Living With Metastatic Disease

Julie Mason, an online friend of mine who is also a writer, an adoptive grandma, a communications consultant, and a person living (for almost 3 years now) with ovarian cancer, wrote this.  

When you live with metastatic cancer, as Jeanne and I do, you see the world through different binoculars. We know, as Elizabeth Edwards once said, “what we’ll die of, but we don’t know when.”  So the view is often disheartening, and the distances ahead are discouragingly foreshortened.  But our binoculars also give us a different view of success than those who aren’t faced with our challenges.

That’s why I did a jig for joy when Jeanne got the results of her latest “scan dance” that showed small growth of a lung tumour and lymph node.  I suspect most folks read this and thought “Not good - her disease is progressing.”  I read it and saw “ Great news – no new sites.”

Managing metastatic disease is like fighting a forest fire:  You beat it back one site at a time, often lighting chemo or radiation “fires” that challenge the body but frustrate the progression of the disease.  New sites mean the disease has jumped over the fire line.  That’s why stability in the number of sites is so important. 

New sites can also mean new treatment.  The same day I learned the pelvic recurrence of my ovarian cancer had responded to radiation, I also learned that I had mets to my lung.  When treatment stabilized the lung mets, I found I had mets to my liver.  When a clinical trial halted the liver mets, it also unexpectedly reduced the lung mets.  And to date, no new sites.

So while Jeanne has had some tiny progression in existing sites, the happy news is that her cancer hasn’t jumped another fire line. 

Science has made it possible for us to have good lives while living with metastatic cancer.  What we hope most for is stable disease, partial response, and no new sites.  We adapt to living with the limitations of ongoing treatment and underlying malaise.  We change our definitions of what a good day is, so we can  honestly answer “fine” when people ask us how we’re feeling.  And we can joyfully celebrate the successes that other people might see as failures. 

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Comments

[Joanna Moore]

I think I will read this repeatedly so I can really grasp it all. I have dealt with everything through putting it out of my mind, but when that is unsuccessful, it is important to have some wisdom to live by. You help me from afar since I know no one else with metastatic cancer.

[Joseph Albano]

Well done. My companion of 9 years was diagnosed with Stage IIIA ovarian cancer in August 2005. She is currently under treatment for her recurrence of two years ago. What clinical trial did you participate for the metastasis to your liver? Thank you and keep the faith. Try to remember that sometimes the best thing about the future is that it only comes one day at a time. Joe

[beyondtheglassdoor.blogspot.com]

Very well put!

[Nat]

Thanks for sharing Julies words. They ring so true, and remind me that "mostly stable" is a really really good thing.

[MaryM]

A very nice description.

Science makes it possible to continue living good lives with cancer, it doesn't hurt to get our heads oriented so we can appreciate them.