Patient Care, Perspectives, Sarcoma

Inhabited

“It’s just so hard, Mo!” she exclaimed amidst tears, taking in labored breaths with her oxygen on. I had delivered the news that the tumors again were stable, which just meant they were not growing. “Stable”, I wonder where we come up with such terms and expect our patients to grasp the meaning. Stable, I guess, means: it’s quiet, not dramatic or anything, not out of control.. but then it is all relative. The cancer has not left her body. In each nodule billions of cells divide and multiply, and the CT scan is unable to tell the whole truth of what really was going on.

The conversation took a turn to where she was now sobbing. So lets do this like the movies, where a screen shot would say something like ….

10 minutes earlier

I had walked in and greeted my patient with a hug, she was a big advocate of my program and always supported cancer research. I had gone off on a tangent telling her about a new way of attacking cancer based on a test we were now doing in the cancer clinic identifying potential genetic targets. Here I go again sounding all sophisticated, but cancer growth often is dependent on what we call “pathways” that cause the cancer cells to survive in the environment they grow in. If identified, these signals can also be interrupted and the cancer treated, controlled or stabilized. I had found a potential agent that could be added to her current regimen and I was talking to her about this, when she suddenly started to sob.

“Stable” the word just hung there in the air. Not better, not gone. I felt the hard truth was that she was inhabited by this cancer. It was not going away like we would hope when we deliver therapy. She carries it along with her every day, in her body, memory, and heart. She must live amongst her family and forget that it exists. The oxygen prongs in her nose a constant reminder of the damage it had done to her lungs and her breathing. How does she do it? Is that what is hard?

Her next words, the gist of which was…..”I know the day will come when what you will say is not what I want to hear, that day when my tumor gets the better of me.” She followed by ” You need to blog. Your blogs help, they help me”. She is not the first to reach out to me to write.

What is touching is that she came with a gift to the scientific enterprise that comes up with answers and defines new attack schemas against this un-welcomed inhabitant. This gift, I explained to her, opens the doors to researchers that find ways to understand the alien lurking inside her for future cancer patients.

I held the envelope in my hand and I thanked her for her supporting cancer research: “every breath, every word and every gift goes a long way” I said. She told me that what I said helped. She wanted to share her message with her friends, explaining to them the power of what we can do as a collective group, to fight the rarity of what she has as we define the finest details of this complex disease.

Cancer has a different face now. It is constantly changing; evolving and so is our understanding of it. While this cancer is an intrinsic inhabitant of some of the people I have come to love and respect, never does my mind rest in searching for solutions to the issues that it keeps presenting. It cannot bend the spirit of the patient fighting, the family supporting and of the researchers who strive to impact the lives they so stringently try to save. “Stable”, while good, is far from where we want to be.

I am with you today my friend

Mo

 

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