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!