Wednesday, December 30, 2009
Yesterday Jim had his first post radiation MRI scan, and today we met with our lead doctor to talk about it. Everything looks great. The tumor has shrunk considerably. The higher grade (more dangerous) cancer cells appear to be largely dead.
The doctor explained that many of the tumor cells that remained after the surgery in September were destroyed by the radiation. The DNA in the rest of the cancer cells was damaged —he likened it to soldiers lying bloodied on a battlefield. The cells in their current form aren’t hurting Jim; they are only a threat if they try to divide (grow). The radiation will continue to “work” for many months by destroying those cells when they make the fatal mistake of trying to divide. Because the lower grade cells grow slowly, it might be many months before that process is complete.
In the meantime, Jim will continue to take the chemo drug. When I asked why, the doctor said it was like walking up to those bloodied soldiers laying on the battlefield and stomping on their heads. Sounds good to us! Jim will take a higher dose of the chemo drug for just 5 days a month. He’ll take medicine to prevent nausea, and he may experience some fatigue, but otherwise is unlikely to suffer side effects. If he tolerates the chemo well, he’ll probably continue this cycle for up to two years. He’ll have MRI scans every few months to monitor the effectiveness, and the doctor will make changes if needed.
“Looks good” we said as we prepared to leave. He corrected us: “Looks great!”
Friday, December 25, 2009
Sunday, December 20, 2009
I think it has been 10 days since I last blogged. I have been very neglectful of this space because I jumped into the Christmas season. I have filled my thoughts with "regular" stuff. I have truly enjoyed decorating the house for Christmas, helping practice for the pageant at St. Ambrose, and watching my beautiful daughters perform. The house has been filled with music and fun. It was GREAT to have my parents visit for the past week! Yesterday and today I had a ball playing in this great snowfall with my girls. I even enjoyed digging out from under the 20 inches. (And there is a snow day tomorrow!)
Thursday, December 10, 2009
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll
I am the master of my fate:
I am the captain of my soul.
-William Ernest Henley
I find this poem moving in so many ways. It brings strength.
I am especially moved that Nelson Mandela had it displayed on his prison cell at Robben Island. It is now the title of the movie that shows Mandela's move toward reconciliation in the birth of the new "rainbow" South Africa.
Tuesday, December 8, 2009
Only three more radiation treatments!
Sunday, December 6, 2009
Thursday, December 3, 2009
Friday, November 27, 2009
Genet let me borrow her hair to cover my "baldy" head. Since the hair fell out on the left side, I decided to buzz the rest off. Marcie did a great job with the cutting. First time I have ever shaved my head. My head is getting kind of cold though.
Thursday, November 19, 2009
Friday, November 13, 2009
Friday, November 6, 2009
Carrie: No, thanks.
Me: They will give you M&Ms.
Carrie: I'll go!
Carrie and Amara had the day off from school so we took them to the Rad oncology lab at NIH to see what I am doing each day. They had fun. They colored and played in the children's corner of the waiting room. They were able to go in the radiation room and see the laser beams that center me on the table. They also saw all of the equipment and they saw me in my mask on the table. Carrie was really fascinated by all of the equipment and moved around the room to get a good look at everything. She wants to come with me to all of my treatments!
Tuesday, November 3, 2009
Carrie was so excited about my costume possibilities after my surgery. She convinced us that my scars would be perfect to make me Frankenstein's monster. Carrie would be Dr. Frankenstein and Marcie would be the Bride. Marcie did a great job with the make-up highlighting the scar on my forehead and by my ear. Amara and Genet could not be convinced to be mini-brides or Igor. They were an angel and a fairy. (double click the photo to see it bigger)
Sunday, November 1, 2009
(Pictures: Radiation lab at NIH. That's me bolted to the table to prevent movement. Green lasers guarantee my skull is lined up properly. Mask was formed to fit the contours of my face.)
This past week I began my chemotherapy and radiation therapy. This will be a six week program.
The chemotherapy is pretty simple. Each day I will take one chemotherapy pill before bed. There is a chance of nausea so I am taking an anti-nausea med also each night. So far I have not experienced any nausea or ill-effects (just a metallic after-taste). Most patients who take this chemo med do not get nauseous.
Five days a week I will travel to NIH for a brief radiation treatment. Visits last about 30 minutes. They are going to try to schedule them for the afternoons which will allow me to work each morning.
The radiation room has lasers mounted on the walls and ceiling which ensure that my head is in the proper postion by lining up with hash marks on the mask. (See pics above from my first treatment.) Once I am in position the actual exposure to radiation lasts less than 2 minutes. The radiation beams target the tumor from multiple positions but expose healthy tissue as little as possible. There is a chance I will lose hair where the radiation enters and exits the skull. I do not feel anything as the beams are being shot. The machine makes a buzz like a Dental x-ray machine. It would be more fun if they had a better sound effect like a Star Wars laser or a light saber. After a couple of minutes, the mask is unbolted and I am free to go home.
NIH is easy to get to by Metro on the Red Line which has a stop right at the gate to NIH or I can spend an hour in traffic on the Beltway, ugh.
Thursday, October 29, 2009
Monday, October 26, 2009
It's been a long four weeks since surgery, as we waited for diagnosis confirmation, sought additional opinions, and explored treatment options. World renowned experts at the National Institutes of Health (NIH) and at the Brain Tumor Center at Duke University have reviewed our case and are in agreement. We are confident we know what we are dealing with, and we have a plan.
We are being treated at NIH (in Bethesda MD). It is a fantastic facility, and our neuro-oncologist is amazing. He provided an encouraging prognosis (contrary to what we read online about this particular type and grade of tumor). He explained that they have made tremendous advances in the past few years treating these tumors. He recommends 6 weeks of radiation coupled with chemotherapy. He believes we have an “overwhelmingly fantastic chance of killing most of the tumor cells and leaving the rest injured or dormant.” If for some reason the tumor is not responsive...they have other tricks up their sleeve (clinical trails are currently underway).
I had an MRI at NIH a couple weeks ago to make sure the neurosurgeon got as much of the tumor out surgically as possible (he did) and that I have healed nicely from the surgery. I have the chemo drug in hand, and have everything set for the radiation.
Thursday's the day. We are ready. It's go time.
We’ll share a bit of what we’ve been learning from our many appointments.
This brain tumor is not a solid mass. If it were, a skilled surgeon could scoop it out “like a plum in pudding.” Calling it a golfball actually is a misnomer. Instead, it’s millions of individual, microscopic tumor cells nestled among the healthy brain cells. The neuro-oncologist at NIH used an analogy likening Jim’s brain cells to blades of grass, and the tumor to a handful of sand thrown on the lawn. Some of the sand landed in a clump and the neurosurgeon was able to scoop that part out. But it is impossible to physically remove each piece of sand without pulling up a good portion of the lawn. What's left of Jim’s tumor is sitting in a region of the brain responsible for his speech and for the sensation on the right side of his body. We can’t afford to “pull up that grass” to get the sand out.
Brain tumor cells have a number of characteristics that make them problematic, among them is the ability to move around within the brain, and to divide (2 become 4, 4 become 8, 8 become 16…). Because of the size, location, and grade of the tumor, we can't afford to let it move or grow anymore.
So, we will use radiation to try to destroy those remaining pieces of sand. The radiation will be focused on the portion of the brain with the original tumor (much of which was surgically removed), plus the margins around it. He will get radiation treatment Monday through Friday for six weeks. Each treatment only lasts a few minutes but increases in intensity each day until the healthy cells have received the maximum amount they can tolerate (calculated by a physicist specifically for Jim). The radiation will damage the cells it hits. The healthy cells will repair themselves during the 24 hours before the next burst, but the radiation will build up in the tumor cells until their DNA becomes so damaged they basically commit suicide. To increase the effectiveness of the radiation, we will add chemotherapy. Jim will take a single chemo pill each night during the six weeks in order to increase the effectiveness of the radiation, and continue a cycle for months following radiation.
Side effects are expected to be fairly minimal, and Jim will take additional medication to reduce their impact. Nausea is felt by just 10% of people on this regimen and this is controlled with other meds. The most likely effect is fatigue. [So I might need a short afternoon nap each day ;-) -Jim]. The radiation oncologist explained that the first three weeks will be a breeze, but Jim will experience some fatigue in the second three weeks. He is likely to be most tired in the four weeks after the regimen ends. But during this whole period, the oncologist explained that patients work, exercise and live normally except for the time out of their schedule for the appointments.
Our team continues to grow. In addition to the neuro-oncologist at NIH who will oversee our treatment, we have a medical oncologist who will monitor the chemotherapy and a radiation oncologist whose team of techs and nurses will administer the radiation treatment. We continue to see the neurologist about the seizures and the neurosurgeon about the surgery recovery. Combined with the family and friends (and friends of friends) around the world praying for us, and the grace of God, we cannot imagine being in better hands!
Thursday, October 22, 2009
Tuesday, October 20, 2009
Monday, October 19, 2009
Thursday, October 15, 2009
Friday, October 9, 2009
Sunday, October 4, 2009
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Jim is feeling great a week after the brain surgery. He is eager to return to presurgery activity levels. It's probably a blessing for his brain recovery that his achilles has forced him to rest a bit this week.
I think he may indeed have super healing powers.
Monday, September 28, 2009
Thursday, September 24, 2009
Wednesday, September 23, 2009
He looks terrific. If it wasn't for the impressive 8" crescent shaped incision on the side of his head, you'd never know he just had brain surgery.
His language is remarkable. Occasionally he has trouble retrieving the word he wants to use, or understanding everything he's reading or hearing. But he's holding conversations, reading books, and communicating well. We're confident he'll be back to 100% very soon.
For now, he'll rest at home as he recoops from both the achilles and brain surgeries. We welcome you to continue sending messages of love and support electronically or by mail. We'll let you know when he's ready for visitors.
So, now what?
In a couple weeks the final pathology report will be available, so we will know exactly what type of tumor this is and how fast it's growing. Together with the neurologist and neuro-surgeon, a neuro-oncologist (a new member of our team) will help us determine the best course of action for dealing with the remaining tumor.
We won't know more until after those meetings. We will post here when we have information to share. For now, please keep praying. We are not quite finished with all this yet.
Tuesday, September 22, 2009
He continues to recover. He is eating solid food and having conversations. Right now, he's sitting in a chair playing with his new iPhone. I just showed him all the messages on facebook and the blog, which has raised his spirits higher than ever. Thank you all.
Monday, September 21, 2009
I'm doing well. I can't talk on the phone here, but have wi-fi, and am taking great comfort reading all your well wishes.
Thank you all for your prayers and support. Please keep them coming.
(our time stamp was set to Pacific time...I have changed it to Eastern. Sorry for the confusion).
The anesthesiologist and neurosurgeon each got a good nights sleep (thankfully they didn't have to get up at 3:45 like us). An electrophysiologist will work with them to map the brain. They have a solid plan for the day and are confident and optimistic.
We are feeling strong, thanks in large part to the support and love that has enveloped us these past couple weeks. Thank you. Jim was in good spirits when he went into surgery this morning. His parents and brother, and my mom, are waiting with me. We don't expect many updates throughout the day...in the meantime, be patient and believe all is well.
Keep the prayers and positive energy coming.
Sunday, September 20, 2009
Wednesday, September 16, 2009
Please take a minute between now and Sunday night to send Jim a quick message by email, wall post, handwritten card, yard sign—you choose. Tell him something you admire or appreciate about him (that shouldn't be hard). Or share a memory about him--something meaningful, or humorous (we laugh often). Let’s help make Jim as strong as he can be going into his brain surgery Monday.
Please pass the word.
I was in surgery today but at the other end of my body. My ruptured achilles tendon was (finally) repaired today!
I ruptured the achilles tendon on my right leg the same week as my first neurological exams in August. I went to hurling practice with the DC Gaels and joined a scrimmage game. I was not expecting to play that night so I did not properly stretch and warm-up. I sprinted after a ball and felt a pop in my right calf. I knew immediately that it was a ruptured achilles. The emergency room was able to confirm this SIX hours later at 2 AM.
I went to an ortho the next day. He scheduled a surgery to repair it the next week. Usually this type of surgery needs to be done within a few weeks of the injury. Before that surgery could take place my golf ball was discovered. The ortho cancelled the surgery and wanted to wait until after my craniotomy. He also considered just casting my leg and letting scar tissue mesh the ruptured ends together. (Longer recovery and greater chance of reinjury but no surgery).
Long story short, we went with a different Ortho. The new Doc was recommended by the neurosurgeon. We met the new ortho who conferred with the neurosurgeon and we got the go ahead for leg surgery today! It was the neurosurgeon who recommended getting the leg done first.
Marcie and I were at Suburban Hospital in Bethesda at 5:30 AM this morning. We were very impressed with the facilities. More importantly, we met with the anesthesiologist who had spoken face to face with the neurosurgeon. He was able to reassure us that all information was shared and they had a plan that satisfied all three doctors. Special precautions were made to ensure no rise in cranial pressure during the surgery. I was in surgery for about an hour and came through with no ill effects. I recovered for a couple of hours and was home by 11:30.
I am in a splint and using crutches. The splint and stitches will stay on for two weeks. At that point I will get a walking cast. I have some mild discomfort but the pain pills are a welcome addition.
Note to "weekend warriors": An achilles rupture is common among people in my age range (35+) who do not work out as often as they should. Most often, someone joins a basketball, soccer, tennis, etc. game without stretching and warming up properly. That tendon is not as flexible as when they were younger. A quick push-off to make a move, lunge for a ball, or burst to begin a sprint can cause that tendon to tear. It makes a loud pop and feels like you have been hit in the back of the leg. Moral of the story: Take the time to warm up and stretch!
Friday, September 11, 2009
Genet: Open daddy’s head.
M: What will the doctor do after he opens daddy’s head?
G: Get the yucky thing out.
M: Then what?
G: Daddy will come home.
That about sums it up.
We’re in good shape as long as the doctor doesn’t take Genet’s advice to crack Jim’s head open “like a egg” or Amara’s suggestion that he could use a hammer.
A & G’s brainstorming session about how the doctor could “put it back together” included:
*tape what looks like daddy’s hair
*a white thing what goes like this (with hand motions indicating a cartoon style bandage from crown to chin)
*glue (but it was determined that might sting, so it was eliminated as an option)
My suggestion that perhaps the doctor could sew it was met with enthusiasm...and color preferences:
“Pink! Pink and blue! 2 blue! Amara likes pink and me and Carrie likes blue!”
My attempt to prepare Carrie for possible questions from children at school was met with a confident (and dismissive), “I can handle it, Mom.”
I think they’re good.
Sunday, September 6, 2009
1. Pray for us and our doctors. And have faith that this will all be ok.
2. If you have questions or want information, please ask me or Jim directly, or read the blog. Please do not ask our daughters for details. We have asked a few familiar people to pay extra attention and watch over the girls when they are at school. It would be helpful if everyone else provides expressions of concern and support to me and Jim directly rather than to or through our daughters.
3. Offers of playdates to distract the girls and give us a break are welcome and appreciated. We are so grateful to friends who were able to watch the girls during our many recent appointments (even without knowing the circumstances--thank you).
4. St. Ambrose Students: One of the aspects that makes St. Ambrose such a wonderful place is the care and love shown by the students. The natural inclination for students may be to share a hug with our daughters or ask “How is your Dad doing?” This is sweet, but with over 200 students in the school, it would be overwhelming for Amara and Carrie. We ask that you allow the girls to go about their day without interruption or reminders that their Daddy is sick. Carrie especially is very sensitive to unwanted attention from her Dad’s junior high students. She wants to blend in with her class. Amara is very distractible and needs to focus on her work and activities in Kindergarten. Please respect their space and privacy and allow them to go about their day normally so they can continue to feel safe and secure at school during this challenging time. If you would like to show your concern, you are welcome to send a drawing or card to the house, or offer to come over after school/weekends to play with them.
Thank you for helping us keep the girls’ routine as normal as possible, and minimize anxiety and stress.
The surgery is estimated to last 8 hours. Jim will spend much of it sedated and will get a drug that will make him forget the whole experience. So, the neurosurgeon explained that the 8 hours will seem like 10 minutes to Jim…although he acknowledged it will seem like 2 ½ days to me!
Let’s not kid ourselves…this is brain surgery, and it comes with risks, some of which are pretty scary. The awake surgery should minimize many of them. Having the procedure done by a Top Doc using the best available technology should reduce them further. We’ll rely on prayers and luck for the little bit of risk that remains.
Our very own “McDreamy” (Grey’s Anatomy reference) does awake brain surgery at least once a week; he does more than probably anyone in the DC area. While scary for all of us, this is “where he lives”…this surgery is routine for him. He talks and jokes with patients during surgery and will keep Jim as comfortable as possible. He promised to treat Jim like his brother—and then he reassured us that he likes his brother! We have tremendous confidence in him and (most of the time) feel confident about the surgery.
Simple guide to awake brain surgery:
Thursday, August 27, 2009
Let me fill you in. In June of this year, I had a sudden loud ringing in my right ear and became disoriented. It faded in less than a minute. The next day it occurred again but also with numbness only on my right side, like my arm and leg were asleep, but I could move them normally. I looked at the product info for an antibiotic I was taking for flu symptoms and saw that ear ringing and numbness were possible side effects, so we thought that was the source. Much milder forms of these (what we now know are) seizures continued through the summer, never more than two a day and always less than a minute in duration. I never lost consciousness, and could carry on conversations throughout. Often they were barely noticeable. So we didn’t think much of them.
In early August, we decided to see the doctor for routine check-ups. I told him about the symptoms and he referred me to a specialist. The following Friday, we went to the neurologist (on crutches due to a torn Achilles tendon…more on that later). He seemed perplexed when I described the symptoms. He scheduled an EEG and MRI for Monday, expecting they would be inconclusive. But after the techs reviewed the MRI, they sent me immediately back to the neurologist. He broke the news to us that I have a golf ball size mass in my left temporal lobe. The neurologist seemed to be as surprised as we were. He prescribed anti-seizure medication to control the seizures and referred me to a neurosurgeon.
Marcie and I were taken aback. This is a pretty heavy load. Lots of questions and fears—some rational, some not, but we didn’t necessarily know which was which at first. We had to wait four more days to meet with the neurosurgeon. We both went through stages of fear, acceptance, and resolve. I am pretty laid back but this was a tough week emotionally and spiritually. And it did NOT help that Ted Kennedy died of brain cancer the same week!
Meeting the neurosurgeon. We were very pleased with the confidence and competence of the surgeon. He put us at ease and explained plainly and directly that:
1. I do have a tumor.
2. It is the size of a golf ball.
3. It is located in the insula, a region in the left temporal lobe.
4. It appears to be a grade 1 or grade 2 (low threat), primary tumor (meaning it originated in the brain).
5. Because of its size and location, it needs to come out.
The neurosurgeon acknowledges that brain surgery by definition is difficult, but this is more straight forward than other brain surgeries. There are risks as with any surgery of course. The temporal lobe, the home of my golf ball, controls language. Some of the more likely complications specific to this part of the brain include effects on speech and receptive language. I will see a speech therapist after the surgery who will determine the extent of impact on my speech and begin rehabilitation if necessary. The neurosurgeon said to be prepared to be out of work for a few months.
Best case: Hopefully, this tumor originated in the brain (primary) and is benign (grade 1), and they will get it all out. If they cannot get it all out, or if it is grade 2 (low threat, but could develop into a more serious grade 4 tumor), additional treatment may be necessary in the short or long term. We will know more after the surgery.
Marcie's brother, a physician in Kansas City, helped us secure a second opinion. It concurred with the first.
The surgery is scheduled for Monday, September 21. I will take the week prior to the surgery off work. I will spend parts of three days in pre-op tests and making other preparations. I will try to spend the rest of the time relaxing (as much as possible). We are confident the surgery will go well, and that we are on the road to a full recovery.
We bought some very stylish hats for me to wear post op. I always wanted a fedora!