Give a Little Bit

I’m finding myself really weepy lately.  It doesn’t take much to get me teary eyed these days. I can say pretty confidently that it’s not from being sad or depressed, but more often than not , it's just being really appreciative, grateful, or that I perhaps I'm just feeling things I wouldn’t under ‘normal’ circumstances. In picking out a song for these little missives, I can usually tell if it’s the right one as I get that familiar choked up feeling and so begins my inspiration for the day, but not always. My inspiration, today, is not so much the song, although it fits. It’s the video that accompanied it. I saw it posted to Facebook a few months ago and it got me then as much as it does now. It’s the message that was paired with the song that hit home and it’s one of the few times an advertisement got it right.

The song itself is Supertramp’s Give a Little Bit (the link at the left is to a video for the whole song). The video is Coke’s Super Bowl ad and it captures the best in us in a very short time … as captured by security cameras.

The thing that brought it to mind today was a conversation I had with my two sons yesterday.  My oldest son had a birthday a couple of weeks ago.  He turned 23 and is coming of age in a way that brought back a lot of memories for me as we had a really good conversation over the phone on the day after he celebrated his birthday. 

This is the day I brought my son home.

He has arranged to come out to Seattle to be my official caregiver while I’m undergoing my bone marrow transplant.  He’ll be seeing the best and worst of me and we’ll be having more of those good conversations, I’m sure.  We’ll also be making plans to do some wild and crazy things before he settles down (do any of us really ever settle down? Well, some of don't!) He’s not just giving a little bit; he’s really giving a lot to be with me during this time. That’s who he has always been. He is the quintessential strong and silent type, although when he gets talking, it’s debatable...and he's generous to a fault!


He's now 6'-3" and running (half marathon
here). You'd never know he has worked
through open heart surgery ... twice!

One of the things he talked about was spending time with his younger brother who is finishing up his first year of college. Both boys…uh…young men are asking a lot of questions and we’ve found a way for the two to be together: they can both come to Seattle. Yesterday afternoon, we were all able to get on the phone at the same time and talk through the details and it looks like it’s a go. So, it’ll be all the boys together this summer during my treatment and convalescence and this way, everything won't fall on to my oldest son even though there will be others coming over the course of the summer. We’ll all be giving a little bit to each other as we’re all navigating the next stage of our lives.  We all need what each other has and it proves that no matter how big, old, or tall the cubs get, the papa bear will always need to do papa bear things … and I’m really looking forward to having my cubs around … although admittedly the circumstances could be better!



My two sons last summer.

I had breakfast with my dad this morning, the first time I have eaten out since my adventure in toxic chemical goodness began nearly two months ago. In his way, he was giving his ‘little bit’ to me and I commented to him again how so many people had given their little bit to make this ordeal less intense. If little things bring me to tears of gratitude and joy, you can imagine how often the waterworks have been active these past couple of months with so many doing their own little bit,.

When I think about it, this really isn’t a stop-and-smell-the-roses sort of appreciation. The roses have always been there and I really am one to take in those kinds of things, but rather this is a stop-and-appreciate-the-thorns thing. And you can’t overlook the petals that have fallen to the ground or the earth itself and the bees and … and so on. It’s an appreciation of all the little bits.

Another of those little bits happened during my blood transfusion on Wednesday. I noticed that when the nurse that attended me arrived, he was wearing the same cycling jacket as I do, so we talked bicycles most of the day and he told me where I could ride as well as recommending a bike shop he trusted. He's more of a triathlete than a cyclist, but since he qualified for the Boston marathon, he's clearly an awesome athlete and he may just be running the big marathon on Monday. If I don’t see him when I go in for my last stab-me-in-the-back chemo, I’ll know why. A few of the medical staff are veterans, but not many.  He happened to be one, so we could swap stories about our time on active duty as well. On the down side, he was unable to find a vein that hadn’t been reduced to nothing as a result of my chemo. He and one other nurse turned me into a voodoo doll, so my arms are looking getting track marks and bruised as a result (yeah! fun!). I can be appreciative for the folks in the lab who seem to find the elusive place to draw blood and do it amazingly without hurting me.  I can’t figure out how that needle goes in and I don’t feel pain, but the lab folks do it. Whoda thunk the prick of a needle would be something to be grateful for? Believe it!

One last little bit: my new friend with the fun t-shirts was an inpatient this week while I was getting my transfusion and we got to swap more stories and chat since I was the inpatient last time and he stopped by my room. I didn’t recognize him at first as he was wearing the hospital jammies instead of his jeans with the oversized belt buckle and the obnoxious t-shirt that makes you chuckle. But once he spoke, I knew it was him and we were already on the way to keeping each other smiling. 

I share a few of the mundane little things with you from my week because every little thing you do makes a difference to someone else – for good or ill. An encouraging word, a hug, a phone call, a joke, a smile to a stranger, doing your job well, whatever – all of these things make a difference even if you don’t see the end result. Can I encourage you to be that person for the one who needs a smile? I can tell you first-hand that it means the world...and if they need it like I have, it just may make them a little teary-eyed with joy.

Be well, stay strong, and much love to you all…and make someone else smile today! J

Bravery | Bravado

If you’ve read any of my previous postings, you’ve no doubt picked up that my outlook is pretty positive.  I try not to sugar coat things. After all, especially since becoming an unwilling member of the leukemia club, I have had some pretty challenging days, but in spite of them, I still tend to be one of those infernal glass-half-full kinda guys.  It’s just how I’m wired. It’s how I roll, even off a bicycle!

As an unapologetic optimist, there are a lot of things I won’t do:

• I won’t hide the fact that I have leukemia. It’s a type of cancer and while I won’t intentionally play on people’s sympathy because of this particularly bad hand I’ve been dealt, neither will I not say the word, “cancer” as if it doesn’t exist. I will face this thing head on and deal with it.
• I won’t pretend to be happy when I’m not. There are days I just feel lousy, sick, tired (and yes, sick and tired of this whole experience), frustrated, impatient, and weepy for no reason. I think after all these years, I understand PMS! I will do my best to stay optimistic, friendly, and keep the puns, jokes, and an edge of attitude coming.
• I won’t be evasive because a procedure is uncomfortable or downright painful; nor will I not disclose a symptom that it could land me in the hospital instead of my own comfy bed. I’m positively paranoid about my health now and I’d rather have a contest of TMI with the doctor than end up in the ER for being stoopid!
• I won’t forget to show genuine gratitude to the people who have been there from the moment of my diagnosis to tucking me in with a warm blanket during a particularly emotional meltdown, to the ones that bring me my meals or empty my trash, to the one that helps me in through my front door when this is all done.

This roller coaster of a journey is damned hard, it’s scary, and it’s not something that can be done alone.

The common thread in all this is simply one of being honest – honest with the medical staff, honest with those who are taking care of me (especially when I cannot care for myself), and of course, honest with myself. Being honest at this level is more than not rounding up on your 1040 or selectively telling the truth where it might be a bit uncomfortable, nor is it something that is that annoying kind that demands driving 30 minutes back to the store to return the pack of gum your kid innocently walked out with. This is something that is authentic and requires something most people don’t understand in today’s culture. It requires bravery.

I don’t want to confuse bravery with bravado.  Bravado is something we all see and find rather amusing on the surface, but really at its heart, distasteful. It’s just a show and it’s loud and abrasive. It’s the trash talk before the fight. It’s the self-righteous sound bite from an uninformed citizen who clearly isn’t thinking and is just repeating someone else’s drivel. Bravado is essentially another form of dishonesty. Bravery, on the other hand is, more often than not, subtle and quiet, yet incredibly potent and has the potential to make big changes. It’s like the picture that takes your breath away, worth several thousand words! When you see bravery, you know it even if you didn’t think it was ever there. It’s the kind of thing martyrs don’t realize they have until they are looking into the whites of death’s eyes.

And bravery is something I feel I sorely need as I prepare for this bone marrow transplant. I’ve spoken to a lot of people about this and I’m going in with eyes wide open, so it’s not so much the fear of the unknown as much as it’s now getting very, very real.

I received the official approval letter from the VA in Seattle along with a phone call from the transplant coordinator there. The search for the donor is underway and the next phase of my treatment could happen in a few weeks or a few months. Because of my good physical condition, I will be getting a full transplant or what the very intimidating literature calls a “matched, unrelated myeloblative transplant.” The web site is very thorough as is the book that I received in the mail in explaining things.  It’s actually a bit overwhelming. Up to this point, I’ve been told things piece-meal as new developments in my condition arise. Thankfully, my face-to-face meetings with people to discuss the transplant procedure have been far less daunting and just like the VA here in Salt Lake City, the only thing I’ve heard about the people in Seattle is the incredible level of expertise and once again their level of compassion. I don’t think you could ask for a better combination when it comes to the people who will work their medical magic and vanquish the leukemia from my mortal shell!

That said, it’s still a pretty damned scary prospect and while I’m not necessarily looking at the whites of death’s eyes, the abbreviation TRM (treatment-related mortality) has become part of my reading and of course, that drives the point home, doesn’t it. I’ve said before that I have no plans on checking out and the odds really are against me losing this battle, but repeating what I said above in this post, I am facing this and dealing with it head-on…even if my hands are shaking and my voice is quavering. Others have defeated the cancer monster and I’m going to be one of them. I just have to follow in their footsteps…and I have to be brave.

So, appropriately enough, this is today’s music from Josh Groban - Brave

You wanna run away, run away and you say that it can’t be so.
You wanna run away, run away and you say that it can’t be so.
When you stand up and hold out your hand
In the face of what I don’t understand
My reason to be brave.

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

Anemia

Today's entry is more of a journal than anything else.  It’s 3:00 a.m. and I’m wide awake.  Some sleep habits that started in the hospital have followed me home and while they’re not bad habits, they’ll be difficult to incorporate into real life.  Right now, I’m sleeping when I’m tired, so last night while watching TV, I nodded off around 6:30. I checked in with family to let everyone know I’m OK and then went to bed about 9:00.  Six hours of uninterrupted sleep leaves me awake at…yes, 3:00 a.m. So, it’s not a bad thing, just a different thing.

My fourth round of stab-me-in-the-back chemo was supposed to happen yesterday morning, but my lab reports showed that my platelet count was below 5,000, which means that I could bleed very easily. So, instead of the chemo, I got a transfusion of platelets.  A normal platelet count is anywhere between 140,000 and 420,000. This is an expected part of the chemotherapy that I underwent the week before last. In fact, I’ll be getting some red blood either today or tomorrow which should help out immensely with respect to my energy level.

When I arrived at the hospital yesterday, I needed to stop by the lab to get my blood drawn before going up to the ward for my chemo treatment. I’m one who will take the stairs unless I have a broken bone, so I climbed the flight of stairs from the parking lot to the ground level and then went up another flight to the first floor where the lab is.  Those two flights winded me like I’d just run a sprint. I’d also been getting a throbbing headache if I coughed.  When I mentioned it to the doctor, he said, “It’s just the anemia.” OK, thanks for sharing.  He pointed out on my lab reports that my hemoglobin was intentionally low as was my hematocrit, both indicators of my red blood count. By explanation, the red blood cells are not just those that give your blood the pretty red coloring, but they carry oxygen from your lungs to every part of your body.  If your red blood count is low, then you can do the math and see that you’d become winded pretty easily. My white blood count is now officially neutropenic again (really, really low – 0.2; normal range is 3.5 - 8.3), so my paranoia about being around other people is shared by everyone. I got some antibiotics and antivirals to be on the safe side, but am still feeling just fine aside from a bit tired…again, thanks to the anemia.

When I walked down to the pharmacy to pick up my prescriptions, a little flier was on the seat next to me and as if cued up by the universe, the topic was “Anemia: A Major Side Effect of Chemotherapy.” And unlike the leukemia, I have every symptom listed for anemia: extreme weakness and tiredness, loss in concentration, shortness of breath, rapid heartbeat, headache, dizziness, paleness, and difficulty sleeping.  Lovely, huh? At least I know what this is…and getting a transfusion of blood will take care of most of these problems in the space of a few hours.

Music of the day – “Breathe (2 a.m.)” by Anna Nalick

...you can't jump the track, we're like cars on a cable,
And life's like an hourglass, glued to the table.
No one can find the rewind button, boys,
So cradle your head in your hands
And breathe, just breathe,
Oh breathe, just breathe

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

Critical Thought - In Critical Condition?

I heard a sound echoing on my iPad, my iPhone, my desktop, and my laptop all at the same time.  I’m either wired for sound or at the end of an electronic leash – perhaps a bit of both. Like most of you, I really enjoy being connected, but seriously, I could do without some of the political and religious rhetoric that reinforces fear and bigotry; and enough of the cat videos, please! In spite of the rampant narcissism and “TMI” that social media is, it’s great to be able to be a part of people’s lives, discretion and privacy be damned! I think it’s fair to say, you agree to some extent. After all, you’re reading these missives of my journey through mon odyssée de leucémie. Some of them, you may have noticed, are just observations; others are intensely personal.

What surprises me with so much information at our fingertips is that so many of us guard our opinions so fiercely that we become willfully and intentionally ignorant, insisting we are right. It’s far too easy to repeat someone else’s talking point from a talk show or tap out a query into a search engine and assume the response is true and accurate. After all, if the Internet or someone in the media says it’s true, it must be! It’s not hard at all to find some source that will agree with us or feed our paranoia, as untrue or misguided as it may be. And of course, by passing those thoughts on in an email or posting it on a social media platform gives it credibility because if enough people are saying it, again, it must be true. Fact-checking is unnecessary, of course.  Who are you going to believe - me or some other guy on a soap box? You know  me and I wouldn't lead you down the primrose path! For the record, if I put something up that is patently untrue, I hope you show me the source that proves me wrong. If it’s an opinion…well, you know what they say about opinions. Everyone has one.

I don’t want to downplay the importance of opinions, but I do want to be very direct in saying that I think that opinions should be the product of critical and deliberate thought processes. Just repeating something because someone – regardless of that person’s esteem in your eyes – sets a dangerous precedent and it sidesteps some important things that could impact your life for good or ill. I bring this up because it’s one person’s opinion that saved me while the other’s may have put my life in jeopardy. I’m not suggesting that either is less competent, had less of my interest at heart, or was outright wrong.  I’m not a doctor, but within an hour of each other, one opinion suggested that over the course of three to six months, I would be getting tested and treated while the other opinion saw a medical emergency with a prognosis of death in three months without treatment and insisted I be admitted for treatment immediately. I can’t overstate the obvious here – both doctors are highly intelligent, well-respected, and experts in the field. Both doctors have been described to me by everyone as brilliant and to this day, I implicitly trust them both. That said, I have to be the one to weigh their opinion and ask questions and formulate my own course of action.

This isn’t about sex, religion, or politics. It’s much more personal and the consequences potentially lethal if I screw it up.

I could have left that consultation and done some research. I'm an intelligent, college-educated guy with my skin in this game after all! I could have surfed the Internet and found some site that agreed with my line of reasoning. I could have found some sort of alternative treatment that would be less expensive, less invasive, and less painful, ranging from macrobiotic diet to apricot pits. I could have turned to a faith-based solution and trusted that I would be healed supernaturally. I could have found another doctor, I’m certain, who would have been more inclined to take a slow, reasoned approach to this rather than admitting me that very night. A second opinion is by no means out of the question in something like this. A second opinion is a good thing. Or, one equally valid option was to do nothing.  After all, I was without symptom and feeling just fine.  Any one of these courses could be correct and any one of them alone could have met with disastrous results. Now that over a month has passed since that first meeting, had the leukemia been left untreated, it’s highly likely that it would have progressed to the point of making me really quite ill and in a far more vulnerable and precarious place in getting treated. With as much cancer as was detected in my bone marrow, it's even possible that I might not have made it...but we won't go there.

All of these options were presented to me in one form or another by well-meaning people, some challenging me to change my treatment plan, some suggesting strongly that I get a second opinion from somewhere else, and one person suggesting directly about alternative medicine.  In the end, I had to evaluate everything and make my own decision. No one would or could do that for me. And as you all know, I don't rule out any part of these things in the role of treatment. Positive attitude and laughter, prayer and support from you all, a healthier diet, essential oils, consulting a team of doctors, and so on all contribute to my ongoing treatment and healing. It's all important. 

"Think, think, think!"

One of the greatest gifts I received in picking up some freelance writing gigs about 12 years ago was something that really torqued me off at first.  A friend of mine asked me if I would be interested in writing for a small start-up rag here in Salt Lake City. I thought it would be great as I was using writing as a catharsis in working out a personal crisis at the time. Writing and getting paid for it, even if it was just a little bit, sounded like fun.  I said I could write about pretty much anything except politics.  When the editor called to introduce himself, he asked me to write about, you guessed it, politics and opinion. Thanks, Brandon!  It was something I was completely unfamiliar with, yet that nudge gave me the impetus to think, not just find something and parrot someone else’s opinion in my own words, but to reason things through and present an idea.

The greatest gift I can give back to you is to ask you the question, “why” and trust that you’re thinking things through. If you disagree with me, I again hope you'll engage me not to argue, but to ensure I'm thinking things through as well. We so very much just want to be entertained rather than making more decisions. After a long day, even one more decision can be downright exhausting, but decisions are, in essence, your liberty. Don’t let someone else make decisions for you when it comes to the important stuff. Think for yourself.  In the words of the venerable Oscar Wilde, “A man who does not think for himself does not think at all.” After all, the last thing we all need is your critical thought in the ICU.

We live in an overly stimulated electronic society where we can allow ourselves to be the pawns of vitriolic talk show hosts and opinionated columnists or we can weigh what we hear and think for ourselves. That critical thought could save you from a well-meaning friend or relative’s misguided or misinformed judgment or it could save you from your own bad ingrained habits. I’ve found that being judicious is far more important than being right, because in the end, they merge and become one in the same.

Today's music - "Soul Meets Body"

I want to live where soul meets body
And let the sun wrap its arms around me
And bathe my skin in water cool and cleansing
And feel, feel what it's like to be new

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

WYSIWYG…or not.

I’m living proof that the old adage, ‘what you see is what you get,’ is just…wrong. Maybe you ascribe to the converse, ‘you can’t judge a book by its cover,’ which I also say is wrong, but what I do say about both of these pithy little sayings is yet another expression: ‘there’s more to it than meets the eye.’ After all, I walked into a hospital without a symptom that neither the doctor nor I could really put a finger on and say that I had a life-threatening illness, yet there was something neither of us could see that said otherwise.

Now that I’ve gone through two rounds of chemotherapy, I can tell you unequivocally that what you see with leukemia is not necessarily what you get. That’s mostly because all you can see other than lab reports of course, in my case, is the incredible shrinking waistline. Jenny Craig™ ain’t got nothin’ on the fabulous Leukemia Weight Loss® plan! I started my little odyssey in December, exercising regularly, eating sensibly and losing about a pound a week in the process.  I weighed 201 the week of Thanksgiving with a comfortable 36” waist. The day I was admitted to the hospital, I registered 185 and was proud of the fact that I needed to buy a 34” waist pair of jeans because of the exercise regimen I was engaged in. They fit perfectly and I felt great.  Just ask the doctor who read me the riot act about the pathologist’s report that I had 50% cancerous cells in my marrow and wanted to make me really sick with toxic chemicals! Today, I weighed in at 170 and had to buy another new pair of jeans that are a bit loose on me with a 32” waist line and a new belt because all the belts I have don’t have a hole for a 32.

I have typically ridden the line between a large and extra-large in shirts depending on the cut because I’ve lifted weights and while I’ve never been a gym rat, I had enough upper body to make clothing a challenge to fit well on occasion. Today, out of curiosity, I tried on a medium and it fit just fine. So, you can imagine my disappointment. I think it’s realistic to expect that my transplant will shrink me down as much as another 30 pounds if the experience of others I’ve spoken to is any indicator. The other side of this coin is that I’ll gain a good amount of it back and I’ve got some physical therapists and trainers lined up toj help me do it intelligently so I don't overextend myself in the zeal to get back to being less ... sickly? Ego, don't fail me now! Besides, I have a century ride to train for...and a lot of things on that growing bucket list to tick off, right?

If there’s anything I’ve learned up to this point in my treatment, it is that being in good physical shape has made an incredible difference, in terms of both time and degree, in how my body has responded to the chemotherapy. I don’t plan on doing this again (who does?), but should I find myself either injured due to no fault of my own or sick with something else, I need to stack the deck in my favor.  Good physical shape, good diet, and good attitude are all things we should have as part of our lives anyway, but to be sure, I’m again living proof that it matters for reasons totally unseen and certainly unforeseen.  What you see is not what you get.  In this case, it’s what was internal that made the difference on what was external. And isn't that often the case on so many levels?

I want to close out today by adding one other point about something you *do* see that reflects something internal – a smile. Everyone has something they physically look at that tells them whether or not they want to get to know someone else. Admittedly, in our sex sells culture, eyes typically wander, but in all honesty, the first thing that I look for in someone I want to get to know anymore is quite simply their smile. It tells me more in one glance than anything else because it feels like the rest of the face follows.  You can’t fake a smile that is full of joy, but if you’re smiling out of guile, it also betrays what's underneath and the rest of your features scream what your voice doesn't. This quote from the Dalai Lama seemed to encapsulate the things I was thinking.

I love smiles. Because of this I have the problem of knowing how to make more friends and how to get more smiles, in particular, genuine smiles. For there are many kinds of smile, such as sarcastic, artificial or diplomatic smiles. Many smiles produce no feeling of satisfaction, and sometimes they can even create suspicion or fear, can't they? But a genuine smile really gives us a feeling of freshness and is, I believe, unique to human beings. If these are the smiles we want, then we ourselves must create the reasons for them to appear.      

So, here’s my point. There’s a lot going on in all of us that we’re pretty good at concealing. What you see isn’t necessarily true and neither is the external a reliable indicator of what is happening underneath. This erstwhile sailor will throw out yet another saying for consideration, “Still waters run deep” to prove the point. There’s always something that we are incapable of hiding that betrays us to ourselves and others. Perhaps it’s something in a pathology report, maybe it’s a smile, or it could be a new pair of jeans. Who knows? We’re more open books than we realize and becoming comfortable in our own skins (even if they’re shrinking or wrinkling…or both!) makes what others see, more of what they do, in fact, get. In a word, it’s being authentic and it’s a very freeing thing...because you never know who's watching! So, smile :)

Music for today –  naturally it would be Nat King Cole, “Smile”

Smile though your heart is aching
Smile even though its breaking
When there are clouds in the sky, you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through for you

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That’s the time you must keep on trying
Smile, what’s the use of crying?
You’ll find that life is still worthwhile
If you just smile.


Be well, stay strong, and much love to you all...(insert smile here).

The "New Normal"

I’ve written in a previous post that that “normal” should never be the goal, but that we should be re-defining normal and actually living with intention. Having had two extended stays at the “other Club Med”, the ordinary things in life became rather intense for me today in a good way. I went to bed about 8:00 last night since I hadn’t gotten much sleep at the hospital; and I slept uninterrupted until my usual 5:30 at which time I got up, took my vitals on my own (yes, doctor, I am just as paranoid about my health and have no desire to be camping out in the ER!), took a nice shower, made some coffee, and cooked up my own breakfast.  Now, breakfast for me usually is a pretty low-key affair consisting of fruit and yogurt, but I was hungry, really hungry, so I made some potatoes with bacon and onions and a couple of scrambled eggs. Admittedly, this is still a pretty non-eventful breakfast. Unless, of course, you’ve been eating from a tray in a hospital room for about a month all told. Then, the smells, the texture, the very details about each bite just became intensely satisfying. It literally made me cry…and why? I can’t say exactly. I mean, I am a pretty good cook, but not that good. Why it would elicit tears is beyond me.

I’m sure gratitude plays prominently into the mix, but without digressing into the paralysis of analysis, it just comes down to redefining what ‘normal’ is. Normal used to take pretty much most everything for granted, including the simple act of drawing an uninhibited breath. Today, I found not just breakfast, but so much more to be vibrant and downright fascinating. I found myself smiling a whole lot more than I might have otherwise. I was also appreciative of both the good and the bad side to wearing a surgical mask in public.  So many people are a bit scared seeing someone wearing a mask that they make eye contact long enough to register the mask and look away very quickly. They won’t talk to you, but in making my grocery run, two workers at Smith’s (my local grocery chain) made a point of greeting me and engaging me a bit. That hasn’t happened before when I've been behind the façonable yellow mask.  In fact, when my daughter was here, the only people that would talk to me on my walks around the block were panhandlers.  Everyone else, including the family with small children made haste to run away, literally.  Run away from the guy with the skull cap, glasses, and mask. See if I give out candy next Halloween…and all this time, I thought it was the fancy hair-do! Go figure.

'Normal," today, isn’t just something I’m having to redefine because of what I can and cannot do thanks to temporary physical or medical limitations. It’s something you and I both have the choice of discovering and it’s a product of outlook, of attitude, of refusing to be defined by circumstances or expectations. It’s accepting that perfect will never be something we can achieve. And that’s not something advertisers and retailers and a host of others want us to believe, but let’s be clear about this: perfection is the harbinger of death. You can perfect a technique, you can perfect a look, but when you get to that stage of being perfect, you stop trying. The act of struggling is what keeps us alive and, for better or worse, it brings us together. To struggle, to strive for achievement and productivity is to find meaning and to live. Is it any wonder that when people retire, they find something to keep themselves engaged? Those who don’t find some way to continue participating in their culture or family languish and fade away to their demise. I look at my own grandfather who taught himself computer skills and to self-publish; and well into his 90s, translated Turkish literature, selling it on amazon.com. (Click here to see the list of titles that with the able editing help of my grandmother, you can still enjoy.) He wasn’t into making money on it, but he was active, lucid, and contributing. Had his eyesight not given out, I seriously have to wonder if he’d have made it to 100. He was just that kind of guy and one whose positive example I want to emulate.

Of course, the other part of the new normal is a bit of attitude. I used to be so sober-minded that people called me, “Your Seriousness.” Where’s the fun in that?  So, part of my new ‘normal’ attitude has an edge and is a whole lot of fun.  Here I am “pole” dancing, replete with my admirers stuffing dollar bills into my waistband. Not exactly what you thought pole dancing was all about, was it?  And just imagine the kind of coordination and lack of inhibition that took!

 

And here’s something that just came in the mail today to poke fun at myself. I think I’ve found my sideline business for those of us afflicted with the side effects of chemotherapty, but haven’t lost our sense of humor.

So meet the new ‘normal.’ It’s going to look different tomorrow than it does today, but one thing for certain, it’ll be a whole lot funner than yesterday!

Today's music:  "Good Life" by OneRepublic.

Oh this has gotta be the good life
This has gotta be the good life
This could  really be a good life

 

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

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!

Grace

One of my favorite things to do on Sundays is to leisurely go through the newspaper. I’ve always loved the color comic pages, seeing how far I can get on the crossword puzzle, dreaming of far-off places in wandering through the travel section, and as I’ve become less of a curmudgeon and more of a thinker, I’m enjoying the idea exchange on the op-ed page. I do a little window shopping through the circulars and finish up with Parade, a feature ‘zine that reminds me of a cross between Readers’ Digest and Ladies Home Journal tucked away in the folds of the big package of newsprint.  It has a little celebrity gossip, a few human interest pieces, recipes, and some cheesy ads, but I’ve been looking at it since I was a kid, so it’s a habit. Their cover stories are usually worth taking the time for a quick spin.

This Sunday’s cover hit home as it was a story of Good Morning America’s Robin Roberts who recently returned to work after being treated for a condition very similar to mine. Roberts underwent a bone marrow transplant for myelodysplastic syndrome (MDS), a condition that is often a precursor to leukemia and it is what I was initially tested for when I had my first bone marrow biopsy. In reading the article, I was once again pulled back to her good humor in the midst of some rather rough days and felt a kinship with her on a number of levels even though I have yet to get as far as she has. My hope is to be able to carry on with the kind and capacity of grace that she exudes publicly.

One of the key things I walked away from the article with was something I’m enjoying as well.  She had a great support network, both professionally as well as from her family.  I have to say that from the time I found out that there was a possibility that I could be sick, I have been treated like family by those where I work, from the top down. It’s especially noteworthy that I’ve been with the company for just a few months, but you can be sure they have the kind of loyalty from me that would be hard fought anywhere else.  Hunt Electric, Inc. is not just a solid, growing company, they still “get it” in a day and age where other companies will fall by the wayside because of employee dissatisfaction. The more I find out about this new professional home of mine, the more impressed I become…and clearly from what I hear from others in the company, I’m not alone. Having that kind of support in addition to family and friends buoying me up has taken such a load off and allowed me to rest when I needed it and keep me mentally engaged when I have been able and not worry about the details when I’m awake at 4:00 am, which is rather frequently these days!

Many people might call this favor and kindness a grace of sorts. I like that term because it confers something that we don’t see often these days. I hope I don’t sound old by saying that, but it feels like expediency and facts all too often trump good will and compassion. We all crave the kind of human interaction that feeds these qualities that make us smile, but all too often we settle for less. We get jaded from the stories we hear about others getting screwed by insurance companies, politicians exercising their best spineless double-speak, and the sensational tabloid media. We’ve forgotten what it’s like to be a community and we’ve lost the feeling of what it is to be a neighbor and a friend.

But that’s not always true, is it?

My experience here has been that people will rise to the occasion if you give them an opportunity. I may still be put off by the guy at the freeway off-ramp, but I’ll still feed someone who is hungry; I may be overrun by advertising for truly worthy causes that, replete with the perfect music, images, and celebrity endorsement, all tug convincingly on my heartstrings, but I’ll still donate or get involved myself; and when my co-worker, my neighbor, or my family member is struggling, I’ll continue to do whatever I can to make sure they feel my support. I hope you won’t be manipulated by someone’s guilt-inducing message, but will follow your heart to do what it is that brings you joy in giving to others. I can tell you first-hand that when someone gives freely to you, even if it’s just their presence, it brightens the room and smiles abound. It’s once again the thing that has helped me to move out of a hospital room well ahead of schedule as I’m writing this from home instead of that nifty motorized bed.  They even removed my PICC line before leaving today which tells me that someone’s rather optimistic about me getting a donor rather soon. And I am so ready to be done with this as you all well know.

There are some quiet noises behind me that tell me I’m home – the bubbling of some potatoes on the stove, the humming of my toaster oven making a pot pie and the distinct lack of noise from beeping IV poles or nurse calls. Those little things make me smile and I can thank you for your continued prayers, positive thoughts, and support that has given me the grace to continue with a smile.

Today's music - Boys II Men - "Thank You"

'Cause even though when times got rough
You never turned away
You were right there
And I thank you (thank you)
When I felt I had enough
You never turned away
You were right there
And I thank you (thank you)

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

 

 

Todd 5.0 – Unplugged

My lovely, considerate, and (fill in the really nice adjective here) sister brought up some Easter leftovers for dinner this afternoon during her visit.  And while I’m deeply appreciative for the really good food here at the VA Hospital, this really hit the spot!  Some spiral cut ham, “funeral potatoes” (a Utah specialty akin to potatoes au gratin anywhere else in the world), and some carrot cake was mahvelous, dahling! She arrived just as my new hem/onc doctor was finishing up my third of four stab-me-in-the back (a.k.a. intrathecal) chemo procedures.  I was about to get plied with a second dose of happy juice, so she was in the unique position to interrogate me, but alas, she relented from the hard core techniques and we just had a great brother-sister conversation about having to replace underwear thanks to the side effects of the first round of chemo. I can tell you’re gaining all kinds of valuable information from this blog about topics you’d never imagine possible. I’m just full of surprises, and even more after a little chemical helper (and some Easter leftovers!).

So, as our conversation meandered from one profound topic to another, it finally turned to something of substance as to the why my life is on hold. I don’t know that we came to any kind of real conclusion, but the consensus was that I’m on Version 5.0. I can look back on my life as I’m sure you can yours and see some rather distinct stages where one chapter of life comes to a rather well-defined close and the page is turned to reveal what feels like a completely new life. Childhood really is just the foreword to the tome that is my life, but once I graduated from Annapolis and began my naval career, Todd, Version 1.0 was released. As I grew and changed, I remained the same base model, but the way I operated was different. Sometimes, that was because of the environment, sometimes it was because of a complete redesign of my ‘operating system.’

The treadmill of sorts that was the platform for Todd, Version 4.0 was has been retired and Todd, Version 5.0 is in now in development. Part of what I think is happening is akin to what a musical artist does when they create something called, unplugged where the art is stripped to its essence. I think that is what the end result of me being pulled off of the daily grind treadmill for leukemia treatment is – refining that person who I am.  Version 5.0 will still be me, but more so. Of course, anyone who knows anything about software knows there’s some beta testing involved and that means some gaffs, crashes, and errors, but in the end, you get a really good product.  I guess that’s my way of saying bear with me during the metamorphosis. I’ll be a quality product!

“Labels are for soup cans,” my friend Henry once told me and as much as I have tried to shun them, they somehow find me still. Some labels have great connotations and others, not so much, but for whatever reason, we seek to define ourselves by them. I’m hoping that Version 5.0 of me sheds the labels that the world would try to define me and rather reflect the part of me that lacks description, that is just me. Getting there, of course, means to reject my own image of what I think I should be, of the rat race standings, and cultural expectations. In a sense, it feels like I’m breaking free of the teenage years where peer pressure holds sway. The difference as we age, of course, is that the peer pressure turns into keepin’ up with the Joneses and having the best big boy toys. Yeah, I know, I play the game, too, but at some point, the effort to keep up appearances, the credit card debt, and the mind games just get to be too much. Simplicity, freedom, and authenticity just feel better…and it’s all far less stressful and much less expensive!

The rain outside and the chemo treatment made an out-of-doors walk impossible today, but I’m still looking out my window for an out-of-body experience to some place beyond the hospital.  Since the April showers began today, I’m looking forward to a beautiful display of May flowers and thankfully, my doctors conferred with each other and there’s a likelihood I may be able to convalesce at home rather than in this hospital room. It helps that I live only ten minutes away and that I’m pretty paranoid about my condition.  Being engaged with the doctors has paid off, so I hope that tomorrow’s blog entry will be made from home.

Today’s music is from Des’ree – Ya Gotta Be.

Ya gotta be
Ya gotta be bad
Ya gotta be bold
Ya gotta be wiser
Ya gotta be hard
Ya gotta be tough
Ya gotta be stronger
Ya gotta be cool
Ya gotta be calm
Ya gotta stay together
All I know, all I know is that love will save the day!

Be well, stay strong, and much love you all! :)

Pain and Suffering

Ah, what a topic, huh? It’s a topic I can’t speak about with much authority as I have been extraordinarily healthy most of my life.  That’s not to say that I haven’t been injured or experienced my own ups and downs, but clearly I haven’t had to walk down the road of chronic pain or extended physical or emotional discomfort. For those who have issues with pain and suffering, I’m much more empathetic now than I used to be and I suspect that after my treatment is over, it’ll be all the more so. That’s not something I revel in, of course, but it’s something I know is part of healing.

At the risk of sounding cliché, pain is important. It’s something that preserves, warns, and protects us from something really serious. Those afflicted with Hanson’s Disease (leprosy) pray for the gift of pain while we in this country can rattle off the trade names of a couple of dozen pain relievers without much effort. While there are certainly times a pain reliever is appropriate, more often than not, we mask problems with a pill when we should be paying attention to what the pain is telling us. Pain is good.

I think it’s important to embrace the pain. Now, before you label me as masochistic, understand that what I’m saying is that what I mean by embracing the pain has more to do with understanding what your body is telling you may be wrong rather than taking pleasure in hurting. Obviously, there’s a distinct difference and while I don’t enjoy pain and suffering at face value, going through these experiences have brought me closer to others and have transformed me into someone different, better I hope. Again, I don’t look forward to being miserable and I won’t allow these experiences to define who I am, I do see these bouts with hardship as opportunities. Being bitter gets you nowhere except perhaps a group of compadres who are equally miserable with whom you have nothing in common except some sour grapes that you can share with each other. Talk about a healthy relationship!

I have been giving some thought to this topic more because I know that even though the fun-ness I’m experiencing with the chemo currently isn’t at all pleasant, the transplant process will make this all look like a cake walk. In fact, when I was chatting with another vet who had been through the marrow transplant process. He said he had basically forgotten about two months of his treatment because he was medicated through much of it. He has a different condition and other complications, but he was pretty direct with me that it was rough and that even a couple of vets there didn’t survive the transplant process because they wouldn’t get out of bed. They just died. It was more sobering to hear from him about the road ahead of me than from the doctor. I did ask my doctor about this and she did acknowledge that medication was there for a reason. Rather telling, huh? On the other hand, she was direct as well in saying that your body knows when it’s ready and suddenly you feel good again. After having had a couple of blood transfusions during my first round of chemo, I totally get that. It was amazing what the difference a little bag of blood could do.

Having finished dose 6 of 6 of this course of chemo, I’m still feeling really good and full of energy. My appetite has been really strong and with a little help from the Mr. Coffee down the hall, I’m keeping regular and alert. Although there is coffee served at every meal I get, it’s really weak and I’m amazed at what an impact regular strength coffee is doing! I asked my mom bring in some nice coffee and a box of Girl Scout cookies from my apartment for the nurse’s station to show my appreciation.  We gotta take care of those who take care of us, right?  They are my superheroes after all!

My hem/onc doctor is rotating back to the Huntsman Cancer Institute and I’ll be meeting a new doc who is rotating to the VA tomorrow, so I’ll be able to get a better feel for when I can expect to be discharged. I’ll be getting my third of four stab-in-the-back (intrathecal) chemo treatments tomorrow.  I’m pleased that these haven’t been nearly as painful or uncomfortable as they sounded and they have actually taken care of the one symptom for the leukemia no one saw as such: double vision. Things are happening.

The weather is getting better and although I do have a window, my view only serves to make me want to get outside all the more.  Thankfully, I’ve been getting out of doors long enough to soak in some much needed sunshine and fresh air outside of the four walls of this hospital room.  Spring Fever is much more intense than I ever remember. No surprise there, I’m sure, but that’s hardly real pain and suffering, is it?

There’s no doubt I’ll have more to say on this subject as I progress through my treatment and I experience some really unpleasant things during the transplant procedure, but I bring it up now again because it’s something that is central to our human experience, something we have to learn to not just accept or tolerate, but embrace as natural and necessary and it’s not an easy thing to say when all you want to be is comfortably numb. For the time, I endeavor to be strong and optimistic and continue to thank you all for being my support. Time for my meds ;-)

Music of the day – I Get Knocked Down (But I Get Up Again) by Chumbawamba.

     I get knocked down
     But I get up again
     You're never going to keep me down

Seems appropriate, don’t you think?

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