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.