[Rolepaul]

I am Paul, a 52 year old male, married to Nina, a 52 year old female. Nina was born in the former Soviet Union. She was a PhD in Geology, but her computer skills and personality were better suited to Massage Therapy, which she did professionally from 1994 (just before we married) until 2005. In 2005 Nina decided that she wanted to be an operating room nurse, and got her BSN from the top school in the state. She worked in operating rooms and on ICU floors, but struggled. In Nov 2009, an MRI showed brain involvement, which we dealt with and Nina continued to work/live/pester me to lose weight by walking five miles a day when she had time. Work was with bariatric weight loss centers with lap bands, both pre-op and adjustment of the bands.

Since December 15, 2011, Nina's world has changed location and focus. She lives at her brother's house in Houston, while I work in Raleigh and travel every two weeks to Houston to be with her. She has a car to drive, her five miles to walk, her Yoga, her Kindle, her computer, and her phone. She is not any different than a disease frr person, except that she has the same fears of everyone on this board. She has to go to the hospital twice a week at this point (but two days back to back every two weeks next week).

As everyone on this site knows the same, mortality weighs on her every day. Her diagnosis with spine involvement as well as brain involvement was devastating as my step son is 27 and just starting out on his own in life. He works in Maryland and lives in Arlington.

Our house had an offer two weeks before she was told about her disease progression. The sale of the house was handled, but the buyer delayed the sale for no reason twice for an additional 35 days, which caused a major financial burden as I had moved to an apartment with a lot of stuff in storage. We have now recovered financially, although $1000 per month in travel costs to visit Nina is painful.

I was born and raised in the US. Pharm manufacturing work appealed to me early and I have enjoyed my work. Herceptin is made on a large scale with work I did for an earlier drug. TDM-1 has its attachment occur with work I did at the same time. I did work on a project that now has implications on many of the stem cell products in the news. I worked on the primary cancer treatment for Ovarian cancer, and for colon cancer. Right now I have multiple drugs, but the primary one is for genetic Emphysema. And my foray into the food industry brought fat free yogurt and fat free sour cream's main ingredient.

My work gets 45-50 hours per week. I come to this board on breaks and lunch. I work on getting treatment for my wife and spreading what we have found to other patients, government agencies, cancer centers, and pharm organizations. I sleep four hours a night, and feel refreshed. I should walk five miles a day, but do not, so I look like John Candy and not like Brad Pitt.

Nina and used to travel a lot (Europe, Mexico, US, etc.), and now take a day of every trip to still do so locally to Houston. We want to cruise the Danube from Budapest to Southern Germany next year. We are going to Yellowstone this July for our birthdays/anniversary July 10 is mine, 15 is our anniversary, and 22 is Nina's.

This stuff is hard to deal with. Nov 2009 we were told 6 months, then two years of "two years", and then six to ten weeks, and now it looks like normal life span. I went to a counseler about stress and she said I am lucky that I am not in a hospital next to my wife due to a heart attack. I told her that I try not to stress over most things, but the road rage animal sometimes is not pretty.

All I can say is that this site has given me hope, resulted in frustration with how others are treated by docs, insurance, work, etc., and given me an opportunity to help others. There are many long term survivors which should give all hope.