How to Live Between Office Visits

My husband, Scott, recently had "check-ups" with his medical and radiation oncologists. Though Scott has been feeling well and we had no reason to think the disease was back, we were both nervous. All appeared well, they said. His medical oncologist said he would see him in three months, at which time he would either do a CT scan or a PET scan. His radiation oncologist said he didn't need to see him for a year! Though we really like these guys, we were excited that he was given a three-month furlough from one and a whole year off from the other!

Every time we go through this I think of a book that Dr. Bernie Siegel wrote, "How to Live Between Office Visits." Dr. Siegel is an oncologist who is best known for his book "Love, Medicine and Miracles." I recommend the book to every person affected by cancer and have given several copies to family and friends over the years. I remember several years ago wondering why he would need to write a book about living between office visits. I mean, you just live - hopefully with gratitude and a positive outlook, but just be glad that you are a survivor and live! Sounds simple enough, but now I get it. Now I get why he had to write this book. It's not as simple as it sounds. Survivorship is a whole separate stage of the journey.

Many cancer patients and caregivers live with anxiety between office visits. They try to put on a good act, like nothing is bothering them, they are happy to be cancer-free and they are "back to normal." But survivorship is a new kind of normal. Patients and caregivers have been fighting death, and then they are told "You won, we think. We won't really know for several years if you won or not. But for now, you won. But if you start experiencing x-y-z, come in so we can see if maybe you didn't win, really. And you'll have to come in every so often so we can check if you are still the temporary-hopefully-permanent winner."

Phew.

Soon after Scott finished treatment and was feeling good, I encouraged him to get back to running or some kind of exercise. I told him that I would be happy to adjust my workout schedule, that perhaps we could alternate mornings or he could go after work while I made dinner or whatever. He tried to run for awhile, but his ankles, knees and hips hurt. He felt that this pain was a remnant from the chemo, and that his running days were over. Hmmm. I asked the oncologist if this could be so, and he said that yes, the chemo could cause atrophy of the muscles and that maybe running just wasn't the right exercise for him. He went on to say "But you are young enough that you are obligated to do something. Maybe biking or swimming. You have to do something physical."

Scott still hasn't figured out what that is going to be. We participated in a fashion show for Gilda's Club a few months ago, and one of the other survivors was a man who had been diagnosed with testicular cancer in his early 20's. He is a personal trainer and is developing a program specifically for cancer survivors to get their bodies back. I think I need to give him a call. We do have a health club membership, so we have access to machines, weights, swimming, classes, etc. In time he will find what is right for him. Probably when he gets sick of me nagging.

Survivorship is a pretty hot topic these days. It is what Lance Armstrong's Livestrong Foundation is all about. Because of research and new treatments, more people are surviving, and we're realizing that survivors need support too. You can't just say "you're cancer-free, see you in two months to see if you still are" and expect people to go back to living their life like they did pre-cancer. For many, cancer is seen as a chronic disease - something you live with. Don't get me wrong, survivorship for Scott and I is much less challenging than diagnosis, chemo, and radiation. It's just a stage for which there is less support - there is no plan to follow, no protocol. The only thing we know is when we go back to see the oncologist.

Today is actually the anniversary of Scott's diagnosis, and our son's 5th birthday. It is a day of reflection, gratitude, joy, and cake! It is a day of celebration. It is a day when we think about all we have been through and know that it was absolutely worth the fight. And as for me, I say a special prayer for those who lost the fight, who are not with their children on their birthdays or never had an opportunity to even have children.

So now, if you'll excuse me, I have a 5 year old who is really not concerned with what tomorrow might bring - all he knows is that it is HIS day and that there are presents on the table with his name on them. Hmmm, living in the moment - he may be on to something...