A Picture is Worth a Thousand Words

My very patient radiation therapists, in an attempt to answer my endless questions, suggested that I bring a camera. Here are the pictures and a description of what is going on:

When I arrive, I lay down on the platform, and place my head in the back-half of the mask. My head is now resting in a cradle that is attached to the table.

The top half of the mask is placed over my face. As the mask is placed, I bite into the mouthpiece attached to the top half of the mask and it is bolted to the cradle. Next, an x-ray is taken to confirm my exact position on the table. The white balls on the mask are used to precisely measure my location. Adjustments will be made to the table and x-rays re-taken until the postioning is perfect.

This is the first of eight beam positions used each day. The radiation treatment at each beam position takes about one minute.

This is position #2. The machine position doesn't move during a treatment, but the leaves that shape the beam do. The beam is shaped and the shape of the beam adjusts during each treatment position to deliver the exact dose needed. While I'm being treated, I can hear the leaves that shape the beam changing position.

And position #3.

After the first three positions, the technician moves the table, and we complete position #4.

Then, position #5. Although the table needs to be manually adjusted, the Novalis machine moves itself.

After one more table adjustment, I'm ready for the 6th position. The floor of the room moves out of the way so that the machine can move into this position.

Position #7

And finally - the last treatment of the day!

So that's the photo-tour of Fractionated Stereotactic/Intensity Modulated Radiotherapy. One bonus question - any guesses what I'm holding and why I'm holding it?

To More Faith,

Amy

3 down, 25 to go

I'm very glad to be able to say I've completed three treatments - and overall, they've gone well.

My first treatment was scheduled for Monday. I was not happy when the treatment center called a few hours before the appointment to tell me that the Novalis machine wasn't working, and that my appointment that day was cancelled. While I can't say I was looking forward to the treatment, I had very much wanted to have completed a session. Later in the day, it became funny, and I had to be glad that at least I wasn't the last person in the machine before it needed maintenance. For all of you that I've worked with maintaining equipment - I'm sure you understand how ironic the whole day felt!

On Tuesday, as I began my first treatment, I was full of questions about what broken down the previous day, how it was fixed and how often the equipment failed. I became convinced that the equipment was even more reliable than Oxnard's Co-Gens, and decided I could proceed. (The Oxnard Family Care plant has two co-generation units, and the department has a long and proud history of operating them at Best in Class reliability.)

The treatment itself was painless and not too scary. I was able to bring my own music CD. The total process takes about 15-20 minutes, of which 8 - 45 second blocks of time are actual radiation treatment. I've continued to ask so many questions that the techs are going to take pictures today's session so that I can better understand how the process works. I'll save the rest of the details for the next posting and will include the photos.

I did have a mild headache for the first couple of days, but that has gone away. This was a big relief. It is my hope to complete the first week without a significant headache, as this will mean that I'm likely out of the woods on one potential complication -brain swelling. I am grateful for: finally starting treatment, supporting and understanding co-workers, very smart and insightful friends who seem to call with just exactly the advice or reminder that I need, and a supportive husband and children.

To More Faith,

Amy

Cast all your anxiety on Him

So many of you have commented that you can't believe how well I'm doing that I feel compelled to fess up a bit. Both Bob and I are in total doing well, and under the circumstances, I do feel good about the plans to treat the tumor most of the time. All the same, I've had times when I've cried for hours and times I became angry about minor issues. Bob had to use our old Lamaze techniques during a completely painless PET scan to literally get me through the test. I share this as I don't want anyone to have images of me as a saint (I'm not), or to feel that they should be handling their own challenges with ease, since they don't have a brain tumor. We all have our challenges, and this happens to be mine. Here's what I feel I needed to learn most this week:

"Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings. And the God of all grace, who called You to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.

1 Peter 5:6-11

In The Screwtape Letters, C.S. Lewis writes about God wanting us to accept with patience the difficulties we have been dealt, and that the true cross we need to carry is not simply the problem, but the also our anxiety about the problem. In my case, the anxiety about the tumor may be more the issue to deal with than the tumor itself. Dealing with the tumor will largely mean showing up to treatments and taking care of myself physically. Dealing with the anxiety is going to require a day-by-day, minute-by-minute focus on God.

To More Faith,

Amy

How are the boys?

Bob and I are often asked how the boys are handling the tumor. Aidan is 11 1/2, Connor is 10 and Liam is 7 1/2. When my check-up required additional tests, we did tell them that the doctors needed to do more tests to be certain that the tumor hadn't grown back. That was followed by, "okay, what's for dinner?". The good news in our family is that our children are well accustomed to hearing about brain tumors. Lately, they've also heard a lot about knees. I've had two knee surgeries in the last year, and while they certainly know I'm frustrated, they're not worried about anything truly terrible happening as a result.

When we told the boys that the final tests had indicated that the tumor was regrowing, each of them had comments and questions that were right in line with their personalities. Aidan (future research scientist) said: "The doctors are going to use radiation to kill the tumor? Sweet! What color is radiation? Can I watch? How come you can't just stand next to the microwave?" Connor (future lawyer/salesperson) said: "What makes them so certain? What if they're wrong? How will you really know if they're right?" Liam (playing the baby of the family card), crawled into my lap, gave me a hug and asked: "Will you still be smart?" He certainly gave words to my biggest fear. Later, Liam said: "Mom, what are you doing, are you writing about me on your blog? Since I'm almost eight, can you just round up and tell everybody that I'm eight?"

The most profound discussion came a few days later. Aidan and I were baking cookies together, and I asked him how he was feeling about the tumor situation. I was trying to be the sensitive parent who makes sure that each child has a chance to express their feelings. Aidan looked at my quizzically, and asked "what do you mean?". I asked him if he was worried about anything, or if he had questions. He said "why would I worry?", and then began to quote:

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Phillipians 4:6-7

This verse was part of the Bible quiz verses last season, and one the boys worked hard to memorize. I was speechless at Aidan's composure and faith. End of "helpful parental conversation" and back to making cookies!

To More Faith,

Amy

The Treatment Plan

I will start radiation therapy on July 21. The type of radiation I'm having is called Fractionated Stereotactic Radiotherapy/Intensity Modulated Radiotherapy. I'll be having the treatment in West Chester at Precision Radiotherapy, which is associated with University Hospital. The treatments will take place daily from Monday through Friday.


Here are some details from Precision Radiotherapy's website:


Fractionated Stereotactic Radiotherapy (FSR) delivers radiation over many visits and uses stereotaxis to precisely locate the target and accurately reposition the patient for each treatment session. Until recently, fractionation was not possible using stereotaxis because there was no way to keep the rigid frame in place after the first treatment session. Repositionable masks and molds along with x-ray and infrared positioners ensure treatment accuracy, making multiple radiosurgery sessions possible. FSR offers the precision of stereotaxy for those with lesions near critical structures that cannot tolerate high doses. Patients return daily over several weeks to receive the complete radiation dose.





I will wear a mask during treatment. The mask fits tightly to my face and head to allow for very precise laser, infrared and x-ray body tracking. Intensity Modulated Radio Therapy (IMRT) will deliver radiation beams in multiple arcs, similar to 3D conformal. It uses sophisticated inverse planning software and multileaf collimators to both shape the radiation beam and change the intensity within each beam to deliver the optimum dose.





Radiation beams can be shaped by attaching blocks or collimators to the radiation machine to block a portion of the beam (similar to placing your finger in the path of a flashlight to cast a shadow). The goal is to shape the beam to the exact contour of the tumor and minimize exposure to normal tissue. Block devices shape the beam in a linear fashion and are only able to squarely shape the beam. Collimator devices are able to shape the beam into circular or elliptical shapes Multileaf collimators can focus and shape the beam in infinite ways and are the most precise method at this time.





If you are interested in more details - visit Precision Radiation's website at http://www.precisionradiotherapy.com/. My treatment will be on the Novalis machine.





Finally - here's a picture of me being fitted for my treatment mask.

The mask was made of sheets of plastic. The techs first put a shower cap over my hair. Next, they placed the sheet of plastic into warm water, and put that into a molded head rest. Then, I laid down, and they placed pieces of warmed plastic material on a couple of places on my face, and gave me one to bite into. Finally, they placed another warmed sheet of plastic over the top of my face, and pressed it around my face. These pictures were taken while I waited for it to cool. After it cooled, and was removed, targets were placed on the mask. The mask fits into a head rest, which is securely attached to a treatment table. The final step of the day was to have a CT scan while in the mask. When I have radiation treatment, this mask will keep me from moving, and the targets on the mask will guide the beams.

The mask might make a great Halloween costume when this is all done!

I continue to be grateful for much prayer and support. As treatment date approaches, and the list of to-do items gets shorter I do find it hard sometimes not to dwell in fear. Please pray that I will remember:

"For God has not given us a spirit of fear, but of power and of love and of a sound mind."

- 2 Timothy 1:7

To More Faith,

Amy

Show and Tell

Many of you have asked - where is this tumor? How big is it? The original tumor and the regrowth are in the exact same spot. The area is in my left temporal lobe, in an area of the meninges (brain lining tissue) called the tentorium, on top of the petrous ridge bone. This is good news in the sense that it very likely just a left over cell or two from the first tumor, and bad news in that this is a critical area and difficult to access. Here's the MRI from June 2003 of the original tumor:

To understand what you are looking at, imagine that you are looking at me as if I'm facing you. My left ear is on the right side of the image, and you can see teeth (the u-shape) just below the tumor. In June 2003 - the tumor was about the size and shape of a golf ball - about 4 cm in diameter.

Here's what my current MRI looks like:

As in the first image, imagine you are facing me, and you'll note my left ear on the right side of the picture. The tumor growth is the slightly thickened white area near my left ear. Since this was caught on a check-up it is still quite small. It is roughly 1cm x 1.5 cm x .4 cm. The small size makes me a great candidate for radiation therapy and I'm very relieved not to be facing another surgery at this point.

I want to say thanks again, for everyone's prayers and support. It means more to me than I can express. Bob, the boys and I are all doing well, but I'd be faking it if I didn't admit there have been times when I've felt terrified. Deep down, I know this is not productive or true - and it is often the kindness of all of you that keeps me focused on the facts.

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."

Romans 8:38-39

To More Faith,

Amy