 Amy's Story
In December 2008, I thought I was having a sinus infection. I went to the doctor and told them what my symptoms were and they gave me a 3-day Z pack. I took that and hoped I would get better after the 2nd day but no luck. After a few weeks and many naps, my husband said, "I'm taking you to my doctor on Monday." I didn't put up a fight because I didn't feel good. Monday morning we took our girls to school and then went to his doctor's office. His doctor was not available so we saw a nurse practitioner. I remember I couldn't fill out the office paperwork and I asked my husband to do it for me. The last thing I remember that day was them calling my name to go back to a room. From what my husband tells me is that they sent me to St. Luke's Northland for an MRI. After the results of that they found I had giloblastoma brain cancer. I was waiting for an ambulance to take me to St. Luke's downtown because northland doesn't do brain surgery. My family said it felt like it took forever for me to get transported. With great luck, we were connected with Dr. Salacz. He asked us if we would be interested in going to Duke University for their brain tumor study. So the day after I checked into the hospital I was admitted for surgery. Dr. Flores did the surgery and removed as much of the tumor as he could. I think I stayed in the hospital for about a week and I came home with two black eyes and a ton of pain. By this time Christmas was getting close, thank goodness I had already done some shopping, but as most good Mom's do, I had hid most of the presents. My husband and my sister could not find most of them, but when they did, they would hold it up and ask, "Who is this for?" According to them I would say who it was for (I don't remember them asking me but they said I gave it a good try). So they wrapped and did more shopping because they couldn't find everything. I slept most days, all day because I was so tired.
My Mom, sister, Chris and I headed to Duke University right before the New Year's holiday. We had some very generous people donate their airplane and pilot to take us to Duke. We met the pilot at KCI. It was amazing to pull our car right up to the plane, throw our luggage on, get in and go. They had a rental car at the little airport in Raleigh Durham waiting for us. Such a blessing when you meet people who are so kind! We found our way to our little hotel right next to the hospital, checked in and decided to find someplace to get dinner. We headed to a little local fish place. We ate dinner and headed back to our hotel because the Missouri Tigers were playing that night. We had joining rooms, so we could easily stay together with the one rental car.
The next morning we had an appointment early. It took me forever to get ready because I was exhausted after the plane ride and horrible air conditioning in the hotel. Just trying to find the right area to be at the right time was a chore. First we had to go to the general admission, and see the doctor there. Wait and wait and finally we were sent down to the Robert Preston Tish Brain Tumor Center. We met with a lot of people in two days; nurses, counselors, doctors and assistant doctors. After we were finished, they sent us on our way and said read the manual about the trial and when you come back tomorrow if you decide you want to participate we can sign all the papers. And did they mean that. I signed more papers than I did to buy a home. After we finished the signing and listening to all the pros and cons we headed to the airport. Of course our pilot was there waiting for us, he told us it would take us longer to get home than it took to get here because of head wind. Boy was he right! It felt like it took forever and then some. It was New Years Eve and I think we landed at KCI about 6:00 - 7:00 p.m. When we got home there were people at our house ready for a party. I think I stayed up until 10:00p.m. and then said, "Goodnight, I will see you all tomorrow." Well, I guess it was tomorrow because just after midnight they came into my bedroom singing and turning all the lights on. I said thanks and asked them to go downstairs and finish their party.
Shortly after getting home from Duke, we headed back to Dr. Salacz's office and he gave us the plan. I would do five days a week of radiation for approximately 2 months. After that, I would be getting Avastin by IV in the Outpatient Area for 11 cycles. In conjunction with that I would also take Temodar for 5 days and be off for 25 days. I began to get fluid build up on my forehead and began asking medical people if this was something to worry about. The first three said, "No, it should go down in a week or so." Finally, we went to see Dr. Flores and as soon as he saw me he said, "Yes, you need surgery to put in a shunt." Oh my goodness! This was on Friday, and he wanted to do the surgery Monday. I went back to Dr. Salacz's office and he said, "No, you will bleed out with this medicine you are taking. We have to wait at 4-6 weeks so some of this medicine can get out of your body."
So we stopped the medicine and waited until the time was right. Then we had a 6:00 am. appointment to have a shunt inserted from the first surgery site down to my stomach. They said it would be no big deal but man-o-man I was sore. I stayed one night in the hospital and said I had to get home. You can only stay so long when you have a room-mate. So the next day after the doctor visited me he said I could leave. So once again, I headed home for more napping, for at least a week, and then I got back to the Duke napping rules, one 1-hour nap or three 20-minute naps. I opted for the hour naps. Still today, if I have time I try to squeeze in a nap.
I also took a Brain Fitness Course at St. Luke's where I would go 4-days a week for two hours. I graduated last summer. This was recommended by Dr. Salacz's office. It was a lot of work, but I'm glad I did it. At this time, I have decided to stop Avastin and continue on with Temodar. I will get an MRI every two months to keep up with the tumor progress. So far, I have no new growth. I would like to give a special THANKS to Dr. Michael Salacz, Caroline Tracewell, Carol Murphy, and Theresa (at the front desk) without them I'm not sure I would still be here. Thanks and see you every so often at the office.
Amy Roberts
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