Saturday, December 29, 2007

A cancer treatment primer

Hi! Yesterday I had my second cycle of Ipilimumab, the antiCTLA-4 drug that is part of the clinical trial I'm doing right now. My friend, Colin Hutt, served as my chauffeur through some rough winter weather and kept me good company for the day. It was his first time in an oncology clinic--I told him that was a good thing--and he asked some good questions about the different cancer treatments I've done. I thought if he had questions, others probably did too, so I'm posting a quick primer in case anyone else has trouble keeping all this stuff straight.

1. surgery -- surgery is usually the best option for cancer treatment. It is most effective in early stage cancers or when a tumor is causing problems with a bodily function. The removal of a mole, a masectomy, and my craniotomy are examples of surgery.

2. radiation -- radiation is the use of radio waves to target and kill a tumor or tumors. It is typically used in areas where surgery is not an option or when a large area of the body needs to be treated. The radiation is harmful to healthy tissue as well as cancerous tissue, so it has to be done very precisely in high doses (as was the case with my gamma knife procedure) or applied to a wider area in low doses (as was the case with my whole brain radiation) to minimize damage to healthy tissue. Receiving a dose of radiation is very similar to getting an x-ray or CT scan. The patient lays on a table, everyone leaves the room, and the radiation is applied to the affected area. Side effects of radiation vary depending on where it is applied. In my case, the whole brain radiation damaged most of the hair follicles on my head so I lost large patches of hair on both sides of my head but no where else. That's why I have a goatee and a stubbly mohawk right now.

3. chemotherapy (aka chemo) -- chemo is the use of toxic drugs to kill cancer throughout the body. Chemo drugs may be administered orally or infused through an IV. Chemo drugs target fast-replicating cells because cancer cells replicate faster than normal cells. Unfortunately, the drugs also affect healthy cells that normally replicate quickly, such as hair cells or the cells that make up the intestinal lining. This explains the common chemo side effects of hair loss (over the whole body), nausea, and diarrhea (among others). The main thing to remember about chemo drugs is that they are poison. A person who is on chemo treatment is being poisoned. I tell people that you cannot understand what chemo is like unless you've done it yourself. In many cases, it is a horrible experience for the patient.

4. bio agents -- what I call bio agents are drugs that boost the immune system. Usually infused through an IV, these agents work with the body to help the body's natural disease-fighting components to destroy the cancer. Interferon and interleukin are the two bio agents that were part of my biochemo treatment in Houston. The antiCTLA-4 drug I take now is a bio agent. Because bio agents work with the body, they tend to have mild side effects compared to chemo. Rashes, diarrhea, and fatigue tend to be the most common, although autoimmune disorders are a possibility. Here is something that might help you see the difference between chemo drugs and bio agents: When a nurse accidentally drips a chemo drug on the floor, the area around the drip becomes a toxic waste site. People have to wear protective gear and use special methods to ensure the area is safe. When a nurse accidentally drips a bio agent on the floor, however, she simply wipes it up with a kleenex and throws it in the trash.

That's a very broad overview of four common cancer treatments. It doesn't cover everything and it certainly isn't complete. Hopefully it gives you a little better understanding of the whole cancer treatment process.

Finally, on an unrelated note, I've got to send out props to Colin for his help and companionship yesterday. He made the day much more pleasant than it should have been. Thanks also to our good friend Dale Cox for snow blowing the six inches of snow off our driveway last night after what I'm sure was a long day at work for him. We are so blessed to have neighbors who take good care of us!

Jeff

PS. What kind of an uncle am I? I forgot to mention the best news of the past week: my brother, Michael, and his wife, Victoria, are the proud parents of Timoree Jade, a beautiful little girl born Dec 26. You can see pictures of her on Michael's My Space page.

Thursday, December 20, 2007

Merry Christmas!




Hi! I've always liked the tradition of Christmas cards. They let the people who matter to us know they matter to us, even if we don't see them very often.

With that in mind, we decided to post the Dodd Annual Christmas Letter on the blog this year. There are just too many of you who matter to me! As is usually the case, this year's letter is in the form of a song ("The Twelve Days of Christmas"), and I expect all of you to sing along (you can ignore the parts in parentheses; those are just for clarification). Hopefully, our letter will bring you a moment of merriment.

Please know that I appreciate all of your prayers, encouragement, support, and offers of assistance in the past year. You all deserve to have the best Christmas ever!

Merry Christmas!

Jeff, Kelly, Aubrey, Regan, Jack, and Finn

PS. Just click the images to enlarge them.

Tuesday, December 18, 2007

Brain Scan All Clear

Hi! I met with my neurosurgeon and neurooncologist today. They both were very happy with the results of last week's MRI; the scans, which evidently were done in thinner slices than previously so to show more detail, showed that my brain was free of active mets (metastatic tumors). What a relief.

I told the doctors about the incessant fatigue and low-grade nausea I've been experiencing since late October. They said it's probably related to three things: the after-effects of the whole brain radiation, the medications I'm taking, and the cancer itself. The neurooncologist recommended that I try taking a drug they normally give people with narcolepsy. He thinks it might take away some of the fatigue. That would be nice. I missed Aubrey's Christmas concert last week because I was sick, and I missed Regan and Jack's concert tonight because I'm so tired. All I have to do is check with the doctor who is administering the antiCTLA-4 clinical trial to make sure this other drug won't interfere with the trial.

That's all there is to report from my doctor visits today.
Jeff

Monday, December 17, 2007

It's snowing all over (except where it's not)




Hi! For those of you in Phoenix, Houston, and other warm weather locales, I wanted to share these pictures of our front (top) and back (bottom) yards that Kelly took on Saturday. We've had 23 inches of snow so far this month (December). Fortunately, we've avoided much of the ice that struck so many of you in Kansas and Nebraska. Even more fortunately for us, my good neighbor, Mark Murphy, and his industrious sons, Abe and Ben, have stayed ahead of the weather and kept our driveway clear of the drifts. Thank you, thank you, thank you Murphys!



I meet tomorrow with the neurosurgeon and neurooncologist to discuss the brain scans I had last week. I'll keep you posted.

Jeff

Friday, December 14, 2007

What the @%#&, God?

Hi! Anyone who knows me knows I pray frequently. If prayer is simply conversation with God, then I would say I'm in some sort of informal prayer for a good portion of the day. I don't say this to boast but merely to state a fact and to perhaps justify why sometimes the only prayer I can say lately is 'What the @%#&, God?' Consider it the crass modern equivalent to Christ's prayer on the cross: "Eloi, Eloi, lama sabachthani” (My God, my God, why have you forsaken me).

I never prayed this prayer before the last year. It's not the kind of prayer you say casually. It means little when you say it because you caused a car accident or didn't get a job or were involved in some other relatively minor mishap. The first time I found myself praying it was while crying on my knees in the bathroom of the oncologists office back in January. I didn't know what else to say to Him at the moment, and it really didn't matter what He had to say in return. I was just mad and confused and hurt, and it seemed like that brief ejaculation (that's what the nuns in grade school taught us to call short prayers) pretty much covered everything.

I've said the prayer many times in the past year. And I found myself saying it again last night, though not on my own behalf. I had just heard a story about a local pastor, Gary, and his wife. Pastor Gary is minister at St. Matthew's Lutheran Church here in Wauwatosa. We have several friends who belong to the parish, and even though we're not parishioners there the church has been supportive of me and my family during the past year. Two of the parishioners made me prayer shawls, I have received letters of encouragement from some of their prayer groups, and Pastor Gary came to visit me while I was in the hospital after my brain surgery. He was a very nice man, easy to talk to, and he seemed very happy. Then last night I heard that his wife had been diagnosed with uterine cancer three weeks ago and that she died two days ago. Can you imagine that? Less than three weeks from diagnosis to death? Maybe in other years I would have found myself saying a quick prayer for her soul and thinking little more about it. But as I lay in bed last night, all I could think was 'What the @%#&, God?' I'm guessing Pastor Gary is saying the same prayer--probably in nicer language--himself right about now. If he is, he probably knows he won't get an answer that clears up his confusion or brings him comfort. But sometimes that isn't the most important thing. God just needs to know what we're thinking.

Friday, December 7, 2007

Trial started, one cycle down

Hi! Today I completed my first cycle of ipilimumab, the antiCTLA-4 clinical trial drug. It really was as easy as promised. I was indeed able to eat during the infusion, we watched part of a movie on our laptop computer, and the only noticeable side effect I've had so far was sudden fatigue right at the end of the infusion. I felt like I could just close my eyes and go to sleep. But I can deal with fatigue. I have three more infusions scheduled once every three weeks: 12/28/07, 1/18/08, and 2/8/08. Those are all Fridays, which means I'll have a full weekend to recover if necessary after each one. After that I get scanned and, if it looks like I've responded to the treatment, I go into the "maintenance" phase of the trial, which means continued infusions but at less frequent intervals.

A couple things made me feel good about my treatment today. One was that the other melanoma patients I saw at the doctor's office all looked better and older than I did (none of them had canes, all had full heads of hair, and they were all a bit overweight). I take it that's a sign that ipilimumab can work. I also was glad to hear the nurse say every patient they've treated on this trial at their office has gone on to the maintenance phase, which means everyone has responded at least in some degree to the drug. Again, I take it that's a sign that ipilimumab can work. I hope I'm not the exception.

Kelly and Finn came with me today. The nurses all loved Finn, of course. I was just an afterthought really! : ) My sister, Mary Margaret, stopped by to say hi while I was there, too. All in all, it was a good experience and I'm already looking forward to the next one.

Thanks to everyone who helped out with the kids today, especially the Due's and the Murphy's (and to Mark for shoveling us out once again!). I don't know what we would do without such wonderful friends to help us!

Jeff

PS I wonder if anyone can give me an answer to an unrelated question: do you know of a place where a person can buy movies that have been edited for content for presentation on airplanes, cruise ships, or even TV? I ask because Kelly and I were watching "Love Actually" during my treatment today. It's one of my favorite movies. The first time I saw it was on one of my brother's cruises, when it had been edited for content. Then when I saw it on an actual DVD, I was shocked at some of the content and for that reason I always hesitate to recommend the movie to anyone else. I wish I could get a cleaned-up copy of the movie so I could share it with others.

Wednesday, December 5, 2007

Bring on the trial

Hi! Well, I finally received confirmation from Dr. Richards' office in Chicago that I will be starting the antiCTLA-4 clinical trial this coming Friday. My understanding of how the trial drug, which is called ipilimumab (try saying that three times fast), works is still quite limited. All I have been told is that the first infusion will take approximately 90 minutes and should have limited side effects. In fact, the chemo nurse who called to set up the appointment said I could bring lunch and eat during the infusion. I'll believe that when I actually do it! Subsequent infusions are, I believe, every three weeks for only sixty minutes.

I don't think I'll need any help getting to and from this first appointment. Kelly happens to have an open calendar Friday, and my appointment is at 11:00, which gives us plenty of time to get the kids off to school before we leave. I may be contacting a few of you to see if you're able to keep an eye on Regan and Jack after school until we get back from Chicago. Thank you to everybody who responded to volunteer to help me with these trips to Chicago. I have taken your names and may be contacting you to take you up on your offers when I go down for future infusions.

I also want to extend a big thanks to our wonderful friends and neighbors who have helped keep our driveway clean of snow and ice following a couple of messy six-inchers in the last week. I don't know how we got so lucky to live near so many great people!

In other news, we decorated our Christmas tree this past Sunday night. My dad put it up for us when he and my mom were here last week. The kids had a good time. Normally it's my job to hang the lights, but I didn't think I should be walking around and around a Christmas tree dragging long strands of electrical wires behind me and my cane. Aubrey did the job instead and the results are fantastic. Now we've got lights twinkling on the tree, Christmas music on the radio, kids outside sledding in the snow; it's definitely feeling like the holidays. If I remember, I'll take a picture of the kids around the tree and post it on the next blog.

Jeff

Wednesday, November 28, 2007

Waiting on scans


Hi! We had a wonderful Thanksgiving holiday. Kelly's mom, grandma Ruby, sister, brother, and their families came to Wauwatosa for the weekend, which was a lot of fun. Then my parents swung up from Chicago for a few days after the holiday, so we got to see them too. The weather largely cooperated with everyone's travel plans and I think a good time was had by all. : )

This past Monday, Kelly and I drove down to Chicago to visit Dr. Jon Richards. He is running a clinical trial that I hope to start soon. He made a good impression on all of us (my parents rode along with us). Before I can start the trial, I have to do some CT scans and get an EKG. I did the scans today and do the EKG this coming Monday. I'll keep you posted about when the cycle of treatments will begin. It doesn't sound too bad: one infusion every three weeks for 60 or 90 minutes. I don't know any specifics yet, but I do know I don't want to try comforting a baby during an infusion or driving myself back to Milwaukee after an infusion. For that reason, I may need some help on the days I go down for my treatments. If anyone is interested and able to be my driver and Finn's babysitter during my trips down to Chicago, please let me know. We can take my van and I'll buy you lunch!

One last totally unrelated note I've been meaning to add to the blog for several weeks: my cousin's husband, Michael Ray Tyler, is a professional musician in Las Vegas. Many of you have heard Michael perform and know how good he is. He has just released his latest CD of light jazz music. Doubleclick the picture above for details about how you can get a copy for yourself.

Jeff


Tuesday, November 20, 2007

An early holiday greeting

Hi! I know it's early but I thought some of you would get a kick out of this holiday greeting featuring Aubrey, Regan, Jack, and Finn: http://www.elfyourself.com/?id=9557849883.

Finn had his six-month checkup yesterday. He's 27 1/2 inches long and weighs 16 lbs 1/2 oz. That puts him in the 80 percentile for length and 25 percentile for weight and 100 percentile for cuteness (I think all babies somehow manage to get into the 100 percentile for cuteness).

Jeff

Sunday, November 18, 2007

Aubrey's a cheerleader



Hi! Not much to report. I go to Chicago on 11/26 to visit a doctor; that's when I'll hopefully get all the details about my next round of treatment. Until then, we're getting ready for the holiday weekend. Kelly's family, including her grandma Ruby, is coming to visit us for the weekend. It will be great to see them all and have them around for several days. I've been working the kids hard to get the house and yard clean in anticipation of their visit. They've done a terrific job keeping up with my orders! : )

I'm posting a picture of Aubrey in her full cheerleading glory because I thought some of you would be interested in seeing it. The second picture is proof of what can happen to you if you're a six-year-old boy who has a cheerleader for a sister. She and her friends think it's funny to dress him up, and Jack doesn't seem to mind. We tell ourselves he's too little to know better! : )

We'll post more after Thanksgiving.

Jeff

PS If you have a hard time seeing a picture, double-click it to enlarge it.


Sunday, November 11, 2007

Happy Birthday to Kelly




Hi! Today is 11/11 and that means it's Kelly's birthday! We celebrated by spending the weekend at the Illinois Beach Resort, just north of Chicago. The parents of my brother-in-law, Bryan Clay, gave us a voucher for a free weekend there. Illinois Beach is a state park right on the shore of Lake Michigan, and many of the rooms at the resort have lakeside views. We had something better. As soon as we got to our room, Regan and Jack opened the curtains and screamed with joy: from our room, we could see right into the indoor pool area! Of course, that's where we spent most of our time. Even Finn and I got in on the action. I took a dip in the whirlpool, and Kelly took Finn in the big pool for close to an hour. He didn't want to get out! I guess he's just like Aubrey, Regan, and Jack in that regard. We can't thank Bruce and Nell Clay enough for the wonderful getaway.

I'm posting some pictures we took while we were away. That's Regan floating, Aubrey drying off (yes, it's a fake!), and big brother Jack showing Finn how to watch TV!

Jeff

Monday, November 5, 2007

Bad Blood

Hi! I received a call today from Dr. Joseph Clark at the Loyola Medical Center. The bad news is that my blood tests came back and did not show evidence of the antigen needed for the antiCTLA-4 trial he is conducting. The good news is that he referred me to another doctor in Chicago who is running an alternative antiCTLA-4 trial that has very few requirements so I should be able to get into it. I am going to contact that doctor tomorrow and see how soon I can start (assuming that I can). For anyone who's interested, here is a link to info about this new trial: http://www.clinicaltrials.gov/ct/show/NCT00495066?order=1.

We'll keep you posted as we get more information.
Jeff

Friday, November 2, 2007

A Chicago Update

Hi! Kelly and I went to Chicago today to meet with Dr. Joseph Clark at the Cardinal Bernadin Cancer Center at the Loyola Medical Center. Dr. Clark is an oncologist who specializes in melanoma, and he is involved in a clinical trial involving the antiCTLA-4 antibody. According to Dr. Clark, the antiCTLA-4 antibody is attracting a lot of attention for its potential in treating melanoma.

I don't have a full understanding of the science involved, but here's my layman's understanding of how it works: when the body detects an invader, like a virus or a cancer cell, it tells the immune system to attack it. But it cannot let the immune system run unchecked in its attack so it uses a regulatory mechanism called CTLA-4 to reign in the immune system. Scientists think the antiCTLA-4 antibody will suppress CTLA-4 thereby allowing the immune system to keep fighting the melanoma cells in full attack mode. I'm sure any scientists reading this will shudder in horror at the many errors in my description but I think my general idea is correct.

In order to be a part of Dr. Clark's antiCTLA-4 trial, I have to meet certain requirements. One is that my blood has to contain a particular antigen. And another is that I cannot have any cancer activity going on in my brain. I did a blood test today and will find out in a week or so whether I have the particular antigen. And I will have to do another MRI later in November to verify that the brain mets are under control. If I have the antigen and the brain mets are stable, I will be able to start the clinical trial after Thanksgiving. This is what I'm hoping will happen.

Fortunately, I have another option if I cannot get into the trial. Dr. Clark said there is another antiCTLA-4 trial going on at another hospital in Chicago right now. It is called a "compassionate use" study because it is open to anyone. The difference between the studies is that Dr. Clark's trial actually involves a pair of treatments (antiCTLA-4 and a melanoma vaccine) whereas the "compassionate use" study only involves antiCTLA-4.

So that's where things stand today. I feel good about my visit. I liked the atmosphere at the Cardinal Bernadin Cancer Center, and Dr. Clark really impressed me with his knowledge and personality. What makes me feel best about the whole thing, however, is Dr. Legha's reaction. When I told Dr. Legha that I would be meeting with Dr. Clark to discuss an antiCTLA-4 treatment, he was very pleased and said this is definitely his first preference for my future care. His blessing gives me confidence that we're heading in the right direction and once again giving
our best shot. I am so glad he's driving this boat.

PS. Here's a link to a page with info about Dr. Clark's trial (his trial is actually just one location for a national trial) for anyone who's interested in reading technical information about it: http://clinicaltrials.gov/ct/show/NCT00094653?order=2

Wednesday, October 31, 2007

Hopefully A Trial

Hi! I heard back from Dr. Legha today. He encouraged me to get treatment for my abdominal lesions as soon as possible but said that I would not necessarily have to come to Houston. He recommended two possible options: an anti-CTLA-4 treatment that involves a Phase III trial medication or an Abraxane and Sorafenib drug cocktail. Thanks to my brother-in-law Bryan, I had just last week learned about an anti-CTLA-4 trial being conducted in Chicago so I made an appointment to be screened for it. My good luck in getting appointments quickly held up again today; I meet with Dr. Clark at the Cardinal Bernardin Cancer Center at the Loyola Medical Center on Friday at 10:00 a.m.

I don't know much about either of these two options at the present so I can't tell you anything more about them. I do know there are certain criteria I have to meet to qualify for the trial. From what I can tell, I think I meet most of the criteria. I won't know anything for sure until I get down there, though. We'll keep you posted.

Jeff

Tuesday, October 30, 2007

A Brain Scan Update

Hi! Today I had appointments with Dr. Mueller (top left), my neurosurgeon, and Dr. Malkin (top right), my neuro-oncologist. They reviewed the results of a brain MRI I had on October 18 and seemed pleased with the results. I was a little shaken by the news that there were two "millimeter sized" (their words) mets in the frontal lobe, but neither doctor seemed concerned about these and both doctors said the mets were "stable" (whatever that means, right?). Both doctors say I appear to have responded well to all of my brain treatments so far, and Dr. Mueller said he feels like, from a brain perspective, things are heading in the right direction. The doctors ordered a new MRI in six weeks to keep an eye on things. They also gave me the all clear to pursue treatment of the abdominal lesions, which continue to grow and multiply. I asked both doctors what they would do if they were in my shoes and both said the same thing: talk to Dr. Legha (bottom) and do whatever he tells you to do.

I can't speak highly enough about all of these doctors. Not only are they top-rate physicians, they're also caring, listening human beings. Several times during my appointment today, for instance, Dr. Mueller made a point of saying how good it was to see me--and he says it just that plainly. It really makes me feel like these doctors care about what happens to me, which is exactly what you want when you're going through an experience like this. Once again, I feel like I have really been lucky in the medical team that has treated me throughout this entire ordeal. (I'm including pictures of all doctors so you can put faces to names.)

I contacted Dr. Legha and am waiting to hear back from him about what he recommends we do next. I'll keep you posted.

Oh and I have to make a public apology to Kelly. After the appointment, I came home, got Finn from the neighbor (thanks for babysitting again Katie!), ate lunch because I was starving, and then sat down to type an email to Dr. Legha. I was so absorbed in all this that I totally forgot to call Kelly. After four hours of fretting and not being able to eat and worrying that I was being strapped into a frame for another gamma knife procedure, she finally called me wondering about the news. I certainly deserve to be put in the doghouse for this one. Thank God I married a wonderful--and understanding--woman! : )

Monday, October 29, 2007

A Healing Sunday

Hi! Yesterday (Sunday) we went to the Holy Hill National Shrine and Basilica for the monthly healing mass. Some of you who have visited us here in Wisconsin have had the good fortune to visit Holy Hill (http://www.holyhill.com). It is a beautiful church on a remarkable site and is run by the Discalced Carmelites. A good friend and fellow ND alumnus, Bob Johnston '59, told us about the event and invited us to attend. He also invited several other local ND alumni to join us. The mass was nice, but the best part was immediately afterward when we (Kelly, the kids, Bob and his wife Margaret, and another fellow alumnus, Peter Schwabe '88) met with a healing minister, who blessed us with holy oil and said some prayers with us. It was not the Sacrament of the Sick, but the good graces were flowing all the same.

Afterward, the Johnstons and the Schwabes hosted us for dinner at The Fox And Hounds, a wonderful restaurant near the basilica. It was exactly the kind of restaurant I like, with a unique atmosphere and excellent food. The company just made it all the better! It reminded me of how fortunate I am to be part of the ND family, who have been so supportive of me and my family throughout this entire ordeal. Go Irish!

Jeff

Wednesday, October 24, 2007

Another Cycle Complete




Hi! Today is Day 42 of my 42-day Temodar chemotherapy cycle. That means the cycle is officially over. Most oncologist offices have a bell that patients can ring when they complete a cycle. Since I finished my cycle at home, I had to make do with a tiny crystal bell Kelly and I got on our wedding day. It may not make much noise, but I'm not going to miss this chance to celebrate!

Next week, I have a visit with the neurosurgeon and neuro-oncologist here in Wauwatosa to discuss my latest brain MRIs. I'm not sure where things go from there, but my assumption (based on a hope that the MRIs do not show the presence of new brain mets) is that I will be going down to Houston mid-November to discuss a new treatment for the abdominal lesions. Hopefully it will be something I can do at home.

I just received a new ankle brace at Physical Therapy yesterday. My old brace was a stock model that held my ankle at a 90-degree angle (the brace stabilizes my ankle and holds my foot up so that it doesn't drag when I walk). The new brace is molded to my exact leg shape and holds my ankle at an approximately 75-degree angle (in other words, it pushes my toes up). This actually pushes the toes out of the way so that I can swing my left leg directly forward when I walk rather than circumducting it (i.e. swinging it out to the side).

Since getting back from our little vacation, I have been holding down the house during the days. Our wonderful neighbors, the Murphys, let me borrow their nanny, Katie, to watch Finn during some of my PT and OT sessions. What a huge help! Katie has been their nanny ever since Abe (their oldest, who is in Regan's class) was a baby. She knows our kids well, and we know she is a great caregiver. We also have had friends and neighbors delivering hot meals several nights each week. This has been such a gift to us because I'm pretty much worn out by the end of each day and Kelly has enough other things to do when she gets home without spending a couple of hours at the stove. Plus, the food has been excellent! I don't know when I last ate so well!

I'm posting some pictures Aubrey and her friend, Caroline, took of Finn recently. The other picture is of Aubrey, Regan, and Jack before the Wilson School Fall Social. They dressed up as a Spice Girl, a punk rock girl, and a pirate respectively.

Jeff

Monday, October 15, 2007

Back to the real world




Hi! Well, we're back from our family vacation. Aubrey calculated that we spent 41 hours in the van, not including the little trips to and from restaurants, tourist attractions, and the like. The kids somehow made it, though, and so did Kelly and I. We had a great time (see pics) and now it's back to the ol' grind.

During our trip, I saw so many friends and relatives. Of course, there were lots of inquiries about how I was feeling. I think there were also lots of unspoken questions about how I am doing. I figure the best way to answer that is on this blog entry.

"Woke up with a heavy head and thought about leaving town.
Could have died if I wanted to, stepped over the edge and drowned.
Oh no, babe. I won't give up that easy now. . . ."

To those who saw me, I'm sure I looked fine on the outside. I lost hair from radiation, but the low-dose chemo did not cause me to lose hair so my beard and eyebrows were still thick. I wore a knit cap to cover the crazy patchwork of hair that remained on my head (it has now dwindled to a small triangle at the base of my skull and a mini-mohawk on the crown of my head). Other than that, I probably looked quite normal.

Unfortunately, I felt quite miserable for much of the trip. My radiologist said the fatigue from whole brain radiation would peak at the end of treatment. He wasn't joking. I really hit the wall of exhaustion on day 13 (of 15) of radiation and it continued for a full week: right during the wedding and the early part of our trip to Colorado. Physical activity was a major effort, the fatigue accentuated the nausea, and speaking a few sentences--or even several words--put me out of breath. Driving only made things worse. And then there was the constant reminder, every time I tried to stand or move, that half of my body didn't want to behave the way it should and I couldn't get around like I wanted. Anyone who knows me knows that I'm an active person. I like to be doing, doing, doing. Having to sit, sit, sit is just plain maddening to me.

So it shouldn't come as a surprise to anyone to say I'm a tad frustrated with the whole situation. But that's not the full answer to the question.

"Don't you ever get lonely? Don't you ever get down?
Don't you ever get tired of all the wicked tongues in this town?"
Before my diagnosis, I had read an article titled something like "10 things you should never say to someone with cancer." I don't remember any of them and, frankly, I haven't had too many people say too many stupid things around me. Probably the worst comment I've heard was from an acquaintance who recently told me, "I thought you were really debilitated but you seem to be getting around great." I felt like saying "Look lady, I can't move my left leg, I'm walking with a freaking cane, and it takes all my concentration to keep from falling on my face. How do you define debilitated?" But for the most part, people have said the right things and been very encouraging. Let me give you an example.

After my brother's wedding, I was sitting in the back of church waiting for everyone to clear out. My aunt Rosalie walked quietly up to me and said four simple words: "You keep fighting this." It was the kind of polite order that only an aunt can give you. But it was exactly the type of thing I like to hear. Why?

For one thing, her comment recognizes that I am involved in a fight. My aunt knows something about this. Her son, my cousin, has been battling a form of sarcoma for four years. She knows that cancer is not like most other diseases or medical issues; it isn't something you tackle in one surgery or a bottle of pills. It's an interminable crusade that requires your full attention for weeks, months, and sometimes years of ongoing treatment.

Second, her comment implies that my efforts at fighting cancer have so far been worth it and should be continued. That's important to hear. Going through various rounds of treatment with little to show in terms of improvement is quite discouraging. And yet, if this battle is to be won, the fight must go on just as vigorously as it has been carried out so far. So many of you remind me of that with your kind and thoughtful comments. And I'm lucky to be surrounded by doctors and therapists who not only provide excellent care but also know what to say to motivate me to get better. When Dr. Mueller says "You're a tough son of a gun" or my physical therapist says "You walk surprisingly well given how few muscles are working in your leg," it makes me want to keep working as hard as I can for a positive end result.

"I ain't no tiger. Ain't no little lamb.
Suppose you tell me mama, who do you think I think I am?


So how am I doing? Pretty darn well, I think. There are bad days, but my outlook remains positive. I have never asked my doctor for a prognosis, and gratefully my doctors have never given me one. What they have given me is a reason to hope that, because of my age and otherwise good health and positive attitude, I can keep this disease at bay for as long as possible. I feel like I have no time to waste on self-pity, and I am glad that my doctors seem impressed by my attitude and perseverance.

I do sometimes worry that someone might see me on a day when I'm feeling sick or tired and draw the wrong conclusion about my commitment to this fight. I would encourage anyone who feels that way to find an old copy of Don Henley's "I Will Not Go Quietly" and listen to it. In the song, he sings about a failed relationship but the words sum up my attitude toward this whole ordeal (and they're driven home brilliantly by Axl Rose--who has what is arguably the most defiant voice in rock history--on backup vocals):

"I'm gonna tear it up. I'm gonna trash it up.
I'm gonna round it up. I'm gonna shake it up.
Oh baby, I will not lie down.
Turn this thing around. I will not go quietly.
I will not lie down. I will not go quietly."

Jeff

PS. On a slightly related note, my occupational therapist marveled when I told him today about my first time driving a car since my craniotomy on August 11: I took the van from our hotel in Colorado Springs to the top of Pikes Peak--solo--for something to do while the kids swam all day in the pool. I hit a small-town cafe for lunch and drove with the windows down all the way to the peak. Talk about a rocky mountain high!
PPS. Nebraska just fired Steve Pederson. Now all they have to do is rebuild the 30+ years of tradition that he singlehandedly destroyed in the name of eradicating "mediocrity".

Wednesday, October 10, 2007



Hi! We're currently living the high life for several days here in Colorado Springs. After Michael's wedding last Friday (top picture), we headed west for a little vacation. Heaven knows we needed one. The kids have had a great time, of course. Today we went to the Garden of the Gods, and they climbed all over the rocks (bottom picture). Swimming in a hotel pool and climbing on rocks: what more could a kid want from a vacation? : )

I don't want to spend a lot of time on the computer when I'm on vacation so I'm going to cut this short. I'll write more later.

Jeff

PS. Aubrey just found out she made the cheerleading squad at her middle school. I think they cheer primarily for the school's basketball games. She had to try out to get on the team and one of her best friends also made the team. We're very excited for her and proud of her. She's a great girl!

Sunday, September 30, 2007

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

Monday, September 24, 2007

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

Wednesday, September 19, 2007

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

Sunday, September 16, 2007

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

Friday, September 14, 2007

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.

Wednesday, September 12, 2007

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!

Monday, September 10, 2007

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

Friday, September 7, 2007

Back to Houston . . .

Kelly here. Jeff is undergoing scans in Houston today. He left yesterday in the company of his sister, Michelle, after a nearly two-hour flight delay. As most of you know, Jeff is quite debilitated and I was concerned about how he would get around the airport, but I hear Michelle very ably hoisted all of their luggage onto her back, shoulders and other available surfaces all while chauffering Jeff in a wheelchair. I have to say I'm a little jealous. Not only do I want to be the one travelling with Jeff and helping him--I'm also envious of her ability to lift more than four ounces. For those of you who don't know me, I have the physique of Olive Oil (or maybe an orphan from Mogadishu) and I'm probably flattering myself by even comparing myself to HER. (Although, I am building both strength and endurance by getting in about 50 reps a day of a 15 pound weight named Finn. He does NOT like to be put down.)

So, Michelle and Jeff arrived in Houston last night after a full day and night of travel. The good news is that they will be able to relax this weekend while they wait for Jeff's appointment with Dr. Legha on Monday afternoon. At the appointment, Dr. Legha will reveal the results of today's scans and give Jeff his recommendation for further treatment. Right now, the plan is for Jeff to return to Milwaukee on Tuesday and to begin Whole Brain Radiation on Wednesday. He'll also start back up with his rehabilitation sessions on Wednesday, too. Dr. Legha will possibly order some kind of treatment or chemotherapy to complement the woody and floral aromatics of the Whole Brain Radiation, but it will all depend on what he finds on today's scans.

In the meantime, we are left to wait and wonder (and hope and pray and think and contemplate and plan and not think anymore . . .). So, while I am busy not thinking for the next couple of days, I thought I should at least be busy thanking:

Thanks, Gretchen, for posting to the "Home at Last" blog. It made my day. I wish more people were like you: less worried about feeling funny or weird leaving a post than about simply reaching out. Thank you, thank you, thank you! I hope Gretchen's example will inspire those of you who haven't, to post a comment. We only know you're reading all of this if you let us know. And by reading this, you let us know that you are interested and that you care. And you can't possibly say the "wrong" thing . . . unless, of course, you are the person who has sent me 55 e-mails over the past week telling me how bitter and ungrateful I am and telling me that someday you hope I'll look back and get a good laugh out of all of this. That's a pretty good example of what NOT to say. It's also kind of a bad time to ask me for money. (Just a gentle reminder to the Police Auxiliary Guild that made it's second call to me in two days).

Thanks also to my brother, Jim, and his wife, Amy. They drove all the way from Alabama just to see us for 2 and a half days. Not only do they provide the two things I need most (humor and distraction), they also provided remarkably good housecleaning and babysitting services (Thanks, Amy!!) and surprisingly effective bee/wasp killing services (Thanks, Jim!!). The bee/wasp population in my outdoor shutters and eaves suffered a catastrophic loss this weekend when Hurricane Jim violently detroyed their homes, their families, and their pride. P.S. Amy, congratulations on your promotion to management!

Thank you, Roger, for your sincere inquiries and thoughtful advice. Thank you, George, for your counseling, guidance, and insanely funny (albeit sadly perceptive--HA!) self-deprication. Thank you, Liz, for your reliability and constant friendship and support. To everyone at work: You help me everyday more than you know. Thank you all.

Thank you, Barbara, for visiting with me and for holding Finn and making him laugh and smile. There is no sound sweeter to a mother than her baby's laughter. I think Dennis will understand when you tell him you have a new boyfriend! Ha!

Thank you, Jennifer and Mark, for fostering Jack's friendships with Abe and Ben. As a mother, it flatters me everytime your boys knock on the door and ask to play with Jack. They are the reason Jack wants to be good at sports and as young as they are, they are helping Jack immensely without even knowing it!

To the Wisconsin Lottery System/Powerball: Thanks for nothing.

OK . . . I could go on and on and I'm sure Jeff could list about 100 more thank-yous himself, but I have to go pick-up Aubrey from Cross Country practice. It's neat that she is following in Jeff's footsteps as a runner. I can run approximately six yards before getting winded--so I know she doesn't get it from me! Her first meet is on Tuesday after he gets home from Houston. I hope he'll have the energy to cheer her on after an early morning flight! Until then . . .

Be well.
Kelly

Tuesday, September 4, 2007

Birthdays & The First Day of School






Hi! I've been home for several days now. It's nice to be back in familiar surroundings, but it's tiring too. Just walking from room to room and up and down the stairs is a workout. I'm not used to being so incapacitated. I want to make meals, get the kids ready for school, do some household chores, and putter around the yard. But I can't. Fortunately, I can still write. I'll be working on an article later today, so that gives me something to do.




We've had lots of excitement around the house, too. Jack had a little birthday party on Saturday. Kelly organized some pirate activities in the backyard, then we took Jack, the neighbor boys, and his cousin Ashton to McDonald's Playland. I'm not sure what we'll do to celebrate his actual birthday, which is today. It's also the first day of school today. We dropped Aubrey off at middle school for her first day of 7th grade, and then took Jack and Regan to Wilson Elementary. Regan is starting 2nd grade and Jack is in all-day senior kindergarten (last year was half-day junior kindergarten). He was excited to pack his Spiderman lunch box and take birthday treats to school.




Kelly's brother Jim has been here since Sunday, along with his wife Amy and son Ashton. They've been very helpful. Jim mowed the lawn, and Amy has handled all of the cleaning duties. Plus it's just good to see them. They live in Alabama so we don't get to visit with them very often.




I'm posting three pictures: the first is from Regan's birthday party last weekend, the second is from Jack's birthday party on Saturday, and the third we took this morning when we dropped Jack and Regan off at school. We didn't get one of Aubrey. She was excited to talk to her friends before school started and ran off before we had a chance to get the camera out. Oh well. Such is life when you're 12 years old!




Jeff

Saturday, September 1, 2007

Home At Last

Hi! I'm home at last and writing this from our back porch. It's a pleasant 75 degrees and low humidity. I thoroughly enjoyed drinking my first pot of tea in more than three weeks and am enjoying even more the chance to eat lunch with Jack and Finn and Kelly (Regan has a bit of a fever and is inside watching TV; Aubrey is playing with her friend Caroline). I still have to do my therapy homework--strengthening exercises and some walking--and plan to watch the Notre Dame game later today. All in all, it's a pleasant way to spend the day.

Mom went down to Chicago for several days of R&R with Mary Margaret and Bryan. She certainly deserves a break, and I know she'll enjoy spending time in their new condo. Kelly's brother, Jim, and his family are coming up for a visit tomorrow. They live in Alabama so this is a big trip for them and we're glad they'll be here to help us celebrate Jack's birthday on Tuesday.

I hope you all have a fun and relaxing Labor Day weekend. It's hard to believe the next school year and autumn are right around the corner. One of my goals is to be able to rake leaves when they really start to fall next month.

Jeff

Wednesday, August 29, 2007

Homeward Bound

Hi! Today I received good news: I will be going home this Friday evening! We had my case meeting today, and the doctors, therapists, and staff agreed that I had made sufficient progress so that I could function at home with supervision and minimal assistance. That means I need someone to keep an eye on me when I'm walking around, going up and down steps, getting dressed, etc. to make sure I don't do anything to hurt myself. In other words, I've achieved the functionality of a three-year-old. But that's progress!

The next step is to visit Dr. Legha in Houston for CT scans and a checkup. Dr. Legha wants to see what the tumors in my liver are doing so that he can decide what type of chemo, if any, to administer along with the radiation. I made appointments to get scanned in Houston on September 7th and then I will meet with Dr. Legha on September 10th. That should get me back to Wauwatosa in time to start and finish three weeks of radiation before my brother's wedding on October 5th. I missed Michelle's wedding in April because of this cancer; I don't want to miss Michael's wedding too.

As enjoyable as my hospital stay has been--and it really has been enjoyable thanks to all of the wonderful people who work here at Froedtert--I look forward to going home. It will be nice to spend Labor Day weekend with Kelly and the kids. The college football season starts Saturday, so maybe I'll catch a couple of games, too. Go Irish! Go Huskers! Go Badgers!

Jeff

Tuesday, August 28, 2007

Darts, anyone?

Kelly here, reporting from the front lines. All is reasonably calm and things have been largely uneventful. Nonetheless, I wanted to post a quick update to keep you all interested. Jeff really thrives on all of your comments and it gives him encouragement when he sees how many of you read these posts and respond (hint hint!). So, here's the latest . . .

Jeff continues to work very hard in therapy. He is strengthening his left arm and continues to work on his left leg, but the leg is still largely uncooperative and progress has been slow. Apparently, no one remembered to tell this to Jeff because despite having virtually NO use of his left leg, he has been going up and down full flights of stairs in the hospital stairwell; he has been taking long walks around the rehabilitation gym; he has practiced balancing on his knees while simultaneously playing balloon-volleyball with a fairly competitive 8 year-old daughter; he has even made attempts to walk without a cane! I keep thinking he might notice that his left leg is not functional; that one of his therapists might have tipped him off, ("Uh, yeah. Um, Jeff. About your left leg--it doesn't work), but it's like the Chinese proverb states: "He who says it can't be done should not interrupt the person doing it." So, he's forging ahead and doing well despite his leg's current unresponsiveness. Besides, Jeff's therapists and doctors all believe the leg WILL recover--the questions are "how much use will he regain?" and "how long will it take?" Apparently, Jeff has decided he will regain full use now--the leg merely needs to get with the program and catch up. Jeff is motivated by the prospect of coming home and is trying to emphasize exercises that build strength and endurance so that the transition home is smooth.

The good news is that Jeff is reasonably close to being discharged and his therapists expect he will eventually walk without a cane. He got to come home for four hours on Saturday afternoon on a "Day Pass." The therapists encouraged him to try to maneuver around home to see where he might need to make special accommodations. He didn't use his wheelchair at all. He walked up the driveway and down two stairs into the kitchen with just his cane. He then walked into his office and sat at his desk for a while (I'll be annoyed if I find out he cranked-out a couple of articles while he was sitting there, but I wouldn't be surprised). He also sat in the kitchen for a while and even held Finny-pie. Then we had a big BBQ outside on the back porch where he sat at the patio table before walking back to the car and returning to the hospital. Based upon the successful Day Pass and upon his continued progress in physical therapy this week, his therapists hinted that he might be able to come home as early as this Friday! Woohoo!

The only downside to being discharged from the hospital, is that Dr. Legha wants to see him in Houston ASAP--as soon as he is discharged and before he starts Whole Brain Radiation. Dr. Legha wants to check Jeff's other tumors before deciding whether to put him on a chemotherapy drug during the Whole Brain Radiation. So, Jeff will not be able to relax and enjoy home much before jetting off to Houston for a couple of days.

In the meantime, we spent Regan's 8th birthday at the hospital last night with Jeff, Jeff's mom, Jeff's brother and sister-in-law and our family-friends, Tony and Cee and their sweet baby girls. We ate at the hospital cafeteria and brought a big chocolate chip cookie-cake. Regan opened her presents and the kids all played and visited with Jeff. Jeff even held Finn for a while--it's clear he's gaining more strength in his left arm every day.

And I have imposed one more little demand upon Jeff: he MUST dance with me a his brother's wedding in October. So, that's his deadline to get that leg working, or if it's not working, to figure out how to dance without it. (And, if he can't meet that deadline, I'll just move it back a little bit and a little bit more--I'm fickle like that. But he's not getting out of it). And although you probably assume I'm talking about a romantic slow dance, you're wrong. I'm talking full-on Running Man (M.C. Hammer style). (Tee hee!)

And one final note: Jeff played darts yesterday in recreational therapy. (I just thought it was funny that they let brain-injured people throw darts). Tomorrow is blind-folded skeet shooting while bungee jumping off the flight-for-life landing pad. I'll let you know how it goes.

Peace,
Kelly

Friday, August 24, 2007

Family in town

Hi! The sun is finally shining outside this Friday afternoon following a week of almost continuous rain. We needed the moisture, and now the grass is bright green. At least, it looks really green from my hospital room.

I've had lots of visitors this week. My uncle, Bishop Tom, came to visit Monday through Wednesday. He flew all the way from Phoenix. It was great to see him and talk about books, movies, Ireland, the Church, and Notre Dame. He was able to stay at the St. Jude's rectory, where he met a couple of the African priests who live in our parish. A good friend of mine, Brendan Gardiner, also paid a visit on Tuesday. Brendan studied with me in Ireland, and it's always good to catch up with him. On Wednesday, my brother Pat and his wife Tracy came to Milwaukee directly from the Mediterranean, where they had just completed a cruise contract. My sister Michelle and her husband Jeff drove up from Branson on Thursday. My brother-in-law Bryan was also able to drive up that day to join us and see my sister (his wife) Mary Margaret, who has been here helping Dad and Mom most of the week. It's been so good to see them all, and I'm looking forward to visiting with them more this weekend. Of course, we're keeping them busy. Dad has been maintaining the yard; Mom and Mary Margaret have been babysitting nonstop; Mary Margaret and Tracy helped Regan buy treats and decorations for her birthday slumber party tonight; and Dad and Pat and Jeff are going to install some safety grab bars in our shower at home tomorrow so that they'll be in place when I need them. I've had several members of the family come along to observe my therapy sessions so that they can see what I go through each day. The therapists are very accommodating about having them there and sometimes even get them involved. Regan and Aubrey hit a balloon back and forth with me to help me with my balance, for instance, and I played shuffleboard with Mom during recreational therapy yesterday.

Therapy is going well. I have to have a therapist or nurse present whenever I get out of the wheelchair or bed, but I am now able to rise out of the chair, walk short distances, and sit back down using only a cane. My left arm is very functional and slowly getting stronger. My left leg is largely unresponsive, although there are a few hip and thigh muscles that are starting to show signs of life. I see progress every day, which continues to keep me encouraged.

Kelly is holding down the fort at home tonight, overseeing Regan's slumber party. I can't wait to hear how that goes. Aubrey is in Chicago with a friend, who invited her to see the Hillary Duff concert. Everyone else is coming to have dinner with me at the hospital. I think they're bringing guacamole. Yum! They know what I like. : )

Wednesday, August 22, 2007

Under the Gamma knife


Hi! Well, today I had the gamma knife procedure to eradicate the small tumor in my left frontal lobe. It was an interesting experience. It consisted of three parts: the attachment of a titanium cage to my head; an MRI; and the radiation treatment itself. The first part is the most exciting. Dr. Mueller, my neurosurgeon, oversaw the procedure, which is kind of like putting a stand on a Christmas tree. He fit the cage around my head and then screwed in four bolts--two in front, two in back--until he hit skull and got a nice secure fit. He said it would feel like having my head put in a vise . . . and he was right. Dr. Mueller kept me entertained the entire time by telling me about his favorite hobby: racing motorcycles on ice. I can't even imagine what that would be like, but he swears it's great fun. : )

They next performed an MRI to plot the exact position of the tumor, and then we waited. The hospital can perform only one gamma knife operation at a time so I had to wait five hours for my turn. Fortunately, it didn't take long to become accustomed to the pressure of the bolts, and I was able to relax in relative ease. I couldn't wear my glasses so I couldn't read or watch TV, but Kelly was there to keep me company. This was a real treat. With four kids, we rarely have the opportunity to spend so much uninterrupted time together. It was almost like being on a date!

Eventually, the time came to have the radiation treatment. They took me into a room and attached the cage to a frame on a table. Once the cage is attached to the frame, the radiation oncologist locked me into place so that my head would remain perfectly still. The gamma knife machine employs something like 220 lasers, and a physicist was on hand to perform the calculations that would make sure all those lasers were directed at the right spot. That's important: Dr. Mueller had explained to me before the procedure that whatever gets hit by the laser will die. "If we aim at tumor, we kill tumor," he said, " and if we aim at brain, we kill brain." Finally, everyone left the room. There was no noise, no puffs of smoke, no glowing bars of light. I just laid there for about 15 minutes, and then it was over.

Dr. Mueller and the radiation oncologist removed the cage and within five minutes I had the worst headache I've ever had in my life. It felt like those bolts had broken through my skull and were stabbing into my brain. If you've ever been in a hospital, you may be familiar with the 1-10 pain scale that doctors and nurses use to rate pain. This was the first time I ever described my pain with a 10. It was way worse than biochemo, worse even than back surgery. By the time they wheeled me back to my room, I thought I was either going to throw up or black out from the pain. Fortunately, the pain left almost as quickly as it came on. The nurses gave me a couple of ice packs and some Percocets, and within half an hour I was able to talk to Kelly again. I think my skull bones needed to pop back into place or something.

While I was dealing with my headache, Kelly attended my case meeting--a weekly evaluation the rehab doctors and therapists conduct for each patient--and the overall report said I was progressing nicely and should be able to go home without a wheelchair in 10 to 14 days. The physical therapist also said I could get a day pass for this weekend so I might be able to go home for a few hours. That would be nice.

I tried to provide a lot of detail in the above post because I thought some of you might be interested in what the gamma knife operation was like. I hope it didn't get too boring for you. Thanks for all your prayers and support as always.

Jeff

Tuesday, August 21, 2007

Gearing Up . . .

Hi All!

Kelly here. It's been a busy couple of days. Here's what you've been missing: Jeff's uncle, Tom Olmsted, arrived in Milwaukee yesterday. He is the Bishop of Phoenix, so he is used to extraordinary heat. It has been in the 70's here which is probably a real shock to his system. He visited with Jeff at the hospital yesterday and spent most of today at our house entertaining the kids while Jeff was in his various therapy appointments. The kids loved having him here and were eager to show him their their toys, friends (Hi, Murphy Boys!), and school.

Tom leaves tomorrow, but Jeff's brother Pat and his wife Tracy will be arriving from the Mediterranean and Jeff's sister, Michelle, will be arriving on Thursday. In the meantime, Jeff's parents and his other sister are here, so Jeff is going to be inundated with visitors. I hope he will be well enough to handle it. We just learned today that Jeff will be undergoing Gamma Knife surgery tomorrow to treat the other remaining brain tumor. The treatment itself only takes 15 minutes, but the preparation leading up to the procedure takes several hours. First, Jeff will be fitted with a "cage" that the neurosurgeon will screw to his head. (OW!) They will do this under local anesthetic because the screws are only supposed to penetrate the skin. They do not actually screw into the skull bones. (Small relief). The cage will completely immobilize Jeff's head. He will then have to undergo some more scans and an MRI to help the surgical team determine the precise location of the tumor and whether there are additional tumors worth treating. Jeff will then be sedated to further discourage any sudden movement and they will then make attempts to position him in "the Machine." When they finally succeed in aligning him in just the right spot, they will zap the tumor with an extremely powerful precisely-focused dose of radiation. When the procedure is finished, they will relieve Jeff of his "cage, " in much the same way my band relieved me of my lead-singing duties. (Bitter, you say? No. Not me.) They will then give him a couple of band-aids and Tylenol for any residual pain and let him sleep off the sedatives. He might be feeling better by mid-afternoon. However, he also might not.

In preparation for the surgery, Jeff had to undergo a comprehensive evaluation by a neuropsychologist. The radiation oncologist explained this testing is necessary because the side effects of radiation can include confusion, memory loss, and dementia. He explained that many people were undergoing brain radiation and then blaming their mental deficits on the treatment, when, in fact, they simply weren't as smart as they thought they were to begin with. Therefore, all patients have to undergo specialized testing so that the doctors can establish a baseline from which to gauge any future deviation. Fortunately, Jeff has a lot of real estate to work with here. He is a mental powerhouse. He could lose 50 I.Q. points and still be smarter than 99 percent of the population, so I feel like he's got a bit of a head start on the radiation. (Note to self: ask surgeon if I could get stupider by standing next to Jeff after he's been irradiated. This could be a problem . . .).

Jeff is, of course, taking the surgery in stride. He doesn't attribute his resolve in facing it to uncommon courage. He just says, "you do what you have to do." Dr. Mueller met with Jeff and I this afternoon to plan the surgery and commented again about what a great guy Jeff is and how positive and hopeful Jeff is. I think he genuinely believes Jeff can triumph over melanoma and it's reassuring to know that someone in his position feels that way. He told Jeff that he IS beating cancer. I hope Jeff is strengthened by the doctor's confidence in him. Jeff said he thinks he will sleep well tonight and he is already planning to go to physical therapy tomorrow afternoon. (!!!) He is only marginally concerned that the doctor will inadvertently zap that part of the brain that regulates bladder control or an irresistible desire to end all of his sentences with an impassioned "Indeed!!" But, I think that if this brain surgeon is any good he'll just kill the part of Jeff's brain that is telling the melanoma cells to proliferate and put an end to this crap once and for all.

Otherwise, Jeff continues to improve daily although use of his leg has been very slow to return. His arm is a real team-player and is doing better each day. Aubrey and Regan went with Jeff's dad to the hospital today to sit-in on Jeff's afternoon physical therapy and occupational therapy sessions. I'm sure it is reassuring to them to see his progress and how motivated he is by improvement.

Finally, Jeff's friend Brendan came all the way from Peoria, Illinois to visit tonight. Jeff was very happy to see him and I'm grateful to friends who have made such extraordinary efforts to show Jeff how much they care about him.

Well, it's getting late and I have an early morning tomorrow. I'm going to wait at the hospital during Jeff's preparation and surgery. The doctor recommended that someone wait with him because there is a lot of down time and he will likely be bored. I don't know that I'll be any kind of help or comfort to him, but there is no place I'd rather be. Except maybe a Boston concert.

I'll report back after tomorrow's Big Event. Until then, take care.

Kelly