Cancer Journal #107

 Jan Carroll spoke to me with some asperity* regarding the fact that I have not done a blog entry in a while.  And I have an appropriate piece of writing to include.  But first, my PSA number remains too low to be detectable.  I go in again later this month to have the number again but am expecting the same monotonously good news.

I joined a cancer support group a while back that meets twice a month.  It is for Stage IV cancer survivors who have outlived the time we were told we have yet to live at the time of the metastatic diagnosis.  We call the group the "Long Haulers" which I find to be an appealing name.  Anyway, I wrote a piece about us for the local arts and entertainment newspaper that I have not heard back on.  The editor that I deal with doesn't read his emails.  I get his attention by submitting a handwritten note asking him to go back on such and such a date to have a look.  There is no rush on this one since the group does not meet during the summer and the writing is in the nature of a recruitment tool.  I have asked that if they publish it, they wait until September.  Here it is:

Long Haulers

Stage four cancer survivors, five or six of us, meet twice a month at the downtown YMCA.  Stage four cancer patients have had their cancer metastasize or spread to other parts of the body beyond the original tumor and is therefore, essentially, a death sentence.  We were all initially given years (or months) of life expectancy by our oncologists.  Each of us has outlived at least the minimum time allotted to us. Hence our name: the long haulers.  I am the shortest of the long haulers, having first been diagnosed in November, 2020 with an aggressive form of metastatic prostate cancer.  I was told then that I had three to seven years of life ahead of me.   Others have battled this thing for upwards of ten years.  Beating it and then suffering recurrence.  Cancer is a resurrecting disease.  

We hear each other's stories, tell of what doctors, what facilities are good and maybe not so good. We all rejoice when a pet scan comes back clear of active cancer.  All victories are provisional for us but victories beat defeats. We hear of heroic spouses, sometimes the key as to why we have survived so long. The tough time our kids have had.  The theme: they grow up fast when a parent has a cancer diagnosis.  It is common to establish child related survival goals–seeing the high school graduation of our youngest child, holding our first grandchild.  We talk about it all.

We speak of the awkwardness of talking about our condition with those who are well.  We hear a lot of happy talk about how good we look etc. which can feel like an effort to reduce the discomfort of talking about what will be terminal illness unless something else gets us first.  The effect can be to diminish what we are going through which is no comfort at all.  But then, what are they supposed to do?  Mounds of pity won’t do.  Maybe listen, except that outsiders can be clueless about what we would say.  There is no good solution.

Ours is a high risk community.  Plenty of the stories are of those who have died;  the hard ones in their thirties, leaving behind a young family.   Who knows why some haul long.  A good match between treatment strategies and individual body chemistry certainly.  Beyond that, I think I detect whatever is the opposite of a defeatist attitude.  But then, we have been successful, making it much easier to fend off defeatism.  There is a general attitude of happiness in the room, a lot of laughter, odd from a group wrestling with a high mortality condition.  We can make mordant jokes not permitted to those without a cancer diagnosis.  It is a privilege we cancer patients share. 

Someone offers a YouTube video of Nightbirde singing “It’s OK.”  A beautiful gal who died of stage four breast cancer in her early 30s but not before receiving a Golden Buzzer on “America’s Got Talent” and a Simon Cowell crush for singing this song.  It breaks your heart.  The repeated refrain, “It’s Ok, it’s Ok, it’s Ok.”  “It’s alright, it’s alright, it’s alright.”  Sung despite a diagnosis gone South.  The message about what is ultimately true or at least the face that she wants to put on about what is true–probably both those things at the same time.  Like I say, it breaks your heart.  It is a stage four cancer anthem.

I would not wish cancer on anyone.  However, there are things I really like about my condition.  I like being in the club, having my cancer card.  The only entrance requirement, what the doctor found that has gone haywire in my body.  I must resist self-pity, say “No” to using it as an excuse to go easy on myself.  But it is a ready made existential struggle, a life or death battle that so far I have been winning.  I like that.  And I like sharing that battle with others in the club. Come join us if you qualify and would like to talk about it.  We would be happy to have you.

Long haulers; long may we haul!

* I recently turned 75, I intend to use the curious phrase "with some asperity" as frequently as I can during my last quarter of a century. My AI site, Perplexity, tells me that Jane Austin used it twice in Pride and Prejudice.