It’s nice to be back home, but I’ve been going through friend withdrawal and miss spending all my time with our friends. I have so many blessings in my life and none of it is because I’m deserving or have earned it. I know that (and don’t need you to remind me :-)) But one of the biggest blessings both Eileen and I enjoy is our friendship with Garber’s and Monahan’s. There is nothing they wouldn’t do for us and after this trip I’m not sure there is anything they haven’t done.
Let me get the painful part over of this update over first. Wendy and I played more cribbage Tuesday on our return trip. I won the first game, but somehow lost the next two. I would do almost anything for her, but losing at cards is asking a lot. Was I subconsciously having pity on her? I ask myself the same question.
We all got up early to make it to Duke and to say goodbye to our host, Rob. We couldn’t have asked for a nicer place and it was really fun to spend time with them. We had thought the education session was a classroom setting, but it was very personalized. We went to the Brain Tumor Center and they showed us to a small room.
Then each specialist came to us. Did I mention that Duke is amazing? One of the first things we went over was my new treatment regimen for the next two 28-day periods. I’ll be taking two and a half times as much temodar (360mg) as I did initially, but only for the first five days of the cycle. When Joan found out I took ambien to help with sleep she created a schedule for me on the fly. For the five days I have to be done eating at 7:30pm, then I take zofran at 8pm, temodar at 9pm and ambien at 11pm (or after). She told me that because I didn’t have side-effects before, I shouldn’t have them this time either. On day 21 and 28 I have blood work to make sure I’m ok. They also check my liver on day 28 because if your liver isn’t working they can’t treat you.
We then talked with a family specialist, Jean, who helps if you have questions about how to communicate with your children. Then we got to meet again with Steve, the physicians assistant who gave us the MRI Reading 101 course the previous day. I forgot to tell you that when we were looking at the MRI Steve said, “There are no signs of cancer, but it’s still there”, to which Mike replied, “But it could be gone, right?” Steve then quickly said, “No, it is definitely still there.” Not necessarily! 🙂 As I heard someone say, the facts aren’t necessarily the truth. Amen!
Steve reviewed the two cycle schedule, gave us the drug prescriptions and asked for all my Peoria-area doctors contact info so he could tell them about my visit. After a few more short meetings with others we were done and on our way out and home.
My pain in the morning was OK, but during much of the trip home it was pretty bad. Not only was my head hurting, but my eyes were difficult to keep open – so I didn’t. This is not an excuse for losing to Wendy. I considered it a mild handicap. 🙂 We didn’t play any more password, but did watch (listen to) three movies. During the last part of the trip I got to listen to all of the Gospel of Mark and part of Luke. It’s amazing how the healing parts now stick out like a bright beam is focused on them. We got home around 2am and were all tired, but glad we drove straight through.
We got up at 7am to see the kids off to school and say hi to my parents, but went back to bed around 8. I got up around 11 and decided to walk. Once again I pushed it too far and my ankles are really hurting. When will I learn?
The rest of the day I had quite a bit of headache pain, but Megan and her friends Liz, Lauren and Brooke came for a visit and games. First we played Tick and then the girls played Taboo.
Thursday 4/3 (Today)
The pain was much better today, but I’ve had an upset stomach much of the day. Eileen had a migraine and also had an upset stomach. It could have been the food. I did get to have lunch with my good friend Dan and it was great to catch up.
Eileen had gotten my temodar yesterday, but I thought I’d start taking it today. At the last minute I decided to wait until tomorrow so that my blood work days are on Thursday. That way if I want or need to, I can travel during those weeks.
I really enjoyed soaking prayer tonight as I got to pray for two friends. Rayann, who is getting ready to start chemo and radiation, and Patrick, who has real shoulder problems and whose daughter, Genna, who has ITP and I’ve mentioned before. Embarrassingly I had a good day physically with little pain, but emotionally I struggled and it wasn’t about cancer. How do you get some of the best news ever on Tuesday and by Thursday you have anxiety about stuff you shouldn’t? Getting my attention focused on others helped immensely. I highly recommend it.
My friend Nancy shared this verse with me the other day:
“The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.” (Psalm 28:7)
It’s especially true, as I will be singing MercyMe’s “Hold Fast” on April 19 and 20. I actually got to sing it once before, but emotionally it will be much harder this time. I have been living out the words since December 20.
I need a miracle, God specializes in them, pray BIG!