12 Months

A year ago today, on 2/15/11, I asked Ron’s oncologist at University of Michigan how long she thought he had left to live.

She estimated that he had about six months, give or take.

I had asked this question while speaking to her privately, in an exam room adjacent to Ron’s.  I had to almost whisper my questions because I knew Ron did not want to have any kind of timeline for his prognosis.  All he wanted was to maintain hope that he would fight this thing for many years to come. 

The doctor remained serious and sincere, even when my questions had obvious answers.  For some reason, I just needed to ask them and have her tell me what I already knew.

He was so fatigued.  “Is that going to get worse?”  I asked.

Yes.  Much worse.  He will be laying down a lot.  He will be sleeping almost all the time.  His medicine may make him more tired, but it is mainly because of the cancer. 

He was barely eating anything and losing weight.  “How long can a person go on like this?”

It will probably be the thing that kills him.  He will waste away slowly.  He won’t want to eat anymore.

I am a person who likes to control as much of my environment and my life as I can.  I feel nervous when I do not know what is coming next.  A minor change in plans can throw me off, even though I try to pretend I am flexible and easy going.  Cancer is much more than a minor thing.  I was way beyond thrown off . . . I was completely blown over and buried. 

I wanted to know better what to expect, so I could mentally prepare myself, but once I knew, I felt this overwhelming sadness.  A huge heaviness, the burden of knowing something Ron didn’t know, settled over my heart and on my shoulders.  I was weighted down.  I could barely talk to Ron because he could not know, but I knew and I was worried I would let something slip.  I could not look at him without crying; this went on for several weeks.  The drive home that day last February was awful.  I could barely see the road, between evening snow and tears blurring my vision.

Ron knew that I knew.  I had asked before we went in if I could know and he said I could, as long as I didn’t tell him.  So, he was aware of why I was so upset.  He laughed.  He said, “You just tell me, when that day passes and I am still here, and I will laugh.”    

Beyond just keeping it from Ron, I could not tell his family.  He had asked that I wait and that I not share any specifics with them that could be upsetting.  He had not yet even talked to his family about his prognosis and that there would be no cure.  I had only just pieced that all together for myself from researching neuroendocrine tumors of the pancreas and liver on the internet.  Doctors had been using words like “malignant” and “metastasized” and “massive” and phrases like “multiple tumors in multiple organs” and “not something we can address with surgery” and “not responsive to traditional chemotherapy” and “all we can do is buy time.”  I guess this kind of speech should have indicated to me that he would not make it through this, but somehow I had been holding out hope that he would live a long time.  Naïve.  Ron had time to do all that internet research in December when he was first diagnosed, while I was working.  He already knew.  He just didn’t want me to know until I had to.

I had known it was serious.  I just hadn’t realized how serious.  And then I asked the oncologist directly because Ron hadn’t been doing so well.  I expected a shortened future for us.  I thought she may tell me 3-5 years and I expected I would cry at that.  I did not expect 6 months.  I was so shocked when she told me that I don’t think I even cried just then.  But once I left the hospital, I couldn’t stop.

I eventually told some of my friends and family.  I called meetings with some of the closest and talked on the phone to others.  Those who knew helped me shoulder the 6 month secret.  It took a small fraction of that weight off from me, to have someone else share the knowledge.

I grappled with what to do.  Should I take time off work?  If he only lived six months, I would want to spend as much of that with him as I possibly could.  I imagined us traveling around the country, visiting friends and beloved spots and sharing new adventures.  I imagined giving up on silly things like car payments and the mortgage and student loans.  But, my responsible side kicked in.  What if Ron was right?  What if he did live way longer than six months?  I would need to be able to take care of him and that means providing food, clothing, shelter, and an environment that is peaceful and clean and conducive to health.  So, I kept working, while closely monitoring Ron’s status.

After a few months, with his plucky attitude holding strong and him still participating in most of the same things he always had, albeit with a bit more fatigue and nausea, I set down my worry and realized the doctor was wrong.  He was not going to die in 6 months.

I began to make some little jokes to Ron when 8/15/11, the date that would mark 6 months since his oncologist gave me her prediction, grew close.  Finally, due to me dropping hints, he was like, “Just tell me.”  I asked a few times if he was sure and he said he was.  I was ready to get rid of the rest of the burden of the secret I had been carrying.  So, I told him when we would be celebrating the ‘Lived Past It’ mark.  “Are you serious?” he demanded, “That’s all she thought I could do?”  He seemed almost indignant.  And we did laugh about it, just like he predicted.  They all underestimate the strength of his will to live.  One of my coworkers made a cake for Ron, his 6 month cake, since I hadn’t had time to do anything special for him, but wanted to.  We celebrated.  We hugged.  We cried.  We decided no one can truly know his future. 

Ron is the most inspiring, silently strong-willed person I know.  He doesn’t get all loud about his convictions, but whatever he has decided, he holds fast to it and no one can budge him.  He refuses to succumb to the cancer eating his body.  He just is not ready to die.  It is as simple as that.

A year later, I suspect we are closer to where his oncologist was telling me he would be.  He is tired.  In the hospital bed all day.  On heavy pain meds.  Not eating.  It is so much worse than it was when I was wondering, a year ago, whether it could get any worse.  But, I have had a year to adjust and so has Ron.  Neither of us like what is happening to him, but, for the most part, we can accept it . . . as unfair as it is.

Ron’s perseverance makes it hard for me to know how long he has.  And of course I cannot know.  No one can.  It is something that is out of my control, and, to be honest, that scares the hell out of me.  I want him to live as long as he possibly can and I want to hold out hope that it will be a long time. 

But I also have to do what my heart and gut tell me, when I see him fading more and more.  And when I talk to his hospice providers and they feel time with him is quite limited and therefore very precious, I have to listen.  I finally am taking the time off from work to better care for Ron and for me and to enjoy every last little moment we have together.  I have been thinking about doing this for the past 12 months and now I am.  It feels right, even if it is frightening not to know what the future holds.

Ron still has many things he wants to do in his future.  The Hunger Games movie comes to theatres next month.  He will turn 30 years old in 6 weeks.  The Avengers movie comes out in May.  His sister will get married in July.  And there’s always the Wheatland Music Festival in September. 

Ron may just prove everyone wrong and still be here a year from today.  If that happens, I will be writing another blog post, just like this one, wondering how I ever could have questioned his intention to just keep living.  But, right now, in the present moment, I have to go with what I see and feel and what I am told by professionals.  And that means being with Ron to the very fullest, knowing every second with him is precious.  I know I am lucky for each day we have.  I am also lucky to have Ron, a guy who defies the medical odds, fights with all his might to go on living and laughing and loving, and manages pain and a terminal diagnosis and medical procedures with a smile and a joke.  Ron handles it all with grace, dignity, humor, and love.  I am just lucky to have met Ron and to have had him pick me to share the rest of his life with, no matter how long or how short.

Ron Clark, I drink you up - if you were the Baltic Sea and I were a cup.