Came For Friendship...

[Ry]

It seems appropriate to post this story on the 2 year anniversary of John's diagnosis. I have been dreading this day. While I am glad John has survived 2 years, I can't bring myself to be thankful or celebrate this day which changed us forever.

In the middle of the night John woke me up and said something was wrong. He felt his throat was closing, and there was a pressure in his head. We thought maybe he had been bitten by something and was having an allergic reaction. He got up and took some benedryl and went back to sleep. In the morning he went to the doctor, and I went to work. In about 6 hours he would be standing at my desk telling me he had lung cancer. We had no warning, no long waiting for tests, we were in shock.

He had done everything right, quit smoking years ago, exercised, and lost weight. The next day he started more tests at the hospital, a windowed CT and a biopsy. Our family doctor kept following our progress that day by phone and pushing us from one step to the next. After the biopsy we drove across town to the new cancer center and he started radiation. The radiation oncologist explained that the pressure in his neck was due to Superior Vena Cava Syndrome. The tumor was pressing on his vena cava and the blood was having trouble returning to his heart causing the veins in his neck to swell. This condition requires immediate treatment to shrink the tumor off the vein to allow blood flow. He had his first radiation treatment less than 24 hours of being diagnosed.

I think I cried more that day than I have in my entire life. I kept trying to reach my friend Karen and couldn't. We hadn't told either of our families, no one knew yet. Everything had been rushed so fast there was no time to think. When we got home that night our family doctor called and asked if we wanted to come in and talk to him the next day. Yes, we did. That morning he sat with us and told us how serious things were. He said that John probably had about four months and that he should get his affairs in order and we should do whatever we wanted to do, they'd work treatment around our plans He said to go take a trip or do whatever we wanted. I couldn't believe he had been so blunt. I remember he looked at me and said, I don't want you to come back to me later and say why didn't you tell me? He referred us to an oncologist and John started chemo three days later. The oncologist staged him as 3b and said he was inoperable.

It was hard to tell our family and friends, harder still to tell our children.

Shortly after his diagnosis I got on the internet searching for information and I ended up here (but it was the old board then). I posted a question on vena cava syndrome and Judy B answered me. She told me her story and told me I had to fight and see if I could get them to operate. She was the first person to give me hope. I was shell shocked, she woke me up, got me moving. She is the reason I pushed for a 2nd opinion on surgery. Someone gave us all the Bernie Siegel books on tape and we listened to them everywhere we went. They were so calming and hopeful. John started using the visualization techniques during treatment.

The first year was hard, and then suddenly amazingly things started to feel somewhat normal again after he started Iressa. We were able to do things again, plan things, take a vacation.

So here we are two years later.. .

As the song says, what a long strange trip it's been. We've discovered who our friends are, who we can count on, and who we can't. The worst thing for me was discovering how cruel and insensitive people could be. We've learned some hard lessons. The one thing that has brought me this far is being able to come to this site. I have learned so much here, met so many amazing people, both in person and online. I love you all. I couldn't have done this without you. It's not the end of the story, but the beginning.

Rochelle & John

Came but for friendship, took away love. Thomas Moore