Go Forth and Live

It’s not for the faint of heart, this business of caring for someone, loving someone, while they are struggling with a terminal illness.  You have to fight and advocate for them with anyone who does not seem to have their best interest in mind.  You have to watch them be in pain; physically, emotionally, cognitively, socially, and spiritually.  You have to watch them go through stages of grief, while at the same time you are going through your own . . . and sometimes your stages do not match up.  You have to take care of them and keep them comfortable and attend to their needs, because they depend on you.  You have to balance optimism and hope with realism and practical logistics.  You have to have honest, frank, and at times uncomfortable conversations about what to do, and when.  You have to accept that you cannot do it all and you need help and sometimes have to ask for it.  You have to stay strong when sometimes people don’t/won’t/can’t help or when they don’t/won’t/can’t understand what is happening to you and your loved one.  You have to be in this position of providing care for them in an almost paternalistic way while still trying to maintain the egalitarian relationship you once had and want to still have.

I never imagined going through this scenario in my thirties.  I expected to love and grow old with someone.  When I met Ron, I knew that person would be him, without any doubt.  He is my match.  I could see us living out a whole life together and being by one another’s side until we were both old and feeble and done with living and ready to just rest.  I anticipated one of us would go first.  Selfishly, I hoped it would be me, because I didn’t want to have to live without Ron.  But, when I envisioned one of us going first and the other standing steady alongside during the dying process, I envisioned us gray and wrinkled from many years together . . . in our eighties, at least.  I did not envision it this way, with Ron carrying the death sentence, not yet even thirty, frail as a concentration camp victim, doubled over and writhing in pain.  There was no way to know how heart wrenching this would be.  And yet, even if I knew at the onset how the sadness would fill my heart and creep its way into my belly and my throat until I just don’t want eat and all I can do is cry . . . even with that foresight, I would still have wanted to be with Ron.  He is the most kind, genuine, generous, good-spirited soul I know.  He brought light and laughter into my life.  He has made me a better person and I am privileged to be by his side during this grim process.  Even if I knew what dark times lay ahead, if I had it to do over again, I would still choose him and this stupid-ass outcome.  He is worth it.  And it still isn’t fair and I wish it were not happening to us.

I wish I could say that we are living it up during this week that I get to be home with him, but that is not the case.  He is in so much pain, even now, as I write this.  He wakes up crying, tears fresh on his perfect eyelashes.  He can only sleep a few hours straight without having to take another pain pill.  He cannot move from the couch and has not wanted to sleep in a bed for over a week now.  He does not want to eat, sometimes because of nausea, but other times just because he is so damn hurt.  His legs are weak and shaky.  He needs help to sit-up.  He has no energy to do anything.  His belly is full and even though they poked him in multiple places yesterday, they only got 900mL of fluid out because it has become loculated into separate, walled-off areas.  His abdomen cramps-up for hours after being poked.  He’s been throwing up every morning for the past several days.  His kidneys constantly ache and he has to keep a heating pad on them – he pretty much has had that thing running 24 hours a day (which I worry could somehow be bad, but it gives him comfort, so . . .).  His liver burns with a blazing, radiating pain that doubles him over and then sends him lurching back.  Everything on him hurts.  He is in and out of sleep, all day, everyday, but he never feels rested. 

I called the cancer center today, at the prompting of our visiting wound nurse.  His new oncologist agreed that we can increase his pain patch tonight.  Hopefully, this will help him not be so hurt anymore.  Hopefully, it will allow him to function closer to normal.  It is bad enough to have days that are numbered, let alone to have to experience them in excruciating pain. 

Ron puts on such a good face that I don’t think anyone would ever know how bad he is hurt.  When we have company or he talks to someone on the phone, I hear him saying how it isn’t that bad.  I know he doesn’t like to bring folks down, but the reality is that it is that bad.  Even when we talk to medical staff, somehow he always manages to rate his pain at a 3 or 4 (on a 1-10 pain scale) when we are with them, instead of the 8 that it generally has been running lately.  I find myself talking after him, telling medical people how he minimizes the pain.  And then I hate myself for minimizing his subjective experience that he just shared with them.  And then I tell myself that I have to tell them how bad it is, otherwise, they will wonder when I call them up, like I did today and have done many other times, requesting more pain medications.  People need to know what is going on for Ron in order to take care of him. 

The visit with the new oncologist went well on Monday.  He seems very informed about Ron’s issues, knows many of the doctors Ron has seen at U of M, and has ideas and creativity about what to do next.  And, his nurse calls me back and follows through with what she says she will.  Yay!  And his wound is healing really well, far better than anyone expected.  So, these are all good things.  I am so glad to be home with him this week, because he really needs me.  And he has had appointments with some medical professional or another everyday since last Friday.  I am not sure what things will be like when I go back to work next week, but am hoping we will have hospice by then (or soon after), so that he has more in-home support.  Otherwise, I don’t know how I can leave him like this.  We are still waiting for the injections from Novartis to arrive and won’t go back into hospice until they do, since that didn’t go so well last time.  They are supposed to be here by tomorrow at the latest, but Ron’s next injection is 1/31/12, so we will probably wait until after that, at this point, for him to go back to hospice. 

Sometimes, I am filled with regret, wishing we had done more while Ron was still able.  We didn’t see this coming.  We had no idea how valuable our time was.  We didn’t seize the day often enough because I was so locked into being a responsible employee, paying bills, taking care of my dogs and the old farmhouse, and making other people happy before myself.  I wish I had taken more days off to just be with Ron, like, even before we knew he was ill . . . especially before we knew he was ill.  I wish we had gone on more trips.  I wish I could have shown him my favorite places in southern Utah and Colorado.  I wish I could have taken him backpack camping, anywhere.  And still, I am glad for the things we did do and the memories we do have.  I am glad for our trip to Portland and our vacations to Frankfort and our U.P. adventure last summer.  I am glad for our weekends together when we were long-distance dating, because we were always so crazy about each other and happy to see one another.  I am glad he has met some of my closest friends and I have met some of his.  I am glad for our time living in the same place and making a nice, quiet, homey little life together.  And especially I am glad for Wheatland Festival . . . all three of them that Ron has been to (so far – here’s hoping for another one this September!).  Watching Ron evolve and get more and more comfortable at Wheatland has really shown me the most shining parts of his soul.  I will always smile when I think about him saying to hell with the wheelchair and going off with his walking stick in the company of the boys last year, bound for a night of Cajun dancing and the Lost World.  This memory gives me joy in my heart and tears in my eyes.  Many thanks to Ben and Gabe for embarking with Ron on that experience. 

I don’t say these things as if he is gone.  He is not.  He is still alive and we will continue to live each day that we have together to the fullest that he can.  We still make memories.  But, as he becomes less and less able to go out and do things, it just reminds me of how precious every moment is.  I say these things as a charge, to each and every person reading, to go out and live each day to the very most of your being.  Do what makes you happy.  Be with who you love.  Stop living each day like it is a grind, a means to an end, or a way to pay bills.  Make memories.  Kiss and hug your partners, family, friends, and pets.  Make a joyful noise.  Take a photo.  Paint a picture.  Write about the cherished experiences.  Take chances.  Go places.  Be outside.  Play more.  Be silly.  Make jokes.  Listen to great music.  Take naps.  Eat delicious foods.  Be kind.  Be assertive, but fair and considerate of others.  Don’t say things you don’t mean.  Say what you feel.  Own your experience.  Apologize when you know you are wrong.  Tell the people you love how much they mean to you, every time you have a chance.  Exercise random acts of spontaneity and creativity.  Snuggle more.  Sleep in sometimes.  Be gentler with yourself and with others.  Get out of your head and into you life.  Become the person you know you are.  Open your mind.  Open your heart.  Don’t allow room for regrets . . . only allow room for a full and happy life.  I am not trying to be clichéd or trite.  I am saying what I see tonight as the purpose of all of this.  It will be over someday, for all of us.  And you never know when that day might be.  I know we all have heard this before, but I live with it in front of my face every day and night and that is why I am urging you:  Go forth and be happy!  Now!

Ron, the fearless Wheatland warrior - one of my fondest memories of him