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
Wednesday, August 29, 2007
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
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. : )
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
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
Sunday, August 19, 2007
A picture with the kids
Hi! Not much to report today. I'm still making progress with my left arm. Today I can lift it all the way over my head. I couldn't touch my nose on Thursday morning so that's a big improvement. The leg is still slow in responding, but I have been able to push very slightly with my left quadriceps so that's a small step in the right direction. The therapists say my recovery is very unusual. Evidently, most people with brain injuries recover the use of their leg before their arm and muscle activity generally starts closer to the trunk and moves to the extremities. In my case, I've been moving my fingers since immediately after the surgery and am working my way back to the trunk. Hopefully the anomaly is a good sign.
Here is a picture of us having dinner in the cafeteria on Saturday. Kelly brought in "Noodles & Company" for dinner. The kids were great. It made me feel good to hear them arguing about which one gets to sit next to me and who gets to push me in the wheelchair first. I haven't heard them complain once about having to visit me or postpone some other activity because of me. Instead, they constantly tell me how much they love me and that I'm the best dad in the whole world. I am awed by their unwavering strength, their boundless hope, and their endless compassion. They make me so proud, and I love them very much.
Jeff
Saturday, August 18, 2007
Taking a break
Hi! It's Saturday so I only have one hour of therapy today. That means I have a little time to add a blog. It takes me longer than usual because I have to type it one-handed, but I've been typing one-handed quite a bit since Finn was born (one hand holding him, one hand on the keyboard) so it isn't that bad.
Therapy is a real workout. Who would think that walking 50 yards or lifting my arm six inches off a table could be so tiring? Today they had me bench pressing a golf club--and that was progress! The therapists are nice, though, and I feel like I'm getting stronger each day. It's good they keep me busy too because then I can't stop to think about the absurdity of the whole situation. You just can't imagine what it's like to want to put toothpaste on a toothbrush and have to think so damn hard about how to do it and then hope that you actually get it right. I have to laugh about it because there's no point in getting mad. It just seems so bizarre.
Last night I had a real treat: I got to go outside! Kelly was here to visit, as was Tony and his daughters and an old friend from high school, Dana Johnson, and his wife, Shalu. We were having a perfect Wisconsin summer evening: 70 degrees and no humidity. So we loaded up the babies in a stroller and Kelly, Dana, and Tony took turns pushing me in the wheelchair around the medical center campus. The fresh air felt great after being cooped up in a hospital room for a week.
I'm hoping the kids will be able to come over for dinner tonight. We're going to try to find a family lounge where we can all get together for a meal and the kids don't have to worry about disturbing other patients. Maybe we'll take a picture and post it on the blog tomorrow. Kelly gave me a haircut last night so I look less like a craniotomy patient and more like a normal guy. She did a great job with the cut. But then she's so good at everything she does. I'm lucky to have her as my wife.
And I'm lucky to have so many supportive friends and family members. Mom and Dad have been here helping out: mom watching the kids and keeping the house in order, dad going to my therapy sessions for support. Mary Margaret has been up to help a lot, too, and Pat and Tracy and Michelle and Jeff are planning to come next week. Then all our friends here in Tosa have been visiting and helping with the kids. And so many of you have sent supportive messages and countless prayers. I can't imagine trying to go through this alone and thank God I don't have to.
Jeff
Therapy is a real workout. Who would think that walking 50 yards or lifting my arm six inches off a table could be so tiring? Today they had me bench pressing a golf club--and that was progress! The therapists are nice, though, and I feel like I'm getting stronger each day. It's good they keep me busy too because then I can't stop to think about the absurdity of the whole situation. You just can't imagine what it's like to want to put toothpaste on a toothbrush and have to think so damn hard about how to do it and then hope that you actually get it right. I have to laugh about it because there's no point in getting mad. It just seems so bizarre.
Last night I had a real treat: I got to go outside! Kelly was here to visit, as was Tony and his daughters and an old friend from high school, Dana Johnson, and his wife, Shalu. We were having a perfect Wisconsin summer evening: 70 degrees and no humidity. So we loaded up the babies in a stroller and Kelly, Dana, and Tony took turns pushing me in the wheelchair around the medical center campus. The fresh air felt great after being cooped up in a hospital room for a week.
I'm hoping the kids will be able to come over for dinner tonight. We're going to try to find a family lounge where we can all get together for a meal and the kids don't have to worry about disturbing other patients. Maybe we'll take a picture and post it on the blog tomorrow. Kelly gave me a haircut last night so I look less like a craniotomy patient and more like a normal guy. She did a great job with the cut. But then she's so good at everything she does. I'm lucky to have her as my wife.
And I'm lucky to have so many supportive friends and family members. Mom and Dad have been here helping out: mom watching the kids and keeping the house in order, dad going to my therapy sessions for support. Mary Margaret has been up to help a lot, too, and Pat and Tracy and Michelle and Jeff are planning to come next week. Then all our friends here in Tosa have been visiting and helping with the kids. And so many of you have sent supportive messages and countless prayers. I can't imagine trying to go through this alone and thank God I don't have to.
Jeff
Thursday, August 16, 2007
Making strides
Jeff has made great strides today . . . literally! His left arm is beginning to work and I have a feeling his leg is not far behind. He can move his fingers on his left hand and by 6:00 p.m. this evening, he could lift his arm high enough to push his glasses up on his nose. It was awesome to see!
Yesterday, Jeff was officially discharged from the neurology floor and admitted to the hospital’s inpatient rehabilitation floor where they expect he will recover for the next couple of weeks. He will undergo intensive physical and occupational therapy. Who knew that the hospital would give Jeff job training in a career of his choice! What? Oh. Jeff says that’s not what occupational therapy is all about. He says occupational therapy is intended to teach him how to live independently. At occupational therapy they help him re-learn how to put on his socks and brush his teeth. Wow, if that’s all you need to know to be independent, then Jack and Regan should either find an apartment or pay me rent. Freeloaders!
Jeff’s recovery will be a full-time job: he has occupational therapy at 9:00 a.m.; physical therapy at 10:30 a.m. and 2:00 p.m.; and speech therapy at 11:30 a.m. and 2:30 p.m. Jeff’s speech is actually unaffected by the brain surgery, but they want to do a couple of sessions with him to make sure he hasn’t lost any cognitive function. He told me that the speech therapy was actually pretty intense. He had to remember a list of several random numbers and recite them back to the therapist in order from smallest to largest and simultaneously remember to tell the therapist in five minutes what the months of the year are alternating backwards from December. Then he had to order Chinese food with a French accent and do an imitation of Elmer Fudd with a lisp. (Just kidding). The therapist was impressed with Jeff’s extremely high level of mental function and said what a pleasure it was to work with someone so advanced. I tried a few of the tests and based upon the results, I am either a 6 year-old or I have Alzheimer’s disease.
Dr. Mueller continues to manage Jeff’s care. He shared the results of Jeff’s DTI-MRI today and he told Jeff that it showed no evidence of melanoma where he removed the tumor, so he was confident that he got everything. Once Dr. Mueller signs-off on Jeff’s surgery and removes his staples, he will be discharged to the care of his radiologist-oncologist for Gamma Knife radiation on the remaining small tumor and Whole Brain Radiation. Dr. Legha will also determine whether he wants Jeff to simultaneously start some chemotherapy to complement the radiation treatments. The Gamma Knife surgery will likely be done while Jeff is still an inpatient at the hospital. However, the Whole Brain Radiation will not likely start for another couple of weeks. They have to wait until his scar has healed from surgery and until the Gamma Knife surgery is complete. We are so thankful that Jeff is in Milwaukee for these treatments and does not have to travel to Houston. It has been so wonderful to be close to the kids and my job. It has also been great to be in such proximity to the support of so many friends and family members.
So, today has been a good day. Jeff can partially use his arm again which is very encouraging and exciting. The difference between today and yesterday is almost immeasurable. Yesterday, Jeff was largely immobile, frustrated and discouraged. Today, he is wearing his own clothes, he has been out of bed and active all day, and is joking and talking light-heartedly with the nursing staff and visitors. I can’t wait to see what improvement tomorrow brings!
Kelly
A personal addendum from Jeff: much has been made in recent days about the voluminous mane of chest hair I exhibited in the picture with Aubrey (below). Unfortunately, three months of biochemo could not tame the beast. But I take hope in the knowledge that manly chest hair will one day make a comeback, along with mustaches, Camaros, and white leather belts. Just you wait and see.
Yesterday, Jeff was officially discharged from the neurology floor and admitted to the hospital’s inpatient rehabilitation floor where they expect he will recover for the next couple of weeks. He will undergo intensive physical and occupational therapy. Who knew that the hospital would give Jeff job training in a career of his choice! What? Oh. Jeff says that’s not what occupational therapy is all about. He says occupational therapy is intended to teach him how to live independently. At occupational therapy they help him re-learn how to put on his socks and brush his teeth. Wow, if that’s all you need to know to be independent, then Jack and Regan should either find an apartment or pay me rent. Freeloaders!
Jeff’s recovery will be a full-time job: he has occupational therapy at 9:00 a.m.; physical therapy at 10:30 a.m. and 2:00 p.m.; and speech therapy at 11:30 a.m. and 2:30 p.m. Jeff’s speech is actually unaffected by the brain surgery, but they want to do a couple of sessions with him to make sure he hasn’t lost any cognitive function. He told me that the speech therapy was actually pretty intense. He had to remember a list of several random numbers and recite them back to the therapist in order from smallest to largest and simultaneously remember to tell the therapist in five minutes what the months of the year are alternating backwards from December. Then he had to order Chinese food with a French accent and do an imitation of Elmer Fudd with a lisp. (Just kidding). The therapist was impressed with Jeff’s extremely high level of mental function and said what a pleasure it was to work with someone so advanced. I tried a few of the tests and based upon the results, I am either a 6 year-old or I have Alzheimer’s disease.
Dr. Mueller continues to manage Jeff’s care. He shared the results of Jeff’s DTI-MRI today and he told Jeff that it showed no evidence of melanoma where he removed the tumor, so he was confident that he got everything. Once Dr. Mueller signs-off on Jeff’s surgery and removes his staples, he will be discharged to the care of his radiologist-oncologist for Gamma Knife radiation on the remaining small tumor and Whole Brain Radiation. Dr. Legha will also determine whether he wants Jeff to simultaneously start some chemotherapy to complement the radiation treatments. The Gamma Knife surgery will likely be done while Jeff is still an inpatient at the hospital. However, the Whole Brain Radiation will not likely start for another couple of weeks. They have to wait until his scar has healed from surgery and until the Gamma Knife surgery is complete. We are so thankful that Jeff is in Milwaukee for these treatments and does not have to travel to Houston. It has been so wonderful to be close to the kids and my job. It has also been great to be in such proximity to the support of so many friends and family members.
So, today has been a good day. Jeff can partially use his arm again which is very encouraging and exciting. The difference between today and yesterday is almost immeasurable. Yesterday, Jeff was largely immobile, frustrated and discouraged. Today, he is wearing his own clothes, he has been out of bed and active all day, and is joking and talking light-heartedly with the nursing staff and visitors. I can’t wait to see what improvement tomorrow brings!
Kelly
A personal addendum from Jeff: much has been made in recent days about the voluminous mane of chest hair I exhibited in the picture with Aubrey (below). Unfortunately, three months of biochemo could not tame the beast. But I take hope in the knowledge that manly chest hair will one day make a comeback, along with mustaches, Camaros, and white leather belts. Just you wait and see.
Tuesday, August 14, 2007
It's a Pity Party . . . and You're Invited!
Today my band informed me that they are "releasing me from my responsibilities to them." They feel that my situation is unpredictable and out of my control, thereby making me potentially unreliable. My heart and my spirit are broken. That's all I can say. OK. The pity party is over.
Jeff is doing well today but he is restless and frustrated by his uncooperative left side. He is increasingly uncomfortable and cannot easily change positions. He met with the physical therapist and walked a few steps with her help using a walker. I was so proud of him! He did such a good job! It was a joy to watch him moving. It sounds like they will continue to do more physical therapy and will craft a treatment plan based upon his functionality when we know more about how quickly he'll regain use of his left side. They said it is possible he will eventually be moved from the neurology floor to the inpatient rehabilitation floor for a while until he is strong enough to safely maneuver around home with minimal help. Jeff, of course, prefers to be released directly to home on his own power without any therapy at all, but he'll likely have to endure their help for a while.
Jeff had another MRI today and is going to have another more specialized MRI later tonight to monitor his brain "wiring." So, between the tests and physical therapy, Jeff has had a busy day. He's also had many visitors respond to Aubrey's invitation. It is wonderful to know so many people are following his progress.
I went back to work today. Don't be jealous. My co-workers have been wonderful and I can't thank Liz enough for tending to things in my absence and arranging all my appointments.
As for the tumor they removed on Saturday: we received the pathology report and it was confirmed to be melanoma. The doctors thought it could possibly be a second unrelated cancer because it did not "behave" like melanoma on the pre-operative scans--it was diffuse and leaky and didn't "light up" like "normal" melanoma. But, with the pathology report we now have confirmation that Jeff does NOT have two cancers! This is good news.
Also, the kids came to visit Jeff yesterday for the first time since his surgery. I know it was a little unsettling for them to see Jeff so debilitated when they are used to seeing him so strong and able. Regan was sympathetic and concerned. Jack, on the other hand, was fascinated by Jeff's useless left side. Jack proudly demonstrated Dad's floppy hand for visitors and announced "his arm and leg don't work--I'm not kidding." Jeff was very patient with them as they took turns feeling the dead weight of his limbs and in allowing them to try to lift and reposition them. He truly is a Super Dad! The kids continue to do well under the circumstances and are distracted by the upcoming school year. Thank you to all the friends who have kept them busy with play dates and other fun over the past couple of days.
I'll let you know how the MRI's turn out. Until then . . . I'm too sad to be funny.
Jeff is doing well today but he is restless and frustrated by his uncooperative left side. He is increasingly uncomfortable and cannot easily change positions. He met with the physical therapist and walked a few steps with her help using a walker. I was so proud of him! He did such a good job! It was a joy to watch him moving. It sounds like they will continue to do more physical therapy and will craft a treatment plan based upon his functionality when we know more about how quickly he'll regain use of his left side. They said it is possible he will eventually be moved from the neurology floor to the inpatient rehabilitation floor for a while until he is strong enough to safely maneuver around home with minimal help. Jeff, of course, prefers to be released directly to home on his own power without any therapy at all, but he'll likely have to endure their help for a while.
Jeff had another MRI today and is going to have another more specialized MRI later tonight to monitor his brain "wiring." So, between the tests and physical therapy, Jeff has had a busy day. He's also had many visitors respond to Aubrey's invitation. It is wonderful to know so many people are following his progress.
I went back to work today. Don't be jealous. My co-workers have been wonderful and I can't thank Liz enough for tending to things in my absence and arranging all my appointments.
As for the tumor they removed on Saturday: we received the pathology report and it was confirmed to be melanoma. The doctors thought it could possibly be a second unrelated cancer because it did not "behave" like melanoma on the pre-operative scans--it was diffuse and leaky and didn't "light up" like "normal" melanoma. But, with the pathology report we now have confirmation that Jeff does NOT have two cancers! This is good news.
Also, the kids came to visit Jeff yesterday for the first time since his surgery. I know it was a little unsettling for them to see Jeff so debilitated when they are used to seeing him so strong and able. Regan was sympathetic and concerned. Jack, on the other hand, was fascinated by Jeff's useless left side. Jack proudly demonstrated Dad's floppy hand for visitors and announced "his arm and leg don't work--I'm not kidding." Jeff was very patient with them as they took turns feeling the dead weight of his limbs and in allowing them to try to lift and reposition them. He truly is a Super Dad! The kids continue to do well under the circumstances and are distracted by the upcoming school year. Thank you to all the friends who have kept them busy with play dates and other fun over the past couple of days.
I'll let you know how the MRI's turn out. Until then . . . I'm too sad to be funny.
Sunday, August 12, 2007
The Patient is IN! (so visit him!)
umm... hi everybody! this is aubrey and i am kinda new at this whole blogging thing. i mean, i've done blogs before but not on this one. anyway, today i went an visited my dad and i have to say, it was really amazing how strong he is already! as i walked through the NICU (neurological (sp?) intensive care unit) there were people who couldn't even open their eyes but my dad was talking, eating, and he even got out of his bed to sit in a chair while he ate his lunch! the doctor also had GREAT news. my dad said that the doctor came into his room and he didn't stay very long or anything, but he did say that on the MRI scans, there was no sign of anything that would stop him from being able to use his left side again. my dad asked if they would have to do another surgery and the doc. said no!! we were really happy about that :)
My grandma, (Jeff's mom) is still here and will be staying here for a while. she is a LOT of help. without her i wouldn't have a life because i would be babysitting ALL the time! [thank you grandma :)]
my dad would also like everyone to know that he would like visitors because on Tuesday, my mom will have to be at work for a while, and he gets really bored when he's all alone; and the television channels aren't really the best so that doesn't help. unless my dad wants to watch the recovering patients channel on channel 29! ha ha. anyway, keep my dad & the rest of us in your prayers PLEASE!!!
lots of love,
aubrey dodd :)
Saturday, August 11, 2007
SuperJeff!
I just wanted to put another post up to announce that Jeff is simply AMAZING! When I went to see him in the intensive care unit this afternoon, he had just moved out of the recovery room. He was wide awake and completely alert. He was cognizant and sharp. He carried on conversations easily with me and the resident brain surgeon (which required him to quickly change gears mentally from "Duhhh" to "right craniotomy with stealth for tumor resection"--no small feat). Here are some other highlights from the afternoon:
Jeff is already telling people that brain surgery is way easier than back surgery and a lot better than biochemo. He said it doesn't hurt much and he feels pretty good. The resident surgeon also tested the strength in his left arm and noted that although it was considerably weak right before surgery, he now believes it is comparable in strength to his right arm. So, hopefully this means he can hold Finny again soon! It has been so sad the past couple of days to watch him struggle more and more holding Finn and to finally sacrifice holding him for fear of dropping him or falling down with him. I offered to put Finn in a bike helmet and bubble wrap, but this offer was politely rejected.
Jeff felt so good this afternoon he called the kids, his mom, and his dad to talk on the phone. When he was on biochemo he went for DAYS without being able to talk on ths phone, so this was a vast improvement. In fact, Jeff called home tonight from the ICU to ask me to make him some popcorn (!!!) and to find out when his Mom was coming to visit. As I write this, Mary is delivering Jeff's popcorn to him along with printouts of all your blog comments. He will be so happy to get them--I'm sure he can't wait to get back on the computer and update you, himself.
In the meantime, Jeff has displayed a miraculous side-effect: You've heard of people who have brain surgery and emerge with the ability to speak a new language or paint intricate landscapes . . . well, the brain surgery has made Jeff FUNNY! He was doing a one-man show for the neurosurgery resident. The resident was explaining to Jeff that his post-surgery CT scan looked good and that although it shows a little air in his brain, this is normal and expected. He explained that when the brain is compressed and the tumor is removed, it takes a little while for the brain to spring back into shape. In the meantime, the "dent" from the tumor fills with air. Jeff said, "so is this what is known as a Brain Fart?" Ha ha! Two shows nightly folks, no cover charge or drink minimum!
Finally, I was very encouraged to discover something odd that Jeff had packed to take to the hospital along with his clothes and other toiletries: a hair brush. This, to me, is the pinnacle of optimism! Keep it up, honey!
Well, I just wanted to share a few insights into Jeff's recovery and to let you all know that although he is tired and sore, he is doing well. I'll continue to keep you all informed. Until then . . .
Kelly
Jeff is already telling people that brain surgery is way easier than back surgery and a lot better than biochemo. He said it doesn't hurt much and he feels pretty good. The resident surgeon also tested the strength in his left arm and noted that although it was considerably weak right before surgery, he now believes it is comparable in strength to his right arm. So, hopefully this means he can hold Finny again soon! It has been so sad the past couple of days to watch him struggle more and more holding Finn and to finally sacrifice holding him for fear of dropping him or falling down with him. I offered to put Finn in a bike helmet and bubble wrap, but this offer was politely rejected.
Jeff felt so good this afternoon he called the kids, his mom, and his dad to talk on the phone. When he was on biochemo he went for DAYS without being able to talk on ths phone, so this was a vast improvement. In fact, Jeff called home tonight from the ICU to ask me to make him some popcorn (!!!) and to find out when his Mom was coming to visit. As I write this, Mary is delivering Jeff's popcorn to him along with printouts of all your blog comments. He will be so happy to get them--I'm sure he can't wait to get back on the computer and update you, himself.
In the meantime, Jeff has displayed a miraculous side-effect: You've heard of people who have brain surgery and emerge with the ability to speak a new language or paint intricate landscapes . . . well, the brain surgery has made Jeff FUNNY! He was doing a one-man show for the neurosurgery resident. The resident was explaining to Jeff that his post-surgery CT scan looked good and that although it shows a little air in his brain, this is normal and expected. He explained that when the brain is compressed and the tumor is removed, it takes a little while for the brain to spring back into shape. In the meantime, the "dent" from the tumor fills with air. Jeff said, "so is this what is known as a Brain Fart?" Ha ha! Two shows nightly folks, no cover charge or drink minimum!
Finally, I was very encouraged to discover something odd that Jeff had packed to take to the hospital along with his clothes and other toiletries: a hair brush. This, to me, is the pinnacle of optimism! Keep it up, honey!
Well, I just wanted to share a few insights into Jeff's recovery and to let you all know that although he is tired and sore, he is doing well. I'll continue to keep you all informed. Until then . . .
Kelly
The Reverse Mohawk
This update is dedicated to Jeff's new hair-style, affectionately called "The Reverse Mohawk." I haven't seen it yet, but I hear it is fabulous. I'm sure you will all want one. Jeff had surgery this morning. He is now in the recovery room and the neurosurgeon told me to go home for a couple of hours, eat, and take a shower (hey . . . wait a minute!! I can take a hint.) So, I'm taking a quick break to update all of you on Jeff's progress. Jeff underwent a right craniotomy at approximately 8:30 a.m. this morning. I arrived at the hospital at 6:00 a.m. to see him off before his surgery. He was simultanously distraught and resolute--knowing surgery was necessary, but also fearing the outcome. We cried and said what we could muster the strength to say, but as they wheeled him away on his bed he was focused and brave. The procedure was performed by our Superstar neurosurgeon, Wade Mueller and his team of high-kicking Surgeonettes. Or maybe some other doctors and nurses. The surgery was complete around 11:30 a.m. and the doctor told me the results were good and that things went "just fine." Dr. Mueller said that he shaved Jeff's head himself and I wondered to myself why I should pay $2,700 for a haircut college roommates routinely give each other for free. As if reading my mind, Dr. Mueller informed me that he does several hundred such surgeries per year and that he does a fair amount of melanoma resection. He is familiar with its ways and its fury and he believes that Jeff has what it take to beat it.
While it was reassuring to hear Dr. Mueller talk about the details of the procedure and it's anticipated success, it was even nicer to hear Dr. Mueller talk about what a "great guy" Jeff is and how Jeff inspired his team to do their best work. He said that the pre-op medications affect the brain in such a way as to allow patients to reveal their starkest selves and Jeff proved to be inherently one of the most polite people he's ever met. Jeff was entering the opertating room, chatting with the nursing staff, introducing himself. Dr. Mueller said it's patients like Jeff that make him love his job and that make it easy for him to do it well. He said Jeff is "full of light" and "really a very neat, very great guy."
Dr. Mueller explained that because Jeff is otherwise young and robust, he felt comfortable taking a very aggressive approach to the cancer. When he met the enemy face-to-face the melanoma revealed itself to be large and diffuse (like a web insetad of a ball). It was bleeding due to an abnormal blood supply. He explained that one of the unique and very interesting hallmarks of cancers is their ability to create their own blood supplies. However, because cancer cells are abnormal cells, they create deformed blood supplies that easily leak. He said that he not only cleaned out the tumor but that he also "grossly messed with its blood supply" thereby attempting to choke it off at the source. He also said that only subsequent scans will reveal how much of the tumor remains (if any) and that if any remains that can be further removed he will open Jeff back up to remove it. Jeff is tough enough to withstand another surgery and deserves every fighting chance of a cure. So, hopefully, he got all that he could the first time, but if he didn't he's willing to continue with a very aggressive approach to eradicating the tumor. He said there appears to be a much much smaller tumor above Jeff's left eye, but that it can likely be treated effectively with a Gamma Knife procedure involving extremely high dose, focused radiation.
The only downside to Jeff's surgery today is that he is likely to have some permanent impairment to his left side the extent of which remains to be seen and which will only be known for sure after the next few months. The doctor said that due to the location of the tumor along the sensory motor area and due to the diffuse nature of the tumor, he had to intrude upon healthy tissue to get everything he could. He said he is constantly cognizant of the balance between surviving the cancer versus the effect permanent impairment could have on quality of life and that we will simply have to wait and see. Dr. Mueller said "he's going to need some luck" but that he's pulling for us and will do everything he can to help Jeff.
So, in summary: Of the two known tumors, the doctor removed all of the large tumor that he could safely remove and he agrees that the smaller one should be addressed with Gamma Knife and whole-brain-radiation. Jeff will likely have some degree of permanent weakness on his left side with hope that it will not compromise his quality of life. He'll be in the intensive care unit for the next two days and then in a regular hospital room for a couple more or until he regains strength enough to safely go home. The doctor said he could be released as early as Tuesday if all goes well.
In the meantime, he will have headaches for two days and will then feel exponentially better after that. He will undergo CT scans and MRIs over the next day or two to monitor the bleeding in his brain and he will be closely monitored for seizures and strokes. His hair will grow back--but he will likely lose it again when he undergoes radiation treatment. The radiation treatments should be well-tolerated. The worst side effect may be some dementia, so if Jeff owes any of you money, you should try to collect it now before he conveniently "forgets" to pay you. Ha! On the other hand, if Jeff doesn't owe you money, you will soon be able to convince him that he does since he won't remember anyway.
I hope this information is enough to tide you over until later when I have more specific information for you. It is now nearly 2:00 p.m. and he should just be waking up in the recovery room, so I am going to sign off and go back to the hospial for a while to be there when he becomes somewhat alert. I hope that Mary can spend some time with him tonight. I know she is desperate to be with him and I'm sure it would be a comfort to him. I don't care how big you are, it's always nice to have your mommy!!
So, I'll continue to keep you updated and I'll return phone calls as I'm able (cell reception is terrible in the hospital!). Until then, take care and pray for Jeff's peace of mind and that his hope is renewed. It's been a very rough and trying week for him, and things are not going to get easier for a while. It will help him immeasurably to know that you are pulling for him.
P.S. Thank you so much to Tony Popanz for sitting with me in the waiting room. You made the whole ordeal so much more bearable for me and I appreciate it more than you will know. Your willingness to cut-short your trip to Door County is a real testament to the kind of friend you are to us and we are so glad to have you (and CeeCee and the girls) in our corner!
P.S.S. It has been exactly 7 months to the day since Jeff was diagnosed with Stage IV cancer. Weird.
Kelly
While it was reassuring to hear Dr. Mueller talk about the details of the procedure and it's anticipated success, it was even nicer to hear Dr. Mueller talk about what a "great guy" Jeff is and how Jeff inspired his team to do their best work. He said that the pre-op medications affect the brain in such a way as to allow patients to reveal their starkest selves and Jeff proved to be inherently one of the most polite people he's ever met. Jeff was entering the opertating room, chatting with the nursing staff, introducing himself. Dr. Mueller said it's patients like Jeff that make him love his job and that make it easy for him to do it well. He said Jeff is "full of light" and "really a very neat, very great guy."
Dr. Mueller explained that because Jeff is otherwise young and robust, he felt comfortable taking a very aggressive approach to the cancer. When he met the enemy face-to-face the melanoma revealed itself to be large and diffuse (like a web insetad of a ball). It was bleeding due to an abnormal blood supply. He explained that one of the unique and very interesting hallmarks of cancers is their ability to create their own blood supplies. However, because cancer cells are abnormal cells, they create deformed blood supplies that easily leak. He said that he not only cleaned out the tumor but that he also "grossly messed with its blood supply" thereby attempting to choke it off at the source. He also said that only subsequent scans will reveal how much of the tumor remains (if any) and that if any remains that can be further removed he will open Jeff back up to remove it. Jeff is tough enough to withstand another surgery and deserves every fighting chance of a cure. So, hopefully, he got all that he could the first time, but if he didn't he's willing to continue with a very aggressive approach to eradicating the tumor. He said there appears to be a much much smaller tumor above Jeff's left eye, but that it can likely be treated effectively with a Gamma Knife procedure involving extremely high dose, focused radiation.
The only downside to Jeff's surgery today is that he is likely to have some permanent impairment to his left side the extent of which remains to be seen and which will only be known for sure after the next few months. The doctor said that due to the location of the tumor along the sensory motor area and due to the diffuse nature of the tumor, he had to intrude upon healthy tissue to get everything he could. He said he is constantly cognizant of the balance between surviving the cancer versus the effect permanent impairment could have on quality of life and that we will simply have to wait and see. Dr. Mueller said "he's going to need some luck" but that he's pulling for us and will do everything he can to help Jeff.
So, in summary: Of the two known tumors, the doctor removed all of the large tumor that he could safely remove and he agrees that the smaller one should be addressed with Gamma Knife and whole-brain-radiation. Jeff will likely have some degree of permanent weakness on his left side with hope that it will not compromise his quality of life. He'll be in the intensive care unit for the next two days and then in a regular hospital room for a couple more or until he regains strength enough to safely go home. The doctor said he could be released as early as Tuesday if all goes well.
In the meantime, he will have headaches for two days and will then feel exponentially better after that. He will undergo CT scans and MRIs over the next day or two to monitor the bleeding in his brain and he will be closely monitored for seizures and strokes. His hair will grow back--but he will likely lose it again when he undergoes radiation treatment. The radiation treatments should be well-tolerated. The worst side effect may be some dementia, so if Jeff owes any of you money, you should try to collect it now before he conveniently "forgets" to pay you. Ha! On the other hand, if Jeff doesn't owe you money, you will soon be able to convince him that he does since he won't remember anyway.
I hope this information is enough to tide you over until later when I have more specific information for you. It is now nearly 2:00 p.m. and he should just be waking up in the recovery room, so I am going to sign off and go back to the hospial for a while to be there when he becomes somewhat alert. I hope that Mary can spend some time with him tonight. I know she is desperate to be with him and I'm sure it would be a comfort to him. I don't care how big you are, it's always nice to have your mommy!!
So, I'll continue to keep you updated and I'll return phone calls as I'm able (cell reception is terrible in the hospital!). Until then, take care and pray for Jeff's peace of mind and that his hope is renewed. It's been a very rough and trying week for him, and things are not going to get easier for a while. It will help him immeasurably to know that you are pulling for him.
P.S. Thank you so much to Tony Popanz for sitting with me in the waiting room. You made the whole ordeal so much more bearable for me and I appreciate it more than you will know. Your willingness to cut-short your trip to Door County is a real testament to the kind of friend you are to us and we are so glad to have you (and CeeCee and the girls) in our corner!
P.S.S. It has been exactly 7 months to the day since Jeff was diagnosed with Stage IV cancer. Weird.
Kelly
Friday, August 10, 2007
A Plan of Attack
Hi! It’s a quarter to ten on Friday night and I’m sitting in my room at Froedtert Hospital here in Wauwatosa. Froedtert is one of two large hospitals that anchor the Wisconsin Medical Center. The center is only a mile away from our house—if you’ve been here to visit we may have driven you by it. The Wisconsin Medical School is here, too.
Anyway, we have had a busy day and developed our plan of attack. First thing this morning I had a visit with Dr. Oesterling, an oncologist. He had received a final copy of the MRI report. It showed a large tumor on the right side of my brain. It sits very close to the strip of tissues that control arm and leg motion on the left side of my body. The tumor appears to be bleeding, which is most likely what is causing me to lose strength and function in my left leg and arm. The report also indicated a smaller tumor in the front lobe of my brain, right above my left eye. The doctor said when they can see a couple of melanoma “mets” in the brain, then most likely there are 15 to 20 smaller ones they can’t see.
The doctor said it was urgent that we remove the large tumor immediately. I had contacted two neurosurgeons yesterday when Dr. Legha told me I needed to have surgery as soon as possible. One of the doctors I contacted was Dr. Wade Mueller, who was recommended by my dermatologist and one of Kelly’s legal partners. Dr. Oesterling agreed that Dr. Mueller was a good choice and arranged for me to meet with Dr. Mueller right after lunch.
Dr. Oesterling said we could address the smaller tumor, as well as all other melanoma cells in my brain, by attacking them with radiation. He arranged for me to meet with a radiation oncologist to discuss this part of the plan. The radiation oncologist said we would take a two-part approach. The first part would entail using a “gamma knife”, which is essentially a concentrated radiation dose, to go directly after the smaller tumor. They would do this procedure shortly after the brain surgery. They don’t have to wait for the wound to heal to do it. As soon as my wound has healed fully—in 10 to 14 days after surgery—they would radiate the entire brain. The brain radiation would be conducted five times per week for three weeks. This should destroy all other melanoma cells in my brain.
This plan of attack conformed to the recommendations made by Dr. Legha yesterday, so Kelly and I felt comfortable proceeding. I met with Dr. Mueller today after lunch. He is a very likable man who performs 300 to 400 surgeries per year specifically to remove brain malignancies. His sense of humor had me laughing hard for the first time since this new nightmare began. He said he would do the surgery Saturday morning and admitted me to the hospital immediately after our appointment. He ordered me to have a chest X-ray and another MRI scan, this one done with mapping sensors taped to my head. The sensors will help the doctor identify the precise location of the tumor when he goes inside.
The surgery itself should take two to three hours. They will shave a strip of hair just to the right of the center of my head for the incision. He said they will return me to the intensive care unit for close observation after the surgery. If things proceed as they should, I will be back in a regular room within a day or two. He said the first two days are unpleasant but then the recovery is remarkably fast, and I should be home in three or four days if all goes well. He said that, given my age and otherwise good health, the most likely side effect is prolonged or permanent weakness in my left side. It all depends on whether he can remove the tumor without removing the brain material that controls motor functions on my left side.
Kelly brought the kids to my room for pizza tonight so we could visit. My sister, Mary Margaret, was here as well. Her boss, who is a melanoma Stage III survivor, gave her the day off to come up and babysit the kids while Kelly and I went to all our appointments. I was so glad to see them all. My very good friends, Tony and Cee Cee Popanz and their two daughters, came by to say hi. Fr. Charlie from our parish, St. Jude’s, also came by to give me the sacrament of the sick. It meant a lot to me to have them here.
When I stop to think about what is happening, I get frightened. Fortunately, I haven’t had much time to think. The good news is that the doctors feel fairly confident that they will be able to eradicate the cancer in my brain with this approach. I appreciate all of your prayers and notes of support. Hopefully I’ll be home soon and doing my power walks around the neighborhood before too long.
Jeff
Anyway, we have had a busy day and developed our plan of attack. First thing this morning I had a visit with Dr. Oesterling, an oncologist. He had received a final copy of the MRI report. It showed a large tumor on the right side of my brain. It sits very close to the strip of tissues that control arm and leg motion on the left side of my body. The tumor appears to be bleeding, which is most likely what is causing me to lose strength and function in my left leg and arm. The report also indicated a smaller tumor in the front lobe of my brain, right above my left eye. The doctor said when they can see a couple of melanoma “mets” in the brain, then most likely there are 15 to 20 smaller ones they can’t see.
The doctor said it was urgent that we remove the large tumor immediately. I had contacted two neurosurgeons yesterday when Dr. Legha told me I needed to have surgery as soon as possible. One of the doctors I contacted was Dr. Wade Mueller, who was recommended by my dermatologist and one of Kelly’s legal partners. Dr. Oesterling agreed that Dr. Mueller was a good choice and arranged for me to meet with Dr. Mueller right after lunch.
Dr. Oesterling said we could address the smaller tumor, as well as all other melanoma cells in my brain, by attacking them with radiation. He arranged for me to meet with a radiation oncologist to discuss this part of the plan. The radiation oncologist said we would take a two-part approach. The first part would entail using a “gamma knife”, which is essentially a concentrated radiation dose, to go directly after the smaller tumor. They would do this procedure shortly after the brain surgery. They don’t have to wait for the wound to heal to do it. As soon as my wound has healed fully—in 10 to 14 days after surgery—they would radiate the entire brain. The brain radiation would be conducted five times per week for three weeks. This should destroy all other melanoma cells in my brain.
This plan of attack conformed to the recommendations made by Dr. Legha yesterday, so Kelly and I felt comfortable proceeding. I met with Dr. Mueller today after lunch. He is a very likable man who performs 300 to 400 surgeries per year specifically to remove brain malignancies. His sense of humor had me laughing hard for the first time since this new nightmare began. He said he would do the surgery Saturday morning and admitted me to the hospital immediately after our appointment. He ordered me to have a chest X-ray and another MRI scan, this one done with mapping sensors taped to my head. The sensors will help the doctor identify the precise location of the tumor when he goes inside.
The surgery itself should take two to three hours. They will shave a strip of hair just to the right of the center of my head for the incision. He said they will return me to the intensive care unit for close observation after the surgery. If things proceed as they should, I will be back in a regular room within a day or two. He said the first two days are unpleasant but then the recovery is remarkably fast, and I should be home in three or four days if all goes well. He said that, given my age and otherwise good health, the most likely side effect is prolonged or permanent weakness in my left side. It all depends on whether he can remove the tumor without removing the brain material that controls motor functions on my left side.
Kelly brought the kids to my room for pizza tonight so we could visit. My sister, Mary Margaret, was here as well. Her boss, who is a melanoma Stage III survivor, gave her the day off to come up and babysit the kids while Kelly and I went to all our appointments. I was so glad to see them all. My very good friends, Tony and Cee Cee Popanz and their two daughters, came by to say hi. Fr. Charlie from our parish, St. Jude’s, also came by to give me the sacrament of the sick. It meant a lot to me to have them here.
When I stop to think about what is happening, I get frightened. Fortunately, I haven’t had much time to think. The good news is that the doctors feel fairly confident that they will be able to eradicate the cancer in my brain with this approach. I appreciate all of your prayers and notes of support. Hopefully I’ll be home soon and doing my power walks around the neighborhood before too long.
Jeff
Thursday, August 9, 2007
Bad news
Hi! We've had a sudden turn of events. I had an MRI scan performed this morning and it shows that the melanoma has spread to my brain. I have been on the phone all day with Dr. Legha in Houston and various local doctors as we try to determine the best way to treat this. I have been ordered a prescription for dexamethazone (sp?), which is supposed to help alleviate the symptoms until something more definitive can be done.
Here's what happened. On Monday, I was feeling great. I went for my usual lengthy power walk and even ran about a mile in the middle of it. When I got back home and did some stretching, I noticed that it felt weird when I tried to extend my left leg all the way. On Tuesday, I noticed my left leg felt a bit heavy during a portion of my daily walk but the feeling passed so I figured I was just tired from the day before. That night, I had a sharp pain in my hip, which I took to be a muscle cramp caused by the fact that I hadn't stretched after my walk (I was rushing to get the kids to swim lessons and had to abbreviate my normal exercise routine). Wednesday I noticed my left leg was acting funny. I was having trouble controlling it. It was like it was asleep, but it wasn't numb. I had trouble putting my left foot in a sandal, for instance, and every time I tried to turn on my left foot I felt like I was going to fall over because my foot didn't move with the rest of my leg. I tried to take a bike ride with Regan and Jack that evening but had to cancel it because I fell off my bike before I even got to the end of Perry Ct. I think I scared the kids a little by that, and I was starting to get scared myself at why my leg wouldn't work right.
Then this morning (Thursday), I could barely put my shorts on because my foot wouldn't go through the leg hole. Also, my left arm was beginning to feel heavy (it's acting kind of nonresponsive as I type this). I called Dr. Legha. He was very concerned and told me I needed to get an MRI today. Fortunately, my luck in getting quick appointments held up once again and I had an MRI scan this morning at 11:30. Dr. Legha called me at 2:00 and gave me the bad news. He hadn't seen the actual report yet--it wasn't finished yet--but he had talked to the radiologist who confirmed the presence of a suspicious lesion of roughly 3 to 4 cm in the right side of my brain.
Dr. Legha said we need to move quickly in treating this. He said I need to be working with an oncologist and/or neurosurgeon by tomorrow. Dr. Legha said this is something that could be handled locally here in Milwaukee but that if I was having any trouble at all in getting things moving that I should come to Houston tomorrow (Friday). I have contacted my local oncologist, Dr. Matthaeus and, though he is out of the office until Monday, his colleague Dr. Oesterling could see me tomorrow morning at 8:00 a.m. (Dr. Matthaeus and Dr. Oesterling were the two local oncologists recommended by my dermatologist, Dr. Barnett). I should know much more about my treatment options by tomorrow morning at 8:30. Dr. Legha said aggressive surgery is the best treatment for this; the idea is to get in and get rid of the tumor entirely before it causes any more problems. I hope Dr. Oesterling feels the same way.
We will keep everyone posted as we learn more. Please keep us all in your prayers.
Jeff
Here's what happened. On Monday, I was feeling great. I went for my usual lengthy power walk and even ran about a mile in the middle of it. When I got back home and did some stretching, I noticed that it felt weird when I tried to extend my left leg all the way. On Tuesday, I noticed my left leg felt a bit heavy during a portion of my daily walk but the feeling passed so I figured I was just tired from the day before. That night, I had a sharp pain in my hip, which I took to be a muscle cramp caused by the fact that I hadn't stretched after my walk (I was rushing to get the kids to swim lessons and had to abbreviate my normal exercise routine). Wednesday I noticed my left leg was acting funny. I was having trouble controlling it. It was like it was asleep, but it wasn't numb. I had trouble putting my left foot in a sandal, for instance, and every time I tried to turn on my left foot I felt like I was going to fall over because my foot didn't move with the rest of my leg. I tried to take a bike ride with Regan and Jack that evening but had to cancel it because I fell off my bike before I even got to the end of Perry Ct. I think I scared the kids a little by that, and I was starting to get scared myself at why my leg wouldn't work right.
Then this morning (Thursday), I could barely put my shorts on because my foot wouldn't go through the leg hole. Also, my left arm was beginning to feel heavy (it's acting kind of nonresponsive as I type this). I called Dr. Legha. He was very concerned and told me I needed to get an MRI today. Fortunately, my luck in getting quick appointments held up once again and I had an MRI scan this morning at 11:30. Dr. Legha called me at 2:00 and gave me the bad news. He hadn't seen the actual report yet--it wasn't finished yet--but he had talked to the radiologist who confirmed the presence of a suspicious lesion of roughly 3 to 4 cm in the right side of my brain.
Dr. Legha said we need to move quickly in treating this. He said I need to be working with an oncologist and/or neurosurgeon by tomorrow. Dr. Legha said this is something that could be handled locally here in Milwaukee but that if I was having any trouble at all in getting things moving that I should come to Houston tomorrow (Friday). I have contacted my local oncologist, Dr. Matthaeus and, though he is out of the office until Monday, his colleague Dr. Oesterling could see me tomorrow morning at 8:00 a.m. (Dr. Matthaeus and Dr. Oesterling were the two local oncologists recommended by my dermatologist, Dr. Barnett). I should know much more about my treatment options by tomorrow morning at 8:30. Dr. Legha said aggressive surgery is the best treatment for this; the idea is to get in and get rid of the tumor entirely before it causes any more problems. I hope Dr. Oesterling feels the same way.
We will keep everyone posted as we learn more. Please keep us all in your prayers.
Jeff
Wednesday, August 1, 2007
Finn's Baptism
Hi! I don't know who's reading this thing anymore but I thought I'd post a couple of picture from Finn's baptism, which was July 22nd. The first picture was taken at the church during the baptism. Finn was baptized at St. Jude the Apostle Church, our parish here in Wauwatosa. The second picture was taken at our home afterward. It is of Kelly and me with my brother, Michael, and my sister, Michelle, who were his godfather and godmother. My parents, my sister Mary Margaret and her husband Bryan, and my brother's fiance Victoria also were able to join us for the day.
We're enjoying the summer, although it's going much too fast. Aubrey and Regan are taking swim lessons; Jack is spending most of his time out doors this summer with Abe and Ben, the neighbor boys; and Finn is being a very good baby, sleeping five to six hours at a stretch most nights and eating as much as he can during the day. Kelly resumes her role as lead singer of the Rabid Aardvarks this coming weekend, with concerts both Friday and Saturday. I'm still doing my writing and watching the kids and puttering around the house.
Jeff
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