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
Sunday, July 20, 2008
Wednesday, July 16, 2008
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
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
Saturday, July 12, 2008
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.
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
Saturday, July 5, 2008
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
Monday, June 30, 2008
More Opinions & Some Great News
We had a busy week. Based on recommendations from Mayfield Clinic in Cincinnati, we sought followup opinions in three locations: Cleveland Clinic (Cleveland, OH), MD Anderson (Houston, TX) and University of California - San Francisco. I learned that several major brain tumor centers will provide a free second opinion that doesn't require the patient to travel. In my case, I was close enough to both Mayfield and Cleveland that I chose to be seen in person, and submitted my information through the mail to MD Anderson and UCSF.
Essentially, all four centers agree that my MRI is indicative of a growing meningioma, and that it does require treatment. As to be expected, there are slight differences in their recommendations, but the general consensus is that Fractionated Sterotactic Radiotherapy is the right treatment plan. I was also able to confirm my understanding that I'm going to have the best possible treatment in Cincinnati. Mayfield Clinic is one of the most experienced practices in the country for FSR, and I'll get the best possible care here.
The best news of the week is that the original tumor samples have been graded as WHO Grade 1. When I first sought an opinion from Mayfield Clinic, the tissue samples from the surgery in 6/03 were re-analyzed. Tumor grading standards have changed, and the first look at grading the original tumor by today's standards indicated the tumor was WHO Grade 2. About 95% of meningiomas are Grade 1 - benign. About 2-3% are Grade 2 - atypical, and 2-3% are Grade 3 - malignant. Treating a Grade 2 tumor meant a longer period of radiation, and greater risks of side effects, complications and another recurrence. As Connor (our ten year old) said "This is the best thing I've heard about that tumor in three weeks!"
I am grateful this week for getting closer to a final treatment plan, a great vacation with friends from college, and great support from our family and friends. I have seen so many seriously ill people in the waiting rooms with me this week, many of them alone. While this is not an easy situation, it would be unbearable alone. Thank you for being with me!
To More Grace,
Amy
Essentially, all four centers agree that my MRI is indicative of a growing meningioma, and that it does require treatment. As to be expected, there are slight differences in their recommendations, but the general consensus is that Fractionated Sterotactic Radiotherapy is the right treatment plan. I was also able to confirm my understanding that I'm going to have the best possible treatment in Cincinnati. Mayfield Clinic is one of the most experienced practices in the country for FSR, and I'll get the best possible care here.
The best news of the week is that the original tumor samples have been graded as WHO Grade 1. When I first sought an opinion from Mayfield Clinic, the tissue samples from the surgery in 6/03 were re-analyzed. Tumor grading standards have changed, and the first look at grading the original tumor by today's standards indicated the tumor was WHO Grade 2. About 95% of meningiomas are Grade 1 - benign. About 2-3% are Grade 2 - atypical, and 2-3% are Grade 3 - malignant. Treating a Grade 2 tumor meant a longer period of radiation, and greater risks of side effects, complications and another recurrence. As Connor (our ten year old) said "This is the best thing I've heard about that tumor in three weeks!"
I am grateful this week for getting closer to a final treatment plan, a great vacation with friends from college, and great support from our family and friends. I have seen so many seriously ill people in the waiting rooms with me this week, many of them alone. While this is not an easy situation, it would be unbearable alone. Thank you for being with me!
To More Grace,
Amy
Monday, June 23, 2008
Round Two
As many of you know, I was diagnosed with a benign meningioma in June 2003. After the inital terrifying diagnosis, we found a surgeon with a different technique (a skull base brain surgeon). I had the surgery in late June 03 and recovered very quickly. As part of my checkups, I have regular scans. The most recent scan shows recurrent tumor growth. So far, I've seen multiple doctors at Mayfield Clinic (University Hospital's Neuro program) and the recommendation is that I have radiation therapy. The specific reco is Fractionated Stereotactic Radiotherapy (FSR). This type of radiation is very focused and will specifically target the tumor with the least possible side effects.
Bob and I have received a whole lot of support already, and we are grateful. Tommorow we will travel to Cleveland Clinic for another round of opinions. I believe that we will have my current treatment plan confirmed, but certainly believe in second (and sometimes third and fourth) opinions.
I have no doubt that the great outcome I had five years ago was a direct result of prayer support. Back then, the information flowed via email chains. Today, I'll have the benefit of using a blog - and the benefit of FSR. I will have no less need for prayer. I'll be using this as an efficient way to keep everyone up to speed, and hopefully share some laughs along the way. Over time, I'll add some details on what happened five years ago, how the treatment works, etc. Please pray for wisdom and discernment for Bob and I as we travel to Cleveland tommorow and meet with the physicians there. Please also pray that this second round of addressing the tumor will completely eliminate it - with no complications. Finally, I would ask you to pray that we would fully trust God throughout the process - and grow to a greater faith in Him and in His Son.
To More Faith,
Amy
Bob and I have received a whole lot of support already, and we are grateful. Tommorow we will travel to Cleveland Clinic for another round of opinions. I believe that we will have my current treatment plan confirmed, but certainly believe in second (and sometimes third and fourth) opinions.
I have no doubt that the great outcome I had five years ago was a direct result of prayer support. Back then, the information flowed via email chains. Today, I'll have the benefit of using a blog - and the benefit of FSR. I will have no less need for prayer. I'll be using this as an efficient way to keep everyone up to speed, and hopefully share some laughs along the way. Over time, I'll add some details on what happened five years ago, how the treatment works, etc. Please pray for wisdom and discernment for Bob and I as we travel to Cleveland tommorow and meet with the physicians there. Please also pray that this second round of addressing the tumor will completely eliminate it - with no complications. Finally, I would ask you to pray that we would fully trust God throughout the process - and grow to a greater faith in Him and in His Son.
To More Faith,
Amy
Subscribe to:
Posts (Atom)