Leap Day Update

On a day that happens only once every 4 years, I don’t have any thrilling news.  Just an update about Ron, for those who have been wondering.

The days pass, often blending into one another.  Today was like any other.  Ron spends most of his time sleeping when we don’t have appointments or visitors.  He is in his hospital bed almost full time, barring short trips to the front porch to smoke a cigarette and trips to the bathroom.  He sometimes tries to sit on the couch to visit with me or guests, but this often wears him out.  He got a new mattress last week that circulates air into different baffles to stimulate circulation, change pressure points, and prevent bedsores.  He says it is helping to alleviate pressure on his tailbone.

I can’t remember if I said this before, but Ron’s hospital bed is in the living room, where he can visit with company and fall asleep watching movies with me.  The bed is in front of an east facing window.  Out the window, there is nothing but yard, trees, road, and a big open field with rolling hills off in the distance for him to look at.  He can see what is happening outside, like the sap man coming twice a day to empty buckets from our tapped maple tree into his giant vat of liquid, which he will process into maple syrup.  A few days ago, two young deer were in the front yard and crossed the road to meander in the field.  Basically, Ron has a very nice view.  He gets to see the sun rise each morning.  He says he really likes his view and I am so glad for this one gift I could give him – the gift of a serene and peaceful setting for his time in bed.

Last week, Ron also got a commode thing that fits over the toilet so that it is easier for him to get on and off when he needs to go.  He says this makes it much easier.  I find it a strange nuisance in that my feet no longer reach the floor, but I am grateful for anything that makes Ron’s life easier.  He also got a walker – the kind with the seat so that he can sit and rest when he feels tired while moving about the house.  The walker seat lifts up to expose a hiding spot where I caught him trying to stash dirty clothes last weekend.  We now refer to the walker as “the hamper.” 

Ron’s pain is much more managed with the long acting morphine, often supplemented by a dose or two of liquid morphine at night.  No longer does he have pain in his liver or kidneys.  But, he does still have the “burning belly” pain after he eats.  He explains that this pain is actually in his intestines rather than his stomach.  It is sometimes so bad that he cannot sleep at night, which makes him all the more drowsy during the day.  He has been trying various over the counter stuff to try to address it with limited variations of relief.  His hospice nurse is looking into whether there may be other options to address this.  Since Ron already doesn’t have an appetite, sometimes has nausea, and has burning belly every time he eats anything, he barely eats anymore.  This is causing him to continue to drop weight and experience weakness and fatigue.  On Monday, while at the hospital to get his abdomen drained, he weighed 129 pounds.  He says he hasn’t weighed this little since 7^th grade.  He likely would not weigh this much, were it not for the size of tumors and the amount of fluid his body is retaining.  He has lost over 100 pounds since I met him.  His face is hollowed out, skeletal features prominent.  His body is much the same as his face, except with a round belly from the size of his liver and tumors.

I cannot tell you how difficult it is to watch Ron go through this cancer, just eating away at his body.  I truly do not have the words.  I find myself keeping busy with mundane housework and stressing about stupid little things that I may or may not have control over . . . just because it is something to distract myself from watching him every second.  I check to make sure he is breathing.  I watch for his pulse in his neck.  I worry.  I try to hug him as gently as I can, since he is all bones and sometimes it hurts him to be held.  I weep for him . . . and for me.

I wish I could tell you happier things, but this is just where we are at now.  So, I caution you to read these posts going forward knowing that they will likely get progressively sadder, barring some joyful reminiscing (I do plan to continue telling the story of the humble beginnings of our relationship three years ago) and the few moments of happiness we still find time for. 

Ron did have a good visit with his brother, Doug, and Doug’s girlfriend, Kathy, last Friday.  But he was so worn out that he had to call off his Sunday visitors.  Then, he felt too pent up in the house Sunday, so that night he wanted to go to Meijer to ride around on the motorized cart and do some quick shopping.  This helped him to feel like he was out in the world, but also hurt him and caused him to be tired.  Finding balance continues to be challenging.  He also called off his visitors today due to severe gastrointestinal issues that kept him up all night and have continued to plague him throughout the day. 

Evidence that Ron really is feeling below par: he decided that he cannot go to a Red Wings game this coming Sunday.  A friend bought tickets awhile ago and Ron has been certain he would go, no matter what.  But, he has decided it is just too much for his body to take. 

We are going to try to make it home to Alma this weekend, so he can see his grandparents and father and nephew, all of whom would have a harder time making it down here for a visit.  We are crossing our fingers that he feels up for the journey and that, if we do go, it does not wear him out too badly.

Ron does continue to have an amazing spirit.  When he is awake, I just want to be with him and talk to him.  I try to just stop whatever I am doing and hang with him while he is alert.  This does mean that I am less available to answer the phone or commit to meeting up with folks, but I kind of don’t care.  I just want to be with him and soak up every available second we have.  Everyone who is not Ron will have to understand about being on the back burner.  I suspect most people do get it and wouldn’t want to take time away from us – so thanks to the many of you who do understand the situation and allow us space and time for each other. 

Also thanks to those who have been sending cards and stories and memories to Ron.  He has fun reading them (sometimes I read the longer ones to him, which is fun for both of us) and we tape the cards, stories, pictures, etc to a mirror in front of his bed, so he can see them all.  Keep them coming.  Thanks to the people who have sent us care packages.  And another thanks to the people who have been writing to me and sending me cards and little surprise packages in the mail.  I continue to be humbled by the fact that is sometimes people I do not know well or kindred spirits I haven’t heard from in years.  Somehow this experience has inspired people to reach out and send me (and Ron) the most incredible treasures.  I usually weep every time I open something, but it comes from a good place . . . a place where my heart is touched and I feel cared about.  Know that even though I may not be able to write back or respond or reciprocate or even say a proper ‘thank you,’ I am honored by your support and presence. 

There is so much heavy stuff for me and Ron to talk about.  We have made arrangements for his body to be donated through Anatomy Gifts Registry (www.anatomygifts.org), which is this super useful organization that pays for transportation and cremation costs and arranges for the organs to be donated to pertinent research (they are trying to find a VHL specific study for Ron).  We are working on his statutory will.  We are talking about music he would like for his memorial service.  It is all heavy, depressing shit – especially when we are young people who have not yet had the opportunity to share many happy years together.  It just does not seem fair to me.  Yet it is happening.  I try to practice radical acceptance, but often I am just really pissed off and distraught.

Sometimes . . . okay, most of the time . . . we just watch movies so that we don’t have to think about such hard things.  Sometimes, I crawl up onto the foot of his bed and read to him.  Sometimes, I stroke his leg or his arm or his hair until he falls asleep.  Sometimes, we talk about silly things or tell each other stories about our lives . . . even favorite moments we have had together.  Often, I cry.  Sometimes, he cries.  Always, his attitude astounds me and continues to be one of hope, humor, optimism, and gratitude.  His physical body may be failing him, but his heart and mind are still present in full force.  He is the kindest, gentlest, most loving soul I have ever known.  I cannot imagine what my life will be like without him, but I remain so appreciative of the example he sets for me.  I am glad to know and love Ron Clark.