Monday, February 4, 2008

What if green hair grows on my chest?

The title of this blog is from a Shel Silverstein poem I'm sure I read to my kids, but they're all convinced I made it up since they don't remember it. I was reminded of it today because we had another oncology appointment where we asked a lot of "What if?" questions. We found out that although there is no cancer in my adrenal glands, it is still considered Stage 4 since it is in my bones, so the plan for my treatment hasn't changed. I will still be getting two types of chemo and Avastin as we had discussed.

I talked with Dr. Segota about my family's desire that I get a second opinion today. She gave me great recommendations, and we've decided to postpone my first cycle of chemo until after I hear back from the doctors at Sloan-Kettering, which is known for excellence in its studies of lung cancer. She said there is no risk in such a slight delay in my treatment, and it is actually safer to wait because many studies won't accept me for participation if I've already begun chemotherapy. I called Sloan-Kettering this afternoon, and they have already been faxed much of my information, so hopefully I'll have an appointment there next week. Mackenzie and I are excited that we'll get a trip to New York City out of it! I'm pretty sure I deserve a vacation :-).

We met Dr. Segota's very personable nurse Debbie today, who explained much of what to expect during my treatment. I remember a lot from going through it with my mom, but it's a good review, and my family appreciated her information. My son Steve, who is a Naval hospital corpsman (or surgical tech), joined us at the appointment today, so he could enlighten me about all the scientific and more technical medical information when we were at lunch afterward. You'll just have to trust me that it was fascinating because I'm not even going to attempt to repeat the details he told us!

A few days ago, God placed a woman in my path who further boosted my outlook on my condition. Unfortunately, I never got her name, but she sat across from me as I waited for my nails to dry after a manicure. She told me that she has been living with cancer for three and a half years, after originally being given a six month estimate. The cancer is not completely eradicated from her body, but it has gotten much smaller, and she remains on a maintenance dose of chemo. She gave me great tips from her experience and gave me a whole new hope in considering my cancer. I had originally thought, I'm either going to be 100% cancer-free, or I will die from it, but now I see there is even another possibility. People live happy lives far beyond a terminal prognosis, not without cancer, but managing their cancer so that they can return to doing all the things they enjoy. So many people have told me stories of friends who received miraculous healing or who far outlived their prognosis, and I am so thankful for God's blessings on them. But it was so encouraging to meet one of these people face to face as she is going through it. I am thankful that she was willing to talk to me about what God is doing in her life.

After the appointment today, it's been fun times with Bob, Mackenzie, Steve, Dawn, Emma, Annabelle, and Addison! Dawn brought a bubble machine that was a big hit, and the kids fell in love with the built in camera on Mackenzie's Macbook. Getting them to sit still for a picture on the camera was another story completely!


6 comments:

Anonymous said...

Mom,

It is so hard to try to figure out God's will in some situations. And then in others it is so clear. It makes me think of the analogy of trying to pour the ocean into a 1 cup measuring glass. That's what God's understanding is to ours. But here is what I do understand, I am so thankful for every minute God has given us together and I pray He will give us many, many more. As I pray for your healing I also pray God will give me time from work to spend time with you. I love the fact that we are still laughing together.
-Steve (Walks on water)

Anonymous said...

Jayne;
I don't know you, I never even met you, but worked for 3 years with your great daughter Erin at Spanish River Christian School. I am a cancer survivor and also realized ten years ago that this disease is not controlled by us, the doctors or the drugs. It is in God's control. I am here to tell you that I look back on my cancer and consider it one of the greatest gifts of my life. It taught me more about myself, my family , and my friends,than i ever knew. It taught me how truly blessed I am to have family and friends, but also a God who hears me and knows how desperatley I need him. The journey will seem long, but will be over before you know it. God is watching, He is controlling, and He is hugging you every minute. You will be in the prayers of many of us at SRCS. We will also lift Erin and the rest of your family up as well.
Amy Cecil

Anonymous said...

Jayne,

I am so glad that I got to stop by and spend some time with you and everyone else on Sunday. It is always so much fun to be at your house and your family makes me feel right at home. I just wanted to let you know that we are all praying for you up here and gainesville. The picture of you and Bob is still proudly displayed front and center on the fridge. And each time I pass it I say a quick prayer for strength and healing for you. I know God can and will do great things. Your blog is such and encouragement to me and really helps me keep my life and priorities in check. I love you and kenz and the rest of your family. I'm sure I'll be back to visit soon. xoxoxo
-Laura

Ted Stephens III said...

hi jayne--

your stories are powerful, your strength inspirational. i continue sending prayers your way.

hopefully i'll catch up with you and kenz when you make it to the city. i'm probably not up for a shopping day, but maybe a broadway show. :)

ted III

Anonymous said...

I am so glad you are going to Sloane - they are a wonderful hospital and they will take great care of you. When are you guys going?? Make the best of the trip - see lots of shows and live it up!! You are always in my prayers. I love you!!
Rachel
P.S. Ask Sloane about hotels, they get discounts at alot of them for their patients. We did with my Dad - stayed at the Bentley right across the street from the Hospital!!

Anonymous said...

Your right ,I think it is just that our family cancer has been so matter of fact. I know a lady here that has been "bad" three times since I have known her. She was at the ballgame..(in a Hat)..cheering away Frday night.
Jayne, green hair does grow on some of our chests. God knows this. "He will not give yo more than you can handle"...I too had an angel sent to me in the airport on the flight to Ky to get Cody and Adam. I think they come when he knows we need a little help to keeep handling.
Love you ,
JODY

PS Did you say you needed someone to hold your other hand in NY !?!