A loooong time....What's Been Going on

It's been a really long time since I really shared a lot on my blog. I created this blog for my kids. I have not mentioned my situation on here yet so let me catch you up. On September 30, 2011 a tumor was found in my stomach. I was told it was more than likely benign and the doctor even wrote it on the paper. A week later, the results of my CT scan showed that it was larger and in my lymph nodes which led the doctor to believe it was probably cancer. He wanted me to have it removed right away at first because it was near hemorrhaging but after the CT results he felt it would be best to have surgery to biopsy then chemo then surgery to remove. I Prayed and others Prayed. God sent me to Vanderbilt Medical Center. He worked it out to a T. I had two doctors working on it and each got me in with two doctors who worked together on it. I had a special scope and another biopsy done a week after the CT. Then I went back on a Wednesday for the results from a surgical oncologist. I had been told that my cancer could be one of three types GIST , Lymphoma, or Carcinoma. The best type to have was the GIST and that's what I had. They wanted to try to shrink it with an oral chemotherapy pill called Gleevec. I agreed.

About a month later (November) I was hurting quite a bit so the doctor felt it would be best to scan me. The scans came back great an it even looked a few millimeters smaller. I continued on with my chemo and in January 2012, I went back for more scans. I was pretty optimistic. Imagine my surprise when the doctor not only said it hadn't shrunk but also said it had grown by 30%. I was devastated. I didn't know what to say or do. I kept asking if it could be where it swells up to die (we had been told this would happen) and she said no that no dead spots were visible. I was amazed. We asked about surgery to just get it out and she said that it was inoperable.  She left the room and said that the surgeon said he would have to see another scan in order to see if surgery was even possible.  They scheduled me to again meet with him the following week.  She acted defeated, gave me more pain medication, changed my chemo and sent me on my way.

I still had a peace I had had the whole time but I was scared. I kept looking at my kids thinking about how badly I didn't want to leave them.

After much thought and Prayer, my aunts' school staff found a doctoring Boston, MA who specializes in this type of cancer. It is a rare type so we were blessed to find him. My husband, aunt, and I flew to Boston (my first time on a plane) and met with him.  He said that the information from the radiologist at Vandy stated that the tumor was stable.  We were shocked.  He said that for him to give misinformation would be like him stating sue me if I am wrong.  So, since I was told something different he said he would contact my doctor at Vandy to find out what was going on.  This meant I had to have another scan and wait a week for his conclusion and advice.  So, I had the scan and felt just horrible the rest of the day from the chaos of the whole ordeal and the mixed information.  I even went downstairs between scans and called the doctor at Vandy myself.  She promised me that the tumor had grown and said it may not be 30% but it has grown.  She said the radiologist was wrong.  I didn't know what to think. 

The next day we flew home and I had pushed a lot of the bad out and was focusing on getting home to my children.  I had missed them tremendously.  I bought them each a toy at the airport in Boston and we were on our way. 

The next week was one of the longest ever.  I tried to block things out over the weekend and then when Monday rolled around I started obsessing again.  The doctor called on Wednesday.  It was one day short of a week.  The doctor said that he felt that the tumor was stable even though it had grown by about 10%.  He said that in radiology terms, "stable" means up to like 10 to 20% of growth.  He said that he felt like I should stay on the new chemo, Sutent, since they had already changed me to it.  He said we would scan again in April (3 months later) and if it was still stable, I would be considered for surgery. 

The next three months were a little back and forth.  For the first half of the time, I was mostly just trying to give myself a mental break.  I kept thinking that I had to rest my mind while I could.  Dealing with a life-threatening illness is extremely difficult and we are not taught how to deal with all the emotions that it stirs up inside of us.  They wear you out mentally and physically. 

The second half of the 3 month wait was harder.  I was tired from the chemo and from the cancer I was carrying around.  The new chemo was harder on my body and so I had to deal with the side effects from it.  I couldn't eat certain things because they burned my tongue and mouth.  I had no energy and worst of all.... I had no blood.  My hemoglobin was consistently in the 7-8 range.  I had to continue to get blood transfusions in which caused me to develop antigens in my blood.  This made it even harder to get a blood match for me.  There's just a lot that goes into the whole ordeal. 

I requested my scans to be done the first week day of April, the 2nd.  The week before I kept debating about whether or not I should ask for it to be moved up.  In the end, I waited because I would have had to have another precert if the date was changed.  The was issues with the scans and the orders so I had to wait forever for them to get new orders and to scan me.  Finally we finished and we went out to the Japanese restaurant that I love to get dinner because it was that late.  We also stopped by the mall and walked through for a minute.  My mom was looking for Easter stuff and I was just trying to get my mind off things.  I was so exhausted that I didn't last long and we then headed home. 

It was the next day that I heard from the doctor (the scans had been overnighted to him).  He said that it was stable.  He mentioned waiting until July and doing more scans and then scheduling me for surgery if they were still stable.  I was kind of shocked.  I asked if I could be considered for surgery now and he said he would check and see.  We hung up and then after talking with my mom and brother I decided to call back and emphasize that I wanted to try to have it out in now if it was in my best interest.  He said that he had already emailed the surgeon to review my case. 

The next morning, my aunt was visiting with my mom and I here at my house and my phone dinged.  It was a new email from my doctor stating that I was okayed for surgery and asking if the first part of May would work.  I was thrilled.  We celebrated!

A few minutes later, the phone rang from Boston with the nurse scheduling my surgery for not only the first part of the month but actually for the first day of the month!  I started planning!

TO BE CONTINUED...