A difficult post to write

After talking with an out of town friend and Steve this weekend I feel I need to be more clear about mom and her diagnosis. Apparently, I have not painted an easily interpreted picture. When I first started blogging, mom would occasionally ask to see the blog and read everything. Therefore, I was guarded in what I wrote about her prognosis and details of the tumor. We talked to her about everything the doctors said and reminded her several times, but I did not want her to read it on the site and think we were trying to hide information from her. She went through a period of distrust (as she still does occasionally). I think it stemmed from the forgetfulness. She was surprised each time we told her the prognosis. Often she would comment about how she seemed to be doing better than the rest of us. I think this was because she forgot, but it made her suspicious as well.

Mom's tumor is a glioblastoma multiform grade 4. This is a very aggressive type of cancer and is about worst type a person can get. The only breakthrough in treatment in the last 30 years is the Temodar (chemo pill). Even when a tumor is completly removed it only improves the chance of long term survival. Long term survival of a glioblastoma multiform (GBM) is considered to be two years. Most people with GBMs only live 10-12 months after diagnosis even with resection (surgery), radiation, and chemo.

I read a cancer message board on a fairly regular basis. They have a whole section on brain tumors and most of the people posting are family members of a GBM patient. One lady wrote that right before her loved one (I believe her mother) was diagnosed, they were praying it was not going to be breast cancer or something more commonly known. She said we just didn't understand at how much worse this type of cancer was.

Now, given that most people think what ever is happening to them is the worst possible thing, I hesitate to even mention this. But I must say, I agree with her. I have watched other people come in and out of CARTI for treatments and the doctor's office for check-ups. If you were to run into most of these people on the street, you might not even know anything was wrong with them. They walk in by themselves, check themselves in walk back to the treatment room and afterward, many will return to work. This is not to say they don't have problems or things are not serious and scary for them, but they can function mentally. They have their cognitive skill intact. Mom would not be able to get from point A to point B. She gets in the shower and does not even remember how to shower some days. I stand on the other side of the curtain and pass her everything she needs. Other days she does much better and can reason out what to do next or what she has already done. This tumor and it's treatment took mom almost immediately. She has not been alone in over a month.

I guess I have hesitated to write this because I think it is important to stay positive. I think I also struggle with the fine line between faith and reality. I have no doubt that God is able, what I do struggle with is will God be willing. My prayer has been for God to heal mom completely and allow her to live for at least 30 more years as a healthy, happy, active person. Many times in the bible Jesus asked what the person in need wanted before He healed them. I fully believe He knew what their needs and desires were, but wanted them to ask. By asking we acknowledge God is in control and we are human and incapable of changing the situation. We also become specific when we have to make a request. And then we simply communicate with God when we talk with Him. So, as a nurse, I understand, maybe all too well, what a diagnosis of GBM means and what that path looks like, but as a Christian, I know God can do what He desires.

I am also a fairly private person who tries to keep my problems, my problems. I don't like to burden other people with my needs or moods. But I will try to let you all know what is going on and how I am feeling on a more personal level. I think this will help you better know how things are with mom. This is about her, not me. I feel privileged to be able to care for her. She has been such a Godly mother all my life. I remember well, the hours she spent on her knees for her family and friends, talking with her beloved God. Leaning on His strength through so many difficult times. She was strong and faithful, now I just hope I learned from my teacher. This is the biggest test yet and I so do not want to fail. I feel time is short and so precious.

The last few days I have been angry. Angry at the world and nothing in particular. My poor sister and husband got the worst end of it. They both handled me beautifully and with such grace. I thank them both for their faithfulness and love. Today, I am sad and scared. My kids are both very cranky and upset. They ask to go home a lot and get frustrated with Mor-Mor (what they call mom). She doesn't know things they know. They don't understand why she can't remember Prissy (mom's little dog) had to be euthanized several months ago and why she keeps looking for her. They don't understand why she changes the channel while they are watching a show. It is a difficult thing to balance. They are so young and so much is being asked of them. On a whole, I think they are coping like little champs.

So, I hope that this did not surprise anyone. I just want to make sure that you all understand the situation as fully as possible. Now that we are several weeks out from surgery, I think many people are expecting mom to get back to normal. This may not happen for some time and it may not ever happen. We will plan for the worst and expect the best. I simply do not know what else to do. It is in God's hands, and I thank each of you for your prayers. We can tell she is being lifted to God daily.