SNUC_in_NY

My late wife's journey with SinoNasal Undifferentiated Carcinoma (SNUC), and my subsequent journey as a grieving widower finding my way back to life.

Sunday, September 30, 2007

Hadley Mountain

Views from the fire tower atop Hadley Mountain in the Adirondacks:


















Everything is going to work out OK

When I hiked two weeks ago I followed a path through the woods which wound up-down-left-right. I knew the effort which would be required, I knew how to prepare, I knew the tools to take along for contingencies. I knew that I would eventually emerge at a beautiful overlook because I'd been down this path before. I had little fear of hiking at night because of prior experience and preparation.

My life's path this past year-and-a-half has obviously been one where I had no prior experience to lean upon. Seventeen months ago it was pleasure to picture Robin and I in old age. Maybe we'd be doing different activities (shuffleboard anyone?) but I'd always expected that we would have the same positive outlook, the same joy for living as we grew older. We couldn't anticipate all the changes which would occur in the years getting there - but "life would be good". Who knew that cancer could bring those dreams to such a hard ending so quickly?

My journey since cancer interrupted Robin's life has had its parallels to the hiking trip. Except with no prior experience there was no knowledge to rely upon - knowledge which could reduce fear and feelings of uncertainty. Reading about someone else's experience supporting a cancer survivor, or someone else's experience grieving seems flat and two-dimensional compared to what happens in real life. After all, who could read volumes about hiking the Rockies then purchase maps and simply go out and cross the mountains on foot expecting success? Anyone who tried to imagine the undertaking would likely focus on the struggles to be overcome, the heartache to be felt, the suffering to be endured. On the other hand, with no prior experience they wouldn't be able to anticipate the potential opportunities for learning, the beauty to be seen, the little joys to be found along the way.

People who are forced into a journey that’s not of their own making can focus on all the things that have gone wrong, could go wrong and will go wrong. If there's one thing I learned from our trip it was to keep the focus on what's going right. I don't now how to do something like this without the faith that *there's a plan for each of us and no matter how bad things might seem along the way, everything is going to work out OK*.

Friday, September 28, 2007

Talk through it

Today I went to meet Mark to pick up the taxes. About two miles from his office I thought about how I wasn't grieving today. Yeah - not the right train of thought if you don't *wish* to be grieving.

I noticed the changing colors of leaves in the trees. I thought of last Fall when I scooped up bright red and maroon leaves and I threw them on the dash of the car for the drives to New York City. We couldn't go hiking at the time, so we brought the leaves with us. I thought about the drives to the city and how Robin would be throwing up blood into a bag all the way down. We'd gotten so used to it that it seemed like a way of life. Glad bags with kitty litter were in the house, in the car, in Robin's pockets. I don’t think I described it much on the blog because it didn't seem like the type of information that was very inspiring. It certainly wasn't what we focused on.

Then I recalled our meeting with Mark a year ago when he said he was "surprised to hear that Robin had cancer" - to which she immediately replied "Me too!" What a sense of humor…

So there I go from having it all together to ending up in Mark's office with tears streaming down my face. So I did what I do best. Through a hoarse, broken voice I tell him about the leaves we had in the car, I remind him about the conversation in which Robin said "Me too".

I notice that I don't look directly at him when I talk, I seem to look everywhere else in the room. Then soon the tears are clearing up. We continue on with conversation about life and what's been going on with each of us.

When I consider the grieving response I don't wonder anymore when it's going to go away. It doesn’t bother me to have it. At some point (long ago) I'd resolved that it wasn’t going to control me - maybe that's why I always manage to talk through it. In a strange way it's starting to feel like a connection to that period of my life. Maybe that's why it continues on so strong in some people - because they keep yearning for that connection.

Wednesday, September 26, 2007

Death and Taxes

Grieving still comes and goes. Last week it happened while I was out for a walk and I was thinking about how helpful the folks at work have been throughout this experience.

This week it happened when I had to get together information for 2006 taxes (the six month extension ends October 15th). Since Robin worked in the beginning of that year I had to go through the business files and organize the relevant paperwork . We've had the assistance of an accountant ever since she opened her business. To complete 2006 meant getting together the data from the beginning of the year plus any expenses through the end of the year. I was fine getting together all my own paperwork, but started getting teary eyed when I had to start pulling out her paperwork. There were many records she'd documented and checks she'd written - her handwriting was all over the place. Normally the grieving feelings come and pass through me. This time I knew I was going to meet with the accountant and so the feelings continued right on through the meeting.

Luckily Mark (the accountant) is a great guy and I was able to essentially pass him the raw information from checkbooks and receipts and he was able to convert it all into meaningful tax information.

Sunday, September 23, 2007

Experiential learning

I feel like I've been out having adventures for the past few months. Continuously pushing my limits and expanding my experiences. Almost like a I'm wearing a new skin - it's still me inside but I do and say things that would have been foreign to me a couple of years ago. I've progressed from being a bit nervous and unsure of myself to becoming comfortable in what feels to me like an entirely new environment. I'm certain that I am learning as much (or more) about myself as I am about the new people that I meet.

When it comes to learning about my environment I feel as if I've been stranded on a foreign island and after months of exploring I'm starting to find the furthest reaches. I'm starting to see the boundaries by which I define myself.

Thursday, September 20, 2007

Overabundance

On an episode of "Scientific Frontiers", Alan Alda is meeting with a biologist who is studying social behaviors in chimpanzees. In one experiment, they throw two large bundles of leaves into a pen with a dozen chimpanzees. The biologist notes that most of the group shares one bundle while one of the juvenile chimps takes the second bundle and tries to protect it, keeping it all for himself. There's more food in a bundle than the juvenile chimp can possibly eat by himself, but he's too immature to realize that he's got an overabundance and that there's more than enough for him to share with others.

The biologist notes the downstream effects of the social interactions. Later in the afternoon as the chimps groom each other, the ones who shared food receive more grooming from their peers. The chimps also remember who shared with others. If one chimp has shared food with a second chimp, a third chimp who observed this will be more willing to share food with the first chimp. The chimps exhibit observation and memory of interactions even when they don't directly benefit.

I remember reading once that if you feel like you don't have enough of something (love, money, etc.) then you should start giving away whatever you do have. It seems like in the act of giving you're released from your attachment to that "need"? Maybe in sharing you also open up the pathways in the universe for those things to flow back to you?

Wednesday, September 19, 2007

Choices

I think you don't who you are until you're subjected to experiences and have to make personal choices for yourself. You can espouse positions on any subject but in the decisions you make and the actions you take you find out who you really are and what's important to you - what values you really embrace.

Tuesday, September 18, 2007

Thanks for all the fish

On Monday I'd gone swimming in the Gulf and thought I felt little things bumping into me. I stopped at one point to make sure it was fish and at first glance thought there must be hundreds of them. As I watched they swarmed around me and I realized there must be thousands of these little two-inch fish - all darting about at high speed. It was actually surprising that they were not colliding with me more often! At first it was disconcerting, then I thought "what are they going to do to me". Rather than fear, having these little guys swimming so close gave me some feeling of connection. I thought if I were going to worry, I'd worry about sharks - but hey, I'm not going to worry about them either! I'm sure they're too few and far between to be of immediate concern (though I'll stay close to shore anyway).

After the swim I stopped near the shore where it was just deep enough to rest my knees in the sand and float in the surf. I could feel the waves come and go. I wondered how much of my body content was water. I thought about how I feel like I'm in great shape these days, yet my body doesn't feel as limber and strong as when I was half this age. I thought about how this body will continue to carry me on my journey until one day I don't need it anymore, or coincidently, it just plain wears out.

Tuesday I repeated the swim. The water's so warm (90 degrees?) that it's easy to walk right in and get started. Within moments I began to feel little fish colliding with my sides and then I started to feel them landing on my back. I thought, hey it's nice that they're around but this is getting a little out of hand. I took one more stroke and then rolled over onto my back where I found a half dozen sea gulls hovering right overhead. I started laughing - all these little fish think they can hide around me! The gulls were so close I tried splashing them, but they seemed to know just exactly what my range was. After a little play I rolled back over and continued swimming. Eventually everyone moved on to play elsewhere. I finished my swim and headed out to get ready for dinner.

Saturday, September 15, 2007

Name in the sand

I was early for a Saturday night dinner (in Florida), so I took some time to walk on the beach. My mind wandered. I thought of my hike in the woods the other night. Things here and there reminded me of Robin.

Usually I'll let the thoughts flow where they will, but sometimes it's best to put them away for a while. I walked to the where the surf was coming up over the sand and then receding. In the sand I scribed "Robin" and a smiley face. I took a last look at it and then continued down the beach.

On the way back my thoughts were onto new things. I momentarily wondered where I'd been writing in the sand.

Friday, September 14, 2007

Muscle memory

Many of the skills we use in everyday life (e.g. brushing teeth, combing hair) are facilitated by "muscle memory", the unconscious recall of how much pressure to use or the proper speed at which to move our hand. Imagine if you had to consciously think about "how" to comb your hair as you were doing it!

Last summer I shaved my beard down to a goatee. Last week I shaved it all off, probably for the first time in five years. The first several days were pretty awkward. It seemed that each day when I shaved around my chin there were areas in which I was using too much or too little pressure - ouch! Sometimes I'd be going over areas several times to finish the job which made things worse - can you say "razor burn"!

This morning things changed. Instead of repeated short passes everything went smoothly - zip, zip, zip. Job done, no cuts - didn't even think about it!

As with many things, old skills seem to come back pretty quickly with a little practice. I still find new situations in which to use my developing social skills. Practiced skills are becoming second nature and they seem to form the foundation for continued progress. I'm often working outside my comfort zone, but each time I do the zone seems to expand a little.

No worries, everything is going to work out fine.

Thursday, September 13, 2007

Stillness

I'm laying on my backpack looking up at the stars and watching the strobes on aircraft high overhead. The starry sky reminds me of Block Island - in between the stars are more stars - like they're never ending. I'm at the end of a hike in the Berkshires and just didn’t want the evening to end. I stopped a couple hundred yards from the parking lot and initially just looked up at the night sky. After a few minutes I squatted to give my legs a break. A little later I sat down on my butt and leaned against my pack. Now I've been here a half hour, laying flat out on the pack and feeling like I could stay here all night - if only I didn’t need to get home. As I breathe I can feel that I exhale completely. When I inhale it's just the amount that's needed, then a deep exhalation again.

Occasionally I hear an owl hooting. I hear crickets but they seem quieter and more subdued than the crickets at home.

I started out after a long day at work. I had an appointment this evening that I had to cancel and I found myself with the evening free. The idea of going for a hike has been in my head for weeks now. A stop at home to change my clothes and gather up some gear and I was at the trail by 6:00pm. I knew of an overlook forty-five minutes away which I could get to before sunset. I had a hurried pace which I couldn't seem to slow down even when I felt a hot spot on my left heel. I knew it was a blister forming, but I wouldn't take care of it until arriving at the overlook.

The trail runs along a ridge and it's entirely in the woods until it suddenly opens into a clearing. Reaching the overlook I saw clear skies in all directions. I found a place to sit, take off my boots and socks and I started to cut out some moleskin to protect the new blister. Better to get it done right away, then I could have dinner while the sunset. I watched the sun get lower and lower, took some pictures - and then missed the last glint of sunlight as I chowed down on cheese and crackers.

When I got ready to go I thought I'd have twenty minutes before I needed a headlamp, but as soon I re-entered the woods it was obviously too dark to walk without lights. Sometime in my past I would have felt some hesitation, some nagging doubt about "what if something goes wrong" walking in the dark. These days I'm prepared, I've got the equipment to be safe overnight. The risks seem to be under control so no worries. Within ten minutes I'm thinking how I'll soon be back at the car and the adventure will be over for the evening.

So that's how I found myself in the dark under the stars at 9pm. Why would I be in a rush to leave? The only word I could think of to express what I felt inside while laying there was "stillness".

Chinese Fortune

"Many a false step is made by standing still."

Dreams

More rock and roll philosophy - here's a snippet from Van Halen's "Dreams". I have no idea how lyrics translate if you don't know the music behind them, but anyway...

So baby dry your eyes
Save all the tears you've cried
Oh, that's what dreams are made of

Oh baby, we belong, in a world that must be strong
Oh, that's what dreams are made of

And in the end on dreams we will depend
'Cause that's what love is made of

Wednesday, September 12, 2007

It's probably a little bit of everything

The grieving feeling started again last week. I seem to have much longer periods without it and then it comes and stays for a few days at a time. It's not typically intense, but subtle feelings might well up each day once it's begun. I don't know if it's because there are a series of days when reminders happen day-after-day, or if I become more sensitive to things around me, or if once it's started it needs to reach a peak before it recedes. In this stretch I guess I've been experiencing reminders each day.

Saturday I met my niece Amanda for lunch in Lake George. At a restaurant I saw a photograph of the lake which reminded me of hiking, swimming and boating adventures that Robin and I had experienced there. After lunch Amanda and I sat on a pier in Bolton Landing and chatted. From our vantage point I could see Tongue Mountain, the Narrows and Shelving Rock. We talked some about "Aunt Robin" and I told Amanda observations that Robin had relayed to me about their hikes together. At one point tears welled up in my eyes which I wiped away. First the right eye, then the left eye, then the right eye, then the left eye. I don't know if Amanda noticed or not, these days it doesn’t interfere with my ability to talk.

On top of some daily reminders in the last week, I also haven't been exercising or blogging much - I think both of these activities provide an outlet for me. So when I felt I lot of extra energy today I decided to get in some exercise and a short bike ride. By the time I got the bike outdoors I was psyched to be going out. One last item - I saw the mail and decided to bring it indoors. I flipped through the stack and saw a letter from a local address. I decided to open it and found a wonderful two-page letter from one of Robin's clients who had just recently learned about her death. Reading the letter brought tears to my eyes. What a wonderful thing for people to have been so impacted by Robin's life and her work as a massage therapist.

I left on the bike ride with an even higher level of energy. I found myself pushing harder than ever, up and around the familiar six-mile course. I knew I was pushing hard but I wouldn't realize how much so until I got home and found my legs weak and wobbly as I got off the bike.

I proceeded to get some water and sat on the back porch, and that's when the crying really started. I can't remember the last time it had been this intense. The cool temperature today made the streaming on my cheeks felt even hotter. The whole experience of crying is a lot different these days. It seems somewhat detached from feelings of happiness or sadness - it just happens in the moment, it just is.

In these moments I still ponder the question of what's going on in people's heads when they are grieving. Is it crying in sympathy for the person who is gone? Is it crying for the personal feeling of missing the person? Is it crying at the realization of our own mortality? The question seems unanswerable - but something tells me it's probably a little bit of everything.

I think this is probably just what I've needed for the past week. Afterwards I took a shower, put on some comfortable clothes (including my "life is good" boxer shorts!) and took it easy for the evening.

Lobster - your full weight

As visitors came and went last Winter they would move around the refrigerator magnets to construct various phrases. Here are a few:


Yeah, I'm still not sure what the lobster one is all about. :)

Thursday, September 06, 2007

Figure eights

At the end of Monday's evening ride I ended up biking through the neighborhood around my house to a street which overlooks the valley. Last Winter Dad and I would occasionally walk over here for a break and to talk. He must have been freezing during those walks, having lived in Florida for so long. Over the years, Robin and I had walked over here many times.

I biked up and down the street overlooking the valley and watched the sun makes it's way toward the horizon. I didn't really want to go home and get off the bike, but the sunset was still twenty minutes away.

I don't know if it was the constant ringing of the chimes at home on Monday, or the feel of Fall coming, or maybe it was an anniversary of some event from last year, but I could feel tears in my eyes. It may sound weird, but it felt OK. I pondered briefly what brought it on, but then I thought I didn't really have to analyze it. I was just OK with it.

I did consider that there used to be a dog on this street named Tyler. He would bark anytime someone came down the dead end street. One time, to his owners surprise, I managed to walk down the street and begin petting him without eliciting any barking. Tyler passed away in the last year also.

I rode up and down the street. I made figure eights. I practiced riding with no hands. I tried keeping my eyes on the sunset while I did circles in the street. I guess I was doing the best kind of learning, where it's all play.

Wednesday, September 05, 2007

Bike ride

Monday evening I did a short bike ride. I hurt my knee over the weekend climbing over rocks at the beach, so it was partly a test ride to see how sore it really was. Not too bad, but it's not ready for hours on the bike yet. I've got massage oils for sore muscles and bruises which seem to help.

A few trees are starting to change color. The overnight temperatures have reached lows in the fifties. Occasionally there's a smattering of dry leaves on the side of the road. Even though only a few trees out of thousands have changed color they still gave me a sense of the coming Fall (yeah, just another chance to contemplate the cycle of life).

I've been biking differently these days. Even with the sore knee, I stand up on the hills and stay in a higher gear. Sometimes it seems that just when I'm getting my stride for the season, the sun starts setting early and the days start cooling off. This time of year it will feel like a challenge to get out when it's below sixty degrees, but in the middle of winter if it gets as high as fifty I'll be thinking about dressing up and getting out for short rides.

As I bike along some guy mowing his lawn waves to me. I smile and wave back. I figure I must be putting out positive energy again.

These days when I do things I don’t seem to worry about quantity so much as quality. Things seem less hurried. My focus isn't always where it could be, but it follows where my heart wants it to go. I feel like I spent the Spring clawing my way out of a hole. I don't know how consciously I thought of it at the time. I know very early on I met people in the same situation who seemed lost. I don't know what made me fight back against that. I feel like I've covered a lot of ground, and yet I still feel like things change every week or two, it just doesn't seem as obvious to me anymore.

I read once that humans tend to overestimate what can be achieved in the long-term, and they tend to underestimate what they can achieve in the short-term. I don’t think I've ever "estimated" anything about myself or where I'm going. I guess I knew where I didn’t want to go. I couldn’t see myself two or three years down the road still trying to figure out what happened. Some things I think you can't ever figure out, and if you get hung up on them you're just spinning your wheels.

Sometimes I wonder how Robin would be doing if I'd been the one who died. Somehow I trust that she'd been doing OK. She had that toughness about her. I suppose that scenario is playing itself out in some parallel universe. In the meantime, we're here in this one and time just keeps on flowing…

Tuesday, September 04, 2007

Got my focus back

I noticed recently that I'm able to focus much more clearly on whatever it is that I'm doing at the present moment. It's not that I haven't been able to get anything done this year, but it has often felt like my thoughts were muddied or my mind wandered. Lot's of times while I would get things done like cleaning the house, my mind would be blank. It often felt like I was performing mechanically - my heart not quite into the task at hand.

During this time there still have been activities in which I could become consumed - writing for the blog, bicycling, weeding the garden, washing dishes. Lately though, I've been increasingly productive and more often than not find myself getting lost in whatever I'm doing. I guess it's somewhat analogous to bicycling in upstate New York - which for many folks is not a year round activity. In the late Winter and early Spring when the temperatures begin to rise there's a period of readjustment to the new season. During that time the body relearns what it's like to move and to stretch again, it relearns comfortable rhythms and varying paces. Biking through the countryside in Spring, the season of rebirth, the body awakens to a season of new challenges and new possibilities. Soon the muscles are performing again and the body's back in tune with its environment.

Monday, September 03, 2007

Ringing in my ears

Last year a friend sent Robin some healing chimes (I guess they produce a particularly healing musical note). Whenever I heard them ring in the springtime I'd think of the times when Robin was going through treatment. This summer they rang so loudly that most of the time I kept them silenced by tying them up. Occasionally I’d untie them and let them ring for ten or twenty minutes while I was out back. This morning as I had breakfast on the porch I decided to leave them untied. When I hear them now they bring a smile to my face. They still remind me of Robin - but when she was a happy girl - and they also remind me that life is precious.

Anyway

Well, until I learn to write songs other people's lyrics will have to do because sometimes they capture ideas so eloquently…

Anyway (Martina McBride/Brad Warren/Brett Warren)

You can spend your whole life buildin'
Somethin' from nothin'
One storm can come and blow it all away
Build it anyway
You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway

God is great, but sometimes life ain't good
When I pray it doesn't always turn out like I think it should
But I do it anyway
I do it anyway

This world's gone crazy and it's hard to believe
That tomorrow will be better than today
Believe it anyway
You can love someone with all your heart
For all the right reasons
And in a moment they can choose to walk away
Love 'em anyway

You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway

I sing
I dream
I love anyway

Sunday, September 02, 2007

Beach Time

Sunday became a beach day too. Yani and I played a paddle game hitting a ball back and forth by the surf. I thought "what a great place to meet people" and I started goofing around and asking passersby "what time is it?" - singles, couples, old, young - it didn't matter. It was actually surprising the range of answers people gave. Not many people were wearing watches so the answers varied plus or minus an hour. Between Julia, Yani and I we had three cell phones and a watch, but that wasn't the point. At one point some ladies sunning nearby overheard me getting inexact answers so they chimed in with the exact time from a blackberry. Why the heck would you need a blackberry at the beach? Oh well, I kept on asking folks for the time anyway and Julia, Yani and I kept laughing about it.

Saturday, September 01, 2007

Beach Day

We biked to the beach today. The island is so small that wherever you are, planes are flying overhead as they come and go from the airport which is located in the center of the island. Just before sunset we headed out to the airport so Julia and Yani could see the island from the air. It's always amazing the different perspective that flying brings. They'd been on the island all week, traveling from one end to the other on bikes and now they could see the entire island out the airplane window. We spotted the various lighthouses, the beach we'd been to that day, the downtown, and finally the house at which we were staying.

Initially Yani had seemed hesitant to fly in a small airplane, but afterwards he was asking about how to obtain a pilot's license. I love taking people flying! :)