Sometimes there just aren’t enough napkins

Initially it’s hard seeing people who are further along in the disease process than you. Seeing them in the waiting room in motorized wheelchairs, listening to them trying to talk. On an intellectual level you know that will be you one day but on an emotional level there’s still a disconnect. At our first MDA clinic visit a year or so ago our neurologist talked to us about a PEG, or Percutaneous Endoscopic Gastrostomy (feeding tube to you and me). He was just giving us an overview of treatment options for the future. Talking about how the PEG would boost energy and improve quality of life when I was too tired to eat. In retrospect I think it was the term “quality of life” that disturbed me more than the idea of the PEG itself.  Being a health care professional it is a term I associate with end of life. When you have exhausted treatment options you focus on maintaining “quality of life.” At the time my biggest concern was the ever increasing amount of tongue chewing that went into trying to button my shirt. I had not come prepared to address anything to do with “quality of life.” I shut out the remainder of the conversation.

September 4th, 1987. Chiang Saen, Thailand. When I look back at our travel journals so much of what we wrote about involved food. We travelled for almost three years but if you asked us what was the most magical night of that time I think we would both give the same answer. The Golden Triangle was one of those places we went to just to say we’d been. I don’t know what we expected. Certainly not an archway by the side of the road proclaiming “Welcome To The Golden Triangle.” Never-the-less that’s exactly what we did find. With the exception of sharing a small bottle of locally brewed whisky there was nothing we did that night we haven’t done a thousand times before or since but sometimes place and circumstances colide to create a magical moment in time. For supper we found a small resturant with a deck that overlooked the confluence of the Ruak and the Mekong Rivers, the geographical point that designates the center of the Golden Triangle. Maybe it was the taste of the pork hot pot we ordered, maybe it was the view of the mist rising from the jungle across the river in Laos, maybe it was the shooting stars in the sky above the Mekong that night, maybe it was the buzz from the whisky. But man, that was a moment for the ages.sc002ae193The sort of dates we go on these days aren’t anywhere near as romantic as that one. Visits at the various clinics are pretty much the main source of outings for Rae and me these days. We just had a  follow-up visit with the orthopedic doctor. The X-ray of my arm showed that it has healed completely but mineral density is way down due to lack of use. Which unfortunately makes it much more prone to re-breaking. I’m essentially becoming like a china doll. The irony of this is that as you become less and less able to do anything silly and hurt yourself, you become more and more fragile.

Then there was the idea that the neurologist had brought up of being too tired to eat. Clearly he had no idea who he was talking to. We are foodies of the highest order. The kitchen is the smallest room in the house but the most used. If it wasn’t for the fact that I rode my bike 2-300 miles a week I would have (and had) been 50lb heavier. The only reason I addressed the PEG at all was because it amused me that auto-correct kept changing it to RPG (it’s the little things). I had held out as long as possible on getting the RPG. It wasn’t that I didn’t think I needed it. The writing had been on the wall a long time. I could eat continuously for two hours but between the speed I am able to eat and periodic choking breaks, I’d still not get enough down to sustain a sparrow. Success of a meal could be gauged by how big the pile of napkins next to me on the table was when I was done. My weight was down to 127lb. No, it wasn’t that I didn’t need the RPG. It was just that it was one more step. One more step in the wrong direction. One more step towards where everyone else in the waiting room was. One more time the neurologist was right and I was wrong.2015 April 5 Ray and Rae Spooner-3We have three kids and each one is coping with this very differently. We all deal with things within the realm of our own capacity and from my perspective there is no right or wrong way. But from the perspective of others, people need to do what’s necessary to minimize the potential for regrets. I have often pondered which is harder, being the one going through this or watching a loved one go through it. Because of my dads party-like-there’s-no-tomorrow lifestyle it was apparent to me early on in life that he was going to have a long period of infirmity leading to his death. As he started to go downhill it wasn’t exactly a surprise. Had he taken care of himself and lived the sort of life I have, watching him falter would have scared the fucking shit out of me.IMG_0685There was a week between the pre-op consult with the gastroenterologist and the time surgery was scheduled. I had seven days to back out. I wanted to desperately. But what was I hiding from? It wasn’t as if it were major surgery. Although I tried to tell myself surgery on anyone with diminished respiratory capacity was risky. However, the doctor dismissed my concerns saying my pulmonary function was still better than your average 80 year old. I think this was genuinely supposed to allay my fears. Denied of all excuses I begrudgingly acquiesced to the surgery. It was same-day surgery and on the discharge papers it said that I could resume normal activity the day after surgery. Which to me meant going for a ride. I didn’t think this would be an issue since the only other surgery I’d ever had was a vasectomy and I’d ridden my bike home from the clinic after that. However, the surgery for the RPG placement was a little more substantial. And riding turned out to be a bad idea. In fact doing anything that involves your abs (like getting in and out of bed, getting on and off a trike and most everything in between) is a bad idea. I thoroughly enjoyed riding around with Josh and Luci but paid for it the next day.IMG_0357

When Rae first spoke with the nutritionist she was told about nutritional supplies she would need for the RPG. But Rae was adamant that only food she had prepared was going down my tube. Whenever I hear the blender going in the kitchen I know the food alchemist is hard at work. Then Rae will walk in the room with a blender bottle full of liquid and a grin on her face. Rae won’t tell me half the time what shes sticking down there. I only know later when I belch. Oh, there was broccoli in that. Circumstances aside I have come to enjoy these moments and appreciate her stuborness. Glad that it’s her pouring a home-made concoction into a syringe rather than me sitting alone by a pump that was mechanically delivering an anonymously pre-prepared bag of nutrition. I don’t get hungry anymore. Sadly, I think that if I never ate again I wouldn’t miss it. I eat when Rae tells me it’s time. But the other day I found myself nonchalantly telling Rae that I’d let her put something down my RPG if she felt like making something. Naturally she leaped at the opportunity and fired up the blender. As I said before, sometimes place and circumstances colide to create a magical moment at the most unexpected of times. Maybe it was the smell of the Indian food Rae had ground up, maybe it was the look of concentration on her face as she measured each syringe full, maybe it was knowing what this meant to her, maybe it was the buzz from the two sips of pinot I’d managed to keep down, maybe it was the stark realization that I was being fed through a hole in my abdomen directly into my stomach. But man, that was a moment for the ages.2015 April 5 Ray and Rae Spooner-4January 8th, 2015. Carle Hospital, Urbana, IL. I stood before the doors of labor and delivery one last time. This was my last call day as a midwife. It had been almost 23 years since I had arrived for my first day of work as a nurse back in January of 1992. 23 years. Damn. There had been a  lot of amniotic fluid under the bridge since then. As a nurse I had tended to almost 700 women through the births of their children and another 2,095 as a midwife.  Back in ’92 there had been no cameras, key pads or ID badges to swipe. Just a rather imposing sign above the door that read “Authorized Personnel Only.” I hesitated, not sure whether or not being a freshly minted Associate Degree labor and delivery RN qualified me as an “authorized personnel” or not. I remember wishing that there had been a window in the door so that I could see what lay on the other side. But alas no. So I took a deep cleansing breath, pushed open the door and walked on through.

But that’s life. You have to be careful what you wish for. Sometimes you are given a window to see what lies on the other side of the door. Unfortunately you are not given the option of whether or not you can go through the door. You just have to take a deep cleansing breath and push on through.Untitled copy

Peace, love and midwives

Ray

7 thoughts on “Sometimes there just aren’t enough napkins

  1. Ray, great blog. I noticed your 41 mile ride on strava! Keep it going. It is so different riding a trike isnt it! Avoiding pot holes is interesting. Missed it, no didnt! Off to my neurologist review on monday. Your comment about exercise after surgery reminded me of a friend who played golf the day after his vasectomy!
    Keep rocking Ray.

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  2. Ray, I don’t think you know me. I’ve worked at Carle a long time and am friends with Nancy Bollero. Anyway, I’ve known you and the amazing work you’ve done. I just wanted to tell you that this blog is an amazing gift to all of us that read it. Your ability to share this intimate time in your life is so generous and selfless. I’ve worked in trauma and ICU most of my nursing life. I’m transferring to palliative medicine in July. All you share is wisdom I hope I can carry on as I work with others that have diseases like the one you have. I want to help others to maintain that quality of life you talked about. But it’s a delicate balance isn’t it. You are certainly in my thoughts and prayers as you continue on your journey. What you share means so much. Cathy Bond

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  3. I strongly agree with Cathy Bond, and am again so grateful you are writing this and sharing it with us! This is also just really good writing! Thank you also for sharing the pictures. I’m crying looking at the one of you and Rae having your recent moment for the ages. If I can be half the partner she is…or that you are…well, that is a high bar, but you all are certainly showing us how it’s done, modeling without prescribing, just sharing. Thank you! From a former patient and faithful reader.

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  4. Steve and I are following your and Rae’s journey….Thank you for sharing your past adventures and present with us….Keep writing!

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  5. I’ve followed your blog faithfully. Your humor and insight are inspiring… even in the face of adversity, you make me laugh. On the flip side, I’ve shed some tears. Thank you for sharing your journey with us…. until the next time.

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  6. I love reading your blogs, Ray. I still have patients asking if you are still here and sharing about how much they wish you could be at their deliveries. You are a true inspiration!

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