Yesterday I had my appointment with my oncologist and lab work.  I had my lab work done 30 minutes before my appointment so my oncologist had my results when she saw me which was nice so she could discuss them with me.  She said that my results all look good and stable.  She also explained some of the tests and the results that I had done since I had seen her last.   One of the tests was done on my chromosomes where they looked at two specific ones to see it there had been any change to them which would cause me to have problems with my immunity to fight off sickness--those came back showing I had no change so have no problem with my immunity ability.  She said that according to my test results inserted into some data system that predicts how the disease progresses, that I have a very slow progressing CLL and that I have probably had it for several years but it just didn’t show up in my lab work.  She also told me that my life expectancy is just like a “normal” person with no CLL which was great news!   This is an answer to prayer as I have been asking God to heal me if it is in his will or if not, to not let my disease progress to the point where I need treatment.  Who knows, maybe later he will heal me--if not, then I am glad that it isn’t progressing.   Since my blood tests showed that my levels are pretty stable, she said I don’t need to come back for 6 months unless I start having some sort of problem.

I asked her about the aspartame issue and she said that there is no proof that it causes CLL and even showed me an article from 2014 that said that it doesn’t. We did talk about chemicals and additives in our food and she mentioned that she doesn’t heat any food in the microwave in plastic because of the chance that some of the chemicals in the plastic could “leech” into the food when heated.  I know that leaving plastic water bottles in the heat had been mentioned in the news before for the same reason.  I guess I will stop heating stuff in the microwave in the plastic container.  I mentioned that tv dinners are in plastic and she said that maybe I should decrease how many of them I eat.  I usually eat tv dinners for lunch and dinner because it is just easier since it is just me eating that meal--the boys are pretty hard to figure out what they want for lunch and in the evening I am here alone with my husband working.  I am thinking about trying to come up with my own “homemade” tv dinners.  She said that is important to eat healthy and stay active--these will help me to feel better and be healthy.  I told her I get plenty of exercise chasing two little 5 year old boys every day!  My daughter told her I also had gotten chickens that I chase too.  

I haven't written anything here for a while.  I am feeling fine and don't have any symptoms still.  This post is mainly to "voice" how I feel about people and their opinions about my CLL.

I guess people feel like they have to figure out something to blame in order to explain why things happen.  I am sure that is human nature to want to know why, but that doesn't make a person feel any better.  I am sure nobody means to make me feel bad.

This week, there was a posting on facebook saying that drinking diet cherry zero with aspartame causes CLL.  So of course, since I drink that I guess people think I gave myself CLL.  I tried to deal with the subject when it was brought up to me, explaining that there is no way we can eat or drink anything that it doesn't have some chemical in it.  I also told my mother that "splenda" the other sweetener will probably be reported to cause health problems too in the future.  I told her that if you gave people the huge doses of things like they do test rats then I could see there would be a cause for concern.  I told her that I have an appointment with my oncologist on the 9th and I would ask her about this "report".  I thought the subject had been taken care of.  I talked with my sister about my conversation with our mother and told her what I had said.  I guess later, my mother told her that she had "gotten into trouble with me".  I was surprised to hear that she felt that way, all I did was explain to her what I had been told and how I felt.

After my conversation with my mother I went online and found an article written by the American Cancer Society that addressed the subject of aspartame and leukemia.  This article states that there is no proof that aspartame causes leukemia.  I copied that article and posted it on facebook but didn't address it to my mother--just said "I have had several people mention to me that they saw on facebook that aspartame causes leukemia.  I don't give much credence to most of what I read on facebook as "fact".  Thought this might clear things up a little."  Nobody "liked" or commented on my post.

Today, my mother posts that after she read on facebook that aspartame causes CLL she went to the store and bought Diet Coke sweetened with splenda and that it tastes good.  I felt like her post was directed straight at me.

People don't realize what it is like to live with a disease that you can't do anything about.  I didn't do anything to cause this and there isn't anything I can do to stop it.  Trying to place the blame on what caused it doesn't help me at all!  I just need people to love me and pray for me.  I know that I am powerless with this disease and am trusting God to do what is best for me and in his will.  I know he can heal me of the disease if it is his will---I just have to trust him and not doubt him.  I just  have to live my life every day and not think about or worry about my CLL---I can't let it control my life.

Tomorrow I go for another test to be ran on my blood.  My doctor had submitted for authorization several tests and my insurance company had not approved all of them when I was in to see her on the 5th.  I got a call last Thursday, the 12th, that they had gotten an approval for another test but that it had to be done by March 1st.  I just have to go to the lab and have blood drawn and then I can leave.

I talked with my son tonight and realized that he has been worried about me since he heard I had CLL.  He said he doesn’t understand why they don’t treat my disease.  He said he was depressed when he found out about me having leukemia.  I explained to him that they don’t treat it as long as my blood counts are normal and I don’t have any symptoms--that early treatment doesn’t really help and that the doctor doesn’t want me to become immune to a drug that they might need to treat me later. I also told him that my doctor was closely monitoring me and that she is a good doctor--the vice president of oncology at Mercy hospital and that she is an oncologist/hematologist.  I tried to make him feel better and told him that I feel fine and that I don’t really think about it.  I told him that it isn’t life threatening and that I am trusting God to take care of me.  My numbers for my lymphocyte absolute have come down from December and that they may continue to come down and that God may heal me of this disease.  I hope that he feels better after our conversation--I don’t want him to worry about me.

My doctor called today to talk with me about my test results.  She said based on the results, she would say that my CLL is slow progressing.  My totals are all looking good and I still have no symptoms.  I go back again in March where I will again have blood tests and they will continue to monitor my disease.  I am continuing to pray that God will heal me of this disease if it is His will but if He wants to just keep it to where it doesn’t progress to where I need treatment then that is fine with me.  I know God is taking care of me.

Not much to write.  I had my visit to my oncologist on the 5th to discuss the results from my CT scan and blood work.  Everything is still about the same-- no symptoms of the disease.  She told me to come back in 10 weeks for my next appointment and lab work.  I did have blood drawn this time--she wanted to do more testing but could not get the insurance to approve all the tests she wanted so is running the ones they authorized.  Her plan is to request the additional test after these showing a need for further tests.  Hopefully the insurance company will authorize those tests as well, or I could pay for those out of pocket.  She said that we will proceed as normal even if they don’t authorize the tests-the tests would give her more information as to how the disease could be expected to progress.  I am praying that God will either heal me of this disease if it is His will, or that He will keep the disease from progressing to where I will need treatment.  I know it is all in God’s hands and just have to trust Him to take care of me.

My parents went with me to the doctor this time.  My daughter had an appointment with her doctor and my husband could not get off work to take me.  It was good that my parents were able to take me and sit in to hear what the doctor had to say.  They were able to ask questions which hopefully helped to set their minds at ease.

I know that I have alot of people praying for me--people I don't even know and I am very grateful for all their prayers.  I really don't know how people survive the different things we all must face in life without the Lord!

Well, today I got a call from my oncologist.  My CT scan was good-no problems with my organs.  Everything was normal except for the lymph nodes in my arm pit.  My blood test results came back and they show that my lymphocytes show to be 5200 so that means I have CLL and not SLL like she had previously suspected.  Any count over 5000 is diagnosed as CLL.  Since I have CLL, and not SLL they will not do radiation on the lymph nodes since they are enlarged as a result of the leukemia.

All my other blood counts are normal, I don’t have anemia, my spleen and liver are not enlarged, and I don’t have any symptoms so she thinks I am in the early stages.  I will go in to see her on January 5th to talk more with her and have blood drawn so they can do more extensive testing on my blood to get more information about my disease.

I am coming to terms with this information--I have been on such a roller coaster the past month.  I have been very close to crying this evening.  First I am told I have CLL, then told I don’t’ have CLL but have SLL, and now I am diagnosed with CLL. I had hoped that I would have been able to have the radiation on the lymph nodes and be done and not have to worry about this anymore. It scares me--I don’t know what to expect or how long my life will be.  I want to live and see my grandchildren grow up, see my children doing well, and I don’t want to leave my husband and the rest of my family. I feel guilty/bad about “getting sick” and causing strain on my family.  I am not afraid of eternity--I am ready, but I am not in a hurry to die.

 I know God is in control and this is not a surprise to him.  I know that he loves me and will take care of me.  I know all these truths but still sometimes it becomes overwhelming to me.  All I can do is pray and trust God to take care of me.  It’s not that I have some “super” faith, I can’t do anything about this disease and know that I am helpless to do anything so I have to lean on God for comfort and peace.  Sometimes Satan puts ideas and doubt in my mind and I just have to force myself to not think about it and pray to God for peace.

We had a great Christmas yesterday.  In the morning we had Christmas with our children and grandchildren.  They came over at 9 am and we had breakfast and then opened presents.  Then at 1 pm we went over to my parent’s house and had lunch.  All of my brothers and sisters were there but we were missing several people (our daughter and her family, my sister's husband,  and my both of brother's kids).  It was great for all my siblings to be there all at once--usually someone is missing at family gatherings.  I know my parents really enjoyed having us all together.  My dad wasn’t feeling real good but I know he still was glad to have us all together.  Dad had a tooth pulled just the day before and also is having trouble with his back hurting him so he had to lay down several times.  I really enjoyed getting to spend time with my family---it is important to spend time with the ones you love.

In the morning I have my CT scan at 10 am.  I am praying that they don’t find anything except for the 3 enlarged lymph nodes in my left armpit.  I try not to think about my problem and to not get too sad about it.  Sometimes I catch  myself wondering if I will have a future to plan for and I know that is just Satan bothering me and trying to make me doubt God’s love and care for me.  I know I have a lot of people praying for me and I know God hears and answers prayers so I don’t need to worry.