Gary update - 1/29/10

Well, it’s been an up and down week for us. I had my first appointment with the local radiation oncologist this past Tuesday (1/26). Despite the circumstances, this was a very positive appointment. Cindy and I were very pleased with the great attitudes of the office staff, the nurses, and the doctor. We met with a social worker there who told us about a program that helps children of cancer patients come to grips with their parent’s disease. They have a set of six weekly sessions. The next set of sessions begins in April, and we think we definitely want to get the kids involved. This meets at Riverside Presbyterian Day School close to where I work and they have people come from the Cummer Gallery of Art and Gardens to do art and craft projects with the kids that revolve around cancer and the kids’ feelings about it.


The first session explains to the children about things like what cancer is and treatments such as chemotherapy and radiation. One of the neatest art projects they told us about is called a “strong box”. The kids put together a box that they put slips of paper into that tell which things are helping them deal with their parent’s cancer, such as their faith, family, friends, etc. They also can write down their fears and place them into the box. These sessions are interactive with the parents involved too, with the hope of fostering openness with their kids about how they’re feeling. We’ve seen firsthand that it can be difficult for our kids to open up to us about my cancer, even though we have sat down with them several times to talk to them about it. Annie is struggling but prefers to deal with it privately which isn’t always good. Cassie usually will confide only in me, and I know from those confidences that she is very worried. Merry has had a lot of behavioral problems which we’re sure are related to the stress of this, but she doesn’t want to open up about it. We hope that these classes will help all three of them become more comfortable talking about this and will help us all as a family.

The doctor wants to do something called an F Dopa scan, which uses a radioactive isotope to show the tumors, similar to an octreatide scan. He said many cities and hospitals aren’t able to do these because the half life of the F Dopa is very short so you must go to a city close to an F Dopa manufacturing facility. That is the case with Jacksonville, but, strangely enough, not with Tampa! He spoke to my doctor at Moffitt about this and everyone’s on board with it being done. I have my next appointment with the radiation oncologist on February 4 to have this scan which will be done in tandem with what is known as a “simulation”. A simulation was explained to me as a walkthrough or dress rehearsal so to speak of the radiation treatments to come up with the game plan of how the they will be sequenced and the exact target areas for each treatment. I will have 20 small treatments (15-20 minutes per treatment) over a four week period, one each weekday for four weeks. With the area involved, the doctor says I can expect some nausea and fatigue (which is nothing new), but little else. I won’t lose my hair or anything. The hope is that they can properly target the tumors responsible for my hip/pelvic pain so that the pain is eliminated so that I will not have to take pain medication. Here’s hoping! I’m not sure when the actual treatments will begin. My assumption is probably the following week starting that Monday (2/8), but I’ll find out for sure at the simulation appointment.

I had my second infusion of Zometa on Wednesday (1/27). The appointment took forever! At my first infusion back in December, they didn’t do any labs prior to the infusion. This time, they did some blood work and told me to wait to be called back. I then waited almost 2 hours to be called! When I complained after an hour, they said they were waiting for my labs to come back. I didn’t understand why the labs had a bearing on this, but when I was finally called back, I spoke to the nurse about it. She said that Zometa can cause kidney problems, so each time, I will have a lab done to determine my creatinine level, which is an indicator of kidney function. This level determines the Zometa dosage. I said, “So I should expect these infusion appointments to normally take this long?” I came in at 10:20 and by the time I spoke to her, it was 12:35! She said, “My goodness! No, it shouldn’t have taken that long!” She said they are working on a new system to get patients in and out MORE QUICKLY, believe it or not! I told her I didn’t think their new system was working very well. Evidently they just started it this week and were still “working the kinks out”. Just my luck! She said normally these won’t take so long. I certainly hope so. By the time the infusion was over and I made an appointment for the next infusion, I was there over three hours! Yikes!

Hopefully the next one won’t take so long, but the next infusion will include a visit with a doctor, so who knows? My next infusion is scheduled for Tuesday, February 23.

I had a worse reaction this time to the Zometa than the previous infusion. I was ok on Wednesday, but then Thursday morning when I woke up, every bone in my body ached. I could barely move and I was chilled with a fever of 101. I was able to work from home since I could still work, but it was painful. I went from being chilled to running hot and breaking out in sweats. I looked up the side effects of Zometa just to be sure and, sure enough, there are a whole host of side effects. I knew about bone pain being one of them; the doctor had mentioned that back in December. I had minor bone pain after the December infusion, but this was worse. Everything else I was experiencing was on the list of possible side effects: fever, chills, nausea, bone pain, joint pain, you name it! One thing that was mentioned was that I needed to push fluids, so after drinking away for a few hours, the symptoms began to subside. I’m not sure if this was because of the fluid intake or just because time had elapsed. By the afternoon, I was feeling much better and was able to return to work today. Yesterday morning was definitely weird for me. I plan to speak with the doctor at my 2/23 infusion appointment and see if there’s anything I can do to avoid that much pain and stiffness the morning after next time. I will definitely plan to increase fluid intake to see if that will head it off.

I am still waiting to hear back from Moffitt on my next set of appointments. At my 1/15 appointment, the doctor wanted me to come back in four weeks for another octreatide scan with a follow up appointment the following week. At the time, he mentioned that they were having trouble getting hold of the octreatide drugs, so they would call me to set up an appointment. The following week came and went with no word even after calling several times. I was finally able to speak with someone this week. It turns out that the drug is still unavailable! As it was explained to me, the drug is manufactured in Europe and every hospital, not just Moffitt, is having trouble getting hold of the drug. Many of the doctors there are simply not making appointments for octreatide patients, but are putting them on a waiting list. My doctor instead is going ahead and scheduling people now to avoid the backlog. The thought is that the drug will be available by the end of February, so they said they would call me and give me an appointment for that timeframe. Then if the drug is still not available, they will have to push the appointment back, but they believe that will be easier on their patients than being on a waiting list and having to rush around at the last minute or waiting a long time once the drug becomes available. I’ll let you know when I finally get that appointment and the follow up appointment scheduled.

Since the radiation oncologist touted the F Dopa scan as sort of an alternative to octreatide, I asked the Moffitt nurse if this F Dopa scan here would replace the need for the octreatide scan at Moffitt or if this would just be in addition to that scan. She wasn’t sure. The Moffitt doctor did confer with my radiation doctor and said he was “on board” with the F Dopa scan, but evidently did not speak to his nurse about this, so she’s finding that out as well. They’re telling me now that I should hear “by Monday” if I need the octreatide scan still and, if so, when it will be. I’ll wait and see on that. I’m sure I’ll have to keep calling and harassing them on that, but I’ll let you know when I know something.

So that’s the long and short of it right now. I know this update has been particularly long, but obviously a lot’s been going on. This has been a crazy few weeks to say the least. Thank you for your continued prayers and support for Annie, for me, and for my family. With everything going on, I know I wouldn’t be functioning at this point without them. I am pleased that I feel just the right team God has for me is finally coming together. It’s great to have a wonderful team in the foxhole with me fighting in the battle, and I’m happy that I have not only a great medical team, but a great team of prayer warriors praying for me, and the continued thoughts and support of all my family and friends. God bless you all!