Don Bowen Update: 2008-04-14

Sunday was a pretty good day. I relaxed all afternoon and watched the Masters. Can’t remember the last time I watched that much golf. I really enjoyed it. I also enjoyed not having headaches until later in the evening.

Did anyone else see the CNBC special on American Airlines? It was both informative and disturbing. As a five year Executive Platinum member I watched with great interest. Why do we keep telling the bad guys how they can be even more effective? I just couldn’t believe that they talked about the impact of 911 in one breath and in the next shared how transported goods aren’t scanned and they just trust the shipper. Huh?! I was also amazed that someone actually has 31 million frequent flyer miles. He just can’t have a life.

Today was great until around noon. I had lunch with a friend, Mike, from way back and we enjoyed catching up on the past and present. He plays semi-pro football for a team in Bloomington so I’ll have to try to catch a game this year.

The headaches started around 1 and have been bad all day. I was surprised that even taking a stronger pain pill did nothing, other than make me a bit ill. I still think the cause is radiation, but I did wonder today if it could be talking. I was fine up to noon and didn’t do any talking. From noon on I was talking. I sure hope that isn’t it because as I’ve said, talking on the phone is the majority of my job and about the only thing I know how to do.

Please pray these headaches go away because I have practice tomorrow for this weekend and I’m singing “Hold Fast”. I’m sure the pain would lessen the chance of me cracking emotionally during the song, but I’d prefer choking up to grimacing

I’m scheduled to meet with my doctor at Duke on June 2 at 8am, so Eileen and I will fly in on Saturday, May 31 and return the evening of June 2. I guess my temodar cycles are not rigid so it won’t be an exact 28 day cycle. I know half of you can relate :-)  We’ll probably drive to O’Hare. Pray that we can work out the flights.

Today I was listening to Jeremiah and was reminded of how much I like this passage:

“This is what the LORD says: ‘Let not the wise man boast of his wisdom or the strong man boast of his strength or the rich man boast of his riches, but let him who boasts boast about this: that he understands and knows me, that I am the LORD, who exercises kindness, justice and righteousness on earth, for in these I delight,’  declares the LORD.” (Jeremiah 9:23-24)

I need a miracle, God specializes in them, pray BIG!

links for 2008-04-14

• Rich Sharples’ Blog » Blog Archive » Tough, Cancer Beating Bastard

Don Bowen Update: 2008-04-12

I know what you’re saying, “Slacker.” Because several  of you have actually said it Well, I confess I just wasn’t feeling up to it. Sadly, I wanted to write, I just didn’t have it in me. Actually my better excuse is that nothing all that interesting was happening, but I at least have a few days to pick from now.

It was bound to happen. Live with five women long enough and you get on your own 28 day cycle. Five days of temodar, 23 days of recovery. I won’t say my cycle is worse (hey, I’m not stupid!), but it isn’t fun. However, since I’ll probably be on it for quite a while I’m trying to get comfortable with it. It beats the alternative.

Wednesday I was done with my temodar, but not done with the nausea it created. I keep forcing myself to eat, but it can be hard. All my old staples make me sick just thinking about them. Fortunately fruit doesn’t, so I eat apples and oranges. When I get to heaven I’m heading right for the Garden of Eden. If it’s this good here, can you imagine how good it will be there?

I was supposed to sing at church on Wednesday night and though I wasn’t feeling great I finally made the call around 2pm to do it. I’m so glad I did. It was great to be there, be around friends and to sing to the Lord.

“Sing to the LORD a new song; sing to the LORD, all the earth. Sing to the LORD, praise his name; proclaim his salvation day after day. Declare his glory among the nations, his marvelous deeds among all peoples.” (Psalm 96:1-3)

I have pursued so many things in my life that I’m not gifted at and maybe not even that good at. I was given the gift of singing by God - no, I’m not saying I’m a gifted singer - and waited far to long to pursue using that gift. One of many things I’d do differently if I got the chance. If you have ever felt a small voice telling you to use a talent you may not be quite sure about, go for it. It may be God wanting to grant a desire of your heart. He did that for me, but I was deaf to it for way too many years.

The headaches and eye pain were pretty consistent from Wednesday night through Friday night. As with so much I’m going through it is just hard to describe and it changes fairly often. Most often the pain is in the back right where the scar is and where the radiation was focused. Sometimes it can be in the right front and occasionally in the front and back on the left. Recently the pain started spiking for fractions of a second and I don’t care for that Ibuprofen can help a bit as can pain pills, but I try to avoid both if I can.

I really wanted to go to soaking prayer on Thursday, if nothing else to pray for others, but just didn’t feel up to it.

Friday morning I met with Dr. Geoffroy for the first time in quite a while. He said he had no update from Duke but we know the pharmacy was updated, so I’m not sure what happened. I described my head pain and wanted to know if anything could come back this quickly, having shown no signs only two weeks ago and he said no. He has heard of something developing in one month, but confirmed again that the thing to monitor is my vision. My vision isn’t better, but it hasn’t gotten worse, so that’s very good.

Speaking of vision, I wanted to mention that if you are ever surprised I don’t acknowledge you, it very likely I’m not recognizing you because of my vision. This is especially true if either of us is moving. It was a cruel trick for a guy who was already incredibly bad with names.

Because of the cost of the drugs I’m on, especially things like temodar, UnitedHealthcare wants me to get those drugs from a specialty pharmacy under contract to them. When I called I found out this means mail order drugs. I immediately felt even more nauseous. I don’t have a choice unless I want to pay for these myself, which I clearly can’t. I’m sure getting meds via the mail will work fine, but it made me uncomfortable. See how petty I can be?

Duke wants me to visit again on June 3, so I’m trying to figure out how to go and who to go with. It will probably be me and Eileen, but Mike has offered. I’ll try to move the meeting to Monday the 2nd and may even fly out of Chicago to avoid the scheduling nightmare between here and there. Depending on cost, I may even pay instead of using my points. Then again, maybe I shouldn’t fly American!

My dad found out this week that he does have prostate cancer. He and my mom are working through questions and trying to decide on surgery or treatment. I can’t blame dad for not wanting to join the prostate club. Those gowns are just pathetic My brother and I also found out for the first time that our grandfather had two bouts with prostate cancer, but he lived to 96. I’m only asking God for another 40 years, which is threatening enough to Eileen. Please continue to pray.

Today may be a Lord of the Rings marathon. The extent to which Wendy will go to avoid playing cards against me is amazing.

I’m so thankful for family and friends like you. I don’t know how I would make it from one day to the next without you and your faithful prayers. God is using you to sustain me and I will forever be indebted. I pray that it will change you forever to the good, just as it has me.

I need a miracle, God specializes in them, pray BIG!

links for 2008-04-10

• A new way to fight cancer: the silver shield
  “In theory, it opens up new treatment approaches that will allow higher doses of chemotherapy. It’s a direction that’s worth pursuing in clinical trials in humans.”
  (tags: cancer chemo anti-aging)
• YouTube - Pretty Girl’s Brett Favre Farewell Tribute Song!
  Funny, but it still brought tears to my eyes.
  (tags: Brett Favre Green Bay Packers Football Video)

Don Bowen Update: 2008-04-08

I actually intended to send this out last night, but just didn’t feel well enough. This chemo treatment has definitely been a bit tougher, but I’m very thankful that today is my last day to take it for 3 weeks. Please pray for the head and eye pain, which has surprisingly pretty much put me down the past day and a half.

My nausea Sunday was worse than I had expected and started to concern me a bit. When I got home from church I called my friend Tim, who also has a GBM and is a pharmacist. Tim has helped me before because he not only knows the drugs, but also knows how to take them. He told me to take my zofran every 8 hours, not just “as needed”. My stomach is still upset, but I think it’s less. For the first time I have to force myself to eat, but Tim said I could be back to normal by Thursday or Friday, which is great. Thanks, Tim!

Because I didn’t feel well Sunday I just relaxed and ended up watching the first two Lord of the Rings movies on TNT. It was hard to follow and harder to hear. I had to put closed caption on and it was hard to read. Think about what seeing “9.99″ for something that’s “$29.99″ and apply that to every thing you read - everything. By the time I realized what I was reading didn’t make sense and tried to adjust left, the caption had changed. I only watched part of the third movie and want to see how it ends, but I don’t think I’ll be super fan like the Garbers and Monahans.

I spent hours on the phone with UnitedHealthcare yesterday. I printed all four pages of claims for this year and we started at the first one. All seven claims on the first page were wrong. Laurie Lee couldn’t have been nicer or more helpful, but she finally said, “I’m really sorry this is so messed up, but I can’t spend the rest of the day on the phone with you. I’ll already be in trouble for how long I’ve spent. We’ll have to send this to auditing for a complete review.” I hope that’s good, though ‘audit’ always sounds like ‘proctology exam’ to me

As I’ve said, I’m trying to get all my doctors to be covered in network, but that requires me to get UHC to make an exception. I got one early for my neurosurgeon, which was great. Getting the others is much harder. I got letters from UHC that my radiation oncologist is in network for 16 treatments and my medical (chemo) oncologist is in network for 15 visits, though only between 3/25/08 and 12/31/08. Sadly, I had 30 treatments, not 15 or 16 and they all ended 3/7/08. See how much fun this is?

For any of you who worried about my use of the razor blade given my poor eyesight, you will be happy to know that I got a professional pedicure today courtesy of my friends Gary and Sheila. Even though I wasn’t feeling very well, Teri was great. I see why Sheila loves her.

The last time my feet looked this good was October 29, 1958! I learned that using the razor was actually hurting me and not just when I drew blood

I had a challenging email exchange over the weekend with my friend Bob, a missionary in Djibouti Africa. Bob is doctor and serving some the poorest people in the world in one of the hottest places on the planet. He sends out updates like mine, only much better written with stories that are sobering and amazing. OK, so they aren’t really like my updates. Anyway, I told Bob that reading his stories made me realize my problems were even smaller than I had thought. He responded that all the problems each of us face seem big to us and if we look at them through God’s eyes we’ll see He can resolve any of them. He is the great Healer and the God of the impossible. I have given this same response when people have said what I’m going through reminds them of how small their problems are, but forgot to take my own medicine No matter your situation, God is BIG enough to solve it. I know He doesn’t always solve it the way we want Him to, but that doesn’t change His nature.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:2

Not some things, but all things, even when we can’t see it.

“We live by faith, not by sight.” (2 Corinthians 5:7)

Faith is hard because we want to see first, but it’s also what I love about faith. As my pastor Cal says, it’s sweet when you believe He will provide before He does. Believing only after, takes no faith at all. I’ve been listening to Genesis this week and find the faith of Abraham amazing. God promised to make him into a great nation, but Abraham had no children and was very old. Yet when God told Him he would have a son.

“Abram believed the LORD, and He credited it to him as righteousness. ” (Genesis 15:6)

The facts were that Abraham and Sarah his wife were far past child-bearing age. But the truth is that God said He would give them a son and He did. The facts are that my cancer hides and they think when they can’t see it, it’s still there, but that isn’t necessarily the truth!

“And he did not do many miracles there because of their lack of faith.” (Matthew 13:5

I never want lack of faith to limit what God can do in my life. This was a pep talk to me. You just got to listen in on it.

I need a miracle, God specializes in them, pray BIG!

Don Bowen Update: 2008-04-05

Phase Two of the battle has officially begun! I took my second day of temodar a little over an hour ago and so far so good. My stomach has been a bit upset at times the past few days, but that started before I began taking the temodar, so I think I may have a bug. I always pray that God will dissolve the temodar and send all of it to where he wants it in my brain and let none of it touch any other part of my body. I told that to my friend Thom and he said, “But it goes to your whole body, right?”, to which I replied, “Maybe”

Thursday night on the way home from soaking prayer I told Eileen I thought I saw birds fly in front of our car. It was past dusk, but not quite dark. Like when a good comedian waits to deliver the punch line, there was a pause and then Eileen said, with a laugh, “You did see birds”. Phew! I thought I was losing it.

Friday I felt incredibly good and it was great. My head felt totally normal until dinner. I described the pain to Eileen as someone grabbing my head with huge hands and twisting in opposite directions with each hand. Not pleasant. The eye pain is like something huge is in my eye and sometimes like there is a string attached to the right side of the right eye and pulling hard. The great news is that it’s getting better and God always takes it away so I can sleep.

Eileen and I were thinking about seeing a movie on Friday night, but when I heard it was $9 now at one of the theatres I just decided I can rent, so we did We both love Jane Austen, so we got “Becoming Jane“, which is about her life. The BBC version of Pride and Prejudice is one of our very favorites. I need to get it on CD, since I’ve never read it.

Saturday was as good as Friday until we left for the wedding of our friend Mark, who is the son of our good friend’s John and Susie Chaney. What a great day for a wedding and Mark and Stephanie looked great.

We got to sit with friends Don and Cindy Leach, Ted and Sharon Pittenger and Pete and Wanda Hanssen.

It was no accident because I had just said to Eileen on Friday that we needed to find someone to help us eat better. Wanda is a dietitian and they are both passionate about eating right. There are no coincidences. It will be hard to stop being lazy about food preparation and eating, but worth it.

John and Susie looked young enough to be the bride and groom. It’s hard to have friends that look this good. I’m thinking of shaving my head now

I love going to weddings, which is good for a man with four daughters. Stephanie’s dad was completely composed. I’ll be a blubbering idiot. Girls, I’m warning you now. Eloping is an option you may want to consider.

As I listened to Cal say, “In good times and bad” and “In sickness and in health”, I remembered back almost 24 years ago when Eileen and I shared our vows. In tears I thought about the fact that though Eileen agreed, she didn’t think her husband-to-be would develop serious brain cancer. Thank goodness she meant what she said.

Dad Update: My dad doesn’t find out about his biopsy until this Wednesday. As I told my mom, that’s just more time for people to pray. Thank you!

I’ve been listening to Psalms again and this passage stood out to me yesterday:

“Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked. For the LORD God is a sun and shield; the LORD bestows favor and honor; no good thing does he withhold from those whose walk is blameless. O LORD Almighty, blessed is the man who trusts in you.” (Psalm 84:10-12)
I trust Him completely and I am blessed. You do the math

I need a miracle, God specializes in them, pray BIG!

links for 2008-04-05

• Mathematics To Retire Favre’s Number | The Onion - America’s Finest News Source
  Mathematicians, statisticians, number theorists, and members of numeral-oriented professions held a press conference at MIT Tuesday to announce plans to honor quarterback Brett Favre’s stellar 17-year career by retiring the number four.
  (tags: Favre Four Retire Number)

Don Bowen Update: 2008-04-03

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.

Tuesday 4/1

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.

Wednesday 4/2

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!

links for 2008-04-04

• InternetNews Realtime IT News – Open Source VC Funding Hits All-Time High
  It’s a good time to be an open source startup looking for financing.
  (tags: opensource VC funding)