Great news and photos of Karen

Karen's surgery last week went very well. She is back home and healing. Even better is the news on her biopsy. Here's a note from Tom and Karen:

We just received a call from our neurosurgeon and head of Karen’s medical team (Dr. Mark Rosenblum) with the Official Pathology Report, and there is NO CANCER!!! Praise God!! The findings are that the material he removed is scar tissue and reactive changes as a result of Karen’s previous radiation and chemotherapy. The MRI taken Thursday night after surgery showed that he did remove all of the “enhancing” material from her tumor cavity. Karen continues to heal quickly and is pain free, her left foot drop issues appear to be improved following surgery, and she is spending time each day walking to gain back her stamina! All praises to God!! I will continue to send out updates regarding Karen’s healing as well as we will update our journal of all the places we have seen God throughout this journey, soon. I do want to thank all of you for your fervent prayers for Karen and our family!! Word’s can not express how much we appreciate you and your prayers!!!

Blessings,

Tom and Karen

I hope this news brings you much joy! God is good!

To More Faith,

Amy

Please pray for Karen

So many of you have continued to check-in with me and ask how I am doing. I continue to be without any physical symptoms and am grateful for that. Today, I have a prayer request on behalf of someone else whose been supporting me.

Karen is a friend, who I've met through mutual friends. As a brain tumor survivor and a woman of faith, Karen and her husband Tom, have been a great source of both spiritual and technical help for Bob and I. Karen recently learned that she had symptoms that may indicate tumor regrowth and is having surgery tommorow in Dearborn, Michigan.

Here is Tom's note (In italics):

Please pray for God’s peace to fill Karen and the rest of the family as we approach her craniotomy on Thursday, Oct 16! We have all had some very anxious moments over the past week as we start to think as humans about what could happen. When we have taken these anxious moments to Jesus, He has taken them from us and replaced them with His peace! So please continue to lift us up in prayer!!

Our current plans are for Karen to drive up to her parents this afternoon for pre-op tests on Wednesday (MRI, blood work, chest x-ray, EKG). My son and I will drive up Wednesday afternoon/early evening and our daughter will fly into Detroit Wednesday evening from school. Karen is scheduled for her craniotomy at 8am on Thursday, and we are expecting the surgery to last 3-4 hours. She will be in the hospital Thursday and will get out on Friday (we pray) based on our previous experiences. We will stay at her parent’s house this weekend and plan to return to Cincinnati on Sunday.

Specific things to pray for are:
- Travel mercies for Karen this afternoon.
- Travel mercies for our son, our daughter, and I as we travel to Detroit Wednesday.
- To shield us from Satan and his worries, doubts, fears, confusion by placing the whole armor of God on each of us (see scripture below)!
- To prepare the Medical Team for her surgery.
- To prepare the hearts of those who are receiving these emails, but do not yet believe in Jesus!
- For Karen’s complete healing and speedy recovery!
- Continue to praise God!!
- That Karen would come out of surgery with no physical or mental deficits!
- That Karen’s current left foot/leg deficits would be healed.
- For a protective covering over our family relationships in the midst of our stress and anxiousness!

We are in the process of documenting all the places we have seen God since we started on this journey last week. Here are just a few:
1) God directed our daughter to a Christian university where she has a strong faith filled community. He allowed her the time to become firmly established before having to deal with her Mom’s medical trials.
2) The sermon at our Church right after the Dr. called with the results was “In God We Trust”!
3) Karen’s bible study this year is “Believing God”
4) A great friend, a cancer survivor whom we have not seen for some time, saw us after church Sunday and came over to say that God had given her a vision of Karen throughout the service and that she was very weary. She had no prior knowledge of what Karen had just been told and she was very tired and weary!
5) Our Small Group and several other close friends prayed over Karen, our son, our daughter, and myself on Monday evening. What a sweet time with the Lord!! His peace has filled us throughout this journey! We are proclaiming His love and faithfulness!
6) The sweet time with our daughter at college this past weekend! She has a great supportive group of friends.
7) The sermon at our daughter’s church on Sunday was a great message on “Why trials occur to us”. The message was one of hope in Christ! We are participating in the eternal here on earth!
8) Prior to each of Karen’s previous surgeries we have seen a rainbow, and we saw one last evening after our son’s football game!
9) In all of the people that are praying for Karen and our family! There are hundreds and possibly thousands! We are so humbled and so blessed by all of your fervent prayers for Karen’s complete healing.
10) In all of the offers of help! We will surely need help after Karen’s surgery and I will let you know.
11) In those of you that are also facing a trial and are being ministered to by Karen’s testimony. God is so awesome! He wants all of us to run to Him with all of our needs and He does take them on Himself!
12) In those of you who are seeking Jesus! He is chasing after you and wants you to come to Him so, so much!

This is the “short list”, so many more to come!!! Some of you are probably saying, “How can Karen and Tom be at peace when they just heard that the brain cancer may be back?” God is real! He is here with us, all of us!! He can do for you what He is doing for us! If this intrigues you, please call or email us. Please forward this on to anyone you wish to!

The Whole Armor of God
Galatians 6:10-20 (NIV)
10Finally, be strong in the Lord and in the strength of his might. 11 Put on the whole armor of God, that you may be able to stand against the schemes of the devil. 12For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. 13Therefore take up the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand firm. 14Stand therefore, having fastened on the belt of truth, and having put on the breastplate of righteousness, 15and, as shoes for your feet, having put on the readiness given by the gospel of peace. 16In all circumstances take up the shield of faith, with which you can extinguish all the flaming darts of the evil one; 17and take the helmet of salvation, and the sword of the Spirit, which is the word of God, 18praying at all times in the Spirit, with all prayer and supplication. To that end keep alert with all perseverance, making supplication for all the saints, 19and also for me, that words may be given to me in opening my mouth boldly to proclaim the mystery of the gospel, 20for which I am an ambassador in chains, that I may declare it boldly, as I ought to speak.

Please pray that Karen, Tom and their entire family and medical will be well equipment with Armor of God tommorow and as her healing continues. I will post more on how she is doing as soon as I know more.

To More Faith,

Amy

The New and Improved Amy - Now Meningioma Free!*

I have completed 28 treatments, and am now done with radiation therapy. The only symptom I had the entire time was a couple of headaches. Although I was careful with my sleep, I really didn't notice any fatigue. So what's next? Waiting, and hopefully waiting patiently. Unless I have concerning symptoms, I will not have any further checkups until mid-February. It will take six months to allow the radiation to complete its work, and give any remaining tumor time enough to grow. At that point, an MRI can be meaningful. We hope to see the tumor shrink, or stay the same size. As long as the tumor doesn't grow, we will consider the treatment a success. It is certainly possible that the next MRI results will be ambigious. In any case, I'll be having MRI's for the rest of my life. At this point, periodic PM checks feel like the right thing to do!

While I am very grateful to be feeling well, and to have great statistics as a reason for comfort, I know that balancing patience and action is going to be a challenge for me. The time I've spent traveling to and from radiation appointments brought a sense of security. Now that I'm no longer in daily appointments, my sense of security can only come from God. Intellectually, I know there's no better place to be. Emotionally - this is going to be a daily struggle. Clearly, God is going to teach me to be patient. For those of you that have been praying - thank you! My biggest prayer request is now:

"we have not stopped praying for you, and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding. And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father"
Colossians 1:10-12a

To More Faith,

Amy








* This statement has not been approved by P&G's legal department, but can be assumed based on expected outcomes for 90% of patients. :)

A Cheerful Heart Is Good Medicine

I've now completed 9 of 28 treatments. Several of you who've been through challenges have reminded me to be aware of the stages of the grieving process - which will include anger, and not necessarily anger directed at the tumor. A dear friend who's been through a medical trial advised me to expect my emotions would be more extreme than normal, and along with the expected overreaction to bad or sad situations, that I might also find funny things funnier than normal. As Proverbs 17:22 says: "A cheerful heart is good medicine, but a crushed spirit dries up the bones." With that in mind, I've been trying to enjoy myself.

So, this week I took a break from my usual thought provoking historical fiction and read Cheaper by the Dozen - borrowed from Aidan's 6th grade required reading list. I laughed out loud. Liam imitated my belly laugh - which made us both laugh even harder. Connor provided me with a long list of jokes - most of them involving bodily function humor. I'll skip the details. Attached is my father's contribution:

This week I spent time with a good friend, and went out to dinner with Bob. The real question is, why wait for a brain tumor? I'm quite sure that everything that really needed to get done was completed this past week, and in the future - laughing and having fun are going to need to stay closer to the top of my to-do list. If you have some jokes, funny videos, movie or book suggestions, please add them to your comments, or email me and I'll share them on the blog.

I've been feeling great, and it wouldn't be apparent to anyone that didn't already know that I have a medical issue. Each day during my appointment, I am reminded that while I may think I have it rough I am in far better shape than many people and have plenty to be grateful for. My radiation therapists remind me that I will likely feel tired soon, and not to be discouraged when that happens. Thank you again for your prayers and support!

To More Faith,

Amy

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

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

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