Monday, January 16, 2006

update on my cousin (UPDATED)

Last week Wednesday they did a biopsy on Paula's tumor collecting 8 samples. She stayed overnight and went home with two small titanium plates and 5 staples in her head. After a couple days of rest she was up to her old self. They sent me home with a staple remover!

On Monday we had an appointment with our nuero-oncologist and he shared the pathology with us. Paula has a Grade II oligodendraglioma. The oncologist said it was the "best brain tumor to have, if you have to have a brain tumor". It has the longest prognosis of the types it could have been. He told us that the median survival for people with this tumor type was over 10 years. (For those of you that are not "math types", median means 50% are above and 50% are below) The future is still unknown, but will include radiation and chemotherapy. We strongly feel that your thoughts and prayers were with us as we heard the "good" news.

I would like to again thank you all for your thoughts and prayers. I would especially like to thank the JM Foreign Language department that braved tonight's weather and a trip to Stewartville to deliver 3 full meals, gift certificates for more meals, and enough snacks to last us a long time. It really means a lot to me and my family to be receiving the kind of support that you all have shown. Thanks again


"For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body. Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith, so that through my being with you again your joy in Christ Jesus will overflow on account of me." Philippians 1:21-26

For the first time ever in my life, God visited me in a dream. He told me to read Philippians. I did. I knew very little of Philippians other than that it was in the New Testament and that it was one of Paul's letters. It is still hard for me to believe, but it is so very true. Through this book of the Bible, God told me I was going to live for a long time, approximately 8 hours before the neuro-oncologist, Dr. Uhm at the Mayo Clinic, told me the same thing. Yes, we can all breathe a sigh of relief. I have the best type of brain tumor a person can have.

I am so amazed and touched by all of the emails, cards, flowers, gifts, and prayers that have been sent and said for me. I am not exaggerating when I say there have been thousands of prayers being said for me, and God has responded. Never before have I had such a strong faith as I do today. If God would have told me to read Luke and the Christmas Story, I would have said I had an overactive imagination. But Phillipians? Even I couldn't have come up with that one on my own.

So for you who want details, here they are:
I had my biopsy last Wednesday, 1/11 in the early afternoon, was in the Neuro-ICU overnight, and was home by noon Thursday 1/12.
The tumor is a Grade 2 Oligodendroglioma (the slowest growing/dividing type of tumor). It is possible that I have had this tumor for 5-10 years.
We are still waiting on genetic testing which will look at the actual DNA structure, specifically chromosomes 1 and 19, which won't affect treatment but will tell us a little more about prognosis.
I will be meeting with the radiation oncologist as well as a chemotherapy specialist within the next 1-2 weeks to determine the best treatment for me. Dr. Uhm wants to put together the "Best team possible" for me, which I told him I would greatly appreciate. Recent research has shown that combined radiation and chemotherapy for the lower grade tumors can be more beneficial than one or the other alone. They routinely combine the treatments for the Grade 3 and 4 tumors and are now conducting clinical trials for the lower grades. It sounds like 6 weeks of radiation with or without chemo.
There will be no surgery as the tumor is too large to safely remove without damaging the healthy brain cells.
Cognitively, I am at a score of 100 out of 100 on the Karnofsky Index, which shows that the tumor hasn't impaired my neurological functioning.
Since I had a seizure, my risk of having another one has increased, so I will be kept on Keppra for at least a year, just in case. I can, however, be safely at home with Maya and Jacob.
The median survival rate for this type of tumor is 10+ years. I have never done anything in the middle of the bell curve, and I don't plan to start now.
This web site has a great explanation of brain tumors:
There are still lots of questions, but the big ones have been answered. I'll be here for lots more birthday parties and Christmases. And you better believe I am going to live a lot fuller now that I know what I know. I expect all of you to do the same. And, I expect that you will ALL go find your Bibles and read Philippians. It is my new favorite book of the Bible.

Please pass this email on to anyone you feel would like to know what's going on with me. The more support while I'm going through this, the better!

"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. 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 minds in Christ Jesus." Philippians 4:4-7

Loving you all,
Paula Faye Roth Ramp

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