Good News or Bad News?

What do you want first?

Good news:

As usual, it was a pleasure to meet such professionals in the field and especially in the field of sarcoma. The doctors at Dana Farber thought that I had received excellent treatment for my condition so far. They agreed with all the treatments, including surgeries, radiations, and chemo. They also agreed that we are now in a waiting period. One that can be used proactively to strengthen the mind and body as well as research new treatments that are showing promise for cancers similar to the Triton tumors. (If you remember, a triton tumor is an odd tumor that shows similarities to two sarcomas, those of nerve and tumors of muscle and bone. A Triton Tumor is a Malignant Peripheral Nerve Sheath Tumor with Focal Rhabdomyoblastic Differentiation) My oncologists are primarily watching developments in MPNST's even though their numbers are only in the hundreds. The most positive thing taken from the visit is the knowledge that I have some of the country’s best doctors from the country’s best hospitals working together to find the best treatment possible if any problems occur in the future.

Bad News:

Based on the history of my tumor, the local recurrence and metastatic disease within a year of treatment, the sarcoma specialist at Dana Farber believes that another recurrence in the lungs is inevitable in the next year or two. He thought I should stay positive, continue a healthy lifestyle, but mentally and physically prepare myself for another challenge.

Some of you got very angry with him telling me this. I understand why. People want their doctors to be positive and give them hope even if a struggle for health or one's life is on the horizon. I'm a realist. Ashley (who is an idealistic optimist) thinks I'm a pessimist, and a sarcastic one at that. The doctor sharing his opinion with me can be taken many ways. First, we all, including him, have to agree it is only an opinion. It isn’t fact. He can’t read the future from a crystal ball (as I’ve heard several doctors now use as an analogy). He gave me this information to prepare. Prepare for death…I don’t think so, but realistically, it’s something that you have to consider. Prepare for the fight…I think undoubtedly. If the enemy has been spotted on the side of a mountain opposite your camp, you want to know. You want to have your army powerful, organized, and primed. You want to have the wherewithal to attack first and the patience to watch for any threat. The trivial details of everyday life still transpire, but you’re watchful eye is always on the mountain, anticipating their first move. Despite the fact that every cell in your body wants to live out its life in peace, you will fight as hard and as long as you can to preserve yourself and everything you love. “Be Prepared.” To some it means more than to others. I want my doctors to alert me to potential threats rather than hold my hand and tell me everything’s going to be fine.

My army is strong, diversely filled with skill, support, and love. I’ll fight and keep the faith.

PS The pain med patch on my shoulder is strong stuff. I have guns in the house. Stay far away and definitely don’t look at me funny or try to invade my property… I’ll document the transition as it occurs.

Odd Coincidence News:

My new doctor who will lead some sarcoma clinical trials at Duke and I shared the same flight home. While waiting for our plane, we were able to discuss my case further and, after the short conversation, I felt much better about the whole situation. Better is an understatement, considering I had spent a good part of the afternoon pacing downtown Bean Town thinking I might only have a year to live. In a weird twist of events, I was seated beside a nice girl who ran clinical trials for a drug company in the RTP. She had a cast on her arm as well. Even stranger, they were both our first casts and we each had a family member with a below the knee amputation from a farming accident. Is there a psychic in the audience??...