No Easy Way to Say This

As a young junior naval officer, I had someone who was a mentor of sorts.  Bob Owendoff was one of my professors my senior year at the Naval Academy, a devout man of principle and heart. I wrote about him on my other blog here. He gave me a book that had a simple goal-setting exercise that has stood me well in parsing out the important from the urgent. In Alan Lakein’s book, How to Get Control of Your Time and Your Life, the question is posed, If you knew you would be struck dead by lightning in six months, how would you spend those six months? Assuming all final arrangements had been taken care of, what would you do?

Asking a question like that forces your hand to see the things that are really, really important, doesn’t it? Precious few of us know when our number comes up. If we’re lucky, we live to a ripe old age and when it’s our time, we pass away peacefully in our sleep, leaving behind a wonderful legacy of memories and people who honor it. When that question becomes a pronouncement, things are a bit different, but they don’t have to be.

I’ve taken solace in a young man named Zach Sobiech who fought a brave battle with his own bone cancer who made a point of saying that you don’t have to be dying to start living. I’ve been buoyed by a single image of people holding the hand of Jen Merendino who, on her death bed, was able to look back and say, “I loved it all.”

I found Angelo Merendino's images of his wife evocative and powerful.  I bought a variation of the photo above because what I needed the most was the human touch of caring hands. I still do.  You can see the full gallery of images and support Angelo at this web site

In my case, I’ve done my level best to stay optimistic and positive in the midst of some pretty rough stuff. Leukemia, for me, has been an exercise of academics because it has all been on paper. Lab reports, x-rays, MRIs, CT scans, nuclear bone scans, vascular and echo ultrasounds, blood sugar pricks, and so on. Yeah, the hurling into those cute little green tubs was real enough along with the extensive bruising on my stomach and arms, the cramps, the chronic fatigue, the aches, the pains, the prodding, and everything else?  Pretty real…nothing academic about any of that.

I don’t have a remarkable story like Zach’s and I don’t have a chronicle that so eloquently and beautifully details the life and untimely death of Jen Merendino, but I have my own experience that continues to unfold.

Today, the latest wrinkle in that very complicated piece of origami was that my lungs continue to deteriorate. After my latest pulmonary function test, another CT scan, and an x-ray, I had the ultimate sobering conversation with my oncologist and a pulmonary doctor. While we will continue to treat the ailments in the lungs, unless they respond somehow to the existing medications, things will continue to decline over time. How much time? No one can be certain, but “months” was the answer I got when I pressed.

So, I have this lovely little oxygen cannula and now have my very own high-tech wheel chair just like my double amputee friend and fellow vet, Isaac.

I gotta tell ya, this is not how I envisioned today turning out.

So, that goal-setting exercise about six months just got very real. Sure, there’s a possibility that my body responds and I recover. Anything’s possible, but it looks like the bucket list needs to be prioritized and I need to do the proverbial ‘getting my affairs in order.’

 

What do you say to that? I just got the talk.

What goes through your mind when it just ground to an abrupt halt? The averted glances, the sympathetic looks on the faces, the sorrowful pats on the back, the apologies for…what? Doing your job?

At this point in time, I’m pretty numb. Suffice it to say, I’ve shed a few tears today and am still due my requisite meltdowns. I don’t know what I need or want for that matter. I have made my wishes pretty clear to my medical team and that if it’s medically impossible to move forward, I want to return to Salt Lake City and perhaps even take my dream trip to Hawaii before all is said and done. I have over 100,000 Sky Miles that need to be used, to be sure and while I won’t be competing in the Ironman while there, one last walk on a warm, sandy beach just feels like the right thing to do. No one wants to breathe their last in the sterility of a hospital room if there’s a choice, right?

I had been spending a lot of time daydreaming about that Craftsman-era home with the wraparound porch sporting a couple of Adirondack chairs, white picket fence and the impossibly lush Kentucky bluegrass and a modest flower and maybe even a vegetable garden…in the perfect up-and-coming gentrified neighborhood, of course! I envisioned designing and building out my workspace where I’d craft articles, word-smythe (that's my trademark!) the book I said I would all my life, and hand-made calligraphic renderings. There was the proverbial man-cave with the big screen TV and surround sound of course, but mostly it was being surrounded by the people who have made life worth living, sharing raucous memories around the table – great wine and cheese with family and friends!

But you know what? At the end of the day, it’s a life well-lived. A life with no regrets (or few anyway). My body may be failing, but my spirit will not, cannot. It seems to me that if anything this time of year, we hear of these epic stories of the spirit enduring where circumstances would make success impossible. Rather than feel sorry or pity, you can honor me by overcoming your own expectations for yourself and soaring above circumstance, by smiling in the face of whatever adversity you’re working through, and laughing a lot.

I can’t say what would honestly be most helpful from people right now. Suffice it to say, I’m still mentally processing this news; and like I say, things could change on a dime. It wouldn’t be the first time it happened. So, what I can say is this: keep praying if you’re so inclined. Don’t be offended or put off if I don’t respond to Facebook chat, emails, text messages, or phone calls right away. This is obviously an emotionally charged time. I’ve also got a lot of practical things I need to square away.  Finally, and perhaps it goes without saying, please avoid sympathy. I’m still alive.

Here’s a little information that may help and prevent awkward situations (if not with me, others):

While there’s time, let’s do a whole lotta laughing together, shall we? While there’s time, let’s share the best of memories and meals! While there’s time, let’s just be together and hold hands cherishing the warmth of human companionship and love! While there’s time, let’s focus on living.

Stay strong, be well, and much love to you all.

Today’s music is from Lady Gaga – The Edge of Glory

 

There ain't no reason you and me should be alone
Tonight, yeah baby
Tonight, yeah baby
I got a reason that you're who should take me home tonight

I need a man that thinks it's right when it's so wrong
Tonight, yeah baby
Tonight, yeah baby
Right on the limits where we know we both belong tonight

It's hard to feel the rush
To push the dangerous
I'm gonna run right to, to the edge with you
Where we can both fall over in love

I'm on the edge of glory
And I'm hanging on a moment of truth
Out on the edge of glory
And I'm hanging on a moment with you
I'm on the edge
The edge
The edge
The edge
The edge
The edge
The edge
I'm on the edge of glory
And I'm hanging on a moment with you
I'm on the edge with you

Another shot before we kiss the other side
Tonight, yeah baby
Tonight, yeah baby
I'm on the edge of something final we call life tonight
Alright, alright

Put on your shades 'cause I'll be dancing in the flames
Tonight, yeah baby
Tonight, yeah baby
It isn't hell if everybody knows my name tonight
Alright, alright

It's hard to feel the rush
To push the dangerous
I'm gonna run right to, to the edge with you
Where we can both fall over in love

I'm on the edge of glory
And I'm hanging on a moment of truth
Out on the edge of glory
And I'm hanging on a moment with you
I'm on the edge
The edge
The edge
The edge
The edge
The edge
The edge
I'm on the edge of glory
And I'm hanging on a moment with you
I'm on the edge with you

I'm on the edge with you

I'm on the edge with you

I'm on the edge of glory
And I'm hanging on a moment of truth
Out on the edge of glory
And I'm hanging on a moment with you
I'm on the edge
The edge
The edge
The edge
The edge
The edge
The edge
I'm on the edge of glory
And I'm hanging on a moment with you
I'm on the edge with you

The Tyranny of the Urgent

Yesterday was a wonderful day.  I got to come home from the hospital nearly two weeks earlier than I was initially told to expect and although I had to work through a little unnecessary drama in getting a new phone number, I had one of my favorite comfort meals of chicken pot pie and smashed taters and then a quiet night *at home*.  I put in a DVD and didn’t get even ten minutes into it before I was sleepy, so I retired about 8:00 and didn’t wake up until my usual 5:30.  I don’t think I’ve had that much uninterrupted sleep in months.  I typically sleep about 5 hours a night and that works for me, but it’s clear I really needed a lot more yesterday…but I feel good (sing it, James Brown!).

Need is the word in that last thought that stands out to me.  We all are battling what Alan Lakein called, The Tyranny of the Urgent, forever giving in to the things that scream at us while ignoring the important. Sometimes, you have to give in to the urgent, but I submit to you that the important is something that trumps the urgent every time and I’ll play my own cancer card here to make the point that you don’t want to wait until you’re in a position where you’re faced with the important to see that the urgent stuff is just chaff and often meaningless bull-pucky. My sister put it rather simply that this time in my life, as disagreeable as it is to me, was meant for me to get off the treadmill for a while. It’s an apt picture, because a treadmill just uses up your energy while getting you nowhere…and that is what the “urgent” does quite literally.

I’d like you to indulge me for two minutes in a quick exercise because it will highlight what’s really important to you and I hope give you an insight into yourself.  More importantly though, I hope it spurs you to action to do something really important without the benefit of toxic chemicals and people in starched white coats smiling at you! There are actually three facets of this exercise, but because I want to cut to the chase, here it is: If you knew that six months from today you would be struck dead, how would you live until then.  Assume all the final arrangements are made and that there are no logistics to be resolved. Take two minutes and brainstorm. Write everything that comes to mind, no matter how frivolous.  At the end of the two minutes, take a look at what you’ve written and you’ll see the things that are the most important to you.  You can clarify things a bit now that you’re not in brainstorm mode, but the essence of what is important shines through. Whether it’s reconciling with friends whom you’ve fallen away from, traveling to a certain spot because it’s always been a dream, completing a project, or whatever, you’ll see the really important things on that list.

So, why wait for a death sentence to do what’s in your heart?

Write out that goal and in the next six months, go DO it. Life is not meant to be existential, it is meant to be lived…and the only thing for certain is the one we have now. Pithy? Cliché? Maybe, but you know it’s true.

I know what’s in my next six months and it still involves a lot of medical stuff, but past that, I can tell you I have a lot of things I want to do and I have a little bucket list of sorts. These things have been on my mind a lot, but even more so now that life has been so defined by blood chemistry.  Here are a few of the things I want to do:

-          In 2014, I want to ride a ‘century’ (100-mile bicycle ride) for the Leukemia-Lymphoma Society; by 2015, I want to be in good enough shape to do another AIDS LifeCycle (545-mile ride from San Francisco to Los Angeles with my Team OC family.

-          I want to climb Mount Kilimanjaro

-          I want to set food on Antarctica and watch the orcas up close

-          I want to tour through Scandinavia

-          I want to lean Spanish and regain my fluency in French…maybe a third language in there by 2020.

There are a lot of things I want to see in my children, grandchildren, and now that I’m back in Utah, my nieces and nephews as well, but some of those things are, of course, hopes. Those are the things we live for vicariously and have less of an impact on, but we can still be there, right? I have great hopes for them all and my heart swells with pride as I see them come into the people they are meant to be. As my children have come into adulthood, I’ve had the opportunity to spend some really good one-on-one time with one of my daughters, both socially and during my first round of chemo where we got to be adults together and learn more about the person rather than the roles we play in each other’s lives. My oldest son is coming out during the transplant process and will be caring for me. He’ll see the best and worst in me and in the process, we’ll get the opportunity to know each other as adults as well. I told him, tongue in-cheek, that at least we won’t be getting drunk and fighting with each other to do it like they do in so many movies! It’ll be a really difficult time for both of us, but in the end, we’ll have the kind of relationship that few fathers and sons have. I’ve watched my oldest nephew morph from an awkward kid on the soccer field into a brilliant aspiring student who is on the verge of a promising career in microbiology. Who knows? He could be the guy who finds the cure to what I’ve got…and his sister is on his coattails. There’s so much promise in the important. And while it perhaps goes without saying that nothing of any importance is ever easy in attaining – especially when the urgent screams in our faces and clouds our vision – it’s all that really matters.

My music video this morning was something I chanced across on Facebook this morning.  The song comes from a guy named Zach Sobiech, who is battling osteosarcoma – a bone cancer – and unfortunately not doing well. His message is timeless and joyful and I hope it resonates with you as much as it does with me.

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

A Body at Rest...

“A body at rest tends to remain at rest unless acted upon by an outside force” or so Sir Isaac Newton would have us believe. I’ve found that a hospital bed will have pretty much the same effect on a body – my body in this case – as well.  The doctors were pretty insistent that I get out of bed and take my meals in the chair adjacent to the bed. There are a lot of good reasons for that including the likelihood that I could develop pneumonia or blood clots by staying in bed for an extended amount of time. I found that getting out of bed, even for a short amount of time when I was feeling my worst, was a real chore mentally as well as physically. There were a few days it just felt too damned hard to do anything. The power of gravity and that first law of motion was something I had to will myself to overcome, even if that trip to the chair just a few feet away was the goal. It didn’t matter if I slept in that chair, I had to move.

I find that the stakes may have gotten a little bigger now that I’m home for a few days, but that feeling of lethargy is knocking at my door under the guise of recuperation. Physically, I am taking things one step at a time, but mentally, there’s the temptation to just do nothing. If you’ve picked up anything from my writing to-date, you’ll know that I have a craving to keep mentally active and engaged, so this is a real battle. To keep myself accountable, I’m doing what I can to contribute at work and even stopped by to get some writing work that I can do remotely.  The yellow surgical mask combined with my cap gave me a suspicious appearance for just a moment until the few people who were still in the office when I stopped by recognized me. It was nice to see the people that I work with and to keep the mind working.

Having had one of my daughters here this past week or so to help out was really nice as well. She knew the right distance to keep to help when I needed it and to allow me privacy when I needed it.  She was the right person for the right time. We all should be so fortunate to have such people in our lives. Thank you, Dassi! I found out yesterday that my oldest son will be able to come out and help while I’m undergoing the bone marrow transplant in Seattle. More than the help, I’m looking forward to cementing our relationship as adults. Most of my life, I’ve been traveling or living apart from family and if there’s one thing that this diagnosis has given me is some one-on-one time with everyone.

I remember doing a little exercise in goal-setting that had a question: if you knew today that you would die in six months, how would you spend your final time on this earth (assuming all final arrangements had been taken care of)? The point, of course, was to get you to think about the truly important things in your life and then do them. In a real sense, a leukemia diagnosis has forced me and those around me to refocus on some things.  Life comes to a stop and you don’t have any choice but to pay attention. It is the ultimate outside force to get you from inaction. This is yet another one of those cautionary tales of sorts to give you the opportunity for a little introspection without the benefit of a doctor reading an unpleasant pathology report to you.

Just like it’s far easier to look for a job when you have one, it’s far easier to be introspective when you have options in front of you than when you’re staring at the ceiling of a hospital room. So, take it for what it’s worth. Take some time and find what it is in your life that will get you moving in the direction you want to be going rather than remaining in the rut you’ve carefully worn for yourself.

I monitor my blood pressure daily and now I’m adding temperature and weight to the mix to make sure I’m not treading into territory that would have me rushing to the ER. I did go back up to the VA for a routine blood test this morning and thankfully, the numbers are still trending in the right direction. I’ll be back on Monday for more chemo.  It may either be an outpatient spinal variety (insert cringe here) and it may also be a shorter four-day stay for some “consolidation chemo” to keep things in check until my donor has been identified and I head to the great Northwest for the next chapter in this adventure.

Thanks again to you all for your continued support and close air support. We’re winning this war! You are the “outside force.”

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