Thursday, October 29, 2009

Go zap those suckers!

"Go zap those suckers!"-the incredible encouragement my daughters gave me this morning before they went to school. My first radiation treatment is this afternoon at NIH.

Monday, October 26, 2009

It's Go Time

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.

Brain Tumors and Treatment 101

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!

Happy Halloweek everybody!

Thursday, October 22, 2009

Exercise: Approved!

I received a call from the neurosurgeon's office today. They gave me the go-ahead that I can resume normal exercise again. It was not allowed immediately following the surgery because of the risk of damage (bleeding, swelling) in the cranium.

Cardiovascular exercise, running, swimming, cycling is all okay!!!!
Very excited but I am still in the achilles boot for 3 more weeks. I'm going to try to get to the pool soon. Will resume some basement exercise; light weights and sit-ups and the stationary bike.
Also have my first achilles rehab session tomorrow here in Cheverly.

Tuesday, October 20, 2009

A Little Giddy (Over my ankle)

We went to the ortho today. He was impressed with the progress of the achilles tendon (probably connected with the steroid I have been taking since the brain surgery). He took away the heel wedge in the brace. I am now walking even keeled. I can start rehab to build up the calf muscle. He projects only three more weeks of the brace.

Monday, October 19, 2009

Golden slumbers

I slept hard last night for the first time in a month! I have been taking a steroid since the surgery. A side effect has been very light and interrupted sleep. Usually only 3 straight hours, awake for an hour or more and then only a couple more hours, very annoying.
I have been stepping down the dose to 1/4 of the original and now I can sleep hard for more than 7 hours! Feels so much better. Another week and I should be off the steroid. Should reduce the pudginess in my cheeks, too.

Go to the Orthopedist tomorrow to hopefully begin the rehab and start using my achilles tendon again and build up strength. Can't wait to get on a bike.

Friday, October 9, 2009


Visited the National Institute of Health (NIH) in Bethesda, Maryland for my first post-op MRI.
Spent almost an hour in the scanner. MRIs are very loud, buzzy, rattling and some find them claustrophobic. I, however, can fall right asleep and snooze through almost the whole process. Great nap today. Since the scan is just on my head, I did not even have to put on a gown, stayed in my street clothes (with my boot.)

Sunday, October 4, 2009

The clips are out and I needed a haircut!

Finally, got the 29 pins out of my scalp. My haircut was very uneven. The girls had a blast shaving my head! The scar is now laying flat and is being hidden as my hair returns.