Color me mangy

Hi! Last night, my hairline made a sudden recession of one inch on the right side only. I assume that's just an indication that more patches of hair are about to disappear unexpectedly. A side effect of whole brain radiation is the mass extermination of hair follicles. The doctor said this almost always happens between day 10 and 13 of treatment. I completed day 13 on Friday and still had all my hair, so I thought I was in the clear. But alas, no. Now I just sit back and wait for the next several days to see if I lose all my hair or just odd patches here and there.

In any case, I was prepared for this latest development. Kelly gave me a tight buzzcut last weekend in anticipation of the hair loss. Jack buzzed his head as well in a sign of solidarity. Way to go, bud! Finn's wearing his hair short as well these days, as you can see in the picture (he wasn't too happy about being photographed though; and Jack had fun imitating him). I told Kelly we need to get some black plastic glasses for Finn and Jack, then the Dodd boys will really look alike.

Fortunately, my whole brain radiation ends this coming Tuesday. The doctor said it would make me fatigued, especially toward the end, and I can attest to that now. The fatigue has hit hard the past few days. Evidently the brain starts to get a little annoyed after being radiated over and over again, and this is how it fights back. I hope it subsides a little in time for my brother's wedding. In any case, all the attention on my brain lately has me thinking about those stupid TV ads. You know the ones: Head On! Apply Directly To The Forehead! Head On! Apply Directly To The Forehead! Head On! Apply Directly To The Forehead! I have no idea what that stuff does or is meant to do, but the ads are highly annoying and thinking about them is probably the worst side effect of the radiation and chemotherapy so far!

I'm not even going to comment on football this week.

Jeff

Babies and another baptism

Hi! Yesterday we attended the baptism for Chloe Marie and Allison Ann Popanz, daughters of our good friends Tony and Cee Cee Popanz. Tony was one of my roommates when I studied in Ireland. He is also a godfather for our oldest daughter, Aubrey. Kelly and I were very honored to return the favor and serve as two of the four godparents for his beautiful baby girls. This is the best picture we got with our camera. As you can see, Jack found a way to sneak into the picture of the babies, parents, and godparents. We had no idea he was standing there until pictures were over! : )

I watched a little football over the weekend I was glad to see that Notre Dame has shown improvements in another losing effort. They might squeak out a win or two sometime this season. And Nebraska managed to pull off an upset over perennial gridiron powerhouse, Ball State. I was impressed that they showed so much heart and perseverance a week after their heartbreaking nailbiter loss to USC. We Husker fans have to be so grateful to AD Steve Pederson for recognizing the countless flaws in Nebraska's 30-year-old tradition of winning and for his brave willingness to make decisions during the past four years that ensure the Big Red will not succumb to mediocrity. ; )

I resume my radiation schedule again today. Ugh. The only good thing about it is the nice older couple who is always in the waiting room when we arrive. We kind of have our own personal support group. The husband, who is there to support his wife through her treatments for advanced colon cancer, says things that just make me crack up. The other day, the wife was complaining of leg pain she has been having. I asked if it was caused by the tumors pinching her nerves. She nodded yes, but her husband interrupted: "I think it's caused by her hemorrhoids," he blurts out. It was all I could do to keep a straight face. That might not seem very funny to anyone else, but you take what you can get when you're in an oncologist's waiting room!

On a more serious note, I heard a story this weekend about the parents of an old grade-school classmate. Evidently, the husband had fallen and broken his rib recently. The doctors performed a chest x-ray while patching him up and discovered a lung cancer lesion. It was in its early stages so the doctors could remove it surgically and he will not need radiation or chemotherapy. Talk about serendipity. I was sorry to hear about the discovery of the cancer, but at the same time I also was overwhelmed with gratitude that they caught it early. This couple has been so supportive of me during the last nine months; maybe God heard all the prayers they said for me and chose to answer by helping them catch his cancer while it was still curable. That would be something good.

Jeff

Just a cup of joe

Hi! So I asked my radiation oncologist about the dosing of radiation I am receiving. He said I am getting 250 rads (also referred to as centigrays; both measure the quantity of absorbed radiation) per day for my whole brain radiation. I am getting 400 rads per day to treat the subcutaneous node on my rib. He said 400 rads would "fry my brain" but he can give me the higher dose when going after the subcutaneous node because he isn't hitting any major internal organs. Frying my brain was evidently the goal, however, when the doctor performed the Gamma Knife procedure: it involved a targeted dose of 2,000 rads! No wonder he took so many precautions to make sure his aim was accurate.

I also asked how many bags of microwave popcorn the radiation would pop. The doctor said the units used for measuring microwave power are very different from those used for measuring radiation therapy so a direct answer is not possible. He went on to say, however, that he guessed the dose of brain radiation I am receiving is equivalent to the amount of energy in a cup of hot coffee. Think about that one the next time you're standing in line at Starbucks!

Also, I wanted to make one clarification. After talking to a friend who reads the blog, I realized that I may not have been entirely clear about how I'm getting around these days. I am able to walk--slowly, totteringly, but surely--with a single-point cane. I do not use a wheelchair, although I borrowed one when I was at the airport en route to and from Houston because the chair made it faster and easier to negotiate my way through large crowds. I'm starting to practice walking a few steps without a cane. I look like a neanderthal when I do so, but it's progress.

Jeff

My dad watching the footboll game!!!!!!

Yesterday my dad's frends came over to watch the football game.The huskers & ND LOST!! My dad was kind of mad but that is OK. And they brought there twinn baby girl's. This blog is by Regan dodd

What's a head mold look like?

Hi! I'm on my third day of radiation treatment and my second day of chemo. The radiation hasn't been too bad. It's definitely fast! Today, I tried to time how long it takes: the radiation process itself lasts only 30 seconds for each half of my brain (one minute total). You can add in another minute for the machine to switch from the right to the left, roughly three minutes for me to get positioned on the table and locked in, and maybe two minutes for me to get off the table and hobble out the door. The whole radiation process from start to finish takes a whopping seven minutes, including time spent in idle chatter with the radiation therapists! I still have to ask the doctor how much radiation I'm actually getting. I'm not sure if I'll understand the technical explanation, so Kelly told me I should just ask how many bags of microwave popcorn it would cook up.

As for the chemo, I can only say my hopes for a nausea-free experience ended pretty quickly. It's nothing like biochemo--so far, anyway--but if you think I act distracted the next time you talk to me, don't take it personally. I'm simply trying to will myself into not vomiting all over you.

I'm posting some pictures of the radiation process. The first is of the radiation room. Once I'm on the table and locked into place, the table slides under the arm of the radiation machine and the circular mechanism on the underside of the arm drops down to apply the radiation, first on one side and then on the other. The second picture is of the much ballyhooed head mold. The tape--and more particularly the lines on the tape--indicate the area that is radiated. Every time I look at the head mold, I think of Han Solo in "Empire Strikes Back." I don't know why because there aren't many similarities between my plastic mesh head mold and the solid carbonite block in which he is imprisoned. I'm guessing it's just a delayed manifestation of my boyhood desire to be like the captain of the Millennium Falcon. : ) The third picture is of me on the table, locked in place. If you look closely, you can see me smiling for the camera.

In a random aside, I'll probably watch some football this weekend. Nebraska plays USC in the big game of the day. In case you don't know, I've never been a big fan of Coach Callahan. But I may undergo a conversion if the Huskers manage to eke a win. Notre Dame also plays Michigan on Saturday in what is undoubtedly the most pathetic meeting ever of the two winningest teams in college football history. At least Notre Dame has a chance to win this one.

Gotta keep me radiated.

Hi! Today I had my first dose of whole brain radiation. Like the Gamma Knife procedure, it was largely anticlimatic. The process of preparing for the radiation is far more interesting.

The most important thing when doing radiation is that they hit the right spots every time they do it. For Gamma Knife, they use a metal cage to lock my head in place. With whole brain radiation, they do things a little differently. They use a head mold instead. I had expected a head mold to be a big styrofoam box shaped to fit my head. I was way off the mark. The head mold is actually a mesh "sock" (for lack of a better term) that fits tightly around my head; think of a robber wearing a stocking over his face. The mesh is made of a material that I would describe as similar to the fiberglass tape they use to create arm and leg casts these days. The mesh itself has big holes in it; they are, in fact, almost the same size and shape as the holes in the metal guards that keep leaves out of my gutters in the fall. When they put this mesh sock on my head, it felt like a hot towel. The radiation therapists pressed it in around my eyes and pulled it out around my nose so that it conformed to my face. The only place it didn't conform to my face is the back, which they pull straight down to the table to lock into place. They left the sock in place until it hardened -- 15 minutes or so. When they finally slid my head out of the sock that first time, they were left with a rigid mold shaped like a box on one side (the back) and my face on the other (the front).

Today, when I went for my first dose of radiation, they took me into the radiation room. It looks very similar to the rooms where I have CT and MRI scans. They had me lay on a table, and then slid the head mold over my face and locked it in place. When the head mold is locked in place, I can breathe and talk and even open my eyes a little bit. But I cannot turn or lift my head. As this was the first dose, they took several x-rays to verify that my head was aligned correctly and then they did the radiation. The radiation laser (or whatever it's called) first zaps one side (left or right) of my head and then rotates to zap the other. They told me the radiation treatment would be brief. That was an understatement. I'd guess it took less than two minutes. And then it was over . . . until tomorrow. I will have radiation every weekday for three weeks, always at 2:00 pm.

I also received my prescription for Temodar today. I will take my first dose tomorrow. This is supposed to be a relatively low-dose chemotherapy treatment so hopefully the side effects will be minor. The doctor gave me a prescription for Zofran, an antinausea medication. It would be nice if I didn't need it. The other likely side effects of radiation and Temodar are fatigue and hair loss. The radiation actually burns the skin, and I'm supposed to avoid sunlight if possible. Don't be surprised if you see me wearing a skull cap sometime soon. Or maybe a pirate bandana. Jack would like that!

News From Houston

Hi y'all! I just got back to my hotel room after my visit with Dr. Legha. He looked at the CT scans and said they show that the existing tumors in my abdomen have grown slightly and that there are at least four more tumors. The new tumors are both in the liver and outside the liver, between the kidneys and liver and pancreas. He acted concerned but not panicked about these. He said the primary focus right now is to treat the brain. At the same time, he said it is critical to hit physical therapy hard to regain as much use of the leg as possible and to minimize muscle atrophy in the leg.

Dr. Legha said I should proceed with whole brain radiation, which I am scheduled to start on Wednesday. He said I should complement the radiation therapy with a chemotherapy drug called Temodar. Temodar is an oral chemotherapy that "interferes with cell growth" in the brain. It generally does not affect tumors in other parts of the body. Dr. Legha said the tumors in my abdomen, although larger and more numerous, are stable enough at present that we do not need to treat them at this time. He said it is more important that we get the brain metasteses under control and regain strength and functionality in the leg. Once we deal with those issues, we then can pursue chemotherapy treatments for the abdominal tumors.

The only other possible treatment we may pursue in the near future concerns the subcutaneous node on my right ribcage. This surface tumor, which was growing under the skin, has begun to penetrate the skin. Dr. Legha said I should talk to the radiologist about using radiation to treat this tumor before it breaks through the surface of the skin. He said we can wait to apply radiation therapy until the node begins to cause pain (Dr. Legha said it will become tender and sore as it nears the surface of the skin).

So that's the long and short of it. I was happy to hear him say the cancer has not metastasized to my lungs. I'm even happier that I can pursue treatment at home and that I should be able to attend my brother's wedding in October. But as much as I try to put a positive spin on things, the fact is that the news--once again--is not good. I would be so grateful to hear a doctor just one time tell me something that is undeniably good. As in "all of the tumors are smaller" or "some tumors are gone." There's no point getting too distressed about things, and I continue to hope that future treatments will lead to good news in the future. It's this hope that helps me stay positive about the whole situation. But, as my neurosurgeon Dr. Mueller said to me, "You've had a grand slam hit against you," and each time I hear that the scans have detected another tumor or that my LDH levels are up (LDH levels provide an indication of tissue damage in the liver) it feels like another batter hitting one over the fence.

But that's enough about me. : ) I need to send out thanks to all the people here in Houston, who have made this an enjoyable trip. We ate a delicious Italian dinner--prepared by a native of Rome, which is the best way to get an Italian dinner--on Friday night at the home of Stefano and Betty (Hanigan) Costantini. Betty was my babysitter when I was a kid. She has four impressive children, two handsome boys (Mattheo and Tomaso) and two beautiful girls (Anna Maria and Isabella). The whole family made me feel right at home, and I hope I get another chance to visit Ristorante Costantini! We followed that up with an authentic Texas barbecue with Jerry Toomey, his wife Margaret, daughter Ann, and son-in-law Greg. Jerry is an ND grad, and Ann and Greg have a son who is a senior at Notre Dame. We were joined by Cathy Connors, the president of the ND club of Houston. We watched the Notre Dame v Penn State game. The football skills of the Fighting Irish were the only disappointing part of the evening. The dinner was prepared by Margaret, who has proven time and again to be a master chef. The Toomeys offered to take us out to dinner or have us over for a meal in their home. The decision was a no-brainer: a meal in their home is better than any restaurant I've ever eaten in. Tonight we will be dining with my college roommate Kevin Gardner and his wife Melissa and son Trey. They are always so welcoming when I come to town, and it's fun for me to see how much Trey has grown between visits. He's one of those kids who just make you smile when you see him. With friends like these, it's no wonder I'm almost beginning to feel like a Texan!

And thanks to everyone for posting their blogs. Please don't feel guilty about not posting or not emailing. I know you're out there, and the fact that you even read the blog humbles me. And no, you're not technologically challenged if you can't figure it out. I work with computers for a living, and I still come across things on the Internet that leave me perplexed and cause me to give up.

Finally, thanks to my sister Michelle for accompanying me on this trip. It has been a real privilege for me to spend so much quality time with her. She was eight years old when I moved away to college so I have missed out on so much that has happened in her life. I have enjoyed getting to know her better during our time together, and I am awed by the person she has become. And the best part is that we have resolved all of the world's problems in the last four days and are ready to provide personal counseling to Britney Spears whenever she is ready to get her life in order. : )

Take care y'all!
Jeff