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

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! : )

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

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

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".

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!