Cancer as a Chronic Illness

Cancer survivor.

Death from cancer.

I used to think that a cancer diagnosis meant one of those two outcomes.

I thought a cancer diagnosis led to binary results.

I'm realizing that there is a whole lot of middle ground; once again, life presents "shades of grey."

I consider myself to be someone who looks at the grey areas of life - that seldom are issues ones with black and white answers.  I knew people who lived with cancer for a long period of time, but until it happened to my son, I admit I had not fully embraced the reality that a cancer diagnosis can mean a long, drawn out treatment plan or living with uncertainty.

Once again, life is here to teach me a lesson that I didn't particularly want to learn, but needed to learn nonetheless.

When Alex's cancer was diagnosed, my mind was racing and I wanted to know what needed to be done to "fix" this.  I had enough friends in my life who had cancer, had undergone surgery, and went into remission.  I don't mean to belittle their experience or the difficulty of it, but I perceived that this could be a finite period of time with a positive outcome.

I feel like I was painfully naive, and I admit I'm embarrassed that I did not fully realize what so many others already knew.  A cancer diagnosis can lead to a long, protracted, uncertain future.  Months and years of treatment.  Years of living scan to scan, wondering what every ache and pain might actually mean.

Today Alex is almost a year into treatment.

Primary treatment was not successful; we're in the midst of more aggressive treatment, and there is more follow up treatment to come.  He probably has a year of treatment ahead, and that's if things go well.

I have to adjust to the bigger picture.

I have to learn, we have to learn as a family and as a support to Alex, how to "live" with cancer.

Alex's cancer is not going to be wrapped up in a neat bow.  It is going to be the sword of Damocles hanging over our head.

We have to live.

Don't get me wrong, I am desperately hoping for a cure.  And it is still possible, but statistically it is not a sure thing.

But Alex is not a statistic, and neither is our family.

If he survives Hodgkin's, he may eventually die from secondary cancers or illnesses caused by the treatment.

Right now, life is on hold because of the intensive treatment Alex is getting.  In a few more weeks, though, we'll go home.  We have to remember to live, and not simply wait for "when this is over." We can't miss out on today.

When Alex was diagnosed with autism as a toddler, I knew we didn't want autism to define him or our family.

Now the same if true of cancer.  Clearly, cancer is going to have a role in our lives for longer than we anticipated.  There are practical aspects to deal with.  But somehow we have to find a way to not let it dominate everything.  In between treatments, we need to focus on other things.  There were a few months in the middle of this year that I think we did a good job with this.  We had Jessica's wedding to focus on.  I think we lived in the moment, but I still had this underlying idea of "when this is over."

Today I have to live with what I know.  Alex is recovering beautifully from his stem cell transplant. We've had 18 days in the hospital to strengthen our family bond and to support him on his path to getting well.  We'll have more freedom in our temporary apartment, and in a few weeks we'll be home.  I look forward to going back to work.  Alex will return to his group home, his roommates, caregivers, and part time job.

Apparently, cancer will continue to be a part of the equation for 2016.  A cure would be the best gift of 2016, but no matter what, we're all here today and that makes it a good day.