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 Battle We Didn't Choose

The things I often end up writing about are spin-offs from thoughts I have while awake in the darkness of the wee hours of the morning, when I have nothing going on around me. Typically, the only things I hear are electronic sounds from the nurse’s station or snippets of conversation as people pass my door. There’s no interruption from someone taking my vital signs, a gaggle of doctors, the phone, or any other mundane detail. It’s just me and my thoughts. The more ‘normal’ times come from conversations with someone or a Facebook post that, for whatever reason, resonates with something I’ve been mulling over – probably in the dark between 3:00 and 5:30 am.

I want to share with you a video that was the impetus for this posting. It’s one of the hardest things I’ve watched, but I felt a kinship with the subject of the video even though I know that every case is different. Mine, by comparison must be a cake walk! The photographs as a subject of art, portray the feelings I have and deal with in a very raw but beautiful way. Photographer Angelo Merendino documents his wife, Jen's battle with breast cancer. The video discusses them, but the web site with the actual images is here. He also has a YouTube channel with a few other videos here.

7:45 a.m.. Lots of waiting. Take a
number. "Now serving number 8...
thank you!"

One of the overriding themes I’ve continued to wrestle with is how it seems that most people don’t want to acknowledge bad things that could potentially befall us. We use euphemisms or abbreviations lest we say the word and it takes root in us and we become afflicted! We refer to cancer as “the big C,” or say the word sotto voce, or perhaps we just say that someone is really sick. Mind you, I don’t really care to talk about unpleasantries any more than the next person, but just like death, this is part of life. Everyone has to deal with a crisis now and then and dancing around the issue doesn’t help the one going through it.



7:50 a.m... "Where again do you want
me to draw blood? Oh, that arm looks
wasted." Uh yeah, Three missed sticks,
a bruise, and a small hematoma. Try
the other arm, please. Honestly, I'm
not a drug addict...it's the chemo. Good
luck, Roxanne!

I’ve had to work through a few pretty difficult things over my 50-year life and dealing with cancer now is without a doubt, the hardest and most traumatic yet. The fallout – notwithstanding my hair! – has been extreme in a number of ways, but it has been easier to face because those people who have been through this and shared their experiences with me haven’t pulled any punches.  They’ve been pretty direct in telling me the truth. And the truth is rarely soft and wrapped in white satin. More often than not, it’s messy and it hurts, and it may be a tough pill to swallow. But, it’s the only medicine that will ultimately restore you.



My poor left arm! the picture didn't pick up the scars quite as
well as you can see them. It's a great conversatin piece though!

Facing the truth, we still have to make the choice of calling that glass either half-full or half-empty. The truth doesn’t change your attitude. Only you can do that and if you’ve read my postings, you know where I stand on that. The truth may make me cringe or cry or feel fear, but attitude can help me stand up, wipe the tears away, and put on a brave face. It can also kill you if you let it. It really is that important.





11:45 a.m. Numbing my spine for
some toxic chemical goodness.
Gives "feel the burn" a new
meaning, huh?

I’ve poked fun at the things I’ve dealt with since the prospect of having leukemia – a blood cancer – reared its ugly head. Humor is how I cope with the ugly truth of what’s happening.  I’ve been open and honest about my feelings of intense gratitude for the people that have and continue to come to my side. I’ve had a lot of laughs in spite of how I’ve felt and put on that best smile whenever I could. What I haven’t said a lot about is the stark, painful side of what cancer is all about.  Yeah, I’ve seen the movies and there’s something to be said about the dramatic license employed by Hollywood to sell tickets because the cool part about this whole thing is that the human spirit will win, even if the body dies. And that always makes for a good story. Seriously, though, no one wants to see real pain. No one wants to walk a mile in these shoes. It’s just too easy to whisper the word than say it out loud and acknowledge it's there.





11: 55 a.m. In nature, yellow is often
a color that tells a predator to find
something else to eat. Well, yellow
is the same color to tell people in a
 hospital that this is also dangerous
- chemo. Nice thought as it goes
directly into my spinal cord! Isn't
that special?!

I get it that it’s awkward and that those of us in the hospital bed don’t care to be reminded that we’re sick, but that elephant in the room isn’t going anywhere. Let’s recognize he’s there and let him move on. So, why talk about this rather dour subject? Well, I should say that first off, I’m absolutely not fishing for sympathy, but I think it’s important to know what this thing called cancer is all about. Again, thanks to Hollywood and maybe a friend of a friend of a friend, we have an idea of things like chemotherapy, radiation, hair loss, and surgery to remove tumors, but what most people don’t hear about is how the diagnosis stops your life in its tracks, the hassles with the insurance company, the prospect of financial ruin, the impact on family systems…and that’s before the patient actually hunkers down and starts dealing with the needles, IVs, and ports; the endless tests and samples required, the pills with names I can’t pronounce, and their side effects which I can pronounce (and the other meds, more of which I generally still can’t pronounce, that counter the side effects). Then there’s the hair loss, which although you know about and expect, is really still traumatic, especially for women; and there’s just the feeling really, really sick or too weak to walk across the room to the bathroom, the lethargy, the diarrhea, the nausea, the painful procedures like biopsies where they drill into your pelvis for a sample of marrow or cut off some flesh, or even drawing blood from the veins that have receded because of the chemo; there’s the weight fluctuations, and the food that otherwise would be delightful suddenly smells like sewage – another delightful side effect of the toxic chemical goodness.

12:05 pm - Mercifully, all done. This
was the last episode of that mini-series,
but there's more fun awaiting! And
seriously, does this chuck pad on my
 back make me look fat?

Again, I don’t want to elicit sympathy from anyone. It’s just what I deal with right now and the brave face often belies what I felt just an hour ago. My mom can tell you how bad it was during my first round of chemo where she had to don a yellow gown before she could come and I was barely able to stay conscious. Not a pretty picture, but it was an honest one. Today, I feel good and am at home. I check in with my family twice a day so they know I’m OK. I monitor my blood pressure, my temperature and weight and have a miniature pharmacy in my bathroom full of lovely antibiotics, antivirals, antacids, and some basic Tylenol. Tomorrow could be different.

My hope in all this is not that there's guilt imparted or that you treat me or any other person dealing with an illness differently, except rather with honesty and authenticity. What we all crave is what you take for granted, what we took for granted before we started our odyssey into our illness. We just need you to be you and sometimes that just means being there and holding our hand. And for the generous gift of your human touch, for staying with us over the long haul, we thank you.



This picture, very simply and eloquently captures the basic need of any of us. For for someone who is fighting a long-term illness, it's like an antibiotic. Photo credit - Angelo Merendino - http://mywifesfightwithbreastcancer.com/



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