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

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

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

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

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.

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.

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 :)