Alternative Medicine

I've had quite a number of well-meaning people suggest “alternative” methods for treating my cancer. Anything from herbal, homeopathic, and naturopathic remedies to non-FDA-approved medicines from other countries that come in a conveniently nondescript envelope, not to mention things like infomercials or flashy web sites or accu-puncture and energy healing have been sent to me. As much as I wish that some of these less painful and invasive methods were effectual, I have never met or heard of any success stories that would sway me to change my treatment regimen. I’m no big fan of pain and discomfort, but I know people survive the treatment and within reason, return to their lives as they knew it before, if not completely.

Rather than going on a rant, I feel it critically important to anyone considering treating their cancer with anything less than an established, proven standard of care look at the results because quite literally, your life is at stake. For a long time, cancer has been a somewhat academic, almost remote topic thing to me, but over the past couple of weeks, less so as people I know have lost their battle and another group receiving their diagnosis. So, I’ll co-opt a rant by a friend of mine who has walked a parallel treatment path as mine. I’m editing it a bit more to my experience and writing style, but I agree with his content. I’m also adding my dos centavos’ worth.

First, a couple of disclaimers:

1)      I loathe pharmaceutical commercials.  OK, full disclosures, I hate 99% of commercials, but especially those put on by big pharma. My take is that I shouldn’t be lobbying my doctor for what I think the best medication is for me. I will make sure I am fully informed on what it is that’s going into my body and understand the side effects beforehand. I am ultimately in charge of my treatment, but we work together, recognizing the doc is the guy with the training, not me.  Ironically, I only watch the commercials on the Super Bowl, but bypass the game. Go figure! Off topic…

2)      I feel strongly that no one should lose their standard of living because they get sick, especially through no fault of their own. Even for people who have health insurance, cancer has the potential to financially cripple a family for years if not forever. I hate the thought of someone losing their home because of medical bills, politics be damned.

3)      I have been treated through the Department of Veterans’ Affairs. My standard of care through the VA has been nothing short of world class. My treatment has been through entirely “Western” or modern methods and protocols.

4)      I do utilize some alternatives or supplements, primarily for comfort (e.g. essential oils, probiotics, over-the-counter multi-vitamins, etc.) as my medical team has specifically allowed so as not to interfere with their regimen. I am not anti-alternative as there is a time and place for these methods.

5)      I do my best to eat healthy and under normal circumstances, I exercise several times a week. I rarely use sweeteners or salt and currently, my exercise regimen is under the supervision of my medical team. When I’m not in treatment, I’m in the gym five times a week and anyone who knows me at all frequently sees me on two wheels, on the black diamond slopes, or in a pair of hiking boots in the Wasatch and Uinta Mountains. I’m an active guy and I do credit my active lifestyle for how quickly my body has responded to treatment.

I was diagnosed with Acute Myeloid Leukemia on February 21 following a series of blood tests and a bone marrow biopsy which showed 50% blast cells in my marrow. I was told that without treatment, I had about 90 days to live. That’s a sobering pronouncement no matter how you slice it. The hematologist/oncologist (hem/onc) insisted on admitting me right away as the diagnosis indicated a bona fide medical emergency. That night, I began a battery of tests that confirmed the cytometry from the biopsy and aggressive chemotherapy began a few days later.

Despite how you or I feel about big pharma, the manufacturers of the toxic chemical goodness quite literally saved my life. Yes, the prices of these powerful drugs is out of the ball park, but there’s no getting around the reason companies are in business: to make money. Health care is, by nature, humanitarian and it often ventures into the philanthropic, but at the end of the day, pharmaceutical companies have to make money to keep pumping out the drugs that keep us smiling...or alive. The kind of safety, sterile conditions, and extensive research required to develop, test, and implement the kinds of specialized drugs suitable for use in the health care market, let alone those that target specific cancers is exhaustive. There are processes in place to ensure that when the nurse hooks that IV to my arm, it’s not going to go in and kill me outright. And because these chemicals are so strong, medications to offset side effects make the treatment more bearable. All of this is because of big pharma and as much as I don’t like their advertising, I’m profoundly grateful for the end product. I’m alive to tell the tale and while I did hurl my fair share into those little green tubs, you can be sure nurse's littler helper, Zofran, made it far less often!

Admittedly, there are shortcomings in the system and where money is exchanged, corruption, collusion, and other problems crop up. But because hospitals and pharmaceutical companies make their report results public, they are closely scrutinized and we learn and make the right improvements.
 
The results of these improvements?
 
People are winning the battle against leukemia and other blood cancers whereas just a few years back, I might have been given an optimal couple of years added to my life with some rudimentary chemo. Diagnosis to death figures in the 1960s was even more dire with aggressive leukemia killing in as little as six weeks! Even as few as five or six years ago, bone marrow transplants were unsuccessful in 30% of recipients.  Advancements in treatment protocols, which includes improved antifungals, antibiotics, and antiviral medications has brought treatment related mortality rates to as little as 5%!

Think about that for a minute.

With success rates like that, attacking big pharma is not the answer. Very clearly, we’re winning the war on blood cancers and we’re now finding that bone marrow transplants are being used in treating HIV/AIDS with some promising results. No doubt other strains of cancer are benefitting from advancements in pharmaceutical research and development, but from my standpoint, I see people living life after cancer…and that, dear ones, is encouraging and exciting.

And that's especially so to me. I get a second lease on life.

OK, we know that because of FDA-requirements, the protocols and drugs used in treating cancer are making a difference. What can we say about alternative or natural medicine? The argument goes that much of what is in the drugs we take is essentially synthesized plants, right? My friend Paul (incidentally my daughter’s father in-law) researched a number of alternative methods and natural therapies recommended to him, again by well-meaning people and his findings in a nutshell?

Nada.

He was unable to find anything verifiable. My research has turned up a lot of information, but no verifiable results either. More often than not, the so-called research is a pitch to sell vitamins that could be purchased over the counter or some supplement offering a panacea for those who are looking for some sort of second opinion. Often, the enzymes being hocked are no more efficacious than existing over the counter medications, yet charging substantially more. Some sites will empirically insist that there are proven natural methods, but not provide that evidence. Others like Gerson Therapy in San Diego have testimonials, but fall short in scientific method.

 

Everyone else? Nice claims. Wishful thinking. No evidence.

 

People make excuses. "No one will study these herbs because they can't make money on them." That is just not true. It's hard to find a natural food claim that hasn't been studied. From my own situation, I am strongly convinced that good health is critically important in the role of healing not to mention prevention. We could greatly reduce cancer, heart disease, diabetes, and many other diseases by eating healthier and exercising regularly and it’s patently ridiculous to claim that doctors don't know and don't promote healthy eating and exercise. Without exception, every visit I’ve had to my doctor before my diagnosis and since, the role of nutrition and exercise have been emphasized.

 

Miracle health, from drinking açai juice, doing Pilates, or taking colloidal silver, is a fantasy. Colloidal silver, by the way, can permanently turn your skin gray if you drink too much of it. Oh, yeah, the medical establishment has studied colloidal silver, too.

People with no evidence to back up their claims, and who have no intention of keeping track of the success of their claims, fire salvos at a medical establishment are no better than the snake oil salesmen of the 19th century. Sure, there are still problems in our health care industry, but it is responsible for almost doubling our life spans over the past century.

That said, the responsibility for that quality of life is still up to us. Eat right, exercise, take care of your body, certainly. Use natural medicine, herbs, and diet, but don’t throw your doctor out of the equation. There are limits to natural methods…and cancer is not one to monkey around with.

Music for today from Jordin Sparks – ‘This is My Now”

 

There was a time I packed my dreams away
Living in a shell, hiding from mysellf

There was a time when I was so afraid
I thought I'd reached the end, baby that was then
But I am made of more than my yesterdays

This is my now and I am breathing in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now

I had to decide, was I gonna to play it safe?
Or look somewhere deep inside, try to turn the tide
And find the strength to take that step of faith

This is my now and I am breathing in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now

But I have a courage like never before, yeah
I've settled for less, but I'm ready for more
Ready for more!

This is my now and I am breathing in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now!

I'm living in the moment
As I look around I can't believe the love I see
My fear's behind me, gone are the shadows and doubt
That was then, this is my now, this is my now

Thanks to Paul Pavao – his original posting can be found here. I refer to his site on occasion as he is about a year past where I am in post-transplant AML treatment and my blog tends to be more of a story-telling where he incorporates more clinical information that I would. I’ve endeavored to keep the content because I agree with it, but both my focus and writing style are a bit different.

 

Not Just An Academic Exercise

There are only so many ways to say, “Cancer Sucks,” but it doesn’t change the facts about the illness and it doesn’t change how I got mine and it doesn't change who else will find themselves dealing with all the less-than-fun aspects of “The Emperor of All Maladies.” With some exceptions, it just seems so random. Having been on the cancer battle lines most of the year, there’s just no getting around it and it seems like everywhere I turn, people I know are battling with me not simply as someone who is encouraging me in my own fight, but as someone who now has entered the fray with their own cancer. It's kinda like all of a sudden noticing the model care you just bought when before they were all invisible.

I gotta say though for me, it’s a truly helpless feeling to witness someone’s processing that they have cancer, but all I can do is be candid in offering what I have gone through and be a source of encouragement, hope, and empathy to others who are now in the fight…and that’s provided I’ve been invited to be part of that discussion.

 

The aspect of cancer I haven’t been able to move past is the obvious – cancer kills. Academically, in my mind, on paper, I get it. Naturally, that’s one of the first places I went when I made the connection that leukemia is a blood cancer. What were the statistics that I would survive? Wasn’t it enough that the hem/onc doctor in front of me pronounced a death sentence on me of 90 days? I just couldn’t wrap my head around it all. Shoot, I didn’t even know the questions to ask. My prognosis was pretty positive with a bone marrow transplant, but even with that, I almost died twice in the space of a week. And yes, I still haven’t wrapped my head around that either. I just haven’t quite come to terms with it except that’s what people have told me. It has been a purely academic exercise, yet it really happened.

Then there are those who really, no-kidding, don’t make it.

Twice this week, I’m facing that situation and I’m truly at a loss for words, but I can’t avoid it. You see, walking into the MTU, it’s not unlike being a big family.  The caregivers and the patients alike are all part of something bigger than ourselves and we have a good idea of how everyone is doing. We can’t help but get emotionally attached to each other. People knew more about my situation than I did when I emerged from the MICU and eventually into outpatient status. Many of us stay at the same extended stay hotel and we swap stories and ask after one another. Earlier this week, I met up with a caregiver outside the laundry room who was commenting how good I looked. I asked after her husband and she was rather candid in that he wasn’t doing so well as he was out of remission and rather disappointed because of where that put him in the transplant process. Somewhere inside of him, he knew there was more to the picture and even said that he might die. She, rather matter-of-factly acknowledged as much that it was a possibility, not knowing that the next day, she would be getting the news that he, in fact, was no longer a good candidate for a transplant, which essentially translated into him being now a terminal patient with just a couple of months left on this blue ball. I was just outside the MTU moments after she received the news.

What do you say?

I sure don’t know…except to go with my gut and simply be honest. It’s a tough thing to face death, but I have to say that now having done exactly that, it gives me a sense of peace, but clearly others aren't where I am. I can't impart how I'm feeling to someone else and things can change, too. Shocking, end-of-life news is something everyone processes differently. I’ve said it many times and I’ll say it again, I have a lot left to do on this earth before I meet my demise and I honestly hope I get to do it all. But just like the caregiver I refer to above, the possibility that I may die before then is a possibility.

But I don’t know. I really don’t, so I asked a couple of nurses on the MTU how they've handled the situation over their tenures. Both have been working in transplant for years and it wasn’t all that long ago that the kinds of conditions that call for bone marrow transplants weren’t as successful as they are today. Advancements in pharmaceuticals have saved countless lives, but the nurses had to be the one to get families together to say their good-byes many times as the doctors either couldn't or wouldn't. In their experience, it again came down to being honest with the patient. They said that more often than not that the patient already knew things were pretty bad before it came to the point of ‘the talk’ and getting the family to a point of releasing their loved one with their blessing to move on.

Death and dying aren’t topics that people enjoy talking about, but evading them can be insensitive at best. Having come close to dying, myself, I can appreciate how important it is to make final arrangements so that those who are left grieving don’t have to second guess me, so yeah, I think it’s vitally important that people know what I think both in the legal and personal constructs. It’s not a morbid topic, unless of course, I were to dwell on the topic. With the experiences I’ve had this past week with incurable forms of cancer striking people I know as well as a couple of others where others are now starting their dance with the big “C,” I’m scratching my bald chemo-affected head a bit more than usual. Suffice it to say, there just seems to be no element of fair play, but then again, when did anyone say that cancer ever plays fair?

You can imagine that I’m a bit bummed about watching a member of our MTU family head home to live out the remaining few months he has…but at least he has a couple of months left. It’s definitely not a glass-half-full moment, but there is something in that glass. I’m bummed that I’m hearing from people I know are finding they are now fighting cancer like I am. But I’m still filled with gratitude that I’m making it and that there’s hope ahead and that there’s always some modicum of hope for those just finding out they’re now enlisted in a battle they didn’t choose either. I still don’t know what to say to the dying except the honest truth from my own heart because it really isn’t some academic exercise.

It’s very, very real.

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

Music for the day from Craig David – Rise and Fall

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I always said that I was gonna make it,
Now it's plain for everyone to see,
But this game I'm in don't take no prisoners,
Just casualties,

I know that everything is gonna change,
Even the friends I knew before me go,
But this dream is the life I've been searching for,
Started believing that I was the greatest,

My life was never gonna be the same,
Cause with the money came a different status,
That's when things change,
Now I'm too concerned with all the things I own,
Blinded by all the pretty girls I see,
I'm beginning to lose my integrity

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

I never used to be a troublemaker,
Now I don't even wanna please the fans,
No autographs,
No interviews,
No pictures,
And less demands,
Given advice that was clearly wrong,
The type that seems to make me feel so right,
But some things you may find can take over your life,
Burnt all my bridges now I've run out of places,
And there's nowhere left for me to turn,
Been caught in compromising situations,
I should have learnt,
From all those times I didn't walk away,
When I knew that it was best to go,
Is it too late to show you the shape of my heart,

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

Now I know,
I made mistakes,
Think I don't care,
But you don't realize what this means to me,
So let me have,
Just one more chance,
I'm not the man I used to be,
Used to be

Sometimes in life you feel the fight is over,
And it seems as though the writings on the wall,
Superstar you finally made it,
But once your picture becomes tainted,
It's what they call,
The rise and fall

As a post script, here are some thoughts on what to say to someone who is dying. It’s not the end-all, but it’s a good start.

Hi-Res Reflections

 

There are days when I look in the mirror and wonder who that guy is staring back. Between the rockin' insta-hair loss, puffy face thanks to the high-dose of steroids I’ve been prescribed, and the atlas of purple splotches on my stomach from injections, it’s like the person in the mirror is more of what an older, beat-up relative might look like. Nope, it really is me and yeah, I look like hell. No getting around it. But it’s not just the mirror that advertises my bruised frailty of course. I’m working through recovery from a procedure that has mortality statistics and has weakened me pretty substantially.

Adding insult to injury, last week, we pulled up to the unloading zone at the hospital. For me, getting up out of the car isn’t just the quick two-step it used to be, especially as it uses the same muscles as going up stairs. Now, once I’m out of the car, I walk just fine, but deep knee bends and getting up without a little extra bracing aren’t in the cards right now. It takes both hands and I physically move my legs over to the right as I get out of the passenger side of the car.  A much older gentleman watched me do this as he came up from behind the car pushing his walker and said, “Ah, stop acting like an old man.” Why, thank you sir, I’ll take that under advisement. Atrophy’s a bitch!

I’ve been doing my best to do exactly as the doctors have been telling me with respect to physical activity, especially as I’m now in the stage of treatment where we’re monitoring my blood levels very carefully and adjusting medications accordingly. The doctors have told me that the steroids will monkey with my emotions and the best thing I can do is stay physically active, so I have been walking as much as I can. The large city block surrounding the extended stay hotel is about 1.3 miles and I try to get around once before heading off to the hospital to get it out of the way and of course since it’s before the sun comes up, I can avoid any issues with exposure to UV rays. It also gives me a chance to clear my head of the cobwebs that find their way in there. Exercise has always been a good thing for me and even these little morning constitutionals do this here body good.

Being able to do this before heading out requires some planning the night before, but it seems like my best laid plans still aren’t enough. The one-stop antibiotic that we had been administering via IV a couple of times a day at the hotel has a side effect of pushing all of the other blood chemistry down and at some point, we have to change to a different antibiotic cocktail. Talking to my attending physician today, he told me that this isn’t an unusual thing and that I had a longer run than most people get. The one I’m on now requires a hydration regimen before and after, effectively quadrupling the time it takes and it’s not something they’ll give us for the hotel, so if I don’t get a seat in the outpatient treatment room, it means we’ll be at the hospital until about 5:30 instead of the usual 1:30. Still, as long as I’m not sleeping at the hospital, it’s a bonus, even if I’m there every day instead of the Monday-Wednesday-Friday schedule. The medical treatment has been a full-time job regardless.

Rather than drone on about electrolytes and the details of medical fun 101, I want to close out today in honoring the memory of a comrade whom I met at the Salt Lake City VA during my initial stay there.  The social worker had arranged for me to talk with two people who had been through the transplant process so I’d have a good idea what I was in for, long-term. It turns out that one of them is actually here with me in Seattle this week for some follow-up work.  Dennis has been cancer free for a number of years.  We had a fun dinner last night at a local Irish pub and as usual, his humor has been something that kept me smiling. His t-shirts are far better than mine, too! So, between the two of us, we keep the nurses happy too. I found out through Dennis that the other gentleman, a sober-minded Air Force vet named Theron Willardsen, was not so fortunate and as it turns out, passed away just a few days from his battle with ALL after I last chatted him up at the Salt Lake City VA. I remember being happy to see him and asked how he'd been.  His response was one that challenged my best people skills.  The last thing he told me was, “In about 40 minutes, I’ll be able to tell you whether I need to get my affairs in order or I’m fine.” I missed circling back with him as I was getting ready to leave town to head up to Seattle for my own transplant. A few days later, I was on my way northward for a shot at new life and Theron’s own life came to a rapid close.

If nothing else, it drove the point home that our mutual foe doesn’t mess around and that this battle is not something we can take for granted, ever. I can poke it in the eye, I can dance around its name if I want, but cancer is not something we can be glib about. It’s going to bring out the best and worst in a person. It disfigures, it maims, and yes, it kills. And as much as I don’t like it, I have to be prepared for the worst both in hearing it from others and in myself. I’ve had to listen to others tell me that they may not make it and I can’t tell you how tough that is. The silver lining in this is that now, after nearly dying myself twice in the space of a week, my very presence in front of these people offers hope that there may indeed be a prayer for the dying.

 

As for me, it’s a responsibility of sorts to, in the words of Shakespeare, “to thine own self be true.” It’s also important to be candid to my fellow cancer survivors. I can’t offer false hope, but neither can I not be who I am. I’m naturally a glass-half-full kinda guy, but even if the glass isn’t half full, there’s always something in the glass and that’s what I have to work with. On the converse, I’m really grateful that others have been entirely up front with me about what to expect, from doctors to acquaintances. Optimism and encouragement? Absolutely! However, the last thing any of us still fighting the good fight against cancer need is bravado and sugar-coated platitudes.
 

It took me a while to really wrap my head around the words my first hematologist told me that leukemia would kill me within 90 days if I did nothing. I’d never faced my mortality in real terms even though my chosen career choice quite literally put my life on the line both in training and on the battlefront. I just never thought in those terms. We may not have been at war, but the places I served didn’t care about that – they were. Having stared death down with a glass far than half full, the guy staring back in the mirror is getting mighty real. He still cracks a lot of jokes, sometimes just to keep sane, but more out of the point that life is meant to be lived with great gusto and with laughter…and yes be authentically to be upheld of the scrutiny of high resolution.

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

Music for the day from Justin Timberlake - Mirrors

Aren't you something to admire,
'cause your shine is something like a mirror

And I can't help but notice, you reflect in this heart of mine
If you ever feel alone and the glare makes me hard to find
Just know that I'm always parallel on the other side
'Cause with your hand in my hand and a pocket full of soul
I can tell you there's no place we couldn't go
Just put your hand on the glass, I'm here trying to pull you through
You just gotta be strong

'Cause I don't wanna lose you now

I'm looking right at the other half of me
The vacancy that sat in my heart
Is a space that now you hold
Show me how to fight for now
And I'll tell you, baby, it was easy
Coming back here to you once I figured it out
You were right here all along

It's like you're my mirror
My mirror staring back at me
I couldn't get any bigger
With anyone else beside of me
And now it's clear as this promise
That we're making two reflections into one
'Cause it's like you're my mirror
My mirror staring back at me, staring back at me

Aren't you something, an original,

'Cause it doesn't seem merely assembled

And I can't help but stare 'cause I see truth somewhere in your eyes
Ooh I can't ever change without you, you reflect me, I love that about you
And if I could, I would look at us all the time
'Cause with your hand in my hand and a pocket full of soul
I can tell you there's no place we couldn't go
Just put your hand on the glass, I'm here trying to pull you through
You just gotta be strong

'Cause I don't wanna lose you now
I'm looking right at the other half of me
The vacancy that sat in my heart
Is a space that now you hold
Show me how to fight for now
And I'll tell you, baby, it was easy
Coming back here to you once I figured it out
You were right here all along
It's like you're my mirror
My mirror staring back at me
I couldn't get any bigger
With anyone else beside of me
And now it's clear as this promise
That we're making two reflections into one
'Cause it's like you're my mirror

My mirror staring back at me, staring back at me

Yesterday is history
Tomorrow's a mystery
I can see you looking back at me
Keep your eyes on me
Baby, keep your eyes on me
 
'Cause I don't wanna lose you now
I'm looking right at the other half of me
The vacancy that sat in my heart
Is a space that now you hold
Show me how to fight for now (show me baby)
And I'll tell you, baby, it was easy
Coming back here to you once I figured it out
You were right here all along
It's like you're my mirror
My mirror staring back at me
I couldn't get any bigger
With anyone else beside of me
And now it's clear as this promise
That we're making two reflections into one
'Cause it's like you're my mirror

My mirror staring back at me, staring back at me

You are you are the love of my life (x10)

Now you're the inspiration for this precious song

And I just wanna see your face light up since you put me on
So now I say goodbye to the old me, it's already gone
And I can't wait wait wait wait wait to get you home

Just to let you know, you are

You are you are the love of my life (x8)
Girl you're my reflection, all I see is you
My reflection, in everything I do
You're my reflection and all I see is you
My reflection, in everything I do
You are you are the love of my life

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

Copping an Attitude (the good kind!)

I’ve found in my rambling thoughts that I often come full-circle on a number of similar topics that seem to debut, bounce around my cerebral cortex for a while, register some sort of reaction, and then move on to the great baggage carousel in my mind. I pick up a new designer bag of a topic and deal with it, and at some point when that first one comes back around I take another look at it.  This time around, though, I’ve somehow changed internally; my threshold of pain is higher or perhaps I’m weaker for that matter; or maybe I just see a different side to that rugged North Face duffle where I’m keeping all my emotional baggage.


On the left, this is the t-shirt that turns the heads in the hallway and the doctors make the most comments about...and hey, it does make the statement, doesn't it? (and I won't take it lying down...or maybe I had to on occasion) On the right, I had to hang the "name your poison sign on my door. I saw the sign, ostensibly to go over someone's home pub and knew it was for me!





One of the very first designer bags of topics I picked up that I decided – and then discovered was entirely true – was that my attitude toward putting cancer squarely in the rear view mirror would play a pivotal role in how well and how fast it would actually happen. I read about it, talked about it, shared experiences with other cancer survivors about it and it was unanimous: however else you approach this bad boy, a positive outlook mixed with a dash of humor is crucial. Now, these several months after that decision, I can tell you without a doubt that it has not only made my life possible and my healing move along well, it has made those around me push the process along, doubling my own efforts. It almost sounds cliché to say something like that, but all I can go on is experience and it has made all the difference in the world.

I have a bit of a reputation for my t-shirts, hats, and door signs poking cancer in the eye.  From the medical staff to the support staff (including the guy who empties the trash and cleans the room), everyone knows me by first name and when I came back from the MICU, in addition to the high quality standard of care I would naturally expect, the genuine concern shone through on people’s faces.  You can put on a plastic smile for effect, but you can’t manufacture the real thing.

And even today, I was reminded during my outpatient caretime of just how real the empathy is among all of MTU patients, their caregivers and on the part of the staff. Another patient I met just before starting my own transplant had finished his inpatient phase, and was discharged over the weekend. He’s a bit older than I am and had a bit of a rough go for a few days. His gratitude shone through the incipient tears of being alive, of being on the road to more years of time with his family, and doing the things he loves. It was almost palpable and that lump in my throat was lock-step with his. The conversation in the room became more authentic rather than simply comparing scars with each other, and let’s face it, we all have some good ones. Even though none of them are the kind you can see, they’re very, very real. 

It reminded me of the courage each and every one of us had to submit to a regimen that actually takes some of us out and without a doubt, the treatment is just plain downright unpleasant and painful, yet it saved our lives. The treatment may rival the disease some days, to be sure, but we live to fight another day and it somehow makes it worth all the crap we go through. There have been days, honestly where I’ve struggled with whether I could do this or not and I’m sure I’m not alone in that lack of courage, but like so many other things I’ve endeavored in my life, I've had to simply put one foot in front of the other and hope my body carries me forward. Some may chalk it up to intestinal fortitude or toughness and to be sure, there's an element of that in there, but without people holding my hand and encouraging me, bravado and courage are the least of my worries. It's a tough, long haul...it's where attitude must collide with my lack. And I take the next step.

I have heard rumblings from people that it was touch and go for me at one point and that I had apparently stopped breathing, but again, it’s an academic thing. It’s not something I remember, so the trauma was what happened afterward in being hooked up to a machine that helped me breathe for a few days, unable to communicate without the help of an old-school clipboard and ball point pen. I found out just a few days ago that statistically, I had a scant 2% chance of making it out alive from that procedure, yet somehow I beat that. At the time, it was again, one foot in front of the other, unaware of the odds. But after all is said and done, I think the sentiment that comes to mind is something a brave young girl named Malala Yousufzai said in an interview with The Daily Show’s Jon Stewart I saw the other night.  She told him, “Nothing becomes precious until it is snatched from our hands.” Malala is the 16 year-old nominated for the Nobel for her courageous stand against the Taliban for girls’ education in her native Pakistan…and getting shot in the face for it. Indeed, one more example of if someone can endure a gunshot to the face for a principle, I can certainly be connected to a machine. Even in my worst of times, I’ve found that I am so very fortunate and so very filled with gratitude that I only battle cancer of all things. It’s not like someone’s holding a gun to my head! I’ll heal and the ordeal I’m working through now will fade over time.
 

 

Yeah, there are some tough days ahead to make the good ones even better, but my steps are getting a bit more assertive and assured and even the stairs are becoming less daunting. I harbor no illusion that this is going to be at all easy of course, but I'm making it. My attitude hasn’t changed appreciably except in resolving to make the very most of the days I have left, whether it be 5 years or 50, and yeah, I’m rooting for 50 good years ahead.  I have so much left to do, most of which I haven’t the faintest idea of what I’m supposed to be doing.

But I’m not going to wait for some sort of sign. Life isn’t on hold because of an illness and I won’t be defined by my medical condition.

As one example, I’ve felt strongly for some months in sponsoring a child and it took somebody standing out in front of an art museum with a smile and a clipboard to push me off the bench of my own self-introspection to actually do it. All of my own children are grown and moving into their own adulthood, so I had no excuse really. Another commitment is to write a book out of my experiences in leukemia.  There are a lot of books on cancer and the clinical sides of things, but I just found myself overwhelmed by the medical facts and figures when I just needed something else.  I’m hoping to offer some humor, anecdotes, advice, and a little pokin’ in the eye of the foe of the battle none of us chose. I’m sure more will surface over time, but I’m not putting 8 irons in the fire like I used to. Perhaps a couple to keep things interesting, but I think the good ol’ bad ol’ days of so-called multi-tasking may be a thing of the past.



This is Guillermo. He is 10 years old and lives in Guatemala. After a lot of research into these kinds of charitable organizations, I elected to go with Children International. Yup, I decided to get off the fence and make a difference. Whatever you do to change the world in a positive direction, I thank you!

Let life be enjoyed and lived, not endured. Carpe diem and all that other Latin stuff!

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

Music today from Leeann Rimes – Life Goes On

 

Life goes on
Life goes on

You sucked me in
And played my mind
Just like a toy
You would crank and wind

Baby, I would give till you wore it out
You left me lyin' in a pool of doubt
And you're still thinkin' you're the Daddy Mac
You should've known better but you didn't and I can't go back

Oh, life goes on and it's only gonna make me strong
It's a fact, once you get on board
Say good-bye 'cause you can't go back
Oh, it's a fight, and I really wanna get it right
Where I'm at, is my life before me
And this feelin' that I can't go back

Life goes on
Life goes on
Life goes on

Wish I knew then
What I know now
You held all the cards
And sold me out

Baby shame on you, if you fool me once
Shame on me if you fool me twice
You've been a pretty hard case to crack
I should've known better but I didn't and I can't go back

Oh, life goes on, and it's only gonna make me strong
It's a fact, once you get on board
Say good-bye 'cause you can't go back
Oh, it's a fight and I really wanna get it right
Where I'm at, is my life before me
And this feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah, got a feeling that I can't go back

Life goes on, and it's only gonna make me strong
Life goes on and on and on

Shame on you, if you fool me once
Shame on me if you fool me twice
You've been a pretty hard case to crack
I should've known better but I didn't and I can't go back

Oh, life goes on, and it's only gonna make me strong
It's a fact, once you get on board
Say good-bye cause you can't go back
Oh, it's a fight and I really wanna get it right
Where I'm at, is my life before me
And this feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah
Gotta feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah
Gotta feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah
Gotta feelin' that I can't go back

Na, na, na
Life goes on
Na, na, na
It made me strong
Oh, yeah