the benefit concert that I haven't seen in so long. I am so glad you were all there and I hope I got to visit with each of you as you all are important to me! This last week I was able to go to North Carolina to visit with my Aunt, Uncle and cousins. Before this trip I really wasn't sure if I was going to be able to make it. My stomach had been so upset and to keep food down just hasn't been going very well. So getting on a plane and not having to run to the bathroom really scared me.  I decided 2 days before that I really needed to make this trip. That I hadn't seen my cousins since they were little and I really didn't know if I would be feeling any better any time soon. So I sucked it up and got myself on the plane. I have to say I don't know how I managed to get there without getting sick but I did and I am so glad I did!! I really was hoping to be able visit more of North Carolina but all I could muster was hanging out at their home. We had such a wonderful time visiting & I don't think I ever talked so much. My cousin Amy has 2 of the sweetest daughters that I completely fell in love with. They had lots and lots of questions but that's one of the things I fell in love with. My cousin Josh is an amazing artist. He has hundreds of drawings that just completely blew me away with all the detail. Keep your eyes open for Joshua Fry...... You will be impressed!!! It was such a great visit. I am so thankful that I did go! I made it home without too many issues and was able to make it to the parking garage before I started getting sick. Poor Bladen, who wants to see this?
    So onto what's been going on with my health. While I was going through brain radiation I started to get sicker and sicker. Just the thought of some foods made my stomach turn and then I got to a point where I just couldn't eat anything. Then a cough started and I knew that the cancer was growing again in my lungs. We started a different type of chemo and this knocked me flat on my back except when I am hanging over the toilet. I have never been so sick in my life! My stomach is upset, I am throwing up, I can't eat and my body just aches to my bones so much so that I can't stand anyone touching me. My Dr has decided to pull me off of the latest chemo as it is not working and I have had a 20% growth with the cancer in my lungs. Along with the coughing which has gotten so much worse and I am still needing to drain my lungs about every 3 weeks or so. I have had some pretty dark times over the last month and half. Not really knowing what is going on and seeming to just get worse every day. I have gone to another Dr now for a 2nd opinion. I will be starting an IV chemo plus a pill form of chemo next week. I will also be having a brain scan next week. My Dr wants to rule out that my stomach issues are not from something going on in my brain. She gave me a lot of new option and a ray of hope again. I have still been very sick but now I feel like I have something to look forward to and hopefully get back to life.
    Over the past month I have not been able to spend the quality time that I would like with my boys. I have had to ask them to step up and really help me. I am so thankful for all my children and their willingness to always jump in and help me without any fight! With that being said I also want to thank you all so much for all the messages and comments over the last month. I am sorry that I haven't been able to always comment back or send an update but with everything that was going on I needed to shut down and just figure out what was going on with me. I cant unfortunately always answer every text or email message.. I know you all love me and it's just because you care but please know that I can't get back to everyone every time. I do have the Connie's Crew FB page if you would like to help with anything at all and one of the girls will get back to you with any of my needs. I couldn't get through this without all of you and your support and love. Thank you so much and I Love you! I promise that I will be updating my blog more often so you all know just whats going on.

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!

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.

A waiting game... sighhh

    I was supposed to have my appointment yesterday with my Dr to find out the results when he presented my case to the Gamma Knife team but on Friday I got a call from my Dr's office telling me he wont even be presenting my case to the team until June 6th. Ugghhhhh!!! I have to say through this whole cancer experience over the past 4 1/2 years everything is a waiting game. You make an appointment and you wait 2 to 3 weeks to see them. They send you in for testing which is another 2 to 3 weeks to get this done then you are waiting for results of testing which could take about a week or so to get back. Most of the time the Dr's want you to come into their office to talk to you about result they wont give them to you over the phone very often so this is more waiting. It all makes me so tired and very impatient. So what am I supposed to be learning from this? Is my patience being tried because maybe I need to learn to be more patient. I don't know but it all makes me wonder. I wonder if a Dr has these same issues? Does he get in right away or find out results of testing quickly for him or maybe a loves one? I don't know but just thought I would throw that question out there. So at this point I really don't know what will be happening or when so I will be trying my very best to keep myself really busy so that I wont be thinking about what the next move is. Luckily I have the boys here with me this week and really don't always have time to think of much of anything but them when they are here. I LOVE these kids so much and they really bring so much joy to my life and I am just proud to say that I am their mom!

My heart is full of Love today!

    I just can't tell you how Loved I am feeling today. It is so nice to know that I have so many amazing and wonderful people that are behind me. That are always there pushing me on and telling me to keep fighting even when times get really tough for me. There are moments when things get so tough and I really truly feel like I am drowning that I just can't do this. This is when one of these friends just reminds me that it's OK and they are there for me no matter what happens. That all I need to do is focus on getting better and never to worry about all the other stuff going on. I don't know what I ever did to be so lucky to have all these people in my life but just know that each and every one of you all make a huge difference in my life and I could not continue to do this battle without all of you! You are all very much loved by me and continue to make a difference not just in my life but the life of my children!

Where oh where is my brain?

     Is it the effects of Gamma Knife treatment or the effects of Chemo that make me totally feel like I am losing my mind? I am really not so sure but I can tell that things are changing. I can send a text an email or a comment on facebook and for some reason I am thinking just what i want to say but when it is typed out and sent I will read it back and there are complete words that I have left out or an entirely different word in place of the one I wanted. Does this make any sense at all? Like tonight I meant to use the word shake but when the message was sent it was shack. The funny thing is I try and proof read everything I send but for some reason I am not catching this stuff and really it is just making me feel so dumb. Now I understand making mistakes like this every once in a while but I am finding that it is always happening now. This is not me! Sometimes I so miss the old Connie. The Connie that could say what needed to be said without 20 mistakes in what she was saying. I am almost at the point of not wanting to say anything because I am just so frustrated with it all. Do I just need to relax and know that all my friends know what is going on and they understand? Of course!! It is just so much easier said then done though. I know that I am so much harder on myself then any of my friends would be but I just can't shake this feeling of feeling so dumb. I know that I forget things now as well. If I don't put it into my calender right away there is not much of a chance of remembering an appointment and really I am finding that I am trying to write just about everything down so I can remember. Ughhhh, part of it could be due to my age but not even a year ago I didn't have all these issues. So I guess the ranting in this post tonight is more for each of you to know whats going on and maybe a little understanding just to know that I am not completely nuts.

News from the Dr but a great weekend!

    So... I didn't really have the kind of Dr's appointment that I wanted to have this last week but I had prepared myself for the worst and if I got some good news well then I could celebrate that. If I am going to be completely honest I knew that there had been some changes and that I would be getting some of the news that I expected. My biggest concern though was that I was going to have to be doing whole brain radiation. This is where the good news comes in, all though we have at least 2 to 3 new spots and the other spots that have already been treated do look bigger my Dr feels like they are bigger because of scar tissue and not because the tumors are growing. He also feels like the new tumors that are there now can also be treated by Gamma Knife again. He really wants to wait until we have no other choice to do the whole brain radiation. Not that I am so excited to do Gamma Knife again but this option is so much better then the whole brain radiation! My Dr will be presenting my case to a Gamma Knife board and they will make a decision on my case in a few weeks. I will be going back to see my Dr on the 29th and I will know more at that point but we are probably looking at doing Gamma Knife again sometime in June.
     I am so thankful that I had a very busy weekend planned to keep my mind off of the news. I was really struggling with my feeling on Thursday and really wasn't quite sure how I felt about things. We had lots of people at the house on Friday night as we were all getting up nice and early on Saturday morning for the Race for the Cure walk. I can't even tell you how wonderful it was to have so many of my friends and family there supporting me! It meant the world to me and I love each and every one of these people for being there and getting up so early with me!

  These were some of those wonderful people  minus some that were cut out of the picture or even taking the picture. What an amazing group of people! Sunday I was able to spend the day with all 4 of my children. I love my children so much and am so thankful for them. They make my life complete and remind me that no matter what happens to me there will always be a little bit of me in them and that I will be still here after I am gone. So all in all I am thankful for this wonderful week and for the wonderful people that I have around me who help me to contiune to fight and love me every day!

Meltdown!!

OK so I am going to admit it tonight.... I had a complete melt down today!! All though I had a great appt with Dr S yesterday & the cancer isn't growing in my lungs but it is also not any smaller. Which is really great news & I will continue on with the chemo drugs that I am taking now until this no longer works. This is good news & I can lead a some what regular life right now. At the end of the appt though Dr S asked about what was going on with the tumors in my head & what Dr C had said about them. I had told him in the last scan Dr C say a few things going on but really wasn't sure what it was & that he wanted to wait another 2 months to see if there was any changes or if we could even see more. Dr S said that he did see the scan & understood what Dr C was talking about but that these were the same ones as before & had already been treated. He said that you can only do the Gamma Knife so many times on the same area then it just is too much radiation. He suggested going ahead & maybe thinking about doing the whole brain radiation at this point. So we started to talk about the after effects of radiation. I was always under the impression that I would lose my hair with this but come to find out in most adults they lose their hair not just for the period of time that they are going through radiation but permanently. I was fine yesterday going over this information but today it was a melt down for me. It's one thing to know that you are going to lose your hair but once off the chemo it will grow back but I just can't imagine losing my hair & not ever having it grow back. So really living in wigs, scarfs & hats for the rest of my life!!! This SUCKS!! Then to get to my appt today for the brain scan only to find out the MRI is broken & they need to reschedule. That was the end of it for me & a complete meltdown. Now I really started thinking about it later in the day & when I first found out I had cancer in 2007 I had a meltdown but this 2nd time around no problems dealing with the cancer this time just the financial side of it this time around so I am going to be easy on myself & just say that I really needed the good cry today. I still know nothing yet on the brain & will go back in on Tuesday for the scan then the appt to find the results but in the end it really doesn't matter what the results are. All that matters is that I am still here to enjoy my family & friends as long as I can!!! :-)

Trying to Relax

I am sitting here tonight just trying to relax but all I am feeling is a little anxious. I had my lung this afternoon & will be getting result on Thursday then I will be going in on Friday for the brain scan. I know that I got this great news from my Dr 3 weeks ago but it's really hard to get that little nagging feeling in the back of your head telling you that it may not be the news I want to hear out of my head. Honestly, I am really not as concerned about my lungs but more about what may be going on with my brain right now. I am waking up every morning now with headaches & that has been one of the things they keep telling me to watch for. Unfortunately all the medication that I have been taking wont do anything for my brain tumors so even if my tumors were doing great in my lungs it could be doing the complete opposite in my head. After the last experience with the Gamma Knife I am not supper excited to sign up for it again. All though the Gamma Knife option is so much better the whole brain radiation. Ohhh... what to do? Then again why am I stressing over this when I know nothing right now. I need to just keep telling myself "relax Connie you know nothing & just need to enjoy your time right now". Sometimes this is so much easier said then done! Only a few more days & I will have some of the information that I need. I can do this!!

Running with my happy feelings :-)

     Man alive that sucked!!! I have been trying to post for the last week on my thoughts about my appt last Thur & for some reason I just kept getting an error code. I was finally able to get this all figured out today. I didn't realise how much I just need to write everything down. It's like a form of release for me. It's almost like it makes it real once it is written in front of me. I don't know but I am sure glad that I am back!!
   So lets get to my thoughts..... On my last post I was concerned that all my coughing was maybe coming from the cancer growing in my lungs again but as I was flying home from my sisters it became very clear that I just had a good old fashion cold. Man this cold really just kicked my rear! I was down for a few days & am now starting to feel so much better. I had been thinking that I had my Dr appt this week but on Wed night I got the reminder call that my appt was on Thur morning. I was thinking Wed night that I really needed to reschedule it because I was feeling awful but when Thur morning rolled around I knew that I needed to go & that maybe he could just check on the cold as well. So I get the boys off to school & head to the Dr's. Now I have to say that when I started coughing last week I did check the tumor in my collar bone. We left it there so that we could see any changes that may be happening with the cancer without any scans done. When I felt it I thought it seems smaller & I was having a little harder time finding it but sometimes I feel like my mind is playing tricks on me so I really didn't want to get my hopes up. When Dr S. came into the room we did our usual little visit then he started his exam. He always checks my collar bone first. He is quite.... checking first the right side where the tumor is then the left then back to the right.... The silence is almost deafening but he then smiles & pats my back & says "The tumor is smaller & very soft". I just want to jump up & hug him!! I don't feel like I have gotten much good news lately from him. Just that we are controlling the cancer & its not growing, not that that's bad new but not good news either. So what was the plan now? We will continue on the meds that I am taking now for 1 more round then we will do a lung scan in 3 weeks to really see the progress. Dr S. seem positive & I was just so happy to hear that things are shrinking. So I went away from this appt feeling great right now. Feeling that all my hard work in changing my diet & my exercise routine is finally paying off, that I really am not doing this all for nothing. It's a great feeling right now & I just want to keep running with this feeling for as long as I can! I will know more in 2 weeks but for now I am just HAPPY!

Aches & Pains

  As I lay here tonight in complete pain & my body just aching all over I wonder if I should post tonight on how I am feeling. I don't want to be a complainer but then i remind myself why I started this blog. I wanted to not only help myself get stuff off my chest but to also give others an avenue of information on how they may feel if they are going through this. So with that I will post my feeling tonight. I don't think that I have ever been so frustrated in my life! All the simple things that you always take for granted have become so hard for me. I have lost the strength in my hands so not only now do I drop things constantly but I can't open things up anymore. A bottle of water you would think would be so simple & every time I pick one up I still try & open it with no luck.... Ughhh I think what is hard right now is when I am traveling I can't lift my baggage up to the over head compartment. If you look at me right now I look like a perfectly healthy normal person & when I ask someone for help they just look at me like I am just a wimp & do I really need their help. It makes me feel bad! I have always been someone who takes care of myself & does just about everything I could by myself so to even ask someone for help is alot for me. I guess that is just something that I need to work through myself. I thought when the Dr put me onto these new pills that it was going to be easier on my body & really it is alot better then the chemo IV but I am really surprised with how much my body aches. I had already started having issues with my arms, neck & shoulders but thought that would slowly go away after being off of the IV but that has just gotten worse & now my legs just ache. I move very slowly when getting up or walking on stairs. Its almost like being a 80 yr old women. I was talking to my brother in law Rich today about just this. He has been having alot of issues with his back for the last few years & his pain can be far worse then mine at times but he was saying that at one point he would have a bad day & the pain would be at a level 2 but the next day it might be a 0. Now the pain never goes away it is always a level 2 & above. This is just how I am feeling now a days. It's always there it never goes away & I am now just learning how to live with it. Yes, I could take pain medication but this knocks me out & I don't want to spend my life all drugged out & sleeping through everything. So as I lay here tonight I wonder is it going to get any better. I have started the coughing again also & I worry that the cancer may be growing in my lungs again. Then again if I get lucky maybe its just a cold & hopefully a few days will tell me the answer. I don't know but I just wanted to share my feeling with all of you & time will only tell.

A great months end

As this month comes to an end I have had the chance to end this month out so great! Last weekend I was lucky enough to have my daughter & her boyfriend come for a visit. I just can't even begin to tell you how much I LOVE having all my children together! We were able to celebrate Cameron's 10th birthday together. The pure joy on Cameron's face just knowing that his Sissy was going to be there to celebrate his birthday was just priceless. Crystal had asked me what Cameron wanted for his birthday. When I asked him he said " I want a Nerf gun then he said anything that Sissy got me would just make me happy" It makes me so happy that my children are all so close & have such a wonderful relationship with each other. I hope this is something that will continue on in the future as they all get older. On Mon we dropped the boys at school, took Crystal to the train station & then me to the airport to head off to Utah to spend some time with my sister & her wonderful family. I have had such a wonderful time here with all my family. Shana & I have been able to get some good talking in & are just connected as we always were. I have also been able to spend some much needed time with all my nieces & nephews. My sisters kids are truly so awesome! I haven't been able to see my older niece & nephew in quite a few years so just being able to sit down & talk with them has been wonderful. My niece Brittany just blows me away. She knows just what she wants & where she is headed. My nephew Alex has been working quite a bit but a little conversation here & there has been great & of course all the hugs. Then there is my younger nephew & niece. Shana & I were able to go out to breakfast with my nephew AJ today. What a character he is! In his older years he has always been a little quieter around me but man on this trip he is just talking up a storm. I love hearing everything he has to say. Then there is Brooke.... Now here is a girl you need to keep your eyes on! She is a rising star. This little 12 yr girl can play soccer like no other girl I have seen. She lives & breaths soccer every single day & she is so amazing on the field. I am so glad that I have been able to see her play a few games while I have been here.
So as you can see my life is very full right now. I feel so blessed to have these wonderful people in my life who bring such joy to me every single day. This is how I love spending my time with all the people that I love & letting them know every day how much I love & care about them!