Home from Duke (oncology plan)

Hello all and thank you again for giving us time to get home to update. Today was a long day to say the least, we started at Duke at 9:30 this morning and stayed until after 1:00, after that came the 6 hour car ride home.We had been home for about an hour and then the reality of the situation set in and Rion had a panic attack. When we are up at Duke and around other people like him, he is able to look passed the physical side effects. but when we come home he realizes that he will have some physical differences that might always cause people to stare or ask questions. The thought of having to explain himself for the rest of his life is daunting and unfamiliar.   He is doing much better now, tired from the mediation he took, but stable.

It is hard to explain the emotional roller costar we are on these days but I am trying to press on to get this information out before we turn in for the night.

We are full of hope and optimism after our visit this time. The slogan at The Preston Robert Tisch Brain Tumor Center is "at Duke there is hope" and that couldn't be more true. We've met with the deputy director of neuro-oncology, his nurse, the neuro-oncologist we will follow up with, his nurse, and a FANTASTIC social worker. We left feeling renewed and full of optimism that we're going to beat this thing. Dr. Henry Friedman (deputy director) said "the mission is no less than to cure you."

AMEN!! and AMEN!!

The actual treatment plan will include a mixture of chemotherapy and radiation. Rion will start with 6 weeks of radiation, 5 days a week (Monday-Friday) for 30 minutes a day. At the same time, he will be taking a low dosage of chemo (Temodar) for 42 consecutive days. After that we will travel back to Duke (April 8th) for a follow up MRI and meet with the neuro-oncologist to discuss the progression. Our goal is to see NO new growth!!

After a 2-3 week break Rion will start on a higher dosage of Temodar that will last for a year. He will take the medication for 5 days on each 28 day cycle until he has had 12 treatments. (We are not sure what the follow up scan schedule will be for this time- ie. 3 months, 6 months, etc, but I am sure we will learn at the April appointment at Duke.)

The most encouraging part is knowing that the side effects from the radiation and Temodar are small and unlikely. Rion will probably lose his hair on the side of his head where the treatments are being done- this loss could be permanent or temporary. But the chemo is not likely to cause wide spread hair loss or uncontrollable nausea. He will start on anti-nausea meds and then stop if it seems nausea is not causing him any problems. We will work together to keep his (our) activity level(s) up as this is the best method to combat fatigue. We have already begun focusing on eating more healthy, REAL foods and this will help with any gastrointestinal side effects that may occur. As scary as it sounded initially, we both feel comfortable following the treatment plan that Duke has laid out for us.

The next steps have already been lined up as we were traveling back today. We will meet with the medical oncologist (who will prescribe the oral chemo) this Friday. Our 1st appointment with the radiation Oncologist will be next Monday morning. The initial appointments with each with be the typical paper work and medical history formalities, we will also need to go through a few planning appointments with the radiation oncologist before treatments can begin. With the urgency that Rion's diagnosis presents, we hope to start radiation the week after next. By this time his incision should be healed enough and we would not want to delay treatment any longer.

I re-read everything here and it still amazes me that yes, this is really happening. I want to wake up back on 11/21/2011 and have a do-over. Rion doesn't send me the text that Larry Munson has died and I don't respond that I already knew (which he never received.) And then I don't get that horrible phone call from his boss on my way to work that I need to head to Athens because something is wrong with Rion and they don't know what it is, but it's bad and I need to be careful but try to hurry. My life has changed so much in the past 2 months, I really can't describe it. Unless you've also been faced with your own mortality, or the person you are closest to in this world facing theirs, then you really can't understand what it's like. But I also know that I will NEVER stop fighting for Rion and praying that God has it in his plans to give us as much time together on this earth as possible. I know that none of us live forever, but the thought of losing my husband right now is just too painful, I refuse to acknowledge it's a possibility. No, Rion is a fighter and he is going to beat this thing and be CURED as Dr. Friedman said.

I have a lot more I want to share about our meeting with the social worker but that will have to wait until tomorrow as it's late and I still haven't had dinner. Rion

Love and blessings,

Emily and Rion