Sunday, May 25, 2008

"I Know You'll Be Happy"

It is early in the morning on the 25th of May. Yesterday, was Jeff's and my 10 year wedding anniversary. I remember we had talked 10 years ago, as we soaked in the ocean views of Kauai, Hawaii, that we would come back on our 10 year anniversary. We knew it would be different--we'd hoped we would have children by then. We never dreamed what a difference 10 years would make. Read this entry and then please continue to the next which is what this website is all about. This morning I write this because, as Jeff said, writing is my therapy. Good or bad, it helps me get the thoughts and memories out that swirl in my head and keep me from sleep. Please read on about the clinic, just humor me every now and then when I need to talk, but there is no one there to hear.

The day we sat in the doctor's office at MD Anderson--right after we knew in our heads, but not in our hearts, that Jeff would not live much longer--Jeff told me he could see that one day the girls and I would be happy again. I cannot imagine when that will be. For Lauren and Ashtyn's sake, I want that to be true. That is why I get up every day, make breakfast, wake them gently and cuddle and love them as much as I possibly can manage. Some days I see a glimpse of the sun or Son, as my friend Betty put it. Some days I see a big fat brick wall in my way that blocks my path and I just don't know how to move. I don't know yet what kind of day today will be. I will really try to make it good. Maybe writing this will help. These words have been swimming in my head for weeks--it is time they get out.

"You need to tell him it's OK to go--he needs to hear that." It is what the hospice nurses told me the last day of Jeff's life here. Having lived through my father's death, I know that there is a place with God that allows my Dad to watch over us. But to tell Jeff it was "OK to go" was counter intuitive. It wasn't ok to go--I told him that I knew I had to let him go but I didn't want to. He is my history, my future, my moment. It wasn't ok that he had to go without being able to recognize his daughters and wife long enough to know our names and to kiss us goodbye. It wasn't ok that he was so confused he didn't know he was even at home. It wasn't ok that his life was cut short because of human error. I said it, though, because to try to keep him here was hugely selfish. I would have taken care of him for the rest of my life, but I knew that he needed to be free from the pain, the tumors, the fear, the deep sadness of knowing that he wouldn't be there to catch his daughters when they fell or hold them in the storm. He knew that I would be there for them, but being the Daddy he was, he really wanted to have more time with his "babies" as he called them.

Presently, I am faced with how to handle our business. I have to pack up his office--how do I do this? It is like severing one more tie to him--adding one more degree of separation. All of his baseball memorabilia, pictures of the girls over the years that he'd show all of his clients, his files about our past--taxes, seminars we gave together, business plans we created, credit card statements and files that have pages and pages of what it means to be diagnosed with stage IV metastatic melanoma.

I just watched P.S. I Love You. It's about a young woman, ironically named Holly, whose husband dies suddenly from a brain tumor. He leaves her notes and tape recordings that crop up over the first year of his death. His goal is to help her get on with her life by helping her to live each day. Small things like buying a lamp to big things like a trip to his homeland of Ireland. Each helping to confront something that holds her back, until she can fly on her own again.

I wish Jeff had left me something--I read every journal I could find. He started about five. Each one at a different phase in our marriage. Each journal has about 10 to 20 pages, then they end. One is from our wedding in Hawaii, one is about the impending birth of our first child Lauren and her first few hours on earth, one is filled with quotes from people he admired, one is about a time in our marriage when we were struggling with each other, one is about his diagnosis. In this journal he only makes entries through mid-December 2007, when he finished biochemo and we were preparing to come home. After this, he just was too tired and hurt so much that he couldn't even listen to his favorite music or read his cherished books because the pain kept him from focusing. At this point he couldn't hold me or his children because the tumors and the pain made it unbearable for him to be touched.

So--yes, he had to go. But it wasn't OK. I hate that I can't seem to remember him as healthy or with hair or smiling. Jeff would not want my thoughts to be filled with images of him and how he looked those last few moments after he passed. Sometimes I get a glimpse of him in the yard working on a landscaping idea or at the office sitting at his computer preparing for a client. I don't know if it will ever be" OK for him to go." I do know that I have to go on each day. I have to make sure that our little girls go on each day. I have to make sure that they grow-up secure in the knowledge that Daddy loves them, that I love them and that they make every day of my life a blessing. They are what Jeff left me--not tape recordings or letters or videos. He left me the best of who he is. He left me belly laughs, sweet kisses, soccer games, scooter rides, stinky feet and sticky fingers and the dearest angels God ever gave anyone. Thank you Jeff for all you did and continue to do for us. I love you with all of my heart and soul--Happy Anniversary Babe.

Friday, May 23, 2008

Make It Happen

The Moment is Yours--Define It. I keep this phrase in front of me all the time. This moment is what we have--we can make it count or we can let it slip away. All it takes is one small pebble tossed into the water to create ripples that expand across a waterway. Please, let's take this moment and turn ripples into tidal waves. As a community there are too many of us touched by cancer. I wish I had the magic wand to make it all go away. I know there are answers--I know we are on the edge of winning many of the battles. The war against cancer, to end it, to make it less than nothing, may take some time. What we can do is make it better for those who do have cancer and for those who take care of and love those cancer patients.

We must make the idea of an Urgent Care Cancer Clinic a reality. We need to care for those we love and cherish with the skill and knowledge of the large cancer clinics that dot the world. It is possible to make things better, more comfortable, more efficient, more kind right here in Springfield.

We need this clinic. It makes sense. It is the right thing to do. It will provide a place for urgent care needs of cancer patients; it will provide a place to meditate, pray or just regain focus for patients and caregivers; it will provide a research base that helps cancer patients find clinical trials. When Jeff was diagnosed he and I pored through websites trying to find protocols that would help. We had to go to page after page of websites and then we were stumped by the application process and the medical terminology. Did he qualify or not? This clinic and others like it can provide information that presents all the clinical trials available for a specific cancer diagnosis. This system should allow for information to be taken once and disseminated to every trial that is available. Time is a precious thing when one is trying to find a way through the maze of treatment options. If a single application could be used as the resource for all clinical trial program it would be possible for a patient to qualify for treatments and then decide with his or her oncologist which one makes sense for them. We had great opportunities at MD Anderson, but I was always searching for other break throughs at other clinics. Even when I found things that looked promising there was the paperwork nightmare to be addressed. Getting labs and MRI's in the right hands to see what the options were. Why can't we warehouse this basic information in a database. Jeff had more MRI's in six months than most households have in a lifetime.

Another goal of the foundation is to provide a mobile cancer clinic. It is a necessary treatment option. If hospice can provide end of life services in such a gracious, loving and complete manner, why can't we provide something similar for those who are fighting for their lives? Why shouldn't a clinic be available that can visit the patients who are too sick to get out of bed and wait at the doctor's office just to check oxygen levels or have blood drawn or to pick up prescriptions? When Jeff finished biochemo he was so nauseated that movement sent him into spirals of dizziness and vomiting that would bring a 49er's Linebacker to his knees and in tears. But he was expected to get up, get dressed and go to the doctor's office and wait endlessly so they could check how nauseated he was, what his blood counts were and how well he could breathe.

These ideas just touch the surface of what we could do as a community. Let's take the challenge--let's make it better--let's set the bar. We can show the rest of the country that this can be done. The only urgent care cancer clinics should not just be at an MD Anderson or John Wayne Cancer Clinic or the Mayo Clinic. It should be in our backyard.

Join Jeff's Hope. Help those with cancer focus on becoming well and whole. Help them keep their vision of health. The Urgent Care Cancer Clinic can be a reality. It is within reach--all you have to do is reach a little further, try a little harder, focus more clearly and you will see it too.

Email me at . Thank you from the bottom of our hearts.