Recently I met with some parents to obtain background information as part of my assessment of their son. They are highly educated people, both with advanced degrees. They have three young sons, all of whom they speak of lovingly. The father charmed me with the fact that he calls his sons, “honey”. There words were measured and they described their concerns about their oldest son, his tendency at time to not to own his own actions, his quickness to anger, and his frequent use of exemplary verbal ability to argue with adults.

Despite their calm and professional demeanor, I could see the mounting fear behind their words. Their fear for their son’s happiness and safety in the world. We had had a chance to establish some rapport and I decided to take a chance on expressing an awareness of an issue that had yet been unsaid. “I can only imagine the stress that you feel in raising a Black son who has these difficulties, in our country.”

Both parents nodded vigorously and the father said with palpable relief, “Finally, someone gets it.”

I am not African American. It was chancy for me as an outsider to make the comment that I did. It was also chancy for me to use the term “Black” instead of African American. The former is more likely to be acceptable when used by African Americans, not by an outsider and further a member of a privileged race, such as myself. But I thought “Black” was a better reflection of their own thoughts and feelings about their son. I also know that due to my personality, I tend to be able to say things like this and they are interpreted in the way I intended. But I am still very careful. I will never know what it is like to be African American.

But I can try to understand the best I can and to be aware of the common challenges that African American families face. And my awareness must be more than an internal event. It needs to be linked to effective action. In this example, my action was communicating my awareness of the rational sources of their fears. These parents have three boys. The number one cause of death for African American males between the ages of 15 and 34 is murder. And one might think that the risk does not apply to these boys because they live in an educated and relatively affluent family. I think realistically, it may buffer this risk to a certain extent. However, even looking at my own life, I know there is a particular danger that cannot be eliminated. I have a lot of friends. A great number of them have advanced degrees. Two of my friends, both Ph.D.’s, have had murder in their immediate families, one attempted and the second resulted in the death by shooting of a friend’s brother, who was waiting in line to get into a night club. Both of these friends are African American women from well educated families. One of them even had an uncle who ran for president of another country.

There are many people who live with the cloud of potential catastrophe. We are often unable to fully appreciate it but we can do our best to understand.

I am awaiting the results of the routine MRI I had yesterday. I am learning to deal with the anxiety of these scans but I am anxious. My husband forgot about the MRI even though I’d told him a couple of times as recently as the day prior and had asked him to accompany me. His alarm went off yesterday morning at 6:30, his normal time to get ready for work. However, he was planning to go to work after my scan and it was not until 9:45. He was getting up too early to have remembered the scan so I reminded him and he came back to bed. My husband is more forgetful than I would like. But I understand that he is not doing it on purpose and further, he would have seen the appointment on his calendar. Plus, he doesn’t live in the perpetual state of Potential Cancer so there are some things he doesn’t quite understand about my experience as a cancer patient. Similarly, a close friend apologized to me yesterday for checking in with me about my MRI. He’d had quite a stressful day of his own and again, he doesn’t live in the state of Potential Cancer. Before I lived there, I didn’t really worry so much about my friends’ scans once they’d had no evidence for disease for a couple of years. The panic subsides. I don’t want my husband or my friends to live in the Potential Cancer state with me. I don’t wish that on anyone just as my friends with metastatic disease wish it for others. But the actions that come from understanding our situation are important.

As a world, we need to find a cure for breast cancers. But as individuals, we also need people in our lives who have an awareness of the unique stresses of being a breast cancer patient who are also able to convert their awareness into emotional support. You,  friends and family, may be helpless to prevent recurrence or to cure a loved one’s active disease, but you can provide emotional support. You can make living in the Potential Cancer state or the state of Perpetual Cancer more bearable and less lonely.

Perhaps it would be helpful to explain to you what scans mean to me. A clear scan means that I can live another six months with “no evidence of disease”. A clear scan to a person with metastatic cancer means that they can live with “no evidence of progression”.  If my scan shows evidence of cancer, I will go into the fast paced chaos of not knowing and having many tests, the perpetual “hurry up and wait”. If it turns out that I’ve had a recurrence, I will likely undergo a more aggressive treatment protocol than I did in the past and to undergo previous treatments for which I now appreciate the full impact having gone through them before. By the way, a lot of cancer treatment sucked. My family will suffer. My patients will suffer. I could go on and on.

I keep telling myself that the results of a scan, assuming accuracy, don’t tell me anything about myself that wasn’t true yesterday. I often tell my patients this about the diagnoses I give them. “You are the same person you were yesterday.” On myself, this is a hard sell. I am a clinical psychologist. Nobody comes to me unless they already know something is wrong. Something is not going well. There is a problem. I didn’t know I had cancer. I felt fine. There was no lump. Right now, due to my mental and physical health practices, I feel healthier than I have in years. But cancer can hide for  a long long time without someone even knowing something is wrong.

For me as a cancer survivor, it is surreal at times to realize that I can’t trust my own sense of my body. I can’t gauge my own health. My body can lie to me.  I try to be a very truthful person with myself and with others. Honesty and clarity are extremely important to me. This is hard.

Offer your loved ones your understanding and support. You don’t need to live with us and we don’t even want you to,  but do connect with us. And when the Pink wave  tells you that awareness is action and pink is helpful, put your money and volunteer time somewhere else. Somewhere that helps.

Gray and black clouds
hide the sky.
The light shines through
There is clarity above.

The clouds will burn off
maybe today
maybe tomorrow
some day, certainly.

I will see the sky
I’ll know if I traveled
during the quiet space
between dreams
to the terrifying place
the familiar chaos,
the Cancer Place.

This morning’s sky inspired the poem, my first in nearly 20 years so be kind.