It has been a long time since I posted because someone has started a facebook praying page for me
You can find it as Praying for MelanieGoberDecker
I think this is the link

https://www.facebook.com/PrayingForMelanieGoberDecker

There has been a lot going on and they are only giving me a  couple weeks to a couple months to live. Thank you all for your prayers.

MRI Results and Trial

The radiologist found a 3mm questionable area in my right frontal lobe. They don't know if it is cancer or a blood vessel. So, for the time we are going to monitor it. If it grows or I start having symptoms then we will look at radiation.

The study has approved my participation even with a possible Brian Met as we are not actively treating it. I should receive the consent form later this week, and someone from the study will call to go over it with me. They will then contact my insurance and make sure they will cover all standard of care treatment while on the study.

With the study I will have to be hospitalized on day 1 for 36 hours and after that a week later for 24 hours and again the 3rd week. This is so they can do specifically timed blood work. After this I would have a doctors exam and blood work every 28 days.

Please pray this study will work and my cancer will respond. Also, pray the spot in the brain goes away as well. The chemo in the trial does cross the blood brain barrier so if it does go away we won't really know if it is cancer or not... But I will just be happy for it to be to gone.

Pleas pray I do not have any drastic side effects and that my body can handle the side effects known to come with the drugs.

Thank you all

Update...

Sorry it has been so long since I have posted an update. I have a few places I put updates and didn't realize until today I have neglected my blog!

I did start TDM1 the beginning of March. After one treatment I had an amazing response to the drug. My tumor markers dropped drastically. However, I had a physical reaction as well. I had this horrible pain in my right abdominal region. Pain medication hardly put a dent in the pain. I waited to go in though, because I was having a fundraiser that week and didn't want to miss it. The day after my fundraiser I went to the ER and found out it was my gallbladder. They thought they were going to have to remove it, but the following day the pain began to ease and after more tests we found it was healing on its own.

I had this reaction again after the 2nd dose, and again they hospitalized me and thought they would be removing it. The surgeon felt we should give it more time and it again healed on its own. I was very thankful for this. The good news continued as I had a PET scan after this and the tumors had shrunk drastically. They saw no cancer in my liver, which previously had been covered with tumors. My lung still lit up some but it had gone down some. The lymph nodes were all clear as well. My oncologist said she felt it was almost a complete response... but she was assuming the lung may not be cancer. However, I know and now she knows that was a wrong assumption.

I continued on this drug until almost 3 weeks ago. A couple months ago my tumor marker started gradually raising. Not by much, but enough to worry me. So, I had a PET scan again and this time it showed a few lymph nodes and more cancer in the lung. This of course means I have to start a different treatment as the cancer has built up a resistance to the TDM1, I was so extremely disappointed as I was so praying and hoping this drug would cure me. I had such a miraculous response initially and I did what I have tried not to do but keep doing, I convinced myself I could be cured and be cancer free. Although I know the Lord can cure me I also know He hasn't promised me that and He can say NO! When I get complacent and believe this might be it I am always disappointed when it comes back or grows.

I don't know if it makes any sense, but by remembering that my cancer may take my life in the near future I do not get so upset when I find out it is growing... I am still upset but it doesn't hurt as bad. When I not only have faith but complete belief and hope that I may be cured I am much more distraught to find it isn't working anymore. I, of course, am always upset to think that I may die at anytime from this cancer, but knowing this, it is easier to keep in in the back of my mind and separate from it. I don't spend too much time talking about it. I try not to think about it very much. I guess I pretend a little bit that it isn't there all the while knowing it is... I know that sounds weird but it works for me. If I don't get my hopes up they can not be dashed again and again and again.

I have agreed to be a part of a trial. If my brain MRI is clear and the insurance approves I will begin this trial in the near future. I will be on an oral chemo I was on before and another oral drug that is new. It is only a phase I trial, which is rather scary, but my Oncologist doesn't have very many other options for me. This was actually the only one she presented me with until I asked for other options. She only has 3 other chemo options... this is very scary to me.

For those of you who pray for me and see me at church or other places, please know that I am not avoiding you or do not appreciate your prayers and encouragement. But as you may not know what to say to me I also do not know how to respond to you besides saying thank you. I typically get all my tears out on my husbands shoulder when I first find out and then try to separate from it so I don't have to be depressed and sad and crying all the time. When you tell me you are praying for me, ask me how I am doing, etc... my response will be short because I do not want to cry or begin to dwell on it again. I appreciate hearing your concern for me and it touches my heart. I don't want you thinking I don't.... I just don't know what to say besides thank you for your prayers and when asked how I am doing typically I say "ok" or "alright". I am not lying because emotionally I have spent my tears. I have spent as much time as I am willing to, thinking about it (normally 1 day). Then, because I can not change any of it I step away from it and put it in the back of my mind. If I continue to dwell on it I will only make myself feel worse. There isn't anything I can do but change treatment. Once I begin a new treatment and have all the side effects then I will respond in regards to my symptoms. Please don't be offended or hurt. Know that I appreciate your concern and your prayers, but it is much easier for me to communicate in written form where I don't have to be emotional but can just state the facts.

Thank you everyone who is praying for me. Thank you for supporting me for such a long time, and praise the Lord that it has been such a long time. Although I would prefer to not have been on chemo for 4 1/2 years, I am thankful for the time with my loved ones. I mourn when thinking about leaving my loved ones, especially my baby girl. I can't fathom leaving her without a mother, and that is what hurts me the most. Thinking about her losing me, her confusion as to where I went and why I am not here to comfort her, her growing up without me there and her not having me to support her physically and emotionally through all those mile stones and complications life brings.

I will try to get back on and update as soon as I know what is going on. My MRI is tomorrow... hopefully I will have the results soon and shortly after have the approval from the insurance to begin. I would prefer to start asap and not give the cancer free range to grow at its will.

thank you all again

Burden and Blessings

In December I had to change to a different chemo, because the current chemo stopped working. The new chemo made me lose my hair, again. I had two courses of this treatment only to find out it wasn't working. Instead the cancer continued to grow and my tumor markers were at a number I have never seen. So, we changed to another drug... Which again didn't work. My tumor markers continued to steadily raise by a pretty good amount each week.

At this point there aren't very many chemo treatments left for me. However, there is a new drug that we have been waiting on the FDA to approve (TDM1). Two weeks ago when we found out the treatment wasn't working, this drug was still not approved. My doctor felt it would be a good time to stop chemo and wait fore the approval of this drug. It was scheduled to be approved the end of February. This gave me 3 weeks of treatment. Of course, this was not the best choice, but really the only choice.

In order to start the new treatment I needed to be off treatment for 2 weeks anyway, and we wanted to avoid any complications taking another chemo could cause. I am extremely afraid of the cancer growing while not receiving treatment. It was scary to think of it growing while on chemo and how much more it will grow with nothing on its way.

The new drug has been approved and we are now waiting for the pharmaceutical company to ship it to the hospital. I am hoping by the end of this week. I have been having other issues that lead me to believe the cancer is growing. I want to start on the new drug as soon as possible. I have a PET scan tomorrow morning, bright and early and should know the results by tomorrow night. I am pretty nervous about this scan... More so then any other scan over the last 4 years... By I am still praying for a miracle... I want a complete cure. I know God can do that!

We have also been so blessed. I have been concerned about how we are going to meet our deductible this year. It has been 2 years since. Have had any fundraiser and the money is almost gone. My mother in law and a couple friends have been working on a spaghetti dinner and silent auction fundraiser for March 9th, and then a couple days ago we received an unexpected visit from a lady, whom I have never met. She had heard about me from a friend and had seen a flyer for my fundraiser (which I believe is an old one, because we had not put one up where she saw it).

Her husband has cancer. He was diagnosed last year. At that time the community rallied around him and raised money for their medical bills. She was approached this year by an organization who needed a recipient for their fundraiser. She said they were doing well at this time and wanted to give them my name. So she found out where I lived and stopped by to ask if she could give them my name and number. I was so touched by her selflessness and kindness!

In less then an hour I received all call from the organization. It is a bunch of local church choirs who get together and put on a concert for a free will offering, and a Lutheran bank had offered to match whatever they raise up to $3000. They would then split it between two recipients.

I am very excited about the Lords provision... And a little nervous as I am supposed to speak in front of everyone that attends, but I feel The Lord has dropped this opportunity in my lap.

Why Won't It Stop?

It has been quite a long time since I've posted anything... figured it was time and I just kept thinking about a question that has plagued me for a long time. Everyone who goes through any trial will ask the question Why? Most of the time I hear "Why Me?" But for me that was not what I asked. My thought was "Why not me?" Cancer can happen to anyone so why would I be so special to be able to avoid it.

However, I have asked "Why now?" and the biggest question that has plagued me is "Why won't the Lord make it stop?" I know He can perform miracles. I know He has the power to heal me. I have seen Him perform small miracles in me. He has given me more time then the doctors ever felt I would have. He has made the cancer shrink when the doctors felt it would grow until it killed me.

Yet, it always grows back... it spreads... it just won't stop! I don't understand it. I can't understand it. If God has the power to heal me.... to CURE me. Then why won't He just do that. I feel like I see a bit of light at the end of the tunnel only to be immersed in darkness again each time it is growing and spreading. I have the faith that He can cure me, but know that it has to be His will.... Only I don't know what His will is. It would be so much easier to know what His will is... to know what will come of this... to know how much time He will give me.

All I want is for it to end... not  in death, but in a cure. I want to be "normal". To have a day without pain, nausea, extreme fatigue... a day like I hear all these other mom's my age having. To not have to think about what I can actually do that day so as not to wear myself out... to just pick up and go somewhere... take Mackenzie outside to play, go for a walk, run around the house playing with Kenzie, do a project, work on the house... wear whatever I want... be normal...

I honestly do not remember what it feels like to have energy... to be able to do the normal things : use my left arm without pain and cramping, carry Kenzie, give her a bear hug without my left shoulder cramping, reach for things, wear a bra, have a shirt fit the way it is supposed to, not be cautious of everything that could bump my chest, not taking medication non-stop all day and keeping track of it, not wanting to sleep all day, sit with my feet on the floor, walk around whenever I want, getting together with friends, not going to appointments a couple days a week, not taking my temperature all the time to make sure I don't have a fever, type or hold a coffee mug without my fingers going numb and pricking, drive without worrying about if I will get too tired or if my arm can handle the distance... so many things... normal things that aren't normal to me anymore.

I read all these posts on facebook where mom's are doing all these different things that I so wish I could do. I feel like Mackenzie is losing out as well as I am, but there is nothing I can do to change it. It has been  3 1/2 years now of cancer treatment. Going to the hospital almost weekly to have poison pushed into my heart. Dealing with the side effects of the treatment that is supposed "help" me. Dealing with the pain from the cancer.

I have to deal not only with the cancer but with the treatments and all it causes. My body has been pushed into Menopause... so I get all the lovely hot flashes, yet I still have the privilege of having my period (this really irritates me). I have nausea everyday, pain non-stop, extreme fatigue, swelling in my arms, hands, legs, feet, and chest wall. The skin on my chest wall has been so traumatized by radiation the skin is brittle... it is sore and the chemo causes recall which makes it rash and itch and swell on top of all that...

I say all of this just to make my point. All I want is for it to STOP. Why won't it STOP? Why can't I have a normal life? Why  is the cancer still there? Why is it still growing? MAKE IT STOP!

I know I won't have the answer to these questions in this lifetime, but that doesn't make me stop thinking about it or wondering why. I know that God is in control and He doesn't give us more then we can handle, but knowing all of this does not make the questions go away.

For all of you out there who wonder Why? Just know that it is okay and it is normal. As long as we still put our trust in God, and trust that He will do what is best for us. I am sure God understands our genuine desire to understand. It is okay to want your trials taken from you. How do I know this? Well, when Jesus was in the Garden of Gethsemene He asked God to take this cup from Him. He didn't want to go through the pain He was about to endure on the cross, but knowing He had to He still asked God to make it Stop! And He still followed God's will when He chose to make Him endure.

Time... precious time

So, I've once again reached that inevitable time... PET scan. I am always nervous when this time comes around. Especially if I have had some sign that it might be bad news. I am always prepared to hear the cancer is growing, but of course, I never want to hear that. This time around my tumor markers had gone up by 2 points and I was pretty sure my cancer was growing.

I am glad to say, my scan was clean! Praise the Lord for His many blessings and the privilege of more time! There were 2 questionable lymph nodes in my neck,  but my doctor feels it is due to infection instead of cancer. I have had whooping cough since Mother's Day so this made sense. These results couldn't come at a better time. I have been so sick, and as a result had to skip a dose of chemo and wasn't sure I could handle more while still sick. Since the scan is clean it is the perfect time to take a break.

I will get to be off chemo for a time, but will continue Herceptin which is once a week every 3 weeks. This will give me some much needed time away from appointments. I will continue physical therapy once a week, but that is close by and only takes a few hours of time rather then the whole day as chemo does.

Thank you all for your prayers. The Lord is great and He answers our prayers. I am continually praying for healing and of course.. more time.

Redeeming the Time

Keeping up the Fight when I just want a break...

Cancer... I hate that word and everything it means and stands for... all I want to do is be rid of it and live a "normal" life. However, God has not put that in the current plans for me. For some reason He wants me to be in this continuous fight. I can't even pretend to understand why I can't beat this thing and be done, but I know that my only choices are to fight or to die. And I know that the fight itself can kill me as well.

There have been many times I have thought about quitting. I have dreamed about how nice it would feel to stop chemotherapy. It has been a long 3 year battle... I can count on 1 hand the months I've not been on chemo in that time. I have moments when I imagine what it would feel like to have energy, be able to play with my child without being worn out in a short time, running around and doing things other mom's and ladies my age do, not having to think about if I can do something but just do it, not being in pain all the time, not having to think about cancer, not having to go to appointments every week 2 or 3 times a week.... so many things that consume my life that is all about the cancer! I want to stop... I want to quit... I want a break!

I don't know that anyone really understands this... to everyone else I look healthy and normal, but I am far from it. I have chemotherapy once a week for 2 weeks then get a week off. That doesn't give me any chance to recuperate. I have physical therapy 2 times a week every week because of my excessive radiation treatment to my chest wall. I swear my insides are those of an 80 year old (at least that is how I feel).

BUT I love my child and I want to be with her as long as I can... I'd like to say I am fighting for my husband, for my family, for my friends and to some extent I guess I am... but honestly all of those people can live without me. When I am gone they will go on and move on... but my baby is just a baby. Of course she will, like anyone else, go on, but she will be affected more then anyone else. She needs her mommy... no, she wants her mommy and I want her. I want to be here for her, to love her, train her, teach her, watch her grow... I need to be here for her and she needs me.

For her, I keep fighting. For our chance to be together, I will endure the endless chemo, walk the dark tunnel where no light shines in, wake up tired every day, put up with upset stomach all the time, never have a moment without pain, deal with the roller coaster of emotions called cancer.

My baby girl is worth all of it... every moment I can have with her is worth every bit of suffering. She gives me hope. Whenever I think about quitting or desire a "normal" life I think of her and I have the strength to keep on keeping on. She is the light of my life. She has no idea anything is wrong with me. This is all she has ever known, and losing me will be a huge shock to her. It kills me to think about the pain she will go through. It hurts more to imagine that pain for her then to deal with my own pain... knowing this makes me fight and makes the fight worth it.

I love my baby more then I love myself. When quitting would be easy, I fight for her. She deserves all I can give her and more.

Keeping up the fight!

God, The Great Physician

I have had a couple PET scans since my last post. The one in January showed the tumor in the lymph node by my stomach was back... this meant the chemo I was on had stopped working. As a result we had to change to a different chemo. I has another scan last week and this time that spot had shrunk to almost non existent! This is great news and a huge answer to prayer.

I have been continuously praying.. and have had people all over the world praying for healing. It has been 3 years now that I have been battling this cancer. A year and a half of that has been stage IV "non-curable disease". In September 2010 my doctor gave me maybe 6 months... Although I still have cancer, I am still here and have cancer that keeps disappearing! I am so extremely grateful for God's grace and mercy.

Although my doctor tells me my cancer can not be cured, I know that God can cure me if He so chooses. I also know He may decide not to cure me and take me home to be with Him. BUT I will continue to pray for healing and a miracle! Thank you all for your prayers and support during this non-stop battle. I know it has been an emotional roller coaster for many people, besides myself.

Praise the Lord for His continued healing and love and grace to give me this precious time with my baby girl who is 3 1/2 years old now! I didn't think I would see this age!

Faith, Prayer, Hope...

I've been reading this book "The boy who came back from heaven". It is about a boy who was injured in a car accident... he was actually killed and brought back. While he was in a coma his parents and many more people were praying for him around the clock. They not only believed God could heal him they knew He was going to heal him. They had complete faith that he would be healed. The dad had occasional doubts and fears but heard that still small voice telling him he would be healed.

I don't know how much of this book is real or not, but do have to say when reading it I do believe what they experienced and that God used this boy to show His power. They battled against Satan's attacks... and I know this is real as I have experienced some of these as well. Whenever things seem to be going well and God is being glorified Satan is there to bring doubt, fear, corruption... he doesn't want God to win.

Throughout this battle I have prayed so many times for God to heal me. I have prayed believing that He can heal me, but knowing that He may chose not too. Reading this book makes me wonder if I am wrong or right... is it wrong for me to know that God may choose not to heal me when I pray for healing.... or is it wrong to pray for God's healing and expect Him to do it because I believe He will? I don't really know the answer to this. I guess for me it has always boiled down to this: I do not know God's will. I KNOW He can heal me. I believe that if He chose to, He could heal me right now. I have faith that He can heal me, and I pray and hope that He does. Yet, I do not give myself false hope and tell myself that I know He WILL heal me. He has not come to me in that still small voice and told me have no fear I am going to heal you. I have not received anything like that, but I continue to pray for healing. There are times when things are looking better and I think He is going to do it, but then things get worse again... who am I to know the Will of God concerning this? Unless He tells me or gives me such strong belief I don't think I can have that knowledge.

Today I sat down and made a list of every sin I could think of that I may not have confessed so I could have a clean slate and KNOW that my prayer was being heard. While doing this my phone rang, then I got a text message... Satan was ready to interfere. I openly rebuked Satan and told him in the name of Jesus to leave me alone. I was then able to finish my prayer. I had a clean slate and felt so good. Then later I was trying to get photos edited to print at a store and had some plans fall through last minute (I found out via text) then it took way longer to do the photos, my husband was waiting at home with dinner, my daughter was throwing a fit that I wasn't there, and the order wouldn't go through! I was tired, sore, and so hungry my stomach was upset. No matter what we were trying it wouldn't work. Finally I again out loud rebuked the devil and wouldn't you know it went through. He is actively fighting us my friends. In little things, in big things, in anything to make us sin, to give us a bad day, to interfere with ministry. In anyway he can he is there to mess us up. I have found when these things happen I have to out loud rebuke him to leave me and my home in the name of Jesus and surprise, surprise things get better!

I think we don't want to think about Satan being around us, but he is here and like a roaring lion walketh about seeking whom he may devour. He doesn't want us to succeed. He doesn't want us serving the Lord. He wants us tired so we more easily sin. Fight him... know that he is there and rebuke him. God has given us that power through His sons name! He will use whatever means he can to fight us. His arsenal is large, but so is ours. We have Jesus on our side. Think about this next time you are having a bad day and things are going wrong. Think about this when you are easily sinning because of it, and stop, as Jesus to forgive you. Then tell that rotten devil to get behind you in the name of Jesus Christ! Take control of your life... take it back from the devil.

I have asked my pastor to get together another prayer session for me. It has been a couple years since anyone has laid hands on me and prayed for healing. There is power in prayer and I believe power in group prayer. All I asked is that anyone willing to pray over me would confess their sins to God and make sure they have a clean slate before God so that He can actually hear their prayers. I think this is very important and people often forget. God can not hear our prayers with sin between us. I also think it is important that I make sure I am pure before God as well. I want this prayer time to be POWERFUL! I want to feel the presence of God among us, and I pray that God will give us the confidence of  His will for me.

Keep praying, God is moving and working. He has kept me much healthier then I ever expected. He has provided for us in so many ways. He has given me strength when in reality I should be weak. He has given me the power and energy to care for my child on my own throughout this battle.

He has blessed and will continue to bless as you all pray for me. Prayer is so powerful and it is something all of us as Christians can do!

Disney World... Magical Wonderland!

I applied to several foundations trying to get a "last wish" granted. I wanted to have the chance to take Kenzie to Disney World. She has always loved Mickey Mouse, and I knew we would all enjoy seeing Disney World as a family.

Two foundations worked together to provide a 5 day vacation for us. One provided airline tickets and 1 day passes to Disney World. The other provided 2 days at Universal Studios and 1 day at Sea World and our hotel stay. Plus, a friend I haven't seen since a young girl, contacted a company she had worked for who provided the base charge for our rental car. On top of all that the 2 foundations gave us spending money for incidentals and the gentleman who brought the package to us donated $200 Disney credit cards so we could go to Disney another day, but a friend of a friend of a friend (LOL) worked at Disney and got us in another day. So, we were able to use the credit cards on toys and memory items for Mackenzie. We also had a friend and my mother-in-law give us some spending money as well. It was such a huge blessing for God to provide in such wonderful ways.

We flew out on Sunday afternoon. The flights went well, and Mackenzie enjoyed the ride. Unfortunately, she had an upset stomach shortly after we landed and ended up throwing up as we were picking up supplies after getting our rental car, but we picked up some water and snacks at Walmart, picked up some supper, and settled into the hotel before falling into bed excited for our next day when we would be heading to Disney World. Dean woke us up at 7am (which is 6am in our time zone). We got ready quickly, ate breakfast, and excitedly made our way to Disney. Since our first day the tickets were just to one park we chose Magic Kingdom. We took the ferry over and were able to enjoy seeing the castle from afar!

Once we landed and went through security, we walked right into a Mickey Parade. Mackenzie was so excited and wiggled out of Dean's arms so she could run up to Mickey's float. She was so upset that she couldn't "hug and kiss him", but no one was allowed close to the floats. We got up there in time for Mickey's float to stop. They were performing to a song and dancing. She refused to dance. Instead she waved and waved and continued to wave at Mickey until he finally waved back! It was so adorable.

After the parade went by we went on the carousel... which is always her favorite ride anywhere we go. Then we continued on to the teacups... which she had been talking about for months. She wanted to ride on the pink teacup, and we were actually able to get the pink cup! I have pictures of her adorable face smiling as big as can be as Dean spun us around really fast. She thought it was just great.

We were able to see a show in front of the castle with Mickey, Minnie, and the princess' and princes. It was so magical and had Kenzie totally enchanted. It was so beautiful and enjoyable. On our way out we walked right into another parade. This one was the princess' and princes. Each float was made as part of their story. It was so amazing to see it come to life before our eyes.

With the money donated we were able to let Mackenzie pick out toys, a princess hat, and a dress. She had a blast and was so happy to be picking things out! We left Disney World tired but happy. I was pretty beat, but was amazed a the strength God gave me to walk the entire day and enjoy all the rides with Mackenzie. Plus it was a beautiful day. It was only a high of 69 that day so we weren't submerged into scorching heat our first day. We found a good place to eat then again fell into bed that night.

We again woke up early the next day and made our way to Sea World. We got there in time to make our way right to the Shamu Show. Since I am technically disabled we were able to sit in the disabled seating area and have a good view of the show without getting drenched. I was so thankful to have a slower day as i was pretty sore and achy from the nonstop walking and standing at Disney.

The Shamu Show was absolutely awe inspiring! It was so amazing to see God's creatures perform. Their ability was magnificent! Between Dean and I we got some really good pictures of them jumping and some awesome video of their performance. Sea World did a fabulous job with the entire production between the whales, the music, and the background video it was enough to bring tears to my eyes and so much thankfulness in my heart for this amazing opportunity! Kenzie was just enthralled. She stared and smiled and cheered and never took her eyes off the whales!

After the show we practically ran to the other side of the park to go to the dolphin show... unfortunately by time we got there it was full. So we quickly made our way back to the other side where the Sea Lion show would be starting shortly. We were able to get good seats here as well, and enjoyed watching the Mime entertain before the show began. He was so funny and even Kenzie got a kick out of him. The sea lions were also very funny. The entire show was entertaining and hilarious.

We were able to enjoy some dolphin antics and touch the sting rays. Plus we got to see a ton of cool sea animals and fish in their exhibits. We were so excited about catching all this that we didn't even realize we missed the penguin exhibit and the polar bears! We were already gone before we realized we forgot to find those. We did make a trip to the beach this night but by time we got there it was already dark. Since we were already there though we did walk a few minutes in the dark... by flashlight of course!

We again dropped into bed this night and got up early again the next day. By this time I was getting pretty wore down and knew I wouldn't make it through too much more before falling apart.. or at least I felt like I was going to fall to pieces. This was Universal Studios day. When we picked up our tickets this day we were given a medical assistance pass... I didn't know we would be receiving this and it was such a blessing! This meant we didn't have to stand in line. We were able to get to the front of the line on all rides!

First up, Shrek 4D! None of us had ever been to a 3D or 4D movie and we were excited to see it. We were ushered to a back room to sit until it was time to enter the theater... I was so thankful for this as my feet felt like they were going to break into tiny pieces and my back was so sore! As we entered they gave us our glasses and ushered us to the front row! We had amazing seats. Kenzie loved it and didn't even act upset as she was sprayed with "snot" from Donkey's sneeze and splattered with "acid" as the dragon roared! She thought it was awesome! She laughed and screamed and kept those glasses on the whole time!

We walked around for a while after this enjoying the "city" they built then went to the attached park to see Dr. Seuss' land. That was super cool! We rode on another carousel and on a water ride called "One fish two fish red fish blue fish". Kenzie wanted to get wet so I kept steering into the water sprays. We went on a train ride through Dr. Seuss' park which was really neat. It let us see what was all in the park from above. There were a couple other parks that had play areas that Kenzie really enjoyed!

We were actually done at an early enough time this day to make it to a beach before sunset! We drove to Daytona Beach and had an hour to walk the shore line and play in the waves! We really enjoyed this relaxing time and Kenzie loved the waves and chasing the birds.

The next and final day was Disney again. By this point I could hardly walk so I had to break down and rent a wheel chair. I was happy that I made it this far without one though! And I was able to do much more with the help of a wheel chair so it was well worth it. We started at Epcot. The sweet lady who got us in took us to the meet and greet area so we could take pictures with Disney and friends. We stood in line for 40 minutes, but it was soooo worth it. Kenzie was so happy to see them and hugged and kissed each one! She was so adorable, and it made her trip as this was what she said she wanted to do since she found out we were going. We got some good pictures and I can't wait to scrapbook them! After Epcot we went to Animal Kingdom where we immediately got fast pass tickets to get on the safari. This was a cool experience to see the animals walking around while we drove by. We also went to the 3D movie "It's hard to be a bug" which was inside the "tree of life". If you haven't been to Disney this tree is so cool. It isn't real but looks real and is absolutely huge. You can see this tree as soon as you walk in the park and it is in the center of the park. They made such intricate designs on the trunk it was so gorgeous. We loved this movie too as we smelled the stink from a stink bug and was sprayed again and stung in the back by hornets! So fun and entertaining!

So if it wasn't clear at all... we loved this trip! We were exhausted but so happy! We came home with wonderful memories and hundreds of pictures taken! I can't wait to develop those pictures and make Kenzie a scrapbook of our trip. We are grateful to all those who helped make this trip possible, and so thankful for the time and ability to make this trip!

I am positive God was with me on this trip. I know many prayed and I could feel those prayers. Typically I am exhausted and can't do a whole lot during a day. I may be able to walk for an hour or so but then need to rest. On this trip I was able to walk and stay on my feet for the whole day for 4 days... although the last day I did need a wheel chair I still could tell that God was giving me the strength to not only make it through the days but enjoy every last bit of it. I did still have pain, but it was bearable. I find this to be a small miracle in and of itself!

Now the Dream is over and we are home and continuing with life as it was before, but with some wonderful new memories and a brief break from our new normal. I continued chemo the week after I got back and felt like I was going back to a job that I absolutely hate and dread, but it is what I have to do to fight this thing.

Thank you all who helped and who prayed! Thank you for being a part of our dream!

Thank you God for my Cancer...

I posted briefly about this in my facebook, but wanted to go in to more detail here on my blog. I have been marking my Bible, for myself, but also for my daughter. I want her to see what I found as very important. I have been color coding my markings as well so she can see the subject right away. (ie: green for children, pink for love, etc..)


While marking some important verses I came across a verse I have known for years, but on this day it struck me with its complete meaning and convicted me for not following it. Here is the section I am referring to:

I Thessalonians 5:16-18

16Rejoice evermore.

17Pray without ceasing.

18In everything give thanks: for this is the will of God in Christ Jesus concerning you.

Verse 18 struck me... "In EVERYTHING give thanks" 

it does not say in all good things give thanks, it says in EVERYTHING. There is no other meaning for this word but all... everything... all inclusive. Nothing is left out. We are to thank God for Everything. 

When we thank God it is for the good things He gives us. We are more then willing to thank Him for the money He provides, the blessings He gives, but what about all the rest? I was so convicted when I read this and immediately my cancer came to mind. I have been fighting this cancer for almost 3 years, and in all those years not once have I thanked God for my cancer. I have thanked Him for the good results of some tests, for providing the money needed to cover medical bills, for family and friends helping out and lending a hand... but I have never thanked Him for my cancer.

I bowed my head right then and asked God to forgive me for not being thankful in all things. Then I told Him thank you for giving me this cancer. The concept, I know, sounds out of place and not right, but He commands this for a reason. When I thanked Him, a peace settled on me that I have not had in all this time. I knew I was doing the right thing. It is a work in progress as I take back my thanks when I feel bad, and then I have to again give it back to God and thank Him again. It is work, we are not used to being thankful for bad things... I don't understand why God wants us to give thanks for even the bad things, but He didn't say give thanks for good things He said in EVERYTHING give thanks. In every situation, every area, every piece of us give thanks. 

I have also been reading a book that references to Paul and his thorn in the flesh and how Paul took pleasure in it. After asking God to take it away many times he changed his attitude and took pleasure in it. He chose to find the good in it. I have tried to look only on the blessings during this time, but that is a hard thing to do all the time. There are times I want to bemoan my state and continue begging for my life. Although it is okay for me to ask God to take away my cancer, I also have to thank Him for it and take pleasure in it. I have to accept that this is my thorn and I may never be rid of it. I have to give it to God and not dwell on the negative.

I also look at Jesus and how he begged God to take this cup from Him... He didn't want to have to suffer death and taking on the sins of all man... but He was willing to do what was God's will. This gives me a good picture of what I am supposed to do. It is okay for me to cry my heart out and beg God to take this away, but in the end I have to accept whatever His will is for my life.  

I thank God for my cancer... without it I would not have met some of the wonderful people I have had the privilege of meeting, nor been blessed by so many people and in so many ways. I would not have touched the lives of the many people I have come in contact with. I would not have learned the many hard and wonderful lessons God has taught me in this fight. My doctor's would not have been able to see the hand of God as He chose to make the cancer shrink when they thought I would be dying. (although they do not outright admit it was God I know they know what I think and can't help but think that gets to them somehow) My friends and family would not have been blessed with answers to prayers as God continually would answer a prayer for help here and a plea for health there... 

God knows everything... we can not understand His ways for He is not of this world.. but in faith we can accept what He requires of us and we can willingly chose to follow His will and be blessed beyond measure.

I am way past the time my doctor said I would have. According to her I would have been gone last year around this time, but God had different plans. I will continue to fight as He gives me strength. I want to be here to watch my baby grow, but I have to accept the fact that He may not have that in the plans for me. I pray I have many more years, but continue to have this horrible gut feeling that I don't have much time before the cancer takes over.. BUT I do not know God's will only He does. I will continue to put it into His hands and trust Him.

Thank you God for all your blessings, for the cancer you allowed me to have, for my family and friends who surround me with love and prayers. Thank you for all things you have done and will continue to do in my life and the life of my family. Thank you for everything!

Need help from those who lost a parent at a young age...

I am wanting help from anyone who lost a parent when they were young. I want to know if your parent did or left you anything that made growing up without them easier.

I have a book that I have written letters in for her. They mostly are for specific ages to help through puberty and give her advice on how to act... what is right and wrong. I also have a scrapbook of me and her and me together... and many of all of us as she grows up.

I have a hope chest that I have filled with things that are important to me or special in anyway that I want to pass down to her, and I have put notes on everything to tell her what it is and what it meant to me.

I have a couple little video clips of her and I together so she can see me with her and hopefully see how much I love her.

I started doing these things shortly after I was diagnosed, because I wanted to be sure she would "remember" me. I also figured that even if God heals me she would like to have these things some day anyway.

I still have both of my parents and really don't know what would mean most to someone who has lost a parent. I am hoping there are some people out there who have some ideas for me.... Thanks for any advice :)

Still Fighting the Fight

Well, it's that time again! I just had another PET scan and brain MRI on Tuesday. Wednesday I met with my doctors and got the results. I hadn't had an MRI since my radiosurgery in September. I was a little anxious to see if the surgery had done anything. The good news is my brain looked good. It appears the surgery did it's job. This doesn't mean more met's can't turn up later but for now it is good.

 The bad news, the last PET scan in November they could not see any cancer so we continued the same chemo as it appeared to be working. This scan shows one of the many tumors has reappeared. It is only one of them, but it came back while on chemo this time not even while taking a break from treatment. This is not a good thing. It shows that the cancer has become resistant to this chemo. Although I am upset over this and was hoping and praying for more time with no cancer being seen on the scans, I have to look at the big picture. I have been on this same chemo for a year now. That is actually amazing. My doctor told me when the cancer began spreading, and the goal went from killing the cancer to managing it, that chemo's will work for maybe 3 months or so and then the cancer becomes resistant so we will have to change chemo when that happens. Well, this chemo worked alot longer then that. Praise the Lord for giving me that extra time!

Since the cancer is becoming resistant we have to change chemo's. Unfortunately, I have had many different chemo's now and don't have many choices. My doctor would like to get me in a trial. They are all phase I trials, which means there isn't any proof that it will work, but they are coming at the cancer in a different way. We have been in the process of appealing the insurance company to cover a trial. In the past they have been clear that they will not cover anything to do with a trial or complications of a trial... so this has kept me out of them. Yesterday the insurance company told me I had to purchase Medicare and it is to be my primary insurance. Although it is going to cost us more, Medicare will cover 80% of trials. So if the insurance company will be willing to cover the other 20% I will probably be entering a trial.

In the meantime, we will be switching to another chemotherapy. I was not willing to hold off chemo to see if the insurance will work with us, because you never know how long that will take. I felt that if the cancer was growing while on chemo it could explode while off. 

Thank you all for your prayers and support during this never ending battle. It is hard for me to believe in a couple months it will be 3 years battling this obsessive disease. Part of the time I hate that I have to continually fight to be here, and the other part I am thanking God for giving me way longer than my doctor ever thought I would have. October of 2010 when the cancer began spreading my doctor felt I only had 6 months. It is now 2012 and praise the Lord I am here and only 1 tumor is big enough to see on the scans. 

I am still praying the Lord will miraculously heal me, but I also know that He may not choose to do that. Although I can not say I am ready to leave my loved ones, it is becoming more realistic each time the cancer grows. I try to not think about it, but there are times when it hits me that this time next year I may not be here. I know that should not make me sad, because I will be in Heaven with my loving Father.... but I am human and as I have never seen Heaven or been there to experience it, I can't picture it but can picture and feel what it would be like to have to leave those I love behind. I think I hurt more for them then I do for myself, and I am a control freak and hate the thought of not being here to raise my baby girl. But these are things I am trying to put in the Lord's hands, and hopefully when the time draws near I will be at peace and have anticipation to meet my Heavenly Father and see my Heavenly home to wait for the ones I love to join me.

Another Thanksgiving to be Thankful for

Sorry it has been a while since I have written anything.... I have been busy with appointments and of course the holiday! I love the Fall, and this year I have greatly enjoyed it for many different reasons. First of all, I am so thankful to be here to see this Fall. Last October my doctor felt I had 6 months to live. The Lord has graciously allowed me to be here to enjoy the best Fall I have seen in years! We had beautiful colors for several months! Last Fall the leaves had just started to change when a storm hit and all the leaves fell off the trees!

I enjoyed several walks with Mackenzie and was amazed at God's handiwork. We both collected leaves on each walk and used them to decorate with. We did projects with them and was able to enjoy them even longer.  Each Fall since being diagnosed I have had to deal with hard parts of treatment as well as bad PET results. This year was no different, but the Lord has given me the strength to make it through and still be able to enjoy nature's beauty.

As you all know I received a pretty bad PET result in September. I had 6 spots on my liver, a spot in the lymph node by my stomach, and a questionable spot on my T1 vertebrae. I went through 2 rounds of chemo, i.e. 6 weeks of treatment. Then we did another PET scan. in those 6 weeks God performed another miracle! This PET showed nothing in the liver or anywhere else, except the spot in my vertebrae. PrAiSe ThE LoRd!!!! My doctors were shocked and amazed!

My radiation oncologist put both PET scans up side by side for me to see. The difference was shocking. The first PET was completely brighter (By this I mean my entire torso was lit up with the spots they pointed out as cancer brighter then the rest) The new scan was entirely darker and no spots except my spine... the entire spine is lit up with the spot on the T1 vertebrae brighter. They are unsure if this is cancer or a bone marrow issue. However, I am now undergoing a chemo for the bone that works for cancer and the bone marrow. Hopefully this will help.

I am again amazed and humbled by the Lord's answer to prayer. He is our Great Physician, and only He knows where our path leads. I pray He allows this to continue, but even if He doesn't He has given me much more time then my doctors ever felt was possible and that alone requires my thanks!

Thanksgiving... it is not just a holiday. It is everywhere, all the time, in everything. Praise God from whom all blessings flow!

Conversations with God

I try to keep my thoughts in check when it comes to how I feel about things... I also try to never express them out loud. I feel the devil can use that as fire in his war against us. However, I have been burdened recently to share some of my thoughts and feelings during these times. I have this unrelenting feeling that just maybe it can help someone else who is going through a battle. It may be a physical battle or an emotional battle or like mine, both.

Recently I have been doing a Bible study on the book of Job with a friend. I have found so often that I share some of the same feelings Job does. Although I am not comparing my experiences to Job's, or the reason why he was suffering to mine either. Like Job, I have no idea why I am going through this, and like Job I have experienced one thing after another (although not as quickly as Job). 

I struggle with why God will not take this cancer away from me. I have not really questioned Him as to why me, but I have asked many times why now.. why this.. why won't it stop. I have, like Job, wondered why God ever created me if this was what He was going to put me through. I know God is good and is not vindictive, but I have so many times felt that for some reason He is picking on me. I know that sounds ridiculous and petty, but it is a feeling I have had often. For instance, my cancer was finally going away and I was able to take a break from chemo... FINALLY!!! I was off for a month and my hair was growing back a little, I was getting more energy, and I was having to run around less for doctor appointments. Life was somewhat normal. Then Dean starts having problems again at work. His boss decides to cut his pay by $1.50. I start getting pains in my stomach again and more dizziness. Then I find out my cancer has returned once again and is worse then it has ever been. So chemo again, which means more fatigue, more nausea, more hair loss. On top of that I have to have radiation surgery on my brain. Plus, my husband was thrown on second shift which left me responsible for Kenzie's care non-stop without help... The list goes on and on and on. 

Each time something new is added to the list it makes me feel like God is saying "oh wait, here take this and this..." Again, I know He doesn't work that way and I am sure the devil is responsible for it, but my mind keeps telling me God can stop it so why is He allowing all of this to happen and can't He ever just give me a break. I fight the feeling that God has something against me. Off and on I have wondered, as Job's friends did, if I have some sin I am being punished for. I have searched my heart and looked for any unconfessed sin and I have not found any. I am not trying to compare myself to Job. I can't imagine God telling Satan I am an upright and righteous women and giving him permission to test me. I am far from perfect and have done my fair share of sinning, but I do try to keep a short account of my sin. 

So, I don't think God is punishing me for sin. He has told us that if we ask Him to forgive us He does. So I know my sins have been forgiven. I am very thankful that I do not have any friends like Job who come to "comfort" him but just condemn him for some hidden sin when it was not the fact. I have no idea if any of them are thinking that, but I am glad no one has said it to my face!

This battle has been one thing after another for over 2 1/2 years. It is never ending, and I feel like I can never get a break. It is hard to separate my emotions with the facts I know about God. It is hard to picture God is perfect and... well... God, rather then with the imperfections we all have. I have to remind myself often that God is not vindictive. He does not choose favorites. He does not do things just to get a kick out of it and maybe have a good laugh at someone. These are things imperfect humans do not God. 

Emotions are hard to handle just as the unknown is hard to deal with. Job expressed his agony at losing everything but his wife and one servant. He talks about his pain at having his friends accuse him of sin when he knew he had none. He says he wishes he would never have been born. It would have been easier on him and his loved ones if he had never been born.. this I understand. If I have never been born I would never have loved or been loved. I would not have experienced this pain and the pain of knowing I will be leaving my loved ones. Nor would the ones I love have had to deal with all the downs of this illness in the end resulting in the pain of loss. 

Throughout all of Job's struggle, he never knew why he was going through it. He didn't know that God was allowing Satan to test him because He knew he was a good, upright, righteous man. Satan was trying to prove that if Job wasn't blessed in his life but made to suffer he would turn his back on God. Although job never knew this, he also never turned his back on God! He expressed his pain and the emotions he went through, but he remained good and upright and stood with God! I pray I too can stay standing with God and not allow my hurt and anger to take over. I wish I knew why I have to go through this... I wish God would see fit to make it stop... He may never let me know why... He will make it stop though. Whether He decides to perform a miracle and take it away, or whether He takes me to Heaven. It will stop, and when I get to Heaven I will finally know the why.

If you are struggling in a battle of your own just remember to lean on God. Trust in Him even when your mind tells you He has betrayed you and He is the reason you are in the battle. Remember it is not God who causes these things, but Satan who walks about seeking whom he may devour. Once sin entered into this world suffering began. We will all suffer in someway or another in our lives, but if we look around us we will also see the blessings. 

God has blessed me in so many ways, and many of these blessings would never have been seen in my life if I had not gone through all of this. In all things I can find something to thank God for... this is what I have to keep my mind dwelling on. This is what keeps me going and keeps me sane. Finding the blessings! Look for your blessings. Find things to praise the Lord for... this helps take away the pain of our suffering and loss. Stay strong, keep the faith, fight for what is right, and never forsake God.

And the Treatments go on.. and on.. and on...

After meeting with the Radiation oncologist and discussing the pro's and con's and possible side effects of Stereotactic Radiation surgery, we decided to go ahead with it... I really didn't have much option. I could allow it to continue to grow, have the radiation surgery, or whole brain radiation... Kind of was a no brainer.

Stereotactic Radiation surgery is radiation focused on a specific point. The goal is to eradicate the tumor while not affecting very much of the healthy brain cells. My husband and I met with the radiation oncologist Monday and received a call Tuesday that they wanted to do the procedure Wednesday... So yesterday morning we made it to the hospital at 7am. By 8am I was being taken down to have the halo attached. I was extremely nervous about having this screwed into my head. It wasn't as bad as I thought it would be. They numbed my head in 4 different areas. They then hand screwed in the halo. Once they got the screws in it caused a ton of pressure, but after a while the pressure went down and it was just a small ache.

After they got the halo on they then attached the halo (and me of course) to a CAT scan machine and did a scan of my brain. I then was taken back to my room to sit and wait for them to get the plan made. The only bad part about the waiting was still having the halo attached to my head. It did not allow me to rest my head or neck. I had to hold it up all day. My shoulders and neck were not pleased with this.... 2:30 they were done with the plan and took me back down to do the procedure.

For the procedure they attached the halo to the table so I could not move at all. Then they used 5 beams at different angles to perform the surgery. This only took 20 minutes. They then removed the halo... which actually hurt worse then going in. The pressure in my head and sinuses was horrible! Then as it started to go down the "holes" started to hurt and my stomach got so upset. Fortunately this did not last all night.

So we were at the hospital at 7 am and left at 4pm... amazing considering all they had to do in the day.
There aren't supposed to be any long term side effects... so that is good. At this point I just have pain where the screws were in, a sore throat, sinus pressure, and fatigue. Hopefully this will be gone in a couple days.

I start chemotherapy Thursday, October 6th. I will be going once a week, 2 weeks on 1 week off. The radiation oncologists plans for this procedure to have taken care of the tumor in the brain, and now the chemo will be to control the rest of the cancer. My prayer once again is to stop it all together... Thank you all for your prayers and encouragement during all of this.

What runs through my mind....

With once again facing the possible beginning of the end for me, there is a lot of things going through my mind. Most of the time I try not to think about it, because it is too painful. When I received the call that there was a tumor in my brain and 6 spots in my liver on top of the lymph node near my stomach and the two questionable spots - one on my left, 2nd rib and the other on my T1 vertebrae. I broke down at this point, and Kenzie was in the room. She was so sweet. She gave me a kleenex, hugged me, and told me it's okay don't cry... of course that made me cry more.

I learned a valuable lesson that day... I heard Kenzie get up from her nap... then I heard her run back to her room. I went upstairs and she was in her bed completely under the blankets. I flipped the blankets back and asked her if she wanted to go for a walk. She pulled the blankets back over her head and told me she didn't want to get up... then she started crying. It took me a while to calm her down so we could go on a walk, but the rest of the day she was moody. Lesson? Don't cry in front of her. She feels so much and it upset her. She may not understand what is happening but she knows something is happening and she knows it is not good.

Also, during this time I've had a few people try to encourage me and make sure I don't turn my back on or become angry with God. I have to say turning my back on Him never came to my mind.. One of the other things mentioned to me was how people in similar situations have a hard time believing that God is good... again this never crossed my mind. My faith in God is set. I will not turn my back on Him. I also know that God is good, but He does not allow only good to come to us. When sin entered into the world so did evil, and no matter what we do or who we are we will experience both good and evil. We will have blessings and trials. I have experienced anger and frustration. I have put all my faith and hope in my prayers for healing and I believed He would heal me... but it just gets worse. Then my hopes are dashed and honestly that is worse then expecting the worst and getting it.

What I don't understand is why God, who is all powerful, is not choosing to perform a miracle and stop the cancer. For over 2 years I have begged and pleaded for God to heal me, to give me more time. I guess He has technically done a little of both. He stopped the cancer for a couple of months, and I'm still here although my doctor felt my time would have ran out months ago. But that was not my prayer or what I was believing He would do. It is very hard to keep having faith in something when the results are a continuous downward spiral. I have had faith as the women who touched Jesus' cloak.. that if I believed He would heal me. Faith the grain of a mustard seed can move mountains.. why can't it heal me.

I know we do not always get what we want. I know that we can not control our time on this earth... but we are told to pray believing and have faith because God can do anything. When do we accept what is going to happen and stop praying for a miracle? When are we supposed to come to terms with what God has for us and stop asking Him to change it? I guess I don't understand this part, and am not sure what I am supposed to do now.

The hardest part for me is knowing I will be leaving Mackenzie behind. She's just a baby. She will not remember me. I won't be here to take care of her or help her. I have to give all control over to those I am leaving behind. Not having control over what happens to her is what kills me. I want a plan. I want to make sure Dean will be okay and will be able to take care of our baby. I want her to remember me. To know that although I wasn't allowed to stay here with her I love her and always will love her. I want to know that she will be loved and cared for as I would have done.

When you prepare and think about your future you do not think or prepare for death...  it just doesn't seem natural. Of course, we are to live our lives in such a way that we are laying up treasures in Heaven which in a sense is preparing for death, but it just doesn't seem the same to me.

For those of you who do not know what to say to me... it is okay. I don't know what to say either! I appreciate those people who are sensitive to Mackenzie's presence. I know some people feel I should talk to someone who has the same cancer as me, and honestly at the beginning I wanted that. Now, there really aren't anything I can ask them that I don't already know. Also, I am much better communicating my feelings via email then on the phone. I don't want to be emotional all the time and voicing my feelings makes me want to cry. And I hate talking on the phone! :)

So, what's running through my mind? questions only God can answer... thoughts of a future I was planning but only God knows the number of our days... trying to control the future, but God is the only all powerful one. Confusion, chaos, frustration, sadness, pain... this is what my mind has become. But as has happened before, I am sure God will give me peace and the ability to make it through this battle too.

The Never Ending Battle

I have been experiencing more dizziness, growing fatigue, and nausea. I held off telling my oncologist about this because it was around Kenzie's birthday and I didn't want to once again ruin it!


She ordered a PET and MRI right away. I had both yesterday. The PET showed 6 tumors in my liver, a lymph node by my stomach, a spot on my chest in a rib, and in my T1 vertebra. The one on my chest they believe is probably radiation, dead tissue, and the injury showing up. They are not sure if the vertebra is cancer or not....


My MRI showed the same spot in my brain. They feel it is growing and taking the shape of cancer. They are very concerned it is the cancer and want to do radio-surgery. This is where they would screw a halo into my head and in an all day ordeal set me up to do a one time focal point radiation on the spot.


The spot in my brain is in the front left lobe. My oncologist feels it is near my motor cortex, but my radiation oncologist feels it is near the emotional area... confusing to me. My oncologist also felt it is not in the right area to cause my continued symptoms... I am not sure what to think.


I have a meeting with the radiation oncologist Monday to discuss it and the pros and cons and side effects. I am not sure how I feel about having my brain radiated but don't think I have a choice.


**I know many of you are thinking... How am I doing.. What am I feeling... It is hard to answer when people ask because I don't even really know and thinking about it makes me cry.


So I will give my best attempt here...


I tried not to cry while getting part of this news in the doctors office yesterday but in the end couldn't help it. My parents were there so dad held me while I cried. Then my oncologist with tears in her eyes told me how sorry she is and how she hates to give me this news.. Then she gave me a hug as well. God has given me a doctor who has connected with me.. Praise the Lord.


When I got home Kenzie was getting ready for bed. I read her a story kissed her and came downstairs to talk to my mother-in-law. After she left I crawled into bed with my baby girl and held her for 2 hours. (Dean is working second shift now so he wasn't home) I prayed and I cried and I begged God for more time.I begged him again as I have over and over to PLEASE provide a miracle and let me be here for my baby. 


The thoughts that have run through my head are: why won't God stop this? Why can't I ever get a break? Will I be here for Kenzie's 4th birthday? How will Kenzie handle losing her mother and growing up without her mom? How will Dean be able to work and raise Kenzie on his own? 


I know God can heal me... I don't know why He won't choose to. I know God loves me, I just wish He'd show it more clearly. I know He has the power to cure me, but why won't He.


I know there is a reason for everything. For me it would be so much easier to deal with if I knew that reason. However, I don't know the reason and will have to continue to trust in God and His ability to comfort me and take away my fear and frustration.


I am studying Job right now and find I can totally understand how he feels. I understand cursing the day I was born. If I hadn't been born I would not have built relationships, loved, invested my life in others... I would not be feeling the pain of leaving them nor them me. Job didn't know he was being tested by Satan because God saw him as just and upright, but he remained steadfast in his devotion to God. I highly doubt God sees me as He saw Job and allowed Satan the power to test him because of it.. BUT I can keep my integrity and do what is right amongst pain and fear.


I have felt anger, frustration, hopelessness, exhaustion... I feel like this is a never ending battle and I just want it to stop, but I need to continue to fight. And as I have done for over 2 years now as this settles in I will put it in the back of my mind and not dwell on it. Of course it will be there but I will ignore it and continue on.


p.s.


I try not to be emotional in front of Kenzie but after my doctor called with the MRI results I couldn't help it. I tried to just play with her an not think about it but looking at her hurt. I started to cry and she went and got me a kleenex. Told me to blow my nose, rubbed my cheek, gave me a kiss and told me not try cry that she love me. Then she said she was sad too.... God knows what I need and He provides it.

The Internal Battle

Many times through these last couple years I have heard "You look great", "You'd never know you have cancer", etc... While these things are great to hear.. and I am glad I don't look like death walking. The only problem is since I don't look like I am sick people tend to forget that I am fighting for my life. Even my husband will act like I should be able to do more then I am doing, and has to be reminded that I have terminal cancer and am still receiving treatment plus still have effects from the radiation.

In the past couple months I have talked to a few people who have mentioned to me that they know of someone else with cancer and how they just look so good, and some of these people have realized that looks can be deceiving. I felt I should touch on this subject and give you all the perspective of the "sick" person. I am hoping to help others understand more of what it is like so you can better help the ones you know who are battling an illness.

From the very beginning I have looked perfectly healthy. Yes, I lost my hair (twice now), but besides being bald (and losing my breasts) I looked fine. Yet I was receiving chemotherapy that made me very sick. I have had times of nausea, extreme fatigue, dizziness, muscle pain, numbness and tingling in hands and feet, open sores on my hands and feet, blurred vision... and that was just some of the effects of the chemo.

Then we move onto the surgery. I couldn't lift or hold my child for weeks. I had these tubes and drains hangin out of me. I slept in a recliner for over a month with ice packs on me. After this I went into radiation treatment. This caused additional fatigue and at the end open wounds and burns. I also have lymphedema that I still fight with all the time. My arm always hurts and swells easily which causes additional pain. The first radiation exasterbated this and caused scarring on the chest wall which caused muscle spasms.

I continued on more chemotherapy then again had more radiation. All of this has piled on more fatigue and more scarring. I am now to the point that I do not have very much range of motion in my left arm. The pectoral muscle is a steel rod (as my physical therapist says). The skin and muscle have adhered itself to my ribs. My PT and I are in the process of trying to break the scarring free to allow more movement and get the fluid out of the area. This fluid build up also causes alot of pain.

The point I am trying to make is this, Looks can be Deceiving. Although I "look" perfectly healthy. I am still battling cancer, chemotherapy and radiation effects, and emotions. I do not spend time complaining about these things to other people, because I do not want to always be complaining. I do not want people to only hear me talk about my problems. When people ask me how I am doing I say "pretty good" or "not too bad". I have 2 reasons for this. Reason 1: No one wants to hear complaining all the time. Reason 2: it is hard to tell if someone is asking me in general or really wants to know. If you want to really know what is going on ask more specific questions. This will tell them you really want to know how they are feeling and if they need anything.

Your friends or family who are fighting cancer or some other illness still need you. Do not take it for granted that because they look good they are good. Also remember, especially for those who have been battling it for a long time, they probably will not ask you for help. You will need to offer help. Don't just say "hey if you need anything let me know" If they are anything like me they won't.

WHY? People have helped you often and you start to feel like you are bothering people. You feel like you are a burden not a friend. When the battle goes on and on forever you feel like the only time you see your friends or family is when they have to help you. You don't want people to feel like you are using them, and you start to feel bad needing help although you can not help it.

It takes alot of help... I have to find a driver and a babysitter each time I go to the hospital for treatment, and a babysitter twice a week for physical therapy. I have to ask people to help me with these things. Other things, day to day things, I have been able to do on my own. This I am thankful for. Although I have had some times when it would have been easier to have help with Kenzie, but if I can do it myself I will not ask someone.. even if it would be easier... I have asked people for help enough I feel bad asking for more.

Also, remember your friend may not know if or when you are available to help, or even what you are willing to do. This has been one of my problems. I do not know who else to ask or if anyone else is even available so I have to ask the same people all the time.

Make yourself easily available and accessable. If you want to help, let your friend know you do and that you are serious about helping. If you have a free day and want to help out or visit call them up see if they will be home and want company. Sometimes it is just nice to have someone to visit with and break up the monotony of the days.

Also, remember each person is different and may need different things. Maybe your friend would just appreciate a phone call... I for one am not one of those types of people. I would much rather talk in person. I really don't like talking on the phone.. You probably know best what your friend would enjoy, but you can always ask!

Most importantly, no matter how good your friend looks. Always pray for them!! They need it physically and emotionally. This battle is fought on so many different levels, and everyone can offer some sort of help. Prayers are definitely an easy way to help the ones you love. It is something you can do at anytime, and will always help.

Waiting for the unknown

I have never been very good at waiting... I am the type of person who likes to give and open gifts early!  I mean really... when you get a gift for someone aren't you just so excited about giving it to them that you want to give it to them now! And I know there has to be a rule about gifts coming in the mail. When it comes in the mail you don't have to wait until the day, you get to open it right away!

I say all that simply to show slight proof of my lack of waiting skills. I don't like it in anything. I want to know what is going on right now, not tomorrow. I get anxious waiting to find out information in regards to my health.

Needless to say, during this entire battle it has been non-stop waiting. Waiting and worrying for the unknown. Worst of all it seems to never end. Just when I am given some good news, I am also given some "this may be bad, but we don't know" news with it. Talk about nerve racking! I can never celebrate the good news, because attached to it is a dark cloud of fear of the unknown.

I was positive after my first round of chemo and surgery that I had beat this thing... but not even 2 weeks later there was an unknown rash on my chest... turned out to be cancer, but the radiation was supposed to take care of it and appeared to. At that point I again thought, "I am done, we got it". I was on oral chemo for 6 months after that, and 2 months after I stopped chemo another rash appeared... the cancer again was back.

By this point I had given up thinking I was done. I knew I wasn't and my doctor made sure I knew that there was no chance of beating it. Plus the disappointment in having my hopes dashed nonstop was too much. I'd rather think on the worse side and be given good news then think it's all good and be given bad news.

I again had radiation to stop it, then began chemo once again. Through out this treatment I was preparing for the end. I began writing letters to Kenzie, and putting away things I wanted her to have. I even went through my closet and got rid of things I thought I'd never wear again. My doctor had made it quite clear that at stage IV this cancer was going to take my life, and with the aggressive nature of my cancer she only gave me 6 months.

Throughout these months my cancer continued to spread and grow although I was receiving treatment. It was during this that a friend told me about the clinic in GA. In talking to the doctor there I actually got a dash of hope. Hope I was afraid to even grasp on to, but wanted so badly to have. It was this treatment that finally turned my cancer around.

Finally my scans showed the cancer to be shrinking! I was so excited! The next scan showed the cancer to be gone in my liver and not growing in the other areas... and of course there was a but... BUT the redness on my chest had showed in the scan as lighting up brighter and may be the cancer...

So again we wait and re-scan. The next scan it lights up less so it probably isn't cancer, but my doctor makes sure I know she feels it is only a short time before it begins to grow again. Then some of the symptoms I was experiencing makes my doctor worry it may be in the brain. So another scan and the answer "there is a questionable area in the brain but we can't say for sure if it is or isn't cancer"! So again we wait... and wait... then rescan. The results "the spot is still there. We can't say if it is or isn't cancer, but if it is it's not growing so that's good" Again we wait. During this time I am not receiving any chemo so the cancer could very well be spreading in other organs and we wouldn't even know, because my doctor wants to wait 3 months before we scan!

So I have a questionable area in my brain that may be cancer, but it's not growing so the treatment isn't worth giving until it does grow. I am getting a much needed break from the chemo, but we won't know for 3 months if that break cost us and the cancer was growing unbeknownts to us. Although my doctor does continually tell me that she feels it will grow within a couple months whether on chemo or not. So in other words in her opinion it doesn't matter what we do I have no hope.

What my doctor doesn't know, is that my God can do anything. Yes, I hate the unknown and I hate waiting, but I do have hope. Although I hate getting my hopes up and having them dashed, I do believe that God can take this cancer from me or give me more time if He so chooses. Look what He has already done! According to my doctor I should be dead by now, but he took the untraditional treatment and stopped the cancer from growing and reversed some of it! He did what she didn't think was possible!

If I didn't have God to lean on during this "wait and see time" I think I would lose my mind! I don't know how someone who doesn't have faith in God can make it through cancer. He is my strength and hope. He holds me up when I can't go on. He also gives me peace in the knowledge of life after death. I know that if I don't win this battle it is okay. Although I don't want to leave my earthly family, I know that in death I get to be with Christ. He has prepared a home for me! Without that knowledge I would have no hope, no peace.

However, even in death that is still waiting for the unknown... death is unknown to me too. I have not experienced it and don't know what to expect, so that too gives me a little anxiety. But, I know who I have believed in and am persuaded that he is able to keep that which I've commited to unto Him against that day.