Escape

My final deployment as a naval officer involved circumnavigating the South American continent. As the sole aviator on a destroyer squadron staff, I was responsible for all air operations, diplomatic clearances, and scheduling among the flotilla of ships that were part of a series of naval exercises called UNITAS. I was embarked with the commodore in the flagship USS Moosbrugger, a Spruance class destroyer, then home ported in Mayport, FL.


USS Moosbrugger - DD 980. This was the flagship I was embarked in during my last deployment in 1998.

Corcavado Mountain with "Sugarloaf" in the background.
 

These "favela" shanties dot the countryside around Rio

One of the first ports we visited was Rio de Janeiro, Brazil. Naturally, a group of us took a cab up the Corcavado mountain with its iconic Chriso Redentor statue. After taking the requisite tourist pictures, we headed back down to wander around the waterfront to see if we’d actually see another icon – the girl from Ipanema! Well, there were probably a lot. What struck me was not the beach, but the scenery on the way down. The juxtaposition from the famed statue and what was on the road was something that has kept with me all these years. Crammed on the verdant mountain that is the foundation for this whitened statue is Rio’s also-famed favelas – a sprawling corrugated tin shanty town. At the time, even more amazing was that among these tin shacks were huge 8’ satellite dishes everywhere. As someone who works with electrical contracting and engineering, I can’t fathom the safety issues between the rainforest, the metal shacks, and these oversized dishes!

Riding by in the air-conditioned cab, the vision of desperation to escape that kind of squalor has never left me.

Fast forward 15 years.

The favelas still cover Rio and I’m sure there are some holdout gargantuan satellite dishes although miniaturization has, without a doubt, changed what the favela landscape looks like, not unlike our own here in the States. There are the smaller dishes dotting the Southern side of some homes, but we're pretty much wireless, so most public places here are filled with people so tuned into their personal electronic spaces they’re practically oblivious to the people sitting next to them. People get together and they spend more time looking at their phone for the latest status update and text than each other.
 
Last Sunday I read a rather disturbing op-ed piece in the Seattle Times by Leonard Pitts, Jr. that drove that point home. It would have been funny, “except that somebody died,” he wrote. A 30 year-old passenger on a San Francisco light rail train had a .45 caliber pistol and like some Saturday Night Live skit gone awry, pulled the gun out and pointed it across the aisle, put it back, pulling it out several times. But no one notices! Why? Because they’re too wrapped up in their smart phones, iPads, and computers to pay attention that the guy next to them has a lethal weapon out. Now, we’re talking about a crowded commuter train here, but everyone is too engrossed in Facebook, Tweets, and Angry Birds. According to police, Pitts continues, the gunman shot a 20 year-old college student exiting the train.

That got people’s attention.

If anything, it reinforced something that leukemia has proven beyond any shadow of a doubt to me: technology has trained us to look for connection, but the human spirit – and I must add the physical body – won’t be satisfied by its electronic placebo. I’ve been pretty vocal about how grateful I am for such a good support network I have in my family and friends. That, in addition to being in good physical shape before this all went down has made a tremendous difference in my recovery. I certainly wouldn’t have built up the network for such an occasion as this, but it’s investing in people that made it possible, to be sure.

The really great thing about all this is that it emphasized who my friends really were as opposed to acquaintances. That’s not a bad thing, of course. Friendship takes some time to cultivate while being an acquaintance is easy and effortless. Friendship requires investment of time and emotion while being an acquaintance can be a no-strings attached relationship. But friendship has so many long-term rewards.

The other thing leukemia has shown me is that escape is futile. The guy brandishing the .45 was figuratively sitting next to me and I sure didn’t see the gun pointing at me. I’m just as guilty as all of those commuters on the train and just like the college student exiting the train, I got nailed by a bullet to the back of the head with “acute myeloid leukemia” written on it and landed in the hospital. So, for the better part of the year, I’ve been dealing with something I cannot escape, regardless of the electronics I log on to every day. Blind dumb luck, I guess?

The irony of leukemia is that it has brought me closer to my friends and family and I have been using electronics to keep in touch with acquaintances to possibly turn those loose relationships into friendships. I honestly didn’t see that one coming. Mostly, I was and am still expecting some sort of internal refocusing. After all, this is far from over. But like anything, the proverbial paralysis of analysis is something I’ve stumbled on before and I think I don’t want to go back there. I’m actually pretty good with letting the dust settle on life’s heavy lessons here and enjoying simply being alive. Those lessons I’ve learned so far through this aren’t going away any time soon and I have no desire to escape them.

Yeah, I’m still human and no doubt, I’d like to escape my frail body right now and head off to Hawaii to soak in the tropics (Yes, good doctors, nurses and Mom, I’ll be compliant and wearing appropriate clothing and my SPF 50+ sunscreen! I ain’t doin’ this again!), but I’ve still got a lot of work to do to be ready to truly enjoy it.

Those afflicted with Hanson’s Disease (aka leprosy) and some form of diabetes yearn to have the sensation of pain and on more than an insignificant number of occasions, I’ve had to embrace the pain, not because I’m a masochist, but because it is a gift to remind us that we live and struggle…and we triumph over it. And we not only survive, but we thrive. To do less is stagnation which ultimately leads to decay and death. I’m not ready to go there. There’ll be a time, but not today. Not today.

For today, I’m working on rehabilitating my muscles slowly and deliberately on my own and working lock-step with my medical team to make sure I’m healing internally and based on everything I’m hearing, things are thankfully moving along well.

Thank you for keeping with me on this very long process. No one plans on cancer, but neither does one plan on being a friend. It’s all better life through all kinds of chemistry, right?

Be well (please!), stay strong, and as always, much love to you all.

Today’s music from The Newsboys – Something Beautiful

I wanna start it over
I wanna start again
I want a new beginning
One without an end

I feel it inside
Calling out to me

It’s a voice that whispers my name
Its a kiss without any shame
Something beautiful, yeah, yeah

Like a song that stirs in my head
Singing love will take us where
Something's beautiful

I’ve heard it in the silence
Seen it on a face
I’ve felt it in a long hour
Like a sweet embrace

I know this is true
It's calling out to me

It’s a voice that whispers my name
It's a kiss without any shame
Something beautiful, yeah, yeah

Like a song that stirs in my head
Singing love will take us where
Something's beautiful

It’s the child on her wedding day
It’s the daddy that gives her away
Something beautiful, yeah, yeah

When we laugh so hard, we cry
Oh, the love between you and I
Something beautiful

It’s a voice that whispers my name
It’s a kiss without any shame
Something beautiful, yeah, yeah

Like a song that stirs in my head
Singing love will take us where
Something's beautiful

It’s the child on her wedding day
It’s the daddy that gives her away
Something beautiful

When we laugh so hard, we cry
Yes, the love between you and I
Something beautiful
Something beautiful

A 1 AN A 2

A friend of mine – incidentally, my daughter’s father in-law – is on the tail end of his dance with acute leukemia. He sees, that despite leukemia being a really bad actor, that the experience with it was a dance of sorts. Make no mistake, the dance with leukemia is still the very much a dance with death, but like so many other dances on life’s card, there are some numbers you just don’t get to sit out. It took some time for me to warm up to that metaphor being in the middle of my own battle, but I get it. So, as for me right now? Well, I’m the guy you feel sorry for out on the dance floor, unable to quite figure out which foot goes where, but I will make the most of that performance and try to smile through it, nonetheless. After a while, I might even figure it out and occasionally, I actually look like I belong. The key is getting out and dancing, even when it feels awkward, tiresome, or downright silly. 

After many stumbles, I’m catching on to this little number called cancer, but if it’s all the same to the viewers of American Bandstand (yeah, I'm really dating myself there, huh?), I’d really like to try something else…something with a beat and easy to dance to!

The night the Titanic hit the iceberg, people were dancing. Some were dressed in their finery and others in their workaday clothing; some danced a waltz and others a folk dance. Style didn’t matter. Everyone came together to celebrate life in their way. They were told that this huge ‘unsinkable’ ship couldn’t be taken down. It’s fair to say that even though the ship had struck the iceberg, a good number of people continued to dance, oblivious to the fact that the compartmentalized design of the ship wouldn’t be enough to save it. As the ship listed and its crew started abandon ship procedures, things became real and the music stopped. Some of the people would obviously never dance again and the survivors would find their steps tragically altered.

Yet, they would have to find a way to keep dancing.

In a very real way, a cancer diagnosis is hitting that iceberg. It doesn’t just crunch in the bow of the ship, it rips open the side and unless some serious damage control takes place, the ship is going down mighty fast. For me, every day has been an exercise in damage control and thankfully, most of those days are pretty manageable. I have been so grateful for a wide network of friends and family, that I haven't really experienced a lot of pain or felt sick. Most of the side effects from the meds I do take are either offset by other meds or I can chalk it up to being relatively young, in decent physical shape, and genetics. Even the inconvenience of having to spend quite a bit of time around hospitals and doctors is bearable, albeit rather tedious after a while. I can pretty easily compartmentalize these things.

After a few chemo cycles, I know how my body reacts to the drugs and on what days in that cycle where I need to take extra precautions. I’ve learned to ‘listen’ to my body so I can be productive or when I need to back off. Sometimes that means that I’m up in the middle of the night working through problems and sleeping in the middle of the afternoon. Cancer doesn’t work on a time table and quite clearly, neither do I for a while. That can be pretty inconvenient for a social life or scheduling meetings, but it is reality. And it’s a good exercise for the ‘new normal,’ because up to this point, I played by the rules the Navy taught me: compartmentalize! Before cancer, I just pushed through pain or ignored the discomfort. I always got through it, whatever it was. Suffice it to say, leukemia is not something I can just put in a box and push through.

The difficult part is when a number of these small things happen in tandem or at the same time. It is then that inconveniences, procedures, or pains that would normally only register a 1 on a scale of 1 to 10 start to add up and then these otherwise inconsequential things grow from a manageable hole in the bulkhead into a gash that floods several compartments and the dance starts to look more like a seizure or fit as my figurative ship starts to go down. Having people to help right the ship and get me back to my feet has been crucial and of course, while that doesn’t translate into me sinking, boy can my stern drag!

During my first hospitalization, I felt that way a number of times, but as this adventure has progressed, I don’t find myself in extremis very often. That bulkhead keeping out the big ol’, bad ol’ icy cancerous waters seems to have been reinforced, boosting my threshold of pain a bit,. It doesn’t equate to meltdown moments being a thing of the past, just fewer and farther between. The dancing may look a bit better, but there’s still a lot of activity below decks to keep the ship afloat.



Lawrence Welk and one of the first
vanity plates from way back when!

Sure, I ponder whether this ship that I’m driving is going to make it to port some days, but this isn’t the movie, it’s life. That port is the cure and there’s another iceberg field between here and there called a bone marrow transplant that I have to navigate. I’m counting on successfully avoiding any more holes or gashes in the side of the ship, but the harsh reality is that it’s going to be a tough, if not outright perilous, journey between here and the cure and it’s going to take some time. In the end, learning to dance on a rolling ship that takes on water from time to time, will put me in a position to help someone else gather up their courage to step out on the floor, and with more grace than me, dance among the stars.

Cue the music, Mr. Welk … a one an’ a two … or maybe Vega4 and Life is Beautiful instead.

Be well, stay strong, and much love to you all!

Life is beautiful
We love until we die
When you run into my arms
We steal a perfect moment
Let the monsters see you smile
Let them see you smiling
Do I hold you too tightly?
When will the hurt kick in?

Life is beautiful
But it's complicated, we barely make it
We don't need to understand
There are miracles, miracles

Yeah, life is beautiful
Our hearts, they beat and breakWhen you run away from harm
Will you run back into my arms
Like you did when you were young?
Will you come back to me?
I will hold you tightly
When the hurting kicks in

Life is beautiful
But it's complicated, we barely make it
We don't need to understand
There are miracles, miracles

Stand where you are
We let all these moments pass us by

It's amazing where I'm standing
There's a lot that we can give
It's just ours just for a moment
There's a lot that we can give
It's amazing where I'm standing
There's a lot that we can give
It's just ours just for a moment
There's a lot that we can give

The Fellowship of Suffering

My last month on active duty in the US Navy was a very quiet uneventful one…except the night I decided to find something different to do and on one cold January evening the very day before I was due to be discharged, I decided to go ice skating. The rink was practically empty and I enjoyed myself. I’m not an accomplished skater – I’m merely passable, capable of holding my own without looking too much like the one waving his arms about to maintain some sort of balance. Well, that wonderful evening, I was standing near the entrance to the rink when the skates went out from underneath me and I was flat on my back. I would find out that the fall had actually broken my leg, albeit a rather minor break. Because the fracture was on the outside, I was somehow able to walk on the leg, leading me to believe it was just a sprained ankle. You can imagine the chagrined look on the corpsmen’s faces when they realized they had me walking on a broken leg. Suffice it to say, they got me off my feet in no time and wanted to put me in a cast. Driving a manual transmission car with my toes was a challenge, but I was determined!

I got over the novelty of the cast pretty quickly and was none too disappointed when the day came to get it removed. I remember sitting in a waiting room with a collection of other walking wounded people awaiting their own removal of multi-colored casts. The waiting room was quiet enough to hear a pin drop. The silence was broken by a good ol’ boy from Tennessee whom we would all find out had in his young life, sported casts on many places on his rather large frame.

“Boy, but don’ it itch!”

We all let out variations of bemused sighs, all nodding in agreement. Everyone began sharing how long they had worn their cast and how they managed to get injured. The place practically turned into a religious service, everyone bearing testimony on their suffering. Can I get an ‘amen,’ brother? When I lived in Minnesota, there was a common suffering of the intensely cold winters. If it got above 0° any time in the month of January, it was cause for celebration and when it crested 15°, I, no kidding, saw shorts. When you live in Minnesota, you revel in complaining about the weather. It’s just what you do.  Once I put the frigid temperatures behind me in living in Southern California, I did more than store my lovely Norwegian sweaters with cedar blocks in plastic boxes under my bed never to be worn in the eternally warm weather. Arriving in November, I was greeted by shivering Californians wearing fur-lined parkas in the ‘new’ frigid: 50°(yes, really)! In SoCal, the new fellowship of suffering was the hellish traffic. Just as in Minnesota, we all acknowledged the extreme weather, in SoCal, we all acknowledged the traffic and once again, we reveled in how bad it was. It required no explanation, perhaps just how much time we spent in it. Now that I’ve arrived in Utah, it doesn’t get really all that cold and the traffic can’t compare to Southern California, I laugh out loud at anyone who complains at either!

My new fellowship of suffering seems to come rather often now with other people who are suffering from chronic illnesses and most especially with other cancer survivors. I spend quite a lot of time at the VA Hospital getting routine blood draws and because I’m there so much, staffs in many places throughout the hospital know me by name. I still have my PICC line in, so I don’t get stuck with a needle for my lab tests this round – I know I heard an “amen” from the back of the room – so I go to the Ambulatory Medicine Unit (AMU). The AMU has a number of rooms with a few recliners and IV poles. People who get outpatient chemotherapy, blood products, or infusions for other chronic conditions can pull up to the pump, get serviced (oil changed, windshield squeegeed, and a fragrance of their choice all complimentary of course) and be on their way. For those of us with PICC lines or ports, it happens a bit faster.  It’s as easy as unscrewing a cap and connecting the IV. No muss, no fuss, no pain – we all win…and we get an extra punch on our frequent customer card along with a cup of coffee and a packet of graham crackers. What a deal!

This morning, the nurse took all of about 2 minutes to come in and take a blood sample from my PICC line and the rest of our time, we spent just chatting. She flushed out my PICC line and it struck me that it was not fair that I gave blood and she just gave me water…isn’t blood thicker than water? Yes it is, but that’s the arrangement. So, she took my test tube sample off with a smile (and left no graham crackers) for the lab to run their chemistry and count and while I was waiting for the results, I got two roommates. And just like the good ol’ boy from Tennessee, one of us started talking and we all just laughed through our own shared suffering of sorts. We were all veterans and had long-term conditions – one had Parkinson’s and the other had rheumatoid arthritis. My numbers came back really good and I left with new friends and a bit of a spring in my step.

The nurse "flushing" my PICC line with a saline solution.
I do this at home every morning, but she's getting ready to
draw blood and then change the dressing around where
the actual catheter enters my the vein in my arm. You can see
the greenish donut where the purple line disappears. This
line goes into the vein and it feeds through my chest to just
above my heart. Pretty cool, huh? Well, it keeps me from
getting needles in me on a regular basis!

I’ve found that as much as I don’t ever want cancer or illness to be the first thing about me, there are times I need to be able to talk to people who know what I’m going through. It’s far easier to talk with two complete strangers about what I’m working through than my loved ones. I think that’s mostly due to the fact that I just don’t want the relationship to change. I don’t want them to treat me differently. I want and need that stability that regardless of the awful things that I’m walking through, for the important people to be there, to be unchanged is critical.  My life, my world may be shaking underneath, but the ones who are my foundation stand in front of me, holding me steady as my feet wobble from the quake. I can’t make them understand what it is that makes me unsteady the same way they can relate to heavy traffic or nasty weather…and I guess the truth is, I wouldn’t want anyone with whom I’m depending on to have to empathize fully because I wouldn’t want anyone else to go through what I am.

That said, I really do want to be able to be there for others who find themselves in the dark with a new cancer diagnosis and unaware of what to do next. I’m not a medical expert and I don’t want to be a source in that department, but I know those who have meant the most to me have given me the simplest of human needs – a simple touch by holding my hand when I hurt, hugged me when I felt unattractive as my hair thinned and fell out, smiled at and with me or told me jokes when I just wanted to cry, brought me a cup of real coffee when the chemo made breakfast smell putrid…and so on. Every little message of love and support pushed me one day closer to healing and whatever I can do along the way and after the only thing left from my cancer experience is PICC line scars, then that’s what I do.

That’s what the fellowship of suffering grants – authentic empathy and a responsibility to ease other’s pain. It’s not a group I had endeavored to join, but as I’m wearing the accoutrement of its membership and with so much pain around me, it feels right to smile and laugh with those who hurt.  Funny thing happens in that process – I make new friends…and I find myself feeling better.

Be well, stay strong, and much love to you all.

Today’s music – a classic from Bill Withers in 1973: Lean on Me

Sometimes in our lives
We all have pain
We all have sorrow
But if we are wise
We know that there's
Always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things
You need to borrow
For no one can fill
Those of your needs
That you won't let show

You just call on me brother
When you need a hand
We all need somebody to lean on
I just might have a problem
That you'll understand
We all need somebody to lean on

 

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

You just call on me brother
When you need a hand
We all need somebody to lean on
I just might have a problem
That you'll understand
We all need somebody to lean on

If there is a load
You have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

Call me
If you need a friend
(Call me)