Friday, July 31st

The radiation "boost" started today, and I have to say, there didn't seem to be much change from before. I only have 8 more radiation treatments to go! Fridays are my normal day for the nurses to check my blood pressure (up a touch this week), temperature (normal) and my weight (up 2 lbs.; thanks, chocolate malts). After those pleasantries, we met with my radiation oncologist, Dr. Smith. He didn't say anything about the blood pressure or my weight, so I'm working on the assumption that neither is a problem. Dr. Smith seems more interested that I still have a healthy appetite, and that I am not losing weight. He checked my scalp (and the scar from the biopsy) and said everything looked good -two thumbs up, I guess. He didn't even review this week's blood work with me, and I didn't get a call from my chemo oncologist which is a good indication all the counts are within the normal levels. I'm still feeling pretty well, the only time I really get tired is the middle of each afternoon, when I usually nap for about an hour. No other significant side-effects except for the major hair loss from the radiation. I'll be getting another haircut on Sunday afternoon.
On the way home from last Wednesday's treatment, Carole and I stopped at Red Robin, so I could try one of their chocolate malts. I liked getting all the extras in the ice cold stainless steel cup (something I didn't get, but expected from Steak & Shake). The "malt" flavor seemed to be missing something, so I've decided it ended up not being in my top 5. To eat, I ordered their Royal Red Robin Burger (the one with a fried egg on top) which was excellent, and I would recommend as long as you like eggs.
It turns out I made a big mistake a couple of days ago when I mentioned that I had not sorted through my drawers yet. It seems Carole had forgotten about it, and the reminder means I have a job this weekend. I can't wait!
Carole got out golfing yesterday afternoon, and she's playing in the Linn-Mar Foundation Outing today. To be safe, I think I won't talk about how she feels about her game (she did have a couple of pars yesterday). At least her ankle and hip seem to be holding up okay.
We don't have any travel plans this weekend. I think I still need to recover from last weekend's trip to Chicago. However, we're looking forward to going to dinner on Saturday evening with some good friends. Is it me, or does my life revolve around food?
I hope you are all doing well!

Tuesday, July 28th

We finally got to talk with my radiation oncologist today about last week's MRI. We didn't learn much new. You're really not supposed to analyze this MRI too much because it's not uncommon to get false readings from the images. They tell me if you want to measure any changes in the tumor(s), you need to wait until 30 days after you finish radiation before getting and evaluating a new MRI. That gives the swelling a chance to go down. The pictures from last week will be used to refine the target of the radiation I'm getting every day. Those adjustments will be implemented with this Friday's treatment. The plan is to continue the course that was originally planned. I still don't have many side-effects from the chemo, but the radiation seems to be having a cumulative effect because I'm starting to get a little bit more tired every day. I'm still working for Genencor from home about 4 hours a day - mornings are best.
Food still tastes great to me, and I do still have my appetite, and it is growing (like my gut). I got Dairy Queen malts both yesterday and today - still good! Andy suggested a couple of different places to try in Iowa City, but I need to find out exactly where they are.
Carole started cleaning carpets today. She's driving me crazy with all her busy work, but the good news is, I still haven't had to sort through all of my drawers. I think Carole needs to get out golfing again before school starts. She needs to release some frustration, and I'd prefer it not be on me.
Thanks again to everyone for all of your kind thoughts, your prayers and especially your friendship. I can't put it into words, but I really appreciate everything you've done for Carole and me.

Last Friday's treatment and visit with the doctor was uneventful. I gained about 1 1/2 pounds last week, but the doctor didn't say anything about it. I guess that means I don't need to worry about it, either. When we left the hospital, Brian wanted to try a chocolate malt from Whitey's. Unfortunately, we arrived just after a full daycare class of kids arrived, so we decided to skip Whitey's and go to Dairy Queen instead. It was good, but Brian and I were both a little disappointed that we missed Whitey's. After we got to Chicago and got checked in the hotel, we met Carole's brother, Jim, his wife, Nancy, their oldest daughter Christine her husband, Christopher, and their boys Brad and Ben at the Weber Grill Restaurant in Lombard. It was great food and company. Of course, I ate too much again.

On Saturday, we went to the Reds vs. Cubs game.


Brian, me, Carole and her brother, Jim (one Cubs fan in the bunch)

Why did I ever ask how many games the Reds could lose in a row? It was a perfect day for a baseball game, but the result wasn't what I had hoped for.


Brian and me (that's Carole's Leffe Bruin in the foreground) Cheers!

After the game, we went to the Hopleaf Bar north of Wrigley Field that has Leffe Bruin (my all-time favorite beer) on tap. Thanks to Tory for the suggestion. I have to admit the Leffe Bruin tasted better than any of the chocolate milkshakes or malts I have tried so far. On Saturday evening, we went to Portillo's, had an Italian Beef Sandwich and one of their chocolate malts. Maybe it was the Leffe still being on my mind, but the malt was not quite as good as one from Dairy Queen.
Sunday morning, we were up early and on our way back to Cedar Rapids. We met Andy and Tory for lunch in Iowa City, and we were back home by about 1:30 PM. It was a fun and tiring weekend. Carole has been doing laundry since we got home, and I think she's trying to get fired up to resume driving to Iowa City every day. I keep telling her I'll drive, but she's not very agreeable to that idea.
Tomorrow, we meet with the radiation oncologist who will review last Thursday's MRI with us and discuss any changes they will, or have already made, in the radiation treatments. I wish I knew whether or not I should be nervous about what he will say, but I really don't have a clue.

Thursday, July 23rd

Today, Carole and I took my car in for service, then I had my usual radiation treatment. Immediately after that I had an MRI. Let me assure you that spending 45 minutes getting rattled and shaken around in your own private tunnel is no fun. After that, the day got better. We went to Whitey's on Washington Street in Iowa City, and I had the best chocolate malt I've tasted so far - a new #1. It was totally different than the one I had last week at the Whitey's in Coral Ridge Mall. Just goes to show that the person actually making the the malt makes all the difference. After the malt, we went to lunch at Z'marik's Noodle Café which was excellent as well. Then we went to Andy and Tory's house and I crashed on their couch in front of the television while we waited for the car to be ready. Carole ended up taking a walk around the block while I was resting. The car was ready at about 2:45, and ended up costing less than I expected. That was a nice surprise.
Brian is on his way to Cedar Rapids tonight, then after tomorrow's radiation and doctor's appointment, we're headed to Chicago for the weekend where we'll visit Carole's brother and a big part of his family and go to the Reds vs. Cubs game on Saturday. I'll be wearing all my Reds gear! How many games in a row can the Reds lose? Next update probably won't be until Sunday or Monday.

Wednesday, July 22nd

Not much new to report today. I got poked again, the normal Wednesday blood draw. I haven't experienced any new side effects, either - that's a good thing. I still get pretty tired in the middle of each afternoon. The doctors have told me that's from the radiation, and it's normal. Carole has assured me my head does not glow in the dark. Tomorrow I get another MRI. The images from this MRI will be used to refocus and pinpoint the radiation for the final 14 treatments. The technicians keep calling it a "boost", but when I asked today, they told me it would not be a higher dose of radiation, just a fine tuning of the location - the doctors review all the images with the Physics department to determine exactly how to aim the radiation so it hits the right spot. The technology is amazing.
No milkshake today. Bummer! I keep reminding myself they're going to weigh me again on Friday.

Monday, July 20th

Today was radiation treatment #17 of 34, so I'm halfway through them. It seems to me the combination of radiation and chemotherapy are helping because I feel like I am able to walk, stand up, and bend over better then I could before I went to the hospital. I'm still very impressed with everyone I deal with at the University of Iowa Hospitals and Clinics. From parking attendants to receptionists to technicians to the nurses and doctors, they are all professional, caring people that I trust completely. It's so nice not to have to stress about that.
Carole and I had a good weekend. We made it through my side of the closet, sorting through what I still wear and use, but I was able to convince her we didn't need to go through all my drawers of stuff yet. It was just a temporary victory, but a victory just the same. On Saturday evening we went to see Angels and Demons. I enjoyed it. The ending is pretty far-fetched, but I knew that in advance from the book. I really liked seeing many of the places we were able to see when we visited Rome and year and a half ago. It made the whole experience more personal. After church on Sunday, we did some shopping - no shoes this time, just groceries. Then later Sunday afternoon, we took a walk around the block. It think it was good for both of us. I grilled some chicken for dinner, then the nightly round of pills started.
I tried a milkshake from Kool Moo in Cedar Rapids on Sunday afternoon. When they served it with a skinny straw, I was skeptical with good reason. It was very tasty, but just not as thick and rich as DQ or many of the others I've tried. We stopped at DQ today on the way home from Iowa City. The milkshake really hit the spot. My calorie intake is up (a bunch), but I think you can tell I've decided not to worry about that right now.

Saturday, July 18th

I just got my best night of sleep since before I went into the hospital. I hope Carole slept as well as I did. She's been awesome, but I wish she would worry more about taking care of herself instead of babying me. I think the only time she complains is when I complain about her driving. Does that sound like Carole? I'm trying to learn to bite my tongue, and think I'm getting better about that, but that's not me, either. Carole has been on a real clean up kick for the last few weeks. Today the plan is to go through my side of the closet and get rid of the things I don't wear or use anymore. Can you feel my excitement?
Yesterday's visit with the radiation oncologist went very well. He reviewed my blood work which was all good. My weight went down about two pounds, so I can continue with my milk shake therapy. My blood pressure is still on the high side, but not as bad as I thought it would be. The b.p. probably went down late in the day after I got a call from work. Thanks, John! I really appreciate your help. I know the call helped me sleep better last night.
After the doctor visit, Carole and I went to Steak & Shake for lunch. Of course, I had a chocolate shake. Carole had a mint shake that I think she thought was too "minty". My shake had ice crystals in it, so it wasn't quite as smooth as a DQ shake, but it tasted great. These evaluations are too subjective and I may have to put an end to them. I think I should just sit back and enjoy all of the different ones I try.

Thursday, July 16th

I have a newer look, the radiation has done a pretty good number on my hair. The shower drain is covered every day. The radiation technicians tell me this just means what they are doing is working. I still say it's just hair, and not that big a deal, but if you see me away from home, you can be sure I'll be wearing a hat!
The radiation treatments are going well, and other than being a little more tired than normal in the late afternoon, I haven't experienced any major side effects. The chemo pills I take every night are not causing any problems, either. I have an MRI scheduled for next Thursday that will not be used as a diagnostic image, just one to be used to fine tune the last 14 radiation treatments which will be boosted from the first 20. I am continuing to work from home a part of each day, and even negotiated a couple of really good deals for Genencor this week. I'm still enjoying my milkshakes about every other day. I tried a chocolate shake from Whitey's yesterday, but I'm withholding a rating until I try another from their other location in Iowa City. I don't want to make any rash judgments, you know. It seems strange to me that I get my brain fried for 15 - 20 minutes, then drink a shake and get brain freeze, and the combination actually makes me feel better - someone told me it's the protein that helps.
I've spent 15 - 20 hours each of the past few weeks either on hold with Blue Cross or CVS/Caremark (Danisco's prescription drug provider) or waiting for a doctor or pharmacy to hear back from one of them. There's a huge mountain of red tape, paperwork and bureaucracy that has to be worked through, and no one ready to let you know what questions you need to ask or even who to ask so it's frustrating and stressful. However, in the end everything has worked out okay. I got my first shipment of chemo pills via UPS today. Amazing, several thousand dollars worth of pills, and the driver rang the doorbell, left the package between the screen door and the front door, ran back to his truck and drove away, but I did get the pills. So far the only thing the insurance doesn't want to cover is my ambulance ride from St. Luke's Hospital in Cedar Rapids to the Emergency Room at The University of Iowa Hospitals and Clinics. The reason given was they don't cover non-emergency services. I have filed a written appeal - we'll see what they say.
Thanks again for all your cards, comments, prayers, well wishes and emails. I enjoy all of them.

Tuesday, July 14th

The radiation and chemo treatments continue and I'm still doing pretty well. I get fairly tired in the middle of the afternoon, and I have a huge bald spot on top of my head, but other than that, no major issues. Carole still babies me (most of the time) and refuses to let me drive. She says I don't need to. I've worked about four hours each day for several days now, which I enjoy and it makes me feel like I'm doing something useful. I have enjoyed reading all your emails and comments on the blog. Thanks for all of your encouragement!
Carole actually got out on the golf course yesterday. She wasn't happy with the way she played, but that's golf. I'm hoping to get out myself in late August or September after my radiation treatments end.
Only 1 milk shake so far this week - DQ, so no new ratings.

Monday, July, 13th

I still feel great - stronger every day. The bald spot is growing, but that's just hair (or lack of it), and I have a few hats I can use to cover it up. Sure hope this means the treatments are working. Carole and I had another great weekend. We went to dinner with good friends on Saturday evening - the doctor is letting me have a bottle of beer each day, which I'm not doing every day, but Saturday's tasted really good. On Sunday, we went to church, did a little bit of grocery shopping, and then Andy, Tory and Tory's parents, Dan and Sue came over for dinner. It was super to be able to sit down and just talk about a lot of different things with them. Andy and Tory took care of almost all of the work from prep to clean up, so I didn't have to do anything except sit, talk and drink another beer. Tough duty, huh?
I have to say, I'm learning to value friends and family more than ever before (who knows why it took so long). I appreciate the conversations with all of you, and I really like hearing from you.
I've heard some of you are having problems posting comments on the blog or would prefer not posting a public comment, so I've added a link to my gmail address to my profile. In the beginning of all this, I wasn't sure how I would feel or if I would want to be checking too many emails, but if you want to send me a note, please do so. I enjoy hearing from you!
No chocolate shakes since Friday - Carole is still staying away from them. Maybe I'll have another later today.

New Look

The hair started falling out Thursday morning, so I made a preemptive move today. Thanks, Kim! I think I should have done this a long time ago.

For those of you asking, my chocolate shake favorites are:
1. United Dairy Farmers - Cincinnati
2. Dairy Queen
3. Culver's
It's important to note that the study is absolutely incomplete and not scientific. I'm sure several of you would not agree with my rankings. I still have several I want to taste - Whitey's is at the top of that list.
McDonald's is in last place, and I suspect they will stay there.

Friday's Doctor Visits

My radiation treatment and visit with the radiation oncologist was on schedule yesterday. It was treatment #11 of 34. Everything looks good and he'll see me again weekly. I'll get another MRI in about two weeks - not a diagnostic image, but one that will be used to fine tune the target of the radiation treatments.
As predicted, the chemo oncologist was running a "little" late. My appointment was at 3:30, and he walked into the examination room at 5:00. I was already nervous about what he might have to say, so I was pretty stressed before he came in. It was good that Andy and Carole were there to remind me to calm down and remember to ask all the right questions - not that it really helped, but they tried. Everything ended up going well with this examination too, and the good news is, I won't have another appointment with this doctor until I'm finished with my radiation treatments. I really trust the doctor, but he drives me crazy (I know, it's a short trip) with his lack of a schedule.
I ended up losing about half a pound last week, so we stopped at Culver's for something to eat on the way out of Iowa City. I needed to compare their chocolate shakes with all the others I've been trying.
Thanks to my brother, Mark for by adding a comment clarifying who is younger. I think I'll take it as a compliment that he wasn't sure everyone could tell just by looking at the picture.

Thursday, July 9th

There's really nothing new to report today. All the treatments are still going okay. I'm still not getting too fatigued, I still have my hair and I'm not experiencing any shortness of breath. I went to work yesterday afternoon for about 2 1/2 hours and worked from home for quite a while today. It feels good to do something useful. Carole and I took a walk around the block this afternoon which felt good, too.
Tomorrow we meet with both the radiation oncologist and the chemo oncologist (the talker). That appointment isn't until 3:30, so we may be at the hospital until 7:00 PM. After that the battle with Caremark will begin. I'll update the blog either tomorrow or Saturday with an update about what the doctors have to say.

Pictures from 4th of July Weekend

Jeff and Paul - Go Reds!

Carole with her sister, Jan, and her mother, Ailene

Me with my brother, Mark. No family resemblance, right?

Pictures from Father's Day

Jeff, Brian, Andy and me

Smoked ribs, barbecued ribs and the "Bacon Explosion"

Carole, Paul, Andy and Tory

Carole, Paul and Brian

Carole, Paul, Jeff and Cathy

Tuesday, July 7th

I had a super weekend in Cincinnati. Carole and I returned to Cedar Rapids Monday morning, so the 5:30 AM wake up call was not a lot of fun, but it was worth it to be able to stay an extra day. I got my 4th birthday dinner (in 4 days) last night, then had friends come over for dessert. I fell asleep as soon as my head hit the pillow last night at 10:00 PM because I didn't get a chance to nap all day, but I wouldn't have changed anything. Now I need to change my focus away from food. I've definitely been eating way too much.
I've continued with the chemo drugs every day, and my radiation treatments resumed yesterday after a three day layoff. They will continue Monday through Friday for another 5-6 weeks. So far, I haven't seen any major side effects from either - no major fatigue and no hair loss (but they tell me that will come), and I feel like I am walking stronger and straighter than I was four weeks ago. I keep telling Carole to give me the car keys, but she keeps telling me I don't need to drive. It's kind of like the opposite of Driving Miss Daisy.
Thanks again for all your thoughts, prayers, gifts, emails, calls and concerns. I know I've said it before, but your support has been overwhelming.
Thanks!

4th of July Weekend

The last two days have been busy! Carole and I hopped on a plane to Cincinnati on Thursday after my radiation treatment and took advantage of the direct flight from Cedar Rapids before it's no longer available in a few weeks. Don't worry the doctor said it would be fine. We knew Brian and Karen would be here as well as Carole's mom, Ailene. Carole's sister, Jan and her boys, Ryan and Tyler are here to visit with as well, but I was in for another surprise. Late Thursday evening Jeff and Cathy walked in. They had driven 12 hours from Fort Stewart, GA. Then, in the middle of Friday afternoon, Andy and Tory walked in about the same time as my brother, Mark, his wife, Brenda and their daughter, Katie. They all had long drives, too. So, we had a surprise birthday party for me (a couple of days early). It was nice to be able to sit and talk with everyone. It's still humbling to see how much people care. It's one of those things you think you know, but you never really understand how much.
Naturally, the food was awesome, and I have to admit, we topped it off with Fresh Peach cream from United Dairy Farmers that is now at the top of my list of favorites. Uskomatonta! (Spelling correction - thanks, Bengt.) By the way, it's Finnish for "unbelievable", and is one of only two or three Finnish words I know.
I didn't get on a scale yesterday, but there's no doubt which way it tipped.
I still have plenty of energy, so I'll keep going. Today, we're off to the Great America Ballpark to watch the Reds play the Cardinals (I'd like to see Albert Pujols have an off day).

Thursday, July 2nd

Yesterday's visit with the doctor was uneventful. No problems or issues to report, but we really didn't expect any yet. Fatigue hasn't started kicking in and I still have my hair (but I expect to lose it in patches). The next time you see me, I may have a buzz cut.
I got an unexpected surprise from my friends at Genencor yesterday. They are paying a lawn service to mow and trim my lawn for the rest of the summer! Of course, I would have said no if they had asked, but what a great gift! I don't trust myself to keep my feet out from under the mower. Plus, Carole had one of her ankles fused last Fall which means it doesn't bend at all, and she can't safely push a mower either. I am continually amazed at everyone's support and friendship. You're all special people.
I love reading your comments, but I can't believe you want to read my notes. They aren't very exciting. Thanks for all your thoughts, prayers and well wishes.
I'm checking my work email daily. It's actually therapeutic for me to pay attention to work, plus the doctor keeps suggesting that I stay as active as possible.
Today's frustration is with Caremark, our prescription drug provider. My chemo doctor has prescribed an anti-nausea pill to be taken every day before I take my chemo medicine (7 days per week). I didn't know it until yesterday, but Caremark only would allow the U of I Hospital Pharmacy to give me 9 pills for 25 days, those first 9 will be gone this Saturday. After that, my doctor and I have to fill out paperwork and request that they send me the rest of the prescription in the mail. Trouble is, I didn't know until yesterday that I couldn't get a refill without all the extra work, and there's not enough time for Caremark to get me more pills until next week which isn't soon enough. You guys know me, I just love it when somebody tells me they can' t do something because of our contract.
In the end, it will all work out okay, I can buy 9 more pills myself from the pharmacy - only about $25 - and the doctor will fill out paperwork telling Caremark why I need them. With any luck, I'll get reimbursed, but if not, it's just $25. I have to be careful not to complain too much, Caremark is covering my expensive chemo drugs very well.
By the way, Carole and I stopped at McDonald's and grabbed a hot fudge sundae on the way home from yesterday's treatment. Just me, not Carole. She's still being good. The sundae was just okay - definitely not up to DQ's standards. Not surprisingly, my weight was up again yesterday.