iwantmorethanapinkribbon
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Being an ambassador

2/8/2016

2 Comments

 
Picture
I have been bald for four days now.  I had my head shaved on Friday because the hair was getting into everything and was becoming a nuisance.  My husband vacuumed the walls of the bathroom as that seems to be where the shedding happened the most.  I'm still picking hairs off my pillow.

I've been living with breast cancer for four years.  The average citizen doesn't know that as I "look so good!"  However, now that I have a bald head, the cat's out of the bag.  (Who put the cat in the bag to begin with?)

On Friday, I was stopped in a grocery store and asked about my turban (see in last week's photo).  On Sunday, I had the following conversation.

Here's the background.  Not only am I the mother of two teenagers, I am a caregiver to my aging in-laws who are in their mid-80s.  They live next door to us and my mother-in-law has increasing short term memory loss.  I've been attending workshops on this topic, as well as reading as much as I can about it in order to be as loving and as kind as I can for her in this stage of life.  

Because of the training I am receiving, I am sensitive to others who are in the same position.  There is an elderly man in my church who has short term memory loss as well, but further along on the scale.  He is the one who approached me on Sunday.  I was wearing the hat in the above photo.
 
"Tell me about your head!"

I was a bit taken aback ... no, "hello," or anything like that, just a rather abrupt command/demand.  But I looked at him and remembered his condition and smiled.

"What would you like to know about my head?"  (I wanted to clarify the information he was looking for.)

"Does your head mean you have cancer?"

"Yes, it does.  I do have cancer."

"Do you know Jane?"   (Not her real name)

"Yes, I do know Jane.  I've gone with her to many of her appointments."

"Jane has cancer, too!  My wife is Jane's husband's sister!"

"Yes, I know.  They are all good friends."

"Are you having chemotherapy?"

"Yes, I'm having chemotherapy."

"Jane is finished with chemotherapy.  We had a party for her when she was finished.  When will you be finished?  Maybe you can have a party, too."

"It's really great that Jane is finished with her chemotherapy.  I was at her party and I'm really happy for her.  However, I have a different kind of cancer than she does and I will never finsh chemotherapy.  I will be on it for the rest of my life." 

"Oh.  I didn't know that could happen."

"I know.  Cancer is different for different people."

And the conversation ended.  I didn't go further in talking about metastatic disease because of my audience.  To be frank, I will probably have this exact same conversation with him again next week ... and the week after ... and the week after.  That's the nature of memory loss ... you don't remember what you forget.

That's kind of how it is in Cancer Land as well.  People are conditioned in their responses to the disease and everyone acts as if we have control over it, when, truth be told, we have no control at all.

However, as an ambassador, it's my "job" to be patient and courteous as I press on throughout my days, fielding questions about why I have a bald head.  It's more of an opportunity than I realized and I'm running with it.

The general public has memory loss when it comes to metastatic disease.  It's only through constant repetition that the facts can break through and become a part of the conversation.
2 Comments
Kathi link
2/8/2016 04:00:40 pm

I hate that you are terminal, but I love this story and your patience. I often get weary of how we all seem to have to say the same things over and over again regarding the realities of breast cancer. Perceiving opportunities to be an ambassador is much more useful. All the best to you. Kathi

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iwantmorethanapinkribbon
2/18/2016 03:18:32 pm

Thanks, Kathi. My mother-in-law doesn't understand metastatic disease so I have lots of practice of saying the same things over and over and over again. I can't change or control her reactions to me (she laughs hysterically when she sees my bald head), but I can control my reactions to her reactions (and to others). It does not good to be angry, but if I embrace each moment as a teaching moment, then that's a victory for me.

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    _I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease.  I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.

      

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